Tag Archives: Fibromyalgia

One More Update

Love

 

One More Update from Brooke.

Her doctor was able to get hospice care reinstated for her for 60 days.

Today, we live in a time where, being sick is not acceptable, and people who have misunderstood chronic illnesses, there aren’t many medical practitioners who are cut out to care for them.  Not only not cut out to care for them, they have no compassion and pass the patients off as depressed.

Today, it seems as if you don’t have something like cancer or AIDS, your illness doesn’t qualify, as in Brooke’s case, her hospice care was discontinued because she wasn’t “considered to be dying.”  That’s just so awful.

People with chronic illness who are basically living a “living death”, there are no words because I can’t even think of the words because I’m one of those people.  I know I myself will probably die alone, no hospice, no support, nothing.  And I know there is nothing I can do about it. I have come to accept it because unfortunately that’s the way it is.

I ask everyone to pray for peace and comfort for Brooke during this time.

 

Documenting M.E.

Dear Friends,

Recently there have been a lot of questions in the community about what has happened to me and where I am with things. I am now very near the end of life, and writing posts has become next to impossible, but I wanted to try to get one more out. This post will be written in many parts, and may seem rough around the edges, but it is the best that I can do at this point. I know you will understand.

First, regarding care. My initial reevaluation for hospice care was denied – in part due to misinformation coming from the whole CFS mixup. After this, my doctor agreed to treat me himself, without the aid of nurses since he couldn’t find a way to get any into the home. Things began going downhill so fast, however, that he recently talked the hospice team into readmitting me…

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“GET” And The House Of Commons Gym Part 4

 

 


Graded Exercise Therapy and The House Of Commons Gym

Part 4

In Memory Of M.E. Patient

Brynmor John

18 April 1934 – 13 December 1988

BrynmorJohnMemorial

 

 

BrynmorJohn1959_1
Brynmor John Circa 1959

Compliments of Flying Officer Pam Gerrity

 

From The Nurse Point of View! 

I will point out again like I said in my previous blog posts, i’m coming from an R.N. point of view for the benefit of the patients because I was an active R.N. until I was no longer able to work because of M.E.

I actually couldn’t respond from a patient point of view because I would lose focus on the subject, and I would end up sounding more like an angry patient than a nurse who is very disappointed because of the lack of the standard of patient care in regards to this illness.

 

Review Of The Facts!

According to Malcolm Hooper’s “Magical Medicine: How To Make A Disease Disappear:”

 

“On 13th December 1988 Brynmor John MP died from ME/CFS. His experience of the illness was all too familiar:

Though there is only a slight gradient from our house to the main road, it could have been the North face of the Eiger. I just could not get up it’. -Brynmor John

He found himself unable to dress; the slightest exertion exhausted him and it took days to regain his strength.

He was irritated by the profusion of psychiatric comment and was trying to ensure better understanding of ME/CFS.

Brynmor John suddenly collapsed and died as he was leaving the House of Commons gym after having been advised to exercise back to fitness.”

.

Let’s Assess!

Brynmor John could no longer walk on that slight gradient from his house to the main road,  as he stated

“I could just not get up it.”


Prior to becoming ill Brynmor John was able walk up that gradient, otherwise he wouldn’t of made that statement.

Brynmor John was to weak to put his clothes on and  he could no longer tolerate exertion.

Brynmor John also suffered the abnormal recovery time to the slightest exertion. as “it took days to regain his strength.”

Prior to becoming ill, Brynmor John did not have a problem dressing before he became ill nor did the slightest exertion exhaust him, otherwise that would not have been noted as well.

Remember, Brynmor John was only 54 years old.  A healthy 54 year old man or woman would not have a problem walking up a slight gradient, would not have a problem dressing,  nor have a problem tolerating exertion.

“Abnormal Recovery Time” is expected as we know in patients with M.E. after exertion.


Abnormal Recovery Time

Abnormal recovery time was already a known symptom of M.E. or Myalgic Encephalomyelitis in 1988.

The 1986 Ramsay Definition for Myalgic Encephalomyelitis Compliments of NAME-US.org Stated:


“Neurological disturbance – an unpredictable state of central nervous system exhaustion following mental or physical exertion which may be delayed and require several days for recovery; an unique neuro-endocrine profile which differs from depression in that the hypothalamic/pituitary/adrenal response to stress is deficient; dysfunction of the autonomic and sensory nervous systems; cognitive problems.”


Brynmor John was suffering other symptoms in addition to the abnormal recovery time!

 

“Not A ‘Seasoned Veteran'”

Malcolm Hooper’s

Magical Medicine: How To Make A Disease Disappear stated that Brynmor John

was trying to ensure better understanding of ME/CFS,” 

which meant he was a newer patient.

Brynmor John was not a “seasoned veteran” as far as being an M.E. patient, Brynmor John was still trying to learn about the illness.

Since Brynmor John was not a “seasoned veteran” of M.E.,  Brynmor John would not of known if the additional symptoms he was suffering were additional complications.


A Closer Look:

I did a search and I found where Brynmor John lived so we could take a look at the property where he lived and the gradient that he stated he could no longer walk up on the way to the Main Rd.

Brynmor John’s actual home address was:  Yale Haven, Station Rd, Church Station, Pontypridd, Rhonnda Cynon Taff, CF38 1AF, U.K. compliments of Welsh Biography Online and Google Maps

Yale Haven is the name of Brynmor John’s house.  Many houses in England have names instead of being noted as a number in a street address.


Google Map of the area:  

The map shows “Yale Haven” which was Brynmor John’s house.
Just north of Yale Haven is  Main Rd.  Station Rd is on the left of Yale Haven.

BrynmorJohnHouseMap


Google Maps Street View:

This is the Station Rd view of Brynmor John’s property which is in back of the trees on the right.

 YaleHavenStationRoadView

 


Google Maps Street View of “Yale Haven”:

Yale Haven, which was Brynmor John’s house is on the right. The Main Rd is on the left.

BrynmorJohnHouse_02

 

The gradient Brynmor John was talking about is on the right side of the house where the driveway is that leads to the street to the Main Rd. 

As you can see, that is a not a long walk.

A person with Mild or Moderate ME could walk that short walk and suffer their post activity exacerbation of symptoms after the fact.

Brynmor John’s symptoms he was experiencing in addition to the abnormal recovery time was different, Brynmor John stated:


“‘Though there is only a slight gradient from our house to the main road, it could have been the North face of the Eiger. I just could not get up it’

Brynmor John could no longer walk up that slight gradient at all!

Brynmor John was 54 years old.  If  Brynmor John was a healthy person, he should not have had a problem walking on that gradient.  The gradient is not a steep gradient.

Up until Brynmor John became an M.E. patient he was able walk up that actual gradient to the main road, if he could not walk up that gradient going to the Main Road,  Brynmor John would not have made the statement:


I just could not get up it!”


Brynmor John should not have had a problem continuing to walk on the property where he lived if the exercise prescription was the proper recommendation.


Was Something Missed?

Brynmor John was advised by his doctor to “Exercise his way back to fitness” as stated in “Magical Medicine: How To Make A Disease Disappear.”

Brynmor John had listened to his doctors advice and attempted to “exercise his way back to fitness” as his doctor advised.

Instead of becoming “Fit,” Brynmor John not only suffered the increase in his abnormal recovery time, he became so weak that he could not dress, he could not tolerate exertion, and he could not walk up the gradient to the Main Road from his house.

We also see no further documentation as far as Brynmor John’s doctor investigating further as to why Brynmor John’s condition was not improving and why Brynmor John could not walk up that gradient.

Brynmor John was still exercising at the House of Commons Gym because he was exercising right before he died, December 15th, 1988.

Brynmor John was also still working as of December 5th which was the day of his last noted contribution to UK Parliament regarding “Environmental Problems.”

Brynmor John was still both working and exercising.

Brynmor John did not improve.

Not only did Brynmor John not improve, Brynmor John suffered the worse complication that one could suffer, Brynmor John went into Cardiac Arrest immediately after he was exercising while exiting the House of Commons Gym.

 

Why did Brynmor John’s doctor not listen?

Malcolm Hooper’s Magical Medicine: How To Make An Illness Disappear” stated that Brynmor John:

“was irritated by the profusion of psychiatric comment.”

The “profusion of psychiatric comment“that Brynmor John was talking about was the intrusion of the “psychiatric lobby” which was led by Professor Simon Wessely and his colleagues known as the “Wessely School.”

The school of thought of  the “profusion of psychiatric comment” or “Wessely School” believes that M.E. is a myth, a psychiatric disorder, or what Professor Wessely believes to be “functional somatic syndrome” or behavioral disorder where the patient has medically unexplained fatigue caused by inappropriate illness beliefs.

Thus, Brynmor John’s doctor did not “hear” Brynmor John’s complaint of symptoms because Brynmor John’s doctor was of the school of the “profusion of psychiatric comment“, better known as the belief of the Wessely School definition of “CFS/ME” which is what the Wessely School classify M.E. as.

The “profusion of psychiatric comment” or “Wessely School” belief for the treatment of “CFS/ME” is psychiatric and their treatment for “CFS/ME” is what is called “CBT” or Cognitive Behavioral Therapy and
“GET” or Graded Exercise Therapy.

The “Wessely School” belief for the treatment of Cognitive Behavioral Therapy is to “cure” the “dysfunctional beliefs” of patients who only “think” they have a non-existent illness called “ME”,

The “Wessely School” belief for the treatment of “GET” or Graded Exercise Therapy was to reverse the change that resulted in deconditioning in patients who avoided activity because the patients had a false belief of illness.

 


A Few More Clues!

 

All of the M.E. patients who are reading this, what do some of our lab results show?

If you know the different items in the lab results,  which of those items can affect the heart?

What can those items do to the heart?

Can you think of another M.E. patient who died of Sudden Cardiac death because that patient wasn’t examined further?

If you know who that M.E. patient is who I am referring to, what was wrong with that M.E. patients heart?

 

 

If you can identify what is being described and asked in the questions above:

-Should Brynmor John’s doctor continued to have allowed Brynmor John to keep exercising “his way back to fitness?”

-Should Brynmor John’s doctor have possibly known what the problem was according to Brynmor John’s symptoms and discontinued  Brynmor John’s exercise prescription to investigate further to confirm?

 

What did Brynmor John’s doctor miss that caused Brynmor John to suffer sudden cardiac death after he exercised in the House of Commons Gym?

??????????

 

Fellow Patients And Others:

If you think you know the answer, please leave it in the comments.

If we the patients are to be effective advocates for this illness,  the complications must be pointed out, not just the symptoms that make this illness unique in comparison to other illnesses.

The discussion should not be “Do M.E. or “CFS” patients die”, the discussion should be, what are the specific complications that M.E. or “CFS” patients die from and why do those complications occur!

I included “CFS” because patients are diagnosed “CFS” or “ME/CFS”  here in the United States.

There is no need to dance around the truth about this and other complications!

M.E. patients have serious and potentially lethal complications and they must be pointed out!

As the complications are discussed,  this information will circulate via the internet and social media that we didn’t have 25 years ago where we could not do that.

Because we as patients could not do that 25 years ago, this illness has gone from the infectious disease department to the psychological propaganda department.

Brynmor John died in 1988 the other patient I pointed about above died 16 years later  because of the same thing which was missed causing Sudden Cardiac Death that I did not state yet.

Do you think Brynmor John and the patient who died 16 years later have been the only two patients who died of  Sudden Cardiac Death because something major was missed because of something that could’ve been very easy to diagnose?

 

Yes, I say “EASY TO DIAGNOSE,” and I shake my head because I was an active R.N. and I knew this and I cant believe that there are many physicians today who do NOT know this!

BeNiceToNurses

 

To Be Continued……..


The whole idea you can take a disease like this and exercise your way to health is foolishness, it is insane.”~Dr. Paul Cheney~

 

“The Other Side Of The Stretcher” (c) 2014

This blog is not for medical advice.
For medical advice, you must speak with your physician!


“GET” and The House Of Commons Gym Part 3

 

   Graded Exercise Therapy and The House Of Commons Gym

Part 3

In Memory Of M.E. Patient

Brynmor John

18 April 1934 – 13 December 1988

BrynmorJohnMemorial

 

 

BrynmorJohn1959_1
Brynmor John Circa 1959

Compliments of Flying Officer Pam Gerrity

 

From The Nurse Point of View

I will point out again like I have before, remember, I’m coming from an R.N. point of view for the benefit of the patients because I was an active R.N. until I was no longer able to work because of M.E.

I actually couldn’t respond from a patient point of view because I would lose focus on the subject, and I would end up sounding more like an angry patient than a nurse who is very disappointed because of the lack of the standard of patient care in regards to this illness.

 

How Do the Readers Know that The Nurse Point of View For This Particular Blog Post They Are Reading Here  Is Actually Correct?

If you are reading this blog for the first time, I was actually an active Registered Nurse in New York City, before I became too ill with M.E. to no longer work. Those who know me, know that to be true.

One of my specialty areas was Cardiac. I worked in the Cardiac Care Unit of the medical center in New York City, which is featured in the YouTube video below of a current TV program. There are no actors in the video and everything filmed were actual events 2 years ago, while they were filming to make the program. This video would pretty much give you an idea of how busy any of the ICU’s was in that type of medical center, including the CCU where I worked.

I was also a Cardiac Rehab nurse in 2 different centers in New York City as well.

 


The hospital is New York Presbyterian Hospital (known as New York Hospital/Cornell Medical Center when I worked there), which has always been in the top 10 hospitals in the US for Cardiac Care and Surgery. You can read information about their Cardiology department here , so you can decide whether or not I actually know what I am talking about.

