Tag Archives: Myalgic Encephalomyelitis

US District Court: HHS/NIH Violated Federal Law in Response to FOIA Request for IOM Documents

ThankyouJeannette
This is a Major Win For the M.E. Patient Community!
A Big Thanks From All of Us In The M.E. Patient Community To
Patient Advocate Attorney Extraordinare
Jeanette Burmeister For A Job Well Done!!!!
ūüôā

Thoughts About M.E.

I am pleased to give an update on my FOIA lawsuit:

Yesterday, the United States District Court for the Northern District of California ruled that HHSandNIH(government)violated the Freedom of Information Act (FOIA) when they improperly withheld documents from me in response to my FOIA request regarding HHS’s contract with the Institute of Medicine (IOM) for the study of diagnostic criteria for ME/CFS.

Accordingly, the Court granted my motion for summary judgment and ordered the government ‚Äúto produce, within 60 days, all documents responsive to [my] request that are not covered by any exemption to FOIA‚Äôs disclosure requirements.‚ÄĚ [emphasis added] The Court also¬†denied the government‚Äôs motion for summary judgment asking for a dismissal of my lawsuit.

I believe that holding HHS and NIH legally responsible for their violation of federal law is a tremendous victory for our patient population. However, since this litigation is ongoing…

View original post 880 more words

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“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 ‚Äď 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:

‚ÄėThough 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‚Äô -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 ‚Äď 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‚Äď1976) and a Home Office minister (1976‚Äď1979).

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………

‚ÄúThe Other Side Of The Stretcher‚ÄĚ (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.

‚ÄúThere is no such thing as Chronic Fatigue Syndrome‚ÄĚ.

‚ÄúChronic Fatigue Syndrome is depression.‚ÄĚ

‚ÄúWho is your doctor?‚ÄĚ

‚ÄúIs your doctor an internist?‚ÄĚ

‚ÄúIf your doctor is an internist, medicare is not going to pay me.‚ÄĚ

‚ÄúYou should‚Äôve went to my friend Dr. B. down the road at the urgent care center.‚ÄĚ

‚ÄúWho filled out your disability papers, how interesting that someone filled out disability papers.‚ÄĚ

‚ÄúYou have fibromyalgia too?, I make my fibromyalgia patients exercise.‚ÄĚ

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!

‚ÄúThe Other Side Of The Stretcher‚ÄĚ (c) 2015

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

“Trolls“

‚ÄúPlagiarizers‚ÄĚ

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!


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:

‚ÄĘsubstantial impairment in short-term memory or concentration;
‚ÄĘsore throat;
‚ÄĘtender lymph nodes;
‚ÄĘmuscle pain;
‚ÄĘmulti-joint pain without swelling or redness;
‚ÄĘheadaches of a new type, pattern, or severity;
‚ÄĘunrefreshing sleep; and
‚ÄĘpost-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:

‚ÄĘpost-exertion malaise lasting more than 24 hours
‚ÄĘunrefreshing sleep
‚ÄĘsignificant impairment of short-term memory or concentration
‚ÄĘmuscle pain
‚ÄĘpain in the joints without swelling or redness
‚ÄĘheadaches of a new type, pattern, or severity
‚ÄĘtender lymph nodes in the neck or armpit
‚ÄĘa 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¬ī

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¬ī

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

ňąwiňźk.n…ôs

“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 ‚Äď not having believed them all these years ‚Äď 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.

 

‚ÄúThe Other Side Of The Stretcher‚ÄĚ (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 ūüė¶

 

 

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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‚ÄúThe Other Side Of The Stretcher‚ÄĚ (c) 2014

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

 

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