Tag Archives: May 12th

“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!


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!