 

What actually happened to Brynmor John? 

Why did this not have to happen?

Why was the doctor recommendation or prescription wrong?

Why was this actually wrongful death and negligent malpractice?

On The Scene Cardiac Arrest Event

Before I answer those questions, which I will start to do in Part 4, I wanted to find a video on YouTube so you can see an actual demonstration on the scene of a cardiac arrest response from the emergency services.

In the entirety of this blog post, I feel that everyone must know the different aspects of Brynmor John’s case in order to understand the potentially lethal treatment recommendations that Brynmor John’s doctor prescribed him, which includes the scene from the Emergency Services video, so you can see why Brynmor John could not be successfully resuscitated. This is so everyone can see just how serious this unethical treatment protocol is.

It took a little while to find an older version of the video  below, because I want you to see what the realistic version for 1988 would be, which happens to be the year Brynmor John died.

The reason being is that the CPR protocol was different in 1988 than it is now. BCLS or Basic Cardiac Life Support is revised each year in order to increase the survival rate. If you happen to know what the current CPR protocol is, you can see that it is an older protocol or obviously slower than what the protocol is today.

I could not find a video old enough to show you one where the Emergency Services did not have a defibrillator, because the ambulances did not have defibrillators in London until 1990. I found that information here when I was researching to find when defibrillators were originally in the ambulances in England. The reason being is because Brynmor John as we know died December 13th 1988.

Before I show you the video, I have to explain why the defibrillator would be important!

 

Why would the defibrillator be important?

If you take a look at that link above about where I found when defibrillators were originally in the ambulances in London, you will read that most cardiac arrests occur outside of the hospital.
Professor Frank Pantridge who along with Dr. Geddes of the Royal Victoria Hospital of Belfast, who actually produced the first portable defibrillator in 1964, and who was referred to as “The Father Of Emergency Medicine” or “Grandfather of Prehospital ALS or Advanced Life Support” believed that “immediate correction of v-fib should be done at the scene of the event“, which we know to be true in the hospital as well.
ProfessorFrankPantridge

Professor Frank Pantridge

JAMES FRANCIS “FRANK” PANTRIDGE, MD, CBE
October 3,1916 – December 26,2004

 

What is V-Fib or V-Fib Arrest?

V-Fib is Ventricular Fibrillation, which is a lethal cardiac arrhythmia during cardiac arrest.  If you are not resuscitated from “V-fib” with a defibrillator, you will die.

Ventricular Fibrillation looks like this on the EKG:

VFib

 

A Normal EKG or what is called “Normal Sinus Rhythm” looks like this:

Normal Sinus Rhythm

 

When someone goes into Cardiac Arrest, every second makes a difference because oxygen is not getting to the brain via the pumping of the heart. You only have minutes to save the patient before brain death occurs. The longer you wait to do cardioversion or “shock” the patient with the defibrillator to shock the heart back into a normal sinus rhythm the chances of saving that patient are less to none.

Here is information from the American Heart Association About CPR. You never know, you may be the one who saves your loved ones life because you knew how to do CPR!

Video of an actual  On the Scene Cardiac Arrest Event:

 

This video was actually done in Chicago in 1994 by the Chicago Fire Department Emergency services, where they responded to a call for someone who was found unresponsive, in cardiac arrest.

As you know, you can see the timer on the bottom right of the video. It takes the EMS over a minute to get there. This was probably the case when the EMS responded to the scene where Brynmor John was or depending on how far away the EMS was from Brynmor John’s location, which was the House Of Commons Gym.

If you notice, one of the firemen is doing CPR, another is providing the airway or breathing for the patient, that bag he is holding is called an ambu-bag. Another fireman is charging the defibrillator which is the portable machine that have wires which are connected to those paddles he is holding that he is going to put on the man’s chest to try to defibrillate the patient. The EMS people who responded to the scene where Brynmor John was did NOT have a defibrillator because the year was 1988. Remember, ambulances in England did not have defibrillators until 1990.

DefibPatient

If you see the screen on the cardiac monitor, the black screen with the wavy line. You don’t see the “Normal Sinus Rhythm” that is in the EKG example above. The man didn’t respond.  The protocol is to shock the patient 3 times in a row.  It looks like the video was probably edited. You only see them shocking the patient one time, and then the video shows the cardiac monitor, which shows that the man didn’t respond. Sometime during that response, they did put an IV to give the patient emergency drugs.

Asystole

 

The flat or almost flat wavy line is called Asystole or complete cardiac standstill or arrest. That man did not respond. The EMS from the fire department put him in the ambulance to bring him to the hospital because the doctor in the emergency room would be the one to pronounce the patient deceased at that point.

 

Usually, when they remove the cardiac arrest patient from the ambulance, the emergency room doctors and nurses would’ve been out there waiting. They would be moving much quicker to get the patient inside to the emergency room if they were expecting to receive a patient, which they would’ve known ahead of time that responded to the Advance Cardiac Life Support, which was administered by the fire department emergency services.

As you can see in that video, there were no doctors and nurses waiting outside. They already knew ahead of time what the condition of the patient was because the EMS, which were the firemen in that video who radioed ahead to let the hospital know that they were bringing this man who would be “DOA” which means “Dead On Arrival.”

That man did not survive! 

The fireman was doing CPR while they were bringing the patient on the stretcher into the emergency room because he was not officially pronounced deceased if you are wondering why the fireman is doing that. Only the doctor can do that, so the fireman or paramedic has to keep doing CPR until the doctor pronounces that the patient is deceased.

DeathBrokenHeart

 
Compliments of Baseline Of Health Heart Foundation

 

What you just saw was the same type of scenario that happened to Brynmor John after he went into cardiac arrest, while he was walking through the doors of the House of Commons Gym to go home.

We know that Brynmor John didn’t make it like the man in the video did not make it.

Brynmor John died December 18th, 1988 after exercising in the House of Commons Gym as per his doctor recommendations or as prescribed by his doctor Malcolm Hooper stated in “Magical Medicine:”

 

“Brynmor John suddenly collapsed and died as he was leaving the House of Commons gym after having been advised to exercise back to fitness.”

 

WrongfulDeath5

To be continued in Part 4-> Click *HERE*.

 

“The Other Side Of The Stretcher” (c) 2014

This blog is not for medical advice.
For medical advice, you must speak with your physician!

 

 


“GET” and The House Of Commons Gym Part 2

 

 

Graded Exercise Therapy and The House Of Commons Gym

Part 2

In Memory Of ME Patient

Brynmor John

18 April 1934 – 13 December 1988

BrynmorJohnMemorial

 

 ]

BrynmorJohn1959_1
Brynmor John Circa 1959

Compliments of Flying Officer Pam Gerrity

 

What Really Happened To Brynmor John?

First we have to look at the situation!

 

According to Malcolm Hooper’s “Magical Medicine:”

On 13th December 1988 Brynmor John MP died from ME/CFS.
His experience of the illness was all too familiar:

‘Though there is only a slight gradient from our house to the main road, it could have been the North face of the Eiger. I just could not get up it’ -Brynmor John

He found himself unable to dress; the slightest exertion exhausted him and it took days to regain his strength.

He was irritated by the profusion of psychiatric comment and was trying to ensure better understanding of ME/CFS.

Brynmor John suddenly collapsed and died as he was leaving the House of Commons gym after having been advised to exercise back to fitness.

 

According to MedLibrary.Org and Wikipedia:

Brynmor Thomas John (18 April 1934 – 13 December 1988) was a British Labour politician.
John was Member of Parliament for Pontypridd in South Wales from 1970 until he died in 1988 at the age of 54. During the Labour government of 1974 to 1979, he was a junior Defence minister for the Royal Air Force (RAF) (1974–1976) and a Home Office minister (1976–1979).

The circumstances of his later life and premature death are cited by physicians postulating one school of thought concerning treatment of chronic fatigue syndrome. Brynmor John had been diagnosed with the illness, and died suddenly immediately after exiting the House of Commons gym. He had been following an exercise regime based on what is argued to be unfounded medical advice: that sufferers may exercise their way toward a cure for the illness

 

Lets take a look at the House of Commons Gym 

These images were from different sources on google images including The Westminster Gym and Daily Mail Online UK.

As you can see, the House of Commons Gym is a big gym, a big fitness center, sort of like a Jack LaLane or an La Fitness which are here in the United States.   People are exercising on the machines….

The gym is actually called “The Westminster Gym” , the staff gym for members of Parliament.  Looks very nice, nice amenities.

HouseOfCommonGym_01

Membership includes access to 100 different gyms across London which include pools, group exercise classes, sauna.

HouseOfCommonsGym_02

They have strength machines and free weights!

HouseOfCommonsGym_03

A 40-Station Gym which includes steppers, rowers, cycles, cross trainers which include touch screen technology, a place to dock your ipod and your own person tv viewing screen. State of the art technology!

HouseOfCommonsGym_04
They have brand new “Trixter” bikes which are supposed to offer virtual reality cycling.

They offer classes too: Pilates, circuit training, yoga.

HouseOfCommonsGym_05

 

They even have personal trainers to help you achieve your goal!

Fitness Instructor Training from just £13.50 per 45mins. Not too bad, that’s a good price.  That must be a discounted price for members, personal trainers here in the US charge over $100 an hour.

Air Conditioned so you stay cool while exercising.

Opened Monday to Friday so the members can work out right next to where they work.

 

SomethingIsMissing

 

Something is missing……

They don’t offer something on that list!

Something is missing on that list……

Lets take a look at the pictures where the people are.

Something is missing in those pictures too.

I should say someone is missing in those pictures.

I don’t see a nurse

Do any of you see a nurse?

No nurse!

We do not see a nurse because this is NOT a medically supervised center!!!!!!

 

Malpractice1

 

 

Brynmor John Was Exercising In A Non-Medically Supervised Center!!!!!

I must focus and hold my composure, because my temperature is rising!

What is wrong with this scenario?

Why was this wrong?

Why should he not have been exercising there in the first place?

Why should he have NOT BEEN EXERCISING AT ALL???

This should NOT HAVE HAPPENED?

His physician was missing the item that is in the 2nd picture above this one!

 

Physician Misconduct

 

This was more than a big blunder by Brynmor John’s doctor!

 

To be continued………

“The Other Side Of The Stretcher” (c) 2014

This blog is not for medical advice.
For medical advice, you must speak with your physician!

 


“GET” and The House Of Commons Gym Part 1

 

Graded Exercise Therapy and The House Of Commons Gym

Part 1

In Memory Of ME Patient

Brynmor John

18 April 1934 – 13 December 1988

BrynmorJohnMemorial

 

JOHN, BRYNMOR THOMAS (19341988), Labour politician. He was born on 18 April 1934, the son of William Henry John, a painter and decorator, and Sarah Jane John. He received his education at Wood Road elementary school, Treforest, Pontypridd Boys’ Grammar School and University College, London. He graduated Ll. B. (Hons.) in 1954. He was an articled clerk, 1954-57 and he became a solicitor in 1957. He was on National Service, 1958-60, serving as an officer with the education branch of the RAF. As a partner from 1960 to 1970 in the firm of Morgan, Bruce and Nicholas, Pontypridd, John specialised in industrial accident cases.

BrynmorJohn1959_1
Brynmor John Circa 1959

Compliments of Flying Officer Pam Gerrity

He had joined the Labour Party at the age of eighteen, and was secretary of the Labour Party at University College, London. He was active in the local Labour Party in Pontypridd. He was elected Labour MP for Pontypridd in the general election of 1970 as successor to Arthur Pearson and he continued to represent the constituency until his death. He had first come to prominence in his opposition to the visit of the Welsh hockey team to South Africa and he was a committed devolutionist. Brynmor John was Under-secretary of State for defence for the RAF, under Harold Wilson, March 1974—April 1976, and then Minister of State at the Home Office during the Callaghan government of April 1976—May 1979. He was regarded as a safe pair of hands who seldom ran into controversy. He served as chairman of the Welsh Labour Group, 1983—84. He was also opposition spokesman on Northern Ireland, 1979—80, defence, 1980—81, social services, 1981—83, and agriculture, 1984—87.

He was a fierce anti—unilaterist who stormed out of the Labour Party conference at Brighton in 1981 when chairman Alex Kitson refused to call him to speak. He was then quickly replaced in that shadow portfolio by John Silkin. Subsequently Brynmor John was not prominent in the party councils. He was named as a possible defector to the SDP in 1981, but deeply resented the insinuation, telling students at the Polytechnic of Wales that the actions of the SDP were designed to ensure the triumph of the hard left. He was also a bitter opponent of the Labour Party’s Militant infiltrators. He had backed Roy Hattersley in the 1983 Labour Party leadership contest, and was promptly sacked by Neil Kinnock from the shadow cabinet. During his last years he had thrown himself into his constituency work with renewed vigour. He was a grey—haired, bespectacled figure, somewhat lacking in charisma. But it was easy to underestimate him, and he had a witty felicity in debate.

He married on 6 August 1960 Anne Pryce Hughes, the daughter of David L. Hughes. They had one son and one daughter. They lived at ‘Yalehaven’, Church Village, near Pontypridd. His hobby was watching rugby football. He died on 13 December 1988 at St Thomas’s hospital, London after suffering a heart attack and was cremated at Glyntaff Crematorium. He was succeeded by Kim Howells MP.

~Compliments of Welsh Biography Online~

 

I never saw a proper tribute to this patient.

I felt it was long over-due.

The Question is , What REALLY  happened to Brynmor John?

To be continued…..

 

“The Other Side Of The Stretcher” (c) 2014

This blog is not for medical advice.
For medical advice, you must speak with your physician!

 


Hearsay Medicine

Hearsay

What is “Hearsay Medicine”?

Actually,

“Hearsay Medicine” is a Copyright of “The Side of The Stretcher,” aka Me :).  I figure I should do that because blogging isn’t like it was 10 years ago.  I notice the practice of “plagiarism” is not just common, it is rampant!  You must copyright every one your ideas!

If you are familiar with the term “Hearsay” which someone with a legal background would be familiar with, then you may have an idea what “Hearsay Medicine” could be.  If you don’t, read on and find out, because there are doctors who practice “Hearsay” medicine and one day you may be in a situation where you may just need to know this if you have a “politically incorrect” illness.

From the Nurse Point Of View!

As I have said in my previous blog posts, my blog posts are written  from an RN point of view for the benefit of the patients because I was an active RN until I was no longer able to work because of M.E.

I also could not respond from a patient point of view because I would lose focus on the subject and I would end up sounding more like an angry patient than a nurse who is very very disappointed because of the lack of the standard of patient care in regards to this illness.

I decided to do this when I finally saw something where I thought, ok, enough is enough, the medical people with this illness must speak up because this is absolutely ridiculous, this is negligent, not to mention harmful to the patients as has been unbelievably and ridiculously harmful as well as many other things through the years, that if we don’t speak up, this situation will go on another 20-30 years.

Because of the “controversial and political” situation that our illness is in. and what I and most of us have observed and had to go through the last 20-30 years, its time to make things right or at least get us moving in the right direction.

I cant say I never saw a “political” affected illness because HIV/AIDS was in that same situation in the beginning, but their situation didn’t drag on for 30 year as this situation.  I didn’t think I would see it again after how bad that epidemic actually was.

Also,

I too have encountered a “Hearsay Medicine” practitioner 9 years ago, who was very rude, who decided they were going to be rude when they saw the diagnosis that was written on my chart.  When that happened, I was shocked, I was stunned, I could not believe a doctor actually would do that and I really started to wonder if other doctors were doing this.  Thus, this post, “Hearsay Medicine” because I do not want to see other patients fall prey to this treatment which can be equated to nothing other than a classic case of bullying or abuse from an uninformed or uneducated medical practitioner who should know better.

Hearsay Medicine!

The term “Hearsay Medicine” was something that I thought of one day when I was thinking about when patients with M.E. or one of the other “controversial illnesses” go to the doctor for the first time to find out what is wrong, and they will hear  one of a number of different classic statements that “Hearsay Medicine” practitioners make today.

“Hearsay Medicine” practitioners usually make those statements because they either choose to not listen to the patients,  or they did not take the time to research the illness to find out what the illness really is and they believe many of the unreliable sources out there today and repeat what those unreliable sources say because they think those unreliable sources are correct.

Classic Statements 

Those of us with M.E. or who were giving the diagnosis of “CFS” and those other “politically incorrect” illnesses already know what those statements are, but for the other people reading that don’t know, we will educate you to what is going on regarding “Hearsay Medicine” if you or your family member become a victim to one of these “Hearsay Medicine” practitioners.

If its a doctor reading this, even better because there are doctors who need to be educated if they may have made one or more of these statements. As a matter of fact, this blog is addressing those health practitioners, so read on and see why they need to be educated and why this may be important for you to know!

1. “Its all in your head honey”

2. “You are suffering from depression?”

3. “You just need to get some exercise.”

4. “Did you try sitting outside?”

5. “Maybe you need a new hair color.”

6. “No, I don’t need to read that piece of paper, I know what your problem is.”

7.  “There is no such thing as that illness, that illness IS DEPRESSION.”

My Personal Encounter With A “Hearsay Medicine” Practitioner

This is a what a doctor actually said to me 9 years ago when I went to a local doctor because I was sick with bronchitis and I could not drive the one hour and 15 minutes to my doctor who usually treats me. When this person saw “ME/CFS” written on the chart, this person ignored the reason why I was there and decided to say these things instead.

“There is no such thing as Chronic Fatigue Syndrome”.

“Chronic Fatigue Syndrome is depression.”

“Who is your doctor?”

“Is your doctor an internist?”

“If your doctor is an internist, medicare is not going to pay me.”

“You should’ve went to my friend Dr. B. down the road at the urgent care center.”

“Who filled out your disability papers, how interesting that someone filled out disability papers.”

“You have fibromyalgia too?, I make my fibromyalgia patients exercise.”

Direct Questioning

The question I have for the doctor or anyone else that thinks that this is “all in the patients head” is, where did you learn that?

Who taught you that?

Did your medical school teach you that?

Where did you hear that information?

Are you referring to places such as the CDC toolkit, Wikipedia and other websites?

Do you say that because the group practice that employs you tells you to say that?

Are you afraid that your colleagues will harass you if investigate further?

Quite franky, what makes YOU think it is all in their head when it could just be all in YOUR head?

Possible Answers

-I went to Harvard Medical School.

 -Yes, my employer tells me to say that otherwise they will fire me

-My favorite professor in medical school said that and he co-authored a number of textbooks.

-I read it on that site called Kevin MD

-I referred to the CDC toolkit for the information.

-I didn’t think to look anywhere else because the CDC is usually the place I look because the CDC is always where I look.

-I  looked on Wikipedia

-My best friend I went to medical school with who is a psychiatrist told me.

-I looked at The Mayo Clinic website

-I took a CE (continuing education) course and that’s what the CE course  taught.

-I read it in the newspaper.

-I heard it on TV.

OBJECTION HEARSAY!

As the lawyer may say in the courtroom if you actually gave that type of answer!

Why “Objection Hearsay?”

BECAUSE:

If YOU were in the courtroom “Hearsay evidence” is normally excluded from a trial because it is deemed UNTRUSTWORTHY.

BECAUSE:

YOU listen to whatever someone tells YOU.

AND,

YOU believe everything you read without double checking or investigating further,

THEN,

YOU start preaching the same thing!

THE TRUTH IS,

YOU are practicing “Hearsay Medicine” which is a dangerous practice my friend!

GUILTY AS CHARGED

YOU practice the DANGEROUS practice called “Hearsay Medicine” and YOU need to be CORRECTED and CURED from YOUR maladaptive illness thoughts!

Be thankful its just “Hearsay Medicine” that YOU need to be CURED from because tomorrow YOU can wake up and YOU can be that patient.

No one is immune, I can guarantee YOU that, not even YOU!

Why do you say that I am guilty???

-Because you said someone else said the answer.

-Because YOU “assume” your friend the psychiatrist knows what they are talking about and YOU didn’t double check for “CYA” purposes and to see if what YOU heard is actually true!

-Because YOU “assume” sites like Kevin MD are always correct.  How do YOU know that sites like that are always correct?  Did you double check?

-Because you listen to your employer and don’t double check for “CYA” purposes.  Just because your employer says it, it doesn’t mean its correct and it doesn’t mean YOU will not get sued!

-Because YOU also “assume” the CDC toolkit is correct.  How do YOU know the CDC toolkit is correct if you didn’t research the illness?  What makes YOU think the CDC toolkit is actually correct when their scientists cant even follow proper lab protocol and they expose everyone in their lab to things like Anthrax?

Be glad I am telling YOU this instead of the malpractice lawyer or the State Board!

One must never “assume” when it comes to a patient. One must always double check so one doesn’t actually harm or kill the patient.

Do YOU think just because YOU went to a medical school with an overpriced name  that charges an overpriced tuition makes YOU better than someone who goes to any of the other medical schools?

If your employer dictates what to say to the patients, maybe its time to find another job because obviously they do not care about the patients.

It YOU didn’t know this, it doesn’t matter what your employer says, YOU can still get sued!

CDC Toolkit, Kevin MD,  Mayo Clinic and many other “supposed” sources of information about this illness and other illnesses such as Lyme, Gulf War Illness and other “politically incorrect illnesses” are not correct. Surprise Surprise!’

They don’t even have the right name for the illness on their websites! What makes YOU think their information will be any better?!?!?!?!

Im sorry I have to tell YOU this, but your psychiatrist friend is not correct either.  Im not sorry I have to tell you that your friend is not correct because this illness  is not a psychiatric illness. It looks like your friend is suffering from “Hearsay Medicine” like YOU are.

There also happens to be an epidemic called “psychobabble ” that many health practitioners  actually believe.

If YOU Get Sued for Malpractice ?

Harvard  Medical school will not get YOU off the hook?

Your employer will not get YOU off the hook!

CDC will not get YOU off the hook!

Kevin MD will not get YOU off the hook!

Mayo Clinic will not get YOU off the hook!

Whoever else YOU referred to will not get YOU off the hook!

Your friend the psychiatrist can not get YOU off the hook!

As a matter of fact, everyone who YOU thought who was “your friend” will not be the friend YOU thought they were!  They all disappear when the medical boards and the malpractice lawyers come-a-calling!

YOU ARE A BULLY!

Quite frankly,

Shame on YOU!

How dare YOU treat these patients this way!

YOU forgot to “Do No Harm.”

Who do YOU think you are?

Do YOU think your something special because YOU are Jane or Joe doctor who went to Harvard Medical School which is no better than any of the other medical schools that YOU were penny wise and dollar foolish for paying for an over-priced tuition for paying for an overpriced name?

Did YOU think that YOU did not harm the patient when YOU told them their illness was all in their head or one of those other classic statements?

Does it EMPOWER YOU TO BULLY THOSE PATIENTS?

What gives YOU the right to verbally abuse a patient or look at them like they have 10 heads on their shoulders just because they have one of these illnesses?

When the patient told YOU that they had either M.E. or even Chronic Fatigue Syndrome, or the other controversial political illnesses such as Lyme, or Gulf War illness, did YOU put down that stethoscope because YOU decided that YOU didn’t need do a physical exam because YOU thought those patients were a head-case?

The patient employs YOU, do YOU realize that?

YOU get paid because of the patients, whether they pay YOU cash or if their  insurance pays YOU.  Did YOU not realize either?  Or did YOU forget because YOU drive an expensive car now?

Did YOU not learn, if YOU cant identify what is wrong with the patient, that YOU either should say that YOU need to refer to them to someone else, that its out of YOUR area of expertise,

or,

Oh MY, do YOU think YOU could actually do this!

Did YOU not learn its ok to say “I don’t know what YOU have.”

Or are YOU to proud to say that?

Pride

Remember, Pride always comes before the fall!

Because YOU WILL FALL if the patient becomes disabled, homebound, bedbound or even dies.

Yes, patients do die from this illness.

Don’t believe everything YOU read in the newspaper or what you hear from someone else and then start preaching it yourself when you don’t even really know if what YOU are saying is correct!

Truth or Consequences

If one wants to be in the people helping profession, then one needs to  OPEN THEIR EYES and see the propaganda!

There is such a thing called TRUTH!

TRUTH will never fail YOU!

When it comes to TRUTH, YOU will always be able to look in the mirror because TRUTH will keep you from abusing sick patient!

TRUTH will even keep YOU from harming or killing patients because YOU referred to the wrong recommendations!

TRUTH will also keep you from getting sued and keep your Medical license!

Its always the TRUTH that YOU know will be the TRUTH that will set YOU free!

Truth Hurts

Yes, the TRUTH DOES HURT NOW DOESNT IT!

Just think how those patients HURT when YOU treated them in the disrespectful and abusive way that YOU treated them!

Speaking this TRUTH that HURTS is necessary these days because no doctor or no other health practitioner has no right to treat any patient the way these patients have and are being treated!

If someone doesn’t speak this TRUTH, then the patients will continue to be disrespected, hurt, and abused by “Hearsay Medicine” practitioners.

If YOU are guilty of this,  and what YOU read today  touched you and  made YOU think that YOU just have been rude to patients with the diagnosis or “politically incorrect diagnosis” that I mentioned above and other diagnosis for that matter, then YOU need to go to pull those patients charts and call those patients, and give them the long over-due apology they deserve!

“The Other Side Of The Stretcher” (c) 2015

This blog is not for medical advice.
For medical advice, you must speak with your physician!

Trolls

“Plagiarizers”

Credit is given for images in this blog.

If you don’t see credit and you see your image,

please leave a note in the comments so credit can be given.

Thankyou!


Malaise…Lets discuss this!

 

 

Malaise…

Lets discuss this!

 

I will point out again like I have before, remember, im coming from an RN point of view for the benefit of the patients because I was an active RN until I was no longer able to work because of M.E.

I actually couldn’t respond from a patient point of view because I would lose focus on the subject because I would end up sounding more like an angry patient than a nurse who is very very disappointed because of the lack of the standard of patient care in regards to this illness.

 

Do you know what “Malaise” is?

 

Before I get into detail about what “Malaise” is, I just want to point out a few things.

I just recently did another post related to “Malaise”, It probably sounded… very…severely opinionated because of what I named the post.

The post could’ve sounded like a controversy type thing, then even more so.

The post was about the symptom described on the CDC 1994 Fukuda Definition of CFS “Post-Exertional Malaise lasting more than 24 hours.”

I did that post for a reason, the reason being, because I don’t think people including the physicians are seeing what the significance is, of this one little word called “Malaise.”

 

Clarification!

I will also clarify I am NOT a “word” nerd, but I am a stickler when it comes to a level of patient care. That level should not be compromised at all, especially this particular example because so many patients have become disabled and homebound because of the misinterpretation of this symptom because of the use of that little word called “malaise” that was the wrong word to use.

Quite frankly, in my personal and professional opinion this was unacceptable, this was negligent, this was nothing less than a crime!

Patients have suffered to the extent that no one should ever have to suffer because of basic incompetence and lack of knowledge of medical terminology!

This was a disgrace!

Shame on the late Dr. Stephen Straus!

Shame on Dr Keiji Fukuda!

 

What Is Malaise?

 

So, the question is, Do you know what “Malaise” really is?

I searched even further than I did for the original post for meanings of “Malaise” from other dictionaries, including medical dictionaries and not just Websters, etc.. to explain with it is and why malaise doesn’t even touch what we physically feel with a 10 foot pole!

 

Medical-Dictionary The Free Dictionary

Medical-Dictionary Free Dictionary has 8 different definitions for “Malaise”
from 9 different Medical and Nursing references which are listed below.
So there are multiple sources, no bias.

 

malaise /mal·aise/ (mal-āz´)

a vague feeling of discomfort.

Dorland’s Medical Dictionary for Health Consumers. © 2007 by Saunders, an imprint of Elsevier, Inc. All rights reserved.

 

mal·aise (ma-laz, -lez)
n.
A vague feeling of bodily discomfort, as at the beginning of an illness.

The American Heritage® Medical Dictionary Copyright © 2007, 2004 by Houghton Mifflin Company. Published by Houghton Mifflin Company. All rights reserved.

 

malaise

Etymology: Fr, discomfort,

a vague uneasy feeling of body weakness, distress, or discomfort, often marking the onset of and persisting throughout a disease.

Mosby’s Medical Dictionary, 8th edition. © 2009, Elsevier.

 

malaise

[malaz]

malaise general term for a vague feeling of generalized discomfort.

Segen’s Medical Dictionary. © 2012 Farlex, Inc. All rights reserved.

 

malaise (melāz´)

n a general feeling of discomfort or uneasiness, often the first indication of an infection or other disease.

Mosby’s Dental Dictionary, 2nd edition. © 2008 Elsevier, Inc. All rights reserved.

 

malaise

Internal medicine A vague feeling of general discomfort, sensed as something “just ain’t right”.

McGraw-Hill Concise Dictionary of Modern Medicine.
© 2002 by The McGraw-Hill Companies, Inc.

 

ma·laise (mă-lāz’),

A feeling of general discomfort or uneasiness, an “out-of-sorts feeling, often the first indication of an infection or other disease.

[Fr. discomfort]
Farlex Partner Medical Dictionary © Farlex 2012

 

ma·laise (mă-lāz’)

A feeling of general discomfort or uneasiness, an “out of sorts”feeling, often the first indication of an infection or other disease.

Medical Dictionary for the Health Professions and Nursing © Farlex 2012

 

ma laise (ma-laz)

A feeling of general discomfort or uneasiness, may be a first indication disease.

Medical Dictionary for the Dental Professions © Farlex 2012

 

Is the “Malaise described above YOUR symptom or is it something else?

My question is,  is the symptom “Malaise” in the

1994 Fukuda Defintion for CFS

symptom that is called

“Post-Exertional Malaise lasting more than 24 hours”

the SAME Malaise in any of the definitions for Malaise from the different medical and nursing sources I posted above, that same “Malaise” you experience?

 

Scratching My Head?!?!?…..

 

Did Dr. Keiji Fukuda or did Dr. Stephen Straus publish their own dictionary that we know of that gave their own meaning for the word “Malaise”?

I did do a search just to double check that and I did not find a Fukuda or Straus Medical Dictionary!

But are we absolutely sure about that?

Could their dictionary be out of print?

Do you think we need to contact the librarian at the NIH to double check that just to make sure?

Do you think we need to contact Dr. Keiji Fukuda over at the WHO to double check with him?

 

Now That We Have That Established!

 

Since I pointed this issue out about the word “Malaise”, is it easy to understand and see why physicians and other healthcare practitioners did not recognize this symptom as a key hallmark symptom of the illness and possibly and probably dismissed it?

Since “Post-Exertional Malaise Lasting More Than 24 hours” was originally listed as the last symptom on the list of the The CDC 1994 Fukuda Definition for CFS that was published in 1994, would it be even more understandable why it was probably missed as the key hallmark symptom of the illness after reading the meaning of the word “Malaise” from all of the different medical sources?

 

PLEASE LEAVE YOUR FEEDBACK!

 

If you happen to be reading this blog post today, please leave some feedback to let us know if the “Malaise” is the same symptom you experience according to the definitions in the medical and nursing sources that I listed above.

Is your symptom the same symptom that is listed in the 1994 Fukuda Definition for CFS“Post Exertional Malaise lasting more than 24 hours” or would you call your symptom something different or a different medical word or description?

 

In other words,

 

Does “MALAISE” have anything to do with your symptom that you experience after activity whether trivial, cognitive, exertional, or exercise?

Please let us know what YOU think the symptom should actually be “called” that you experience!

Thanks so much in advance for your feedback!

I do respond to the posts because I am a conversationalist because I am a people person!  To be a nurse, you have to be a people person.  Even though im not active in the RN field at this time, im still that people person. Once a nurse always a nurse!

So if you do respond in the comments, I will reply back to you! 🙂

Thanks again so much!

 

“The Other Side Of The Stretcher” (c) 2014

This blog is not for medical advice.
For medical advice, you must speak with your physician!


My Correspondance with Beth Collins Sharp RN of ARHQ

 

 

My Correspondance with Beth Collins Sharp RN of ARHQ Regarding The NIH Pathways To Prevention Systematic Review for ME and CFS.

May 2nd, 2014,  The NIH Pathways To Prevention Systematic Review for ME and CFS was published.  When I heard it had been published, I went to the ARHQ website where it was published to take a look at it.

When I read that document, the nurses cap automatically went back on my head and I started thinking like an R.N. I say this because as soon as I read that document, I saw right away that it was clearly negligent and thought, the medical people with this illness need to really start speaking up and I must contact someone regarding this.

I looked for the link on the website to where I could contact the authors regarding this, I found the link and I sent them a message, which started my correspondence with ARHQ and Beth Collins Sharp RN.

Below are copy and pastes of the actual email communications with ARHQ and Beth Collins Sharp.

May 2nd:

The correspondence starts May 2th with my comment via the feedback to the authors:

Discussion Thread
—————————————————————
Customer By Web Form (Name Not Given) – 05/02/2014 02:48 PM Hello, Im writing in regards to the systematic review that is planned for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome that was just published and put on this site yesterday,  Its very very bad, the evidence to be reviewed, more than 1/2 of it is biased and incorrect evidence for the reveiwers to review!!  I would really like someone to contact me back at my email above about this.

Response from AHRQ on May 5th:

—– Forwarded Message —–
From: AHRQ Effectivehealthcare

To: “Me
Cc: “Ramage, Kathryn (AHRQ) (AHRQ Contractors)”

AHRQ Effectivehealthcare
Sent: Monday, May 5, 2014 2:32 PM
Subject: RE: Site Feedback [systematic review for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ]

Thank you for your recent inquiry to the Agency for Healthcare Research and Quality (AHRQ).

The protocol for this project was posted on the Effective Health Care (EHC) Program website, however, the research review itself is still in progress.  The draft version of this report will be posted for public comment on the EHC website, and we welcome any comments and feedback that you have regarding this topic at that time.  The key questions for this topic were also posted for public comment, however, that time period has closed.

Please feel free to visit the following link to join the EHC email list to learn about recently released products for public comment and final posting:  http://www.effectivehealthcare.ahrq.gov/index.cfm/join-the-email-list1/

We appreciate your interest in AHRQ’s Effective Health Care Program and the resources that we produce.

Sincerely,

The AHRQ Effective Health Care Program

 

 

My Reply to ARHQ on May 5th:

From: Me
Sent: Monday, May 05, 2014 3:33 PM
To: Ramage, Kathryn (AHRQ) (AHRQ Contractors)
Subject: Fw: Site Feedback [systematic review for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ]

Dear Kathryn,

The email states you forwarded my feedback.
I didn’t send feedback to be placed on an email list, I send feedback to be directed to a person.
I and other patients would rather talk to a specific person than get our legal team involved.

Thankyou,

 Me

(I figured the mention of the “Legal Team” would get a faster response)

 

 

Response from Beth Collins Sharp on May 7th:

From: “Collins Sharp, Beth (AHRQ)”
To: Me
Cc: “Ramage, Kathryn (AHRQ) (AHRQ Contractors)”
Sent: Wednesday, May 7, 2014 12:07 PM
Subject: RE: Site Feedback [systematic review for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ]

Hello Ms,

First, I am sorry it was difficult to be referred to me. The staff working with the general e-mail addresses have been given new routing directions.

More to the point, I am happy to try and answer your questions and respond to your concerns as it relates to the systematic review process and AHRQs role in this project. If your questions bump up against confidentiality or policies where I cant share information, I will be up front about that and when possible, explain why. As you probably know, I am AHRQs ex-Officio to the CFSAC and have past experience with the EPC program.

Thank you for contacting us. I’ll look forward to another e-mail from you and try to help where I can.

Thank you, Beth
___________________________________________

Beth A. Collins Sharp, PhD, RN, FAAN
Senior Advisor, Women’s Health and Gender Research
Senior Advisor for Nursing
Agency for Healthcare Research and Quality

 

 

My Reply to Beth Collins Sharp June 7th

From: Me
Sent: Saturday, June 07, 2014 4:12 AM
To: Collins Sharp, Beth (AHRQ)
Subject: Re: Site Feedback [systematic review for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome ]

Hello Beth,

It thought the original response was from one of those automated systems when I received a response from from my feedback. I have to be honest, im surprised to see your email. Thankyou for writing me back.

Because of this illness, I could not write you back sooner. I am writing you now. I may register to speak over the phone during the CFSAC meeting and repeat the words im saying here to you.

My name is Anne LiConti. Im a long time patient with this illness. Before I became a long time patient, I was an active Registered Nurse almost 10 years, my employment included working at a very large well known medical center in New York City where I am originally from. I know you are an RN too, as you know, after working in one of those medical centers, you can work anywhere and you learn early on how things work, like this review that is planned to be done.

The NIH Systematic Review for the P2P program has a clear Bioethics violation in it.
There is outdated information in this review, that is harmful to patients if it is allowed to be used in the evidence review.

There has been multiple studies, with proven evidence, by 3 different research groups, that was known before this review was written. Therefore, this review is an unethical, bioethics violation and must be stopped!

It is obvious, that the authors who wrote this review, do not have any type of expertise in the care of the ME patient. If they did, they would know that evidence that is being used in this review will cause irreversible harm, disability and has even been fatal to patients. If they do have expertise, then they are negligent.

There is nothing in this review that proves disclosure of the issue. The non medical lay people who are going to be involved in this process, they do not have knowledge of the inaccurate evidence because not only are they not practitioners, they are non medical lay people.

Beth Maier made a statement, which I heard while I was watching the video where the process of this P2P review was being explained, or should I say, that she was attempting to explain.

Beth mentioned “The Jury Model.”

Quite frankly, patients are not criminals that sit in front of a jury for the jury to decide whether or not that they receive correct or incorrect care. This “Jury Model” is a disgrace to medicine. There is no other way to word that.

I have been a patient in this community for 20 years. While I was active in the RN field, I would’ve never dreamed of being treated the way the patients in this community have been treated. I never saw anything like this in my life. I cant believe I am actually a patient in this patient community where we are dealing with a situation that is far beyond unethical in the year 2014. This is a disgrace, has been a disgrace, and continues to be a disgrace.

Because of the bioethical issues regarding evidence in this review, it would be of all due conscience, in other words, because of the oath that was promised by all of the practitioners involved, and that is “Do No Harm”, thus, this review must be stopped!

Thankyou,

 

 

Response from Beth Collins Sharp June 11th

On Wednesday, June 11, 2014 4:23 PM, “Collins Sharp, Beth (AHRQ)”
wrote:

Hello Anne,

When I didn’t hear from you before, I assumed that the ME/CFS was hitting you hard. I’m glad you were able to write back.

I agree that it’s hard to be a nurse and see how little progress has been made over the years. That’s why, in my role as Ex-Officio for AHRQ, I’m trying to listen carefully to patients and apply it to what I know about the systematic review process. There is a clear message from patients and advocates that they are concerned about harms from specific treatments. The protocol for the systematic review includes looking at harms so the manuscripts that document the harms should be considered also. That is a routine in these reviews and the researchers are used to considering the harms.

I cant comment about the non-experts on the Panel. AHRQ is not involved in the selection of the Panel. I will say that the members of the panel are recommended by experts and the P2P has a long history of doing very well at putting together a responsive panel.

I recognize that we feel differently about this. My past experience with the P2P program and the AHRQ systematic reviews influences my more positive outlook. Just as your experience with ME/CFS influences your view. More importantly, even though our views are different, I would like to say that I respect your opinions and will keep them in mind in our CFSAC work.

I will listen for your voice on the phone next week during public testimony.

Sincerely, Beth
___________________________________________

Beth A. Collins Sharp, PhD, RN, FAAN
Senior Advisor, Women’s Health and Gender Research
Senior Advisor for Nursing
Agency for Healthcare Research and Quality

 

 

My  Reply to Beth Collins Sharp June 13th

This reply is where I told Beth SPECIFICALLY WHY the Systematic Review for the NIH Pathways to Prevention for ME and CFS is Negligent and has Bioethical Violations!

To Collins Sharp, Beth (AHRQ)

Jun 13 at 2:03 AM

Hello Beth,

I was not able to get my request in on time to be heard via phone call during the CFSAC meeting.

I will be more specific in this letter why the Systematic Review for the P2P for ME and CFS is in error.

The authors who were paid to write that review, obviously did not have M.E. expertise, because they wrote a negligent document,  recommending unsafe non medical treatment that is harmful to M.E. patients.

Here are the reasons why:

NIH P2P Systematic Review For ME published online 5/2/2014.

The NIH P2P systematic review was supposed to be designed to further research.

This review will not further research as it contains non medical therapy which is harmful to M.E. patients.

The authors of this review did not exclude non-medical therapy GET/Grade Exercise Therapy which is harmful to ME and CFS patients.

The authors were negligent in not excluding the non-medical therapy of GET/Graded Exercise Therapy from the NIH P2P review for ME and CFS patients as the results of the 3 different research groups were known before publishing date of May 2nd, 2014.

Evidence used for the NIH P2P Systematic Review cited 6 defintions for ME and CFS:
-Centers for Disease Control and Prevention Fukuda et al., 1994
-Canadian Carruthers et al., 2003
-Revised Canadian Jason et al., 2010
-International Consensus Statement Carruthers et al., 2011
-London Dowsett, 1994
-Oxford Sharpe, et al. 1991


All of cited defintions except the Oxford definition point out post activity exacerbation of symptoms after trivial amount of activity, physical or mental fatigue or muscle weakness after minimal exertion which may persist long after exertion ends, Post Exertional Neuro Immune Exhaustion, Post Exertional Malaise.


The authors of the NIH P2P Systematic Review for ME and CFS allowed The Oxford definition criteria of GET/Graded Exercise Therapy to “slip through the cracks” and to be included in the systematic review as one of the non-medical treatments for ME and CFS. This was NEGLIGENCE of the authors, because it does not include that key piece of data in the definition which states that GET or Graded Exercise Therapy causes a post activity, whether physical or cognitive, exacerbation symptoms, long after exertion ends, Post Exertional Neuro-Immune Exhaustion, or Post Exertional Malaise.


This NIH P2P Review for ME and CFS was published on May 2nd, 2014, which was after 3 CPET VO2 Max Studies, that were completed by 3 different research teams stated below:


Dr. Enlander of the Mt Sinai Medical Center in NYC: November 20th, 2013: “Incorrect Govt Criteria Hurts Chronic Fatigue Syndrome Patients:
http://bit.ly/1hX7MFm



Dr. Snell and Dr VanNess of the Workwell Foundation in California: June 23rd, 2013 http://ptjournal.apta.org/content/early/2013/06/26/ptj.20110368.short

http://www.workwellfoundation.org/research-and-latest-news/


Dr. Betsy Keller in Ithaca NY: September 17, 2013 http://beforeitsnews.com/health/2013/10/exercise-physiologist-prof-betsy-keller-mecfs-patients-will-respond-abnormally-to-2-day-cardiopulmonary-exercise-tests-2-2508464.html


All 3 different research groups, in 3 different centers, where CPET VO2 Max testing using the Stevens Protocol was performed, all resulted in the same findings!

Findings:


-Abnormal Recovery Response to Aerobic Exercise- up to 7 days


-Decreased Functional Capacity or a drop in VO2 Max during test #2, 24 hours after test #1 due to metabolic abnormalities, thus causing post activity or exercise exacerbation of symptoms, PEM, PENE


-ME/CFS participants were unable to reproduce most physiological measures at both maximal and yentilatory threshold intensities during a CPET performed 24 hours after a prior maximal exercise test.


.-Decrease in anaerobic threshold from test 1 to test 2 causing a decrease or lower threshold for physical activity.


-Results from the second test indicate the presence of a CFS related post-exertional fatigue


-Significant Post Exertional Amplification of Symptoms.

-Ability to generate energy from the aerobic system is significantly impaired.

These results correlate with Dr. Enlander’s statement- INCORRECT GOVERNMENT CRITERIA IS HARMFUL TO ME AND CFS PATIENTS, NEW RESEARCH FINDS!

These results correlated with what patients have said for the last 30 years.

THE RESULTS OF THE 3 CPET VO2 MAX STUDIES PERFORMED BY THE 3 DIFFERENT RESEARCH GROUPS, SHOW THAT THE 1991 OXFORD DEFINTION FOR CFS IS OUT OF DATE, OBSOLETE, DOES NOT APPLY TO ME OR CFS, AND IS HARMFUL TO PATIENTS WITH ME AND CFS!

Because of these results, there is no way that Oxford Definition criteria can be used in good conscience at this point, because of clear bioethical issues, negligence by the authors, and if allowed to be used will be a bioethical violation and negligence by the P2P Panel knowing that the non medical therapy of GET is in fact harmful to ME and CFS patients.

There was also noted that there is no disclosure to non-medical lay people who will be participating in this process that the non-medical therapy of GET is harmful to ME and CFS patients.

The Non-Medical Therapy of GET or Graded Exercise Therapy will not advance research via the NIH P2P Study for ME and CFS as it is a therapy that is harmful to ME and CFS patients.

This NIH P2P Systematic Review for ME and CFS patients MUST be retracted and MUST be canceled as it will not advance research as explained above, has bioethical violations, is negligent, and is harmful to ME and CFS patients.

Beth, the error in the treatment recommendation can be equated to a medication error that results in permanent harm and disability to the M.E. patient, as this particular treatment has resulted in permanent disability to the M.E. patients for the last 30 years. In no way, will this review advance research.

This review was not checked and proof read properly before it was published online.  If so, the authors would’ve noted those 3 studies and included disclosure to the Non Medical lay people.  That document is clearly negligent.

In addition, an M.D. named Dr. Larry Baldwin, who is a Vascular Surgeon, disabled by M.E. 20 years, just wrote  a guest post called: “Post Exertional Debility” that was surprisingly posted on the Solve CFS Initiative website (formerly known as the CAA).

http://solvecfs.org/guest-post-dr-larry-baldwin-on-post-exertional-debility-in-mecfs/


It was posted on May 14th 2014 but there is still plenty of time to stop the P2P study as it is harmful and negligent to M.E. patients.

M.E. patients and patient advocates will be protesting this. M.E. patients are tired of unethical and negligent treatment recommendations. Its obvious that no one has listened to this patient group at all.


I myself, see this not just as a patient, I see it through R.N eyes, and this is unacceptable, and there is no excuse for this.


If we as RN’s, were employed by a center where GET therapy was done, and we didn’t double check this, questions this, refuse to allow the patient to go forth with this,  we would be sued because this therapy permanently disabled patients. This is the reason patients are unseen, because they are homebound because of this.


The 1994 Fukuda Definition, the way it was written in 1994, the Symptom “Post Exertional Malaise” was on the bottom of the list of symptoms.  The CDC changed it and put that symptom on the top.


“Post Exertional Malaise” is the incorrect wording of this symptom because the symptom isn’t “Malaise”, its severe muscle weakness. Malaise is not weakness, and fatigue is not weakness. Its the same symptom that Post Polio Syndrome patients get.


I know what you are going to say, so I will correct you first, only 1-3% of polio patient suffered paralysis, 7-9% who were diagnosed did not, the other 90% did not know that their “summer flu” was a polio infection.


The wording “Post Exertional Malaise” was deceiving, because doctors did not pay attention, they had no idea what it was, that’s why for 30 years, patients have been saying “I get worse after activity, exercise, reading, and the practitioners, had no idea what the patients were talking about because of the way that was written.

The 1994 Fukuda Defintion was a negligent document, just like this P2P for ME is negligent.


Like I said, the patients and patient advocates will continue to the protesting since before the IOM studied commenced.

Thankyou for your time,

Anne LiConti

 

 

Response from Beth Collins Sharp June 13th

Collins Sharp, Beth (AHRQ) Thank you Anne, The information that you provided is very informative. I will look at the links that you provided. I hope you have a nice weekend,

Beth
___________________________________________

Beth A. Collins Sharp, PhD, RN, FAAN
Senior Advisor, Women’s Health and Gender Research
Senior Advisor for Nursing
Agency for Healthcare Research and Quality

 

 

My  Reply to Beth Collins Sharp June 15th

 

To Collins Sharp, Beth (AHRQ),Me
Jun 15 at 12:54 PM

Beth,

Thankyou very much for replying to my emails and reading what I put in the emails.  I know you are busy, just a few more words.

This patient group has suffered unnecessarily. For this patient group to continuously suffer because of faulty and negligent illness criteria and non medical therapy, is getting beyond negligent and is becoming a crime.

The patients have suffered actually by the actions of a key person in the world of “CFS”, who was employed by the NIH, no longer with us anymore.

You probably know who I am talking about, there are also documents that were retrieved by an advocate, via FOIA, with the mans own words pretty much saying what he did.

His own words prove his actions to be intentional.

What that man did was a crime to millions of patients who are disabled and not here with us anymore. The people who aren’t here are not are all victims of self euthanasia/suicide.

That man, whose painting happens to be hanging in the NIH as some distinguished researcher,  manipulated the name of an illness that is a horrible illness to have to live with, this illness is torture!! He downplayed this illness by changing the name (which caused the patients harm and abuse by the name alone) and downplayed it more by changing the key hallmark symptom of the illness by downplaying it, to something that would not be considered something that disabled the patients.

Because of what was done, there is a whole community of patients, that we dont even know the numbers of, CDC’s numbers are wrong, who are disabled and homebound now for the last 20 years, and im one of them, because of the actions of that individual.

This illness is a life thief!!

I just want to point out why I said what I said about the 1994 Fukuda Definition for “CFS” being a negligent document.  Any saavy malpractice attorney, could prove that definition negligent with a Websters dictionary.

They would not even need any type of medical book, or a 140 on the Stanford Benet IQ test,  all they would need is a Webster’s dictionary.

This patient community is owed a serious apology, a serious apology!

There have been deaths because of GET or Graded Exercise.  Here is one of them:  http://en.wikipedia.org/wiki/Brynmor_John

Brynmor John.  He actually dropped as he was walking out of the doors of the gym at the House of Commons in England right after he did his GET session.

What makes it more negligent- is because he probably didn’t have a previous stress test to see if it was safe for him to do that GET because this illness is treated as a psych disease in England.  Because of “CFS” he probably didn’t even get a physical exam.   I know that because it happens over here to many patients.

I also know that because I was a cardiac rehab nurse in 2 different cardiac rehab centers. Patients didn’t exercise on any type of machines until they had a stress test to see if it was safe.

Brynmor John’s Case made the news because he was some type of politician over there.

Another example of  a patient who died because of no physical exam Casey Fero, 23 years old.
http://www.investinme.org/Article%20011-Casey%20Fero.htm

I know you have heard the name. His mother is an advocate.  If Casey got a proper physical exam, any doctor who listened to his heart, would’ve heard abnormal heart sounds. I know, I was a CCU nurse at NY Hospital/Cornell Medical Center (now New York Presbyterian Hospital, etc..)

I also know this, because of what the condition of what heart was in on that autopsy that was done,  that kid was having arrythmia’s for a long time and they never knew. I his heart condition was picked up like it should’ve been, he would’ve been a candidate for a heart transplant and still possibly be here.

***Casey died of myocarditis that is, his heart was infected with disease. There was inflammation, and the tissue was full of viral infection. Casey also had old fibrosis, indicating that the viral infection was not of a new onset.**”

When I heard about and read what the results of his autopsy was, I was outraged, I couldn’t believe it. I thought, how the heck could anyone miss that.  You know why it was missed, because when he said “CFS”, no one took him seriously, they either said to him “there is no such thing’ or “he was depressed.”

There have also been deaths because patients need IVIG. A patient named Irene Romano, wrote a blog called “Laughing from my Sick Bed”, died in January.  Irene said she had bronchitis, was on antibiotics and strict bedrest, she said she had 3 previous life threatening episodes of pneumonia.

She was only 61, 61 is still too young to die from that, if she was 80, I would agree with everyone, not 61. She should’ve been getting IVIG.

http://laughingfrommysickbed.blogspot.com/
http://www.kepnerfuneral.com/obituaries/Irene-Romano/

One more example, but this one is about disability, and
a very sad case. Jessica Taylor.  You may have heard her name.

Here is a video of her:

You never saw kids in the condition she was in unless they were going to die soon.

Jessica Taylor just stood up for the first time in 8 years.

She could not get out of her bed for 8 years!  That could be your daughter or my daughter.

She and many other children are the same condtion, because of this exercise issue!!!

This is beyond negligent!

There was a promise made, an even by me because im an RN and that was “Do No Harm.”  “Do No Harm” went out of the window 20-30 years ago in regards to the patients who were diagnosed with “CFS.”

Thankyou again Beth for reading my email. I do hope to be able to get to the next CFSAC or another related meeting, and say everything that I said to you in these emails.

Im actually available by phone, if for some reason, some of the people who are scheduled to speak, are unable to speak during the meeting.  If so, send me an email and I will send you my phone number.

Thankyou,
Anne LiConti

 

“The Other Side Of The Stretcher” (c) 2014

This blog is not for medical advice.
For medical advice, you must speak with your physician!


The Fukuda Defintion, Negligence, & Webster’s Dictionary

The Fukuda Definition, Negligence, & Webster’s Dictionary

Friends in the world of M.E. and other friends,
Have you ever really analyzed the 1994 Fukuda Definition for CFS?
This is a very interesting analysis!

If you analyze the 1994 Fukuda Definition for CFS, its actually a negligent document.  You can actually prove that its a negligent using a Webster’s dictionary, you don’t even need a medical textbook.

When I finish explaining this, you will agree and say “I never thought of that.”

Back in 1994 when I first received a copy of the Fukuda Definition for CFS, I looked it over, saw I had most of the symptoms, thought ok, and then I put it away in my file with all of the rest of the information I was gathering at the time about the illness.

I didn’t really pay attention to the details of all of the illness symptoms because not everyone has all of the symptoms of any particular illness.  Because not everyone has every single symptom of any particular illness, when I saw the symptom called “malaise,” I thought, thats one of the symptoms I don’t have, because none of the symptoms I had included “malaise.”

I think probably everyone who received that document and read it over did the same thing. When a patient received the document, the patient looked at the list of symptoms and looked for which symptoms they had and counted them.  If they were a health practitioner such as a doctor, they read the document to become familiar with the symptoms so they could diagnose a patient as it was a guide for the doctor to use sort of like the CDC toolkit on the CDC website is supposed to be a guide.  We didn’t have the internet then, so we didn’t have a CDC toolkit or website.

Just to clarify, i’m saying “CFS” and not M.E. because that’s what was the illness was being called here in the U.S. in 1994, and that’s what was on the document that was said to be the case definition for the illness.

What we also have is a case of words being used interchangeably. Words that are used interchangeably can be very harmful when it comes to an illness definition. In the case of the 1994 Fukuda Definition for CFS, something very significant was overlooked. Something very significant was overlooked because of words that were interchangeably used. Because of words that were interchangeably used, we have a whole patient community, who are disabled and homebound. We aren’t even sure of the exact numbers because the CDC’s numbers are not correct.

So which words am I talking about?

What I want to point out first is, CFS or Chronic Fatigue Syndrome is not the name of the illness. The actual name of the illness is M.E. or Myalgic Encephalomyelitis. If you didn’t know this, I can almost hear your thoughts. Yes, the name of the illness is Myalgic Encephalomyelitis. Where did the name Chronic Fatigue Syndrome come from? I really can not tell you, I can only tell you that the leader of the definition team, who was an employee of the NIH changed the name from Myalgic Encephalomyelitis to Chronic Fatigue Syndrome.

The next question I will answer “What actually is M.E. or Myalgic Encephalomyelitis?

Myalgic Encephalomyelitis (ME) is a neuroimmune disease with serious immune and cardiovascular abnormalities with resulting serious CNS (central nervous system) consequences due to brain injury. The disease snatches the vital life out of patients on the level of diseases like MS, AIDS, mitochondrial diseases, and cancer. The pain, cognitive impairment and exhaustion are often literally unspeakable. Most times ME strikes relatively quickly (within hours, days, weeks). Once active and productive children and adults are robbed of vitality, with disability ranging from completely bedridden to somewhat functional. Variable disability usually progresses to premature death.”

We not only have a case of words being used interchangeably, there is a bit of a problem with the name change. We will get back to the interchangeable words after we finish talking about the names used for this illness and then the significance of the interchangeable names.

The description of M.E. speaks for itself, I don’t need to explain that any further. If you want to read further about M.E., you can click here to read about it.

If you think of those 2 names, which name would you prefer the illness to be called if you had the illness? M.E. or CFS.?

If you had to tell a doctor or someone that you had an illness called Chronic Fatigue Syndrome, do you think they would take you as seriously then if the name was called Myalgic Encephalomyelitis?

Do you think the treatment or care you receive would be any different if the name was called CFS instead of M.E.?

What do you think when you hear the name Chronic Fatigue Syndrome?

What do you think your family or your friends would think if you told them today that  you had an illness called Chronic Fatigue Syndrome?

What do you think many doctors think when they hear the name Chronic Fatigue Syndrome if they aren’t familiar with the name?

If you had to choose, which name would you pick, Chronic Fatigue Syndrome or Myalgic Encephalomyelitis?

Those are interesting questions to think about because one day you may be faced with this condition or someone in your family, your husband, your wife, your children, etc.. The people reading this who have the illness know what I am trying to point out.

Think about what the patients who have this condition feel when they have to say “Chronic Fatigue Syndrome” as opposed to “Myalgic Encephalomyelits.”

Do you think the patients may have been treated different because of the name Chronic Fatigue Syndrome?

Do you ever think patients would be subjected to abuse from medical people because of the name of their illness?

Do you think patients would be harmed because of the name Chronic Fatigue Syndrome?

Chronic Fatigue Syndrome

In 1994 a case definition was published for CFS that was called The CDC (Fukuda 1994) Definition for Chronic Fatigue Syndrome. The list of symptoms on the original document of the 1994 Fukuda Definition for CFS looked were listed this way:

•substantial impairment in short-term memory or concentration;
•sore throat;
•tender lymph nodes;
•muscle pain;
•multi-joint pain without swelling or redness;
•headaches of a new type, pattern, or severity;
•unrefreshing sleep; and
•post-exertional malaise lasting more than 24 hours.

To be diagnosed with CFS, according to the 1994 Fukuda Defintion for CFS you had to have 4 of those symptoms.

If you look at those symptoms, where would you look first for the most important symptom, the top of the list or the bottom of the list?

That is actually an important question because where would most people automatically look?

Most people whether they are a doctor or a non medical lay person would look at the top of the list.

The CDC finally took notice after it was brought to their attention, and probably thought the same thing, and changed the order of that list May 14, 2012. If you look at the CDC Website, the list of symptoms are listed this way since May 14, 2012:

•post-exertion malaise lasting more than 24 hours
•unrefreshing sleep
•significant impairment of short-term memory or concentration
•muscle pain
•pain in the joints without swelling or redness
•headaches of a new type, pattern, or severity
•tender lymph nodes in the neck or armpit
•a sore throat that is frequent or recurring

If you look at the 2 different lists, the symptom that was on the bottom of the original list, “post-exertional malaise lasting more than 24 hours”, was put on the top of the list the in 2012.

It took 18 years for the CDC to make that change!

Why did the CDC change the order in which the symptoms were written changing the order to where the symptom that was originally on the bottom of the list to the top of the list?

The symptom of “post-exertional malaise lasting more than 24 hours” is actually the key hallmark symptom of the illness. The way the definition presented the list of symptoms in 1994, that symptom was on the bottom.  That information was brought to the attention to the CDC, but the order of the list wasn’t changed by the CDC and put on their website until May 14, 2012.

Why would where that symptom be listed be a problem?
The symptom was originally listed on the bottom of the list.
The word that is used in the symptom is called “Malaise.”

We know the symptom was listed on the bottom of the list and we know the word that was used was the word “Malaise.”

What is wrong with the word “Malaise”?

We have to take a look at the meaning of the word “Malaise” to determine the reason.

“Malaise”

Webster’s Dictionary:

Ma`laise´

n. 1. (Med.) An indefinite feeling of uneasiness, or of being sick or ill at ease.

Noun 1. malaise – physical discomfort (as mild sickness or depression)
Synonyms: unease, uneasiness

Why would doctors or health practitioners possibly ignore that particular symptom?

According to the definition above, the word “Malaise” would not be considered something serious, something mild as in mild sickness or could even be something considered psychological such as depression.

The symptom was also originally placed on the bottom of the list..

Most people, whether doctors or lay people both groups are going to look at the top of the list first, because the most important or key symptom of an illness is usually placed at the top of the list, the least important on the bottom of the list.

Post-exertional malaise lasting more than 24 hours” was listed on the bottom of the list, and the word “malaise” was the word used to describe the symptom. Because of those 2 factors, that was something that was very easily missed.  It was also something that was very easily dismissed as a key hallmark symptom of the illness.

I want to point out that most health practitioners at the time, in 1994, in this country did not have knowledge of M.E., because they did not have knowledge of the M.E. epidemics because M.E. was not taught in the medical schools in this country or in the medical textbooks. The leader of the illness definition team did have knowledge of M.E. because he had access to  the documents of all of the M.E. epidemics that were documented since 1934 and they were used during the redefinition effort at the NIH as well as the CDC.

The Interchangeable Words!

What are those interchangeable words and what is the significance of the interchangeable words?

The three interchangeable words involved are Malaise, Fatigue, and also Weakness.

We have to look at the meanings of those three words.

We already went over “Malaise” but I will put the meaning here again.

Malaise

Webster’s Dictionary:

Ma`laise´

n. 1. (Med.) An indefinite feeling of uneasiness, or of being sick or ill at ease.

Noun 1. malaise – physical discomfort (as mild sickness or depression)
Synonyms: unease, uneasiness

I personally never attributed my symptoms to malaise, because the symptom was not malaise, it was more severe than malaise.

Fatigue

1fa·tigue

-weariness or exhaustion from labor, exertion, or stress

-the temporary loss of power to respond induced in a sensory receptor or motor end organ by continued stimulation

I always thought fatigue was ridiculous too because back then, I wondered why they picked “fatigue” for the name, because our symptom was more severe than fatigue.

Anyone can feel weary if they are tired, and have a lack of energy too. A lack of energy can be any condition. Our symptom is more severe than just a lack of energy, because people can still work with a lack of energy, they can still get through the day.

Weakness

ˈwiːk.nəs

“lacking strength or energy, or likely to stop working 

“Alack of physical or muscle strength and the feeling
that extra effort is required to move your arms, legs, or other muscles.
If muscle weakness is the result of pain,
the person may be able to make muscles work, but it will hurt.”

When we are crashed, or post exertional anything for that matter, what happens?
We are in bed because we cant move.
There were times when I personally was so weak, I could not sneeze, my body was too weak to go through the motion to actually sneeze.

Our symptom is an abnormal severe total body muscular weakness with little to no functionality, after any type of activity whether trivial, cognitive, exertional, exercise, with an abnormal recovery response of up to 7 days, and even weeks or months, and that’s what makes the illness a debilitating, disabling illness. As well as the other symptoms we get with this illness including immune abnormalities, at the same time that we experience the abnormal severe muscular weakness with an abnormal recovery response that are exacerbated and cause debilitation after activity whether trivial, cognitive, exertional or exercise.

Malaise and Fatigue are like a gust of wind compared to weakness.

That’s the difference between the 3 words that are being used interchangeably, they are not the same, they are different.

That’s why the Fukuda Defintion is incorrect, why its negligent, and can be proven negligent with a Webster’s Dictionary just like I demonstrated above.

You don’t even need a medical book, you just need a dictionary!

This is also why people are homebound and disabled, because of that incorrectly worded definition that doctors didn’t pay attention too because they didn’t equate it with what we were actually feeling.

That’s why there were many doctors who said to people they need to exercise, because they didn’t understand what the patients were talking about when the patients said they felt worse. The CDC said to tell the patients to keep exercising and that’s what the doctors did.  This is all because of the interchangeable use of the words “fatigue” and “malaise.”

Doctors also said patients were depressed because Malaise is actually a psychological word too.  Doctors thought patients were depressed, that post-exertional malaise could’ve been interpreted as depression after exertion.

It’s also actually an example of what I call “hear-say” medicine, they “hear” what other practitioners are saying and then they start preaching the same thing. Instead of just going by hear-say, these practitioners should of done a little research and check the actual medical books in regards to the epidemics to see if the document they received, which was the 1994 Fukuda Definition for CFS was indeed correct. That’s what should’ve been done when that definition came out in 1994. Practitioners should’ve double checked to see what they were reading was actually correct.

The thing that was always told to doctors and nurses and that was , always double check, always “CYA.”

If you don’t double check and “CYA,” you will be in danger of not only harming patients, but getting sued and losing your medical or nursing license.

Malaise shouldn’t of even touched the definition of this illness!

The use of the word “malaise” actually harmed and permanently disabled people because it was interchangeably used to make the illness look less severe and even psychiatric.

Notice how doctors that aren’t used to saying M.E. keep saying “Chronic Fatigue”, because they were told the name of this illness was “Chronic Fatigue Syndrome” and that is what it was being called for 20 years.  They need to practically be “reprogrammed” to call it the right name!

This is the same thing that is happening with those interchangeable words.
They have used those words so interchangeably, they don’t even know the difference.

If these people are going to be in the “helping people profession”, they need to know the difference in the meanings of these words and use them correctly. The interchangeable use of the words has harmed patients.

The question I ask anyone who has read this,

Should these patients, ME, CFS or whatever name the illness is being called today,  or any other patients for that matter, have been treated the way these patients have been treated?

Aren’t these patients people too?

There is something called “Do No Harm” which was promised by all health practitioners including myself when we graduated our nursing and medical programs.

Did these patients escape “harm”?

As far as a patient being diagnosed with a diagnosis of “Chronic Fatigue Syndrome”, “Do No Harm” was thrown out of the window 20-30 years ago.

What makes this patient group any less deserving of the same patient care as any other group?

Why was this patient group treated in such a fashion?

This patient group was treated this way, because of the name of the illness called “Chronic Fatigue Syndrome” which had nothing to do with fatigue.

And,

Because of the incorrect placement and wording of the key hallmark symptom of the illness called “Post-Exertional Malaise” in which malaise had nothing to do with that symptom, this patient community was harmed, this patient community suffered abuse from medical people, this patient community suffered the lack of care or no care, this patient community suffered not only disability, but this patient community are invisible because they are unable to leave their homes and many are unable to leave their beds.

Not only the 1994 Fukuda Defintion for CFS was negligent, but it was also a crime to humanity!

The reasons I described are probably the biggest reasons why this illness is in such a sad state of affairs!

Incorrect and interchangeable use of those simple words which the names of symptoms contributed to that sad state of affairs!

Will the patients get even as much as an apology?

At this point, I cant answer that question.

Dr Jose Montoya was quoted as saying:

“Hopefully one day, my dream is that our medical community will produce a formal apology to the patients that – not having believed them all these years – they are facing a real illness.”

I hope the same thing that Dr. Montoya hopes, that our medical community will apologize to this patient community who have not been believed and are ill, disabled and homebound.

 

“The Other Side Of The Stretcher” (c) 2014

 This blog is not for medical advice.
For medical advice, you must speak with your physician!


The Other Side Of The Stretcher- My Personal Story

 

 

 

 

 

May 12th Is ME Awareness Day!

 

My Personal Story

The Other Side Of The Stretcher”

 

Where did I get that name “The Other Side Of The Stretcher?”

I was a Registered Nurse who became a patient, thus went to
the other side of the stretcher.

Another nurse actually made that statement to me 24 years ago when I had a procedure called a bronchoscopy which was done in the operating room. The nurse, who happened to be the nurse in the operating room said, “ive never been on the other side of the stretcher, so I cant honestly tell you how I would feel being in your shoes right now.”

I never forgot that and I when I actually became a patient with ME/CFS I referred to myself as being on the other side of the stretcher. That was 20 years ago this past January of 2014.

Before ME/cfs reached a level to where I was no longer able to work (yes I was one of those people thinking the “thing” would go away until I found out what “the thing” or mystery illness was), I was an active Registered Nurse over 9 years in NYC.

When I found out what the “thing” was about May of 1993, I was relieved.
I wasn’t fully schooled yet on the condition, but I was
relieved to finally have a “name” for what had been going
on for basically all of my life since early childhood.
I didn’t know what was ahead as far as being that person
on the other side of the “Stretcher”, until I officially
became a patient and was in the crash from hell in January of 1994.

My story actually goes way back to when I was very very young, 49 years ago, I was 11 months old.  There was an measles epidemic at my brothers school and my mom said that my brother “brought home the bug.” This happened a week before I was supposed to actually get the measles vaccine. It was then too late for the measles vaccine as I had the measles. Up until then I was healthy.

After the measles, I always had some type of cold, flu, bronchitis, high fevers, painful ear infections, and seizures. My mother said she even had a supply, sort of an emergency kit, which consisted of phenobarbital for the seizures and adrenaline/epinephrine for when my lips actually turned blue because of respiratory problems from the bronchitis.

My earliest memories when I was 3-4 0ld, were my mother actually screaming at the landlord, as we lived in a 3rd floor apartment in Brooklyn NY, when the heat was broken, “If anything happens to my daughter, I will kill you.” He did not kick us out after she did that, he fixed the heat very quickly each time.

Things were also a little different back in those days. Doctors did house calls, the doctor came to our home often.  The Doctor also said to my mom things such as,  “keep her inside until she gets better” and “let her sleep, don’t wake her up.” 

Today doctors don’t do house calls and they don’t say “keep her home until she is better,” they say something more like “she can go back to school or go outside to play after she is on the antibiotics 24 hours.” In other words, back in the days when I was a little girl, children were allowed to be sick, today they are not allowed to be sick or they aren’t given the proper time to recover.

I also did not start speaking when children normally do. My mother thought it was because there weren’t any children in the neighborhood for me to play with and that she had to find a nursery school so I would have other children to play with.  The real problem was, was that I was actually speech delayed because I was 3 1/2, close to 4 years old and I was still not speaking.

My mother found a teacher who was originally from Israel, who ran her own nursery school. My mother enrolled me in the nursery school.  It was that teacher who taught me how to speak.  My mother and father always talked about when I started talking. My parents said when I spoke, I spoke with the same Yiddish accent that the teacher at the nursery school had.  Instead of saying a word like “swing”, I pronounced it as “sving.” My parents got a kick out of that.

Between the ages of 4 and 5 years old, I had a kidney infection that was caused by a strep infection. I was very ill and the doctor told my mother to bring me to the hospital. I remember being in there a week. 

The strep infection that affected the kidneys was from strep infected tonsils that I repeatedly had. My mother stated it had gotten so bad, I had strep infected tonsils every 2 weeks, so the tonsils had to come out. I was 5 years old at the time.

I remember when my mother was preparing me to have the tonsilectomy.  She actually did a really good job because I remember skipping around saying “I’m getting my tonsils taken out” and being very excited about it.  I also remember  when she brought me to the surgical center where the tonsilectomy was done, I remember being on the operating room table before the surgery, I knew I had to count backwards, 5-4-3-2-1. I remember saying to the doctor “OK” when I started to count backwards. 

I still remember waking up in the recovery room after the surgery was done, and I remember my mom carrying me into the house when we got home.

After the tonsils were removed, I started getting better as far as my health. I didn’t get sick as much as I was getting sick between 1 and 5 years old. 

I was able to attend school but from Kindergarden all the way through High School, my mother had a hard time waking me up and getting me out of that bed. There was never a day that I wasn’t late for school.

I was sick more than the other kids in school and always had that on and off sore throat.  I took longer to heal as far as any type of cut or scratches. But I would always bounce back,  and was always able to attend school and was able to pass my classes.

There was one year in elementary school that I was probably absent about 1/2 of the year in total days.  I remember being sick repeatedly with some type of viral illness, 104 fevers, etc.. A couple of days before Christmas break, I remember my mother saying to me, there is 2 more days, why don’t you try to go to school those 2 days.  I remember being able to, and then the Christmas break started.

Another thing that I had trouble with during school, was that I could never focus on the textbooks, thus I never really read them. I was able to take good classroom notes. I passed all of the tests. I always thought, well, the other kids are probably smarter than me. I didn’t know back then, that I probably cognitive difficulties already.
The same thing held true when I was in college. I took excellent classroom notes and was very fast. I could actually transcribe almost every word the professors were saying during the lectures. I had the same problem with the textbooks, I had trouble focusing and became very tired when I tried to read for any length of time. So, I would highlight sections of the material that was covered in the lectures and work around the issue that way. What I had done seemed to work The good thing was, I made it through the Nursing program and became an RN, passed my nursing boards the first time around.

One thing I do remember from when I was that young, until I was older in High School, is that anytime I did get sick, my mother did not let me go out of the house until I was fully well. My mother also always let me sleep, never woke me up until I woke up. She did those things because that’s what the doctor said to do. What she actually did was keep me from becoming sick and disabled sooner.

What I didn’t know until later on in my life, was that my mother always thought something wasn’t right. The doctors never said anything was wrong, but my mother knew. The reason why she knew, was because I got sick more than the other children and that she had to keep me home until I was fully recovered and not just until the fever was gone and that I had to sleep many hours. My mom also didn’t tell me until later on, was that she knew she had the same thing wrong with her, she just didn’t know what it was.

I found work easier than college, I realized was sort of an audio-visual learner. I picked up the routine very quickly and did very well in my job.  On the days that I was off from work, I would tend to hang around the house in my pajamas, I was very tired. I felt that “thing” hanging around in the background from when I was a little girl. I rested most of my days off.

When I got married, it became more difficult.  The days that I worked, I was so tired when I got home from work, I went right to sleep. I didn’t cook dinner on those days.  I remember people at work talking about what they made for dinner the night before. If my co-workers asked me what I had made for my husband for dinner the night before, I was so embarrassed to say that I was tired and went to sleep, I would say that I made some type of dinner.  The “thing” was hanging around in the background, still didn’t know what it was, but knew I had to rest when I was tired.

I also realized, I needed to work closer to home and work hours that were more regular.  I did just that, I changed jobs, from a hospital in Manhatten to a hospital closer to home in Staten Island. I also changed my specialty from CCU to the Operating Room. The Operating Room was open Monday to Friday, closed on weekends and holidays except for on call.  On call was usually once a month.  I was still tired on my days off, but felt a bit of a difference because I was no longer working a 12 hour night shift.  The “thing” was hanging around in the background, but as long as I kept a regular schedule and ate regular meals I did ok. I still didn’t enquire about what that “thing” could be.

I remember it was 1988 and my husband said to me, you get sick more than I do and I heal faster than you do. I said to my husband, don’t worry, one day we will find out what my “mystery illness” is, not realizing that 5 years later we would actually find what that mystery illness was.

In 1990, I gave birth to twins, my daughter and son.  It was a rough pregnancy, I was in the hospital 10 weeks before the delivery, in and out of pre-term labor. I was also not allowed to get out of the hospital bed. I was on full hospital bed rest.  I always wondered if that long hospital stay on full bed rest was a preparation for what was ahead of me not even 5 years later.

A twin pregnancy is considered a high risk pregnancy as 50% are born early.  This pregnancy was the toughest that my ob-gyn doctors had ever seen.  Things happened during the pregnancy that they could not understand including becoming so anemic at one point, they gave me paperwork for family members to fill out in case I needed a blood transfusion, so family members could donate blood. They did that because they said I delivered at that point, they would have to transfuse me because they already knew I was going to be delivering via C-section.

I remember during the anemia problem, I said to my doctor, well im usually tired all of the time everyday. I also said that I thought I always had an iron deficiency.  My doctor said to me, you don’t have iron deficiency anemia, they knew that because they did a extensive work up to see what was causing my CBC numbers, particularly the H&H to drop so low. 

I started thinking about that “thing” that had always been hanging around.  I knew it had something to do with that, but didn’t know how to explain it to the doctors. Since I was a nurse, it was embarrassing to even say that because I still had no idea what the “thing” or “mystery illness” was.

I was also very dehydrated all of the time.  When I first went into the hospital for pre-term labor, I had 2 IV’s, one in each arm, they were infusing each of them 200 cc’s per hour via iv pumps for 3 days.  I was also so thirsty all of the time while I was in there, instead of calling the nurses all of the time to refill my pitcher with water, my husband brought me a 5 gallon container so I would have plenty of water to drink and not have to bother the nurses.  The nurses were so kind, every morning they took my 5 gallon container to the ice machine, filled it up with ice, and then filled it up with water. 

Even though I was drinking all of that water, when I slept at night and then woke up in the morning, I was so dehydrated that my urine was almost brown.  One day the one of the nurses became very alarmed, I told her that happened every morning, and once I started drinking water again, the urine would turn back to a normal color.  The nurses were also seeing things they had never seen before.

The day my twins were born, they were 35 weeks, 5 days and both of them were over 6 pound.  Everyone was so relieved!  They as in all of the staff and my doctors sort of let their hair down and said that they didn’t expect me to walk out of that hospital with my babies. They said my babies were miracle babies! 

Months later after I had the twins, I had went back to work. Maybe a month after I went back to work I woke and had trouble breathing. I then went to the emergency room, the doctors sent me for a chest x-ray, they said I had bronchitis.  They had given me a prescription for antibiotics, and sent me home.  I was home sick from work for about 10 days. I knew it had something to do with the “mystery illness” but still didn’t know what the “mystery illness” was.

The bronchitis came and went for 4 months. My co-workers were worried about me.  They kept saying to me that I didn’t give myself a chance to recover after the pregnancy. They told me later on that I had actually looked very bad as well during that time.

During the 4 months of these bronchitis episodes, the doctor couldn’t figure out what was wrong. He had ordered so many tests including a Cat Scan of my head and could not find an answer. Finally the doctor said, you may have a tumor in your lung that we cant see on the chest x-ray. When the doctor said that to me, my life flashed in front of my eyes, I was only 26 years old and I just had my twin babies months before.  I actually started wondering if I was going to die because I had become so ill.

The doctor also told me that I had an anxiety problem and was probably depressed. I felt so lousy, I believed the doctor and went to a psychiatrist.  That particular psychiatrist was also board certified in Internal medicine and was skeptical of what the doctor was actually telling me.

The doctor admitted me to the hospital during the 4th month of the bronchitis episodes.  He said that I needed to have a bronchoscopy to see if I had that tumor that we couldn’t see on the chest x-ray.  I was in the hospital 2 weeks on IV antibiotics, because the doctor said  I had mycoplasma pneumonia. While I was there, I realized I was on a floor where all of the cancer patients were. The cancer patients were either getting chemotherapy of they were being sent home to die including the woman that was in the other bed in the hospital room that I was in.

During the 2nd week of the hospital stay, I went to the operating room for that bronchoscopy to see if there was a tumor in one of my lungs. The good news was, there was not a tumor in one of my lungs, and the biopsy that the doctor did, of a supposed polyp, was negative.  At the end of the 2 weeks, I was discharged to go home and I was so happy to see my babies and be back home.

End of November-Beginning of December 1990:
When I went back to the psychiatrist, the psychiatrist said he thought I needed a 2nd opinion.  When I saw I saw the psychiatrist again, he said that he wanted me to go for that 2nd opinion because he said that I shouldn’t of still been on the prednisone that the other doctor had prescribed. The psychiatrist said that it was normal to have a certain amount of bronchospasm after the pneumonia, that that I probably did not need it anymore.  The psychiatrist also did not believe that I had asthma that the other doctor said I had.  The psychiatrist handed me the business card of the pulmonary specialist that he wanted me  get the second opinion from.

I went home and told my husband about the 2nd opinion. He said it was a good idea because he didn’t think the doctor who had been treating me knew what he was doing. I then made the appointment for the 2nd opinion.

At this time which was the beginning of December 1990, I went to speak to the nursing director at my job. The nursing director told me that she was going to give me an extended maternity leave and to not to come back until I was fully recovered.  She too thought that I did not give myself a chance to recover from the twin pregnancy.

I then went to see the doctor for the 2nd opinion, a pulmonary specialist, my husband came with me.  I told the doctor everything that had happened. While I was there, I had a chest x-ray, pulmonary function test and blood work.  The doctor had gotten his copy of the PDR.  He looked up Prozac since that was the antidepressant that the psychiatrist had prescribed to me.  Prozac was still a new drug, was only on the market about 3 years at that time.  The doctor stated that he didn’t know much about Prozac at that time, he then pointed out that a side effect of Prozac was Asthma, Bronchitis and Pneumonia, that maybe I needed to cut the dose.  I also signed paperwork for the hospital to release the records so this doctor could see the records from the 2 weeks that I was in the hospital. Before my husband and I left, the doctor stated that he didn’t think I had asthma.

I went back to the psychiatrist and he was very happy and relieved for me as he did not think I had asthma either.  We then cut the Prozac dose to 1/2 of what the dose was.

I think it was about 2 weeks later, that my husband and I went back to that doctor as he just received the records from the hospital.  When we got there, the doctor had the chest x-ray films from the hospital and said that I did not have pneumonia, and that I did not have asthma, that he could not tell me what I had, but I didn’t have pneumonia.  He also didn’t see any type of polyp on the chest x-ray that the other doctor said he had biopsied. He stated that I did not need to be on the prednisone anymore, and that I should start tapering off the drug.

Not long after getting this information, the psychiatrist said that I was not depressed and I could stop taking the Prozac.  The psychiatrist said that they would always be there in case I actually did need them.  I was so happy, I said thank you so much, I gave him a big hug.

I stayed home a few more months to recover from the “mystery illness” as I still did not know what this illness was.  When I did go back to work, I went back to work 2 days a week and no more than that, as I had my twin babies at home and it also gave me a chance to rest between the 2 days. I also thought that maybe I was actually beating what that “mystery illness” was, but at that time, I still did not know what that illness was, that was the Spring of 1991.

My baby, who is my younger son was a surprise, we didn’t exactly plan him.  My husband insisted on taking me away for a week to get away thinking I would get a little more of a break, relax and maybe help with my recovery of what we didn’t know I was recovering from at that time except what was probably that “mystery illness.”  When we came back from the vacation, a few weeks later we found out another baby was on the way.  My husband was actually disappointed that it wasn’t another set of twins believe it or not.  This was the summer of 1991.

 This pregnancy was uneventful compared to the last pregnancy.  I had a few episodes of pre-term contractions that sent me to the L&D, those were caused by dehydration and urinary tract infections, which the doctors administered IV fluids and gave me antibiotics.  Otherwise the “tiredness” you “never knew” that you are supposed to feel during a pregnancy, I did not feel with this pregnancy.  I did very well, I rested on my days off from work, took naps when my twins napped, otherwise felt fine.

My OB/GYN doctors were getting nervous around the 7th month and kept asking me when was I going to stop working and take maternity leave.  They must’ve been suffering a bit of PTSD from my last pregnancy :).  I finally said ok, I will take maternity leave if it makes you feel better :).  This was which was sometime during the month of January 2002, I think around the 3rd week. 

Unfortunately right after I started that maternity leave, my father in law passed away the end of January 1992.  My father in law had a stroke during surgery the summer before and he never recovered. My son was due in less than 2 months at that point.  During that week of the funeral, my husband and I helped his mother, cooking, serve coffee and cake to the family members who visited in the evening, etc…  I pushed a little too much that week.  I felt “the thing” or “mystery illness” kicking in,  it kicked into a flu, upper respiratory infection and laryngitis the week after the funeral.  My OB doctors ordered antibiotics. I thought oh, no, this cant be happening, my son is due in 6 weeks, I can not have this and deliver a baby too, this will not be good.  The scare lasted 3 weeks, then I was recovered.  I was very relieved.  This was the end of February 1992.

It was the 2nd week of March 1992, I went to my OB/GYN doctor for my appointment which was weekly at that point for the last month.  There was a 2 week discrepancy with the due date so my doctor sent me for an ultrasound to see where I was and to see if we were going to try to go ahead an let me try to deliver via v-bac delivery or schedule a C-section because according to the current calculations, I was 41 weeks gestation.  I then went to the OB specialist for the ultrasound appointment to find out what the gestational age of the baby was.  The first thing the specialist said was, you are almost 39 weeks (actually 2 weeks sooner according to the current calculation, and also my correct calculations) ,”that baby has a big abdomen, 10 lbs plus or minus 1/2 of a pound, your not planning v-bac are you?”  I said, oh yes I am!  He said, “oh no, no v-bac for you, you will be having a c-section.”  I thought, well, my doctors will let me try, they are v-bac advocates….yeah right! 

Of course I was in denial.  When I went to see my OB/GYN for my appointment, she said go the hospital tomorrow for your blood work, you are scheduled for a C-section the next day.  I said oh no, she said oh yes, his shoulders are too wide, he will get stuck and we will have to do a C-section anyway.  I cried like a baby, but I got over it, went to the hospital for my testing and packed my bag for the hospital.

March 19th, 1992, my son was born! There was a snow storm and we drove through a foot of snow to get to the hospital for my son to be born.  The specialist who did that ultrasound the week before was pretty much on the money with that weight calculation.  He was 9 pounds, 11 ounces! Everything went text-book perfect, that day could not have went better!  The nurses knew me because of the last pregnancy where spent 2 1/2 months in the hospital, they picked a nice room for me.  The labor and delivery nurses knew me, they were excited to see me and finished the last minute preparations before I was brought into the L&D operating room. My doctors picked the best anesthesiologist who did an awesome job with the epidural anesthesia, the epidural lasted 12 hours. After I was in the recovery room, they wheeled me into the nursery on the stretcher so I could hold my baby, then they brought me to my room.  It was a wonderful day.  It was also an almost birthday present for my husband as his birthday was 2 days later :).

This time around, I stayed home for 6 months before I tried to work again.  I stayed home, gave myself a chance to recover, enjoyed my new baby, and spent time with my twins.

Spring of 1993- Still no name for the “Mystery Illness” or “The Thing.” At this point, I had changed jobs from the Operating Room 2 days a week, where I was on my feet the whole day those 2 days to Cardiac Rehab, where I was able to sit at a desk, much easier. I also found a per-diem job at a same day surgery center, and would work there 1 day maybe over other week depending on how I felt. I had changed jobs because I could not commit to the 2 same days a week in the Operating Room.  I also had another baby who was a surprise.

There was another nurse at the Cardiac Rehab that had the same symptoms as I did. We talked about them every time I saw her.  We would bring in magazine articles to show each other regarding the symptoms. We were wondering if it was that “Epstein Barr” thing that Cher had.  Cher had been on tv 5 years previously where she about her “Epstein Barr” illness that a doctor had found when she had a physical before she was going to be filmed in a movie.  We then saw that the “Epstein Barr” illness was being called Chronic Fatigue Syndrome.

So one day I said to the other nurse who I worked with at the Cardiac Rehab/my co-worker, I will go to my family doctor, tell him I think I have it and see what happens.  That is what I did.  The family doctor ordered blood work.  When I went back to the family doctor he said I had elevated active Epstein Barr titers, that I probably had the illness.

My family doctor said he didn’t treat the illness, but he gave some suggestions according to what he knew.  He said if I needed to sleep 14 hours, sleep 14 hours. Take vitamins, make sure I ate properly.  He asked me if I exercised. I said yes. He then asked me where my exercise machines were. I said they were in the basement. He said make sure the windows are opened when you are using those exercise machines because you need to get oxygen to your brain, that people with this illness don’t get enough oxygen in their brain. If you notice, he did not know about the exercise issue, which IS the problem with this illness.

When I went back to work after this doctor appointment and told my co-worker about it, we were sort of excited, she figured that she sort of got diagnosed too.  Every time we saw each other, we would talk about our vitamins, I think I remember that we even went to the health food store together.

At this point, when I had a flare-up of this illness, it would last 3 weeks. During those 3 weeks, I had to stay home from my one or 2 days a week from my Cardiac Rehab job.  If I had known what was coming ahead of me 8 months later, I would’ve modified my lifestyle even more. I still wasn’t educated regarding the exercise or “over exertion” which included how much I worked, because the literature wasn’t out there.  The only literature I saw, was that when you were tired, then you should take a nap.

There was a key item missing out of the literature, and that was exercise, aerobic exercise, as in NO aerobic exercise, graded type exercise, and exertion.  These missing items were and are a still huge huge problem that is the main disabling factor of this illness today.  I knew about the over exertion from my personal experience, when I over-did it, I got sicker, but I didn’t know that was a missing item in the literature or anything I could find about the condition at that point.  There was not any information about a symptom I had never even heard of at the time, and that symptom was called “Post Exertional Malaise.” 

End of 1993, at this point, I had 2-3 week crashes/relapses and I was dragging myself to work. My kids and I all got the “flu” and respiratory infections.  I went to an internist, I figured the internist would know a little bit more about how to treat me.  When I told the internist I had Chronic Fatigue Syndrome, he asked me when I was diagnosed with that and did blood work, gave me a prescription for antibiotics.  When I followed up with the internist the next week, he confirmed via my labs that I had active and elevated Epstein Barr titers.  I asked what kind of treatment is there for this.  He said there is none, that I would have to rest until I felt better.  I thought oh my, how long am I supposed to rest, this thing felt like it was not going away at this point.

January of 1994, 2nd week, I was still not feeling well, thought I would bounce back as I had previously.  I decided to work the day I was on the schedule to work at the same day surgery center I worked in one day every other week or when I felt well enough to work there.  The day I was scheduled to  frost the car to get to work. It took over an hour to get there.  Everyone was late including the patients, so it all worked out.  At this point I was also bringing my lunch with me to make sure I was eating properly. 

When it came time to drive home, the roads were a mess and the highway was a mess because of the ice storm, I had to drive slow.  While I was driving, it was time to take the anti-biotic that I was still taking that was ordered by the internist for the respiratory infection. As soon as I took that antibiotic, I felt like I was on fire, I looked in the rear-view mirror, I was actually red as a lobster. I thought oh no, im having an allergic reaction to that antibiotic. I was driving on the highway when this was happening. I opened up the window as I felt a bit short of breath and was actually leaning my head out of the window.  I thought, I need to find a pharmacy that is opened because when I looked in my purse I saw that I did not have my Benadryl with me as I usually did because I started experiencing allergic reactions since the previous year.

I got off at the next exit, drove one blog and there was a pharmacy. I went in to the pharmacy, right to the counter and asked the pharmacist where the Benadryl was, that I was having an allergic reaction.  The pharmacist handed me the Benadryl, and I took it right there before I paid for it.  I then got back into the car, figured I could make it home, but  I kept feeling like I was getting “hotter.”  I thought, nope, this allergic reaction isn’t going away.

I was near the last exit in Brooklyn before the exit to the Verrazano Bridge.  There was a hospital right off of that last exit. So I got off of the exit, parked the car, went into the emergency room.  There was a man standing there, he said sign this, and the will call you when they get to your name. I thought, what is that man crazy?!?!

An emergency room nurse then walked by I said im having an allergic reaction, she took a look at me and took me right in.  They gave me an injection of epinephrine and watched me for a while.  It always feels like you are in those places forever, I really don’t know how long I was in there. I do know when the nurse let me leave, it was still light outside and this was in the month of January.  So it had to be before 5:30 pm I would think.

It didn’t take long, I was 1/2 way across the Verrazano Bridge, which is about a 2-2 1/2 mile span, and I felt the fire again. I looked in that rear view mirror and I was red as a lobster again. I thought well, I cant turn around here, I have to keep going, and hope for the best.

I did make it home ok.  I was red as a lobster until 11 pm that night.  I was devastated.  I thought, this illness is here to stay and I am never going to get better.  A good friend of mine, who is also a nurse, whom I was talking to on the phone that night, I said, no on  knows how to treat me, this is awful.  she said let me make some phone calls, I will see what I can find as far as help.

30 minutes later, my friend gave me 3 phone numbers and one of the phone numbers were Dr. Susan Levine. I did have Dr. Levine’s phone number.  I had a copy of the Manhatten yellow pages. She was the only infectious disease doctor in the yellow pages at that time who treated “CFS” or “CFIDS”, I didn’t know she was a reknown doctor or a researcher doctor yet.

The next day I called Dr. Levine’s office and she actually answered the phone, she had an appointment opening the next week. I thought oh wow, how awesome is that, I do not have to wait for months. My first appointment was January 31st, 1994.

Then the treatment began!

The thing about the treatment…….The insurance paid at first, but then it didn’t.  The meds that made a difference were “off-label”, meaning, they were not approved by the FDA and you had to pay cash if you wanted them.

20 years later…..Those meds are still off-label.

None of those meds and the other experimental immune modulator Ampligen have been approved. I thought by now they would be approved. I thought 10 years ago all of these meds would be approved…..

Not one…..

None….

It was the 10 year mark and $250,ooo later….no more money for off-label drugs and that was 2004.

Its 2014…..we still do not have those meds.

We have some things the insurance pays for, but not those. The immune modulators and immune globulin are what decreases or inactivates those viral titers and helps us as far as functionality, decrease of the crash time, and less to no infections.

Its 2014 and we still wait!

How much longer?

I don’t know, it doesn’t look like we are even close yet.

Nothing has changed 😦

 

 

My blog was part of the #May12BlogBomb hosted by Sally “Just ME”.

You can click HERE to check out some of the other blogs who are also participating in the #May12BlogBomb for ME awareness day!

Thankyou for stopping by and please spread the word for

May 12th ME Awareness Day!

 

 

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“The Other Side Of The Stretcher” (c) 2014

 This blog is not for medical advice.
For medical advice, you must speak with your physician!

 

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