“Post Exertional Malaise,” A Sociopathic Orchestration!

“Post Exertional Malaise, a Sociopathic Orchestration”

I think the discussion of the term “Malaise” is overdue for those of us in the #ME world.

“Malaise” in the case of “CFS” was the product of a sociopathic orchestration.

Back track to 1994:

When I received a copy of the 1994 Fukuda definition of CFS  from Dr. Susan Levine when it first came out, “Post Exertional Malaise” was on the bottom of the list of symptoms.

To be honest, when I first saw that, I thought what the heck is that.
I thought that because “Malaise” as a “symptom”, was sort of something
describing, for example:

“I feel like im getting a cold”
“I feel funky today, I don’t know why”
“I feel like im coming down with something”

or basically

“The blahhhs”

“Malaise” always seemed to be attached to something psychological not medical.

Here are some definitions of Malaise from different dictionaries I found online:

Miriam Webster:

mal·aise noun \mə-ˈlāz, ma-, -ˈlez\

medical : a slight or general feeling of not being healthy or happy
: a problem or condition that harms or weakens a group, society, etc.

EasyBib

Full Definition of MALAISE

: an indefinite feeling of debility or lack of health often indicative of or accompanying the onset of an illness

: a vague sense of mental or moral ill-being

Examples of MALAISE

The symptoms include headache, malaise, and fatigue.
An infected person will feel a general malaise.
The country’s current economic problems are symptoms of a deeper malaise.

Dictionary Reference
http://dictionary.reference.com/browse/malaise

ma·laise [ma-leyz, -muh-; French ma-lez] Show IPA

noun
1. a condition of general bodily weakness or discomfort, often marking the onset of a disease.

2. a vague or unfocused feeling of mental uneasiness, lethargy, or discomfort.

Origin:
1760–70; < French, Old French; see mal-, ease

Dictionary.com Unabridged
Based on the Random House Dictionary, © Random House, Inc. 2014.
Cite This Source | Link To malaise

Collins

World English Dictionary

malaise (mæˈleɪz)

— n
1. a feeling of unease or depression
2. a mild sickness, not symptomatic of any disease or ailment
3. a complex of problems affecting a country, economy, etc: Bulgaria’s economic malaise

[C18: from Old French, from mal bad + aise ease ]

 

“Malaise”

I guess im trying to say “malaise” was not something that was used
to describe something “serious,” “devastating,” “disabling,”
and definately not something potentially “lethal.”

The dictionary definition examples show that to be true.

This really goes very deep.
If you think about how Stephen Straus manipulated the use of this word,
he was even more sociopathatic than we previously thought.

Why do I say this?

I say this because most every practitioners in this country received a copy of the 1994 Fukuda definition for CFS, as well as every hospital in the country at that time.
This was because the “Yuppie flu” or “Epstein Barr” was a big item in the news.

“Yuppie Flu” was in the newspaper or on the tv news almost every week.

“Yuppie Flu” was a big news story in New York because there were a lot of people considered “Yuppies” who worked in Manhatten such as high achieving career people, Wall Street people, etc…

Everyone wanted to know what the heck that “Yuppie Flu” was!
Was it a real illness?
Was it burnout?
Was it the high achiever thing?
Was it just whiney women?

Now,

A practitioner looks at the list of symptoms on the 1994 Fukuda definition,
http://www.cfids-me.org/cdcdefine.html
(that’s what the document looked like in 1994)

2. The concurrent occurrence of four or more of the following symptoms:

  • 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.

Post-exertional malaise is on the bottom of that list.

In someones mind, they look at the list, the most important symptom
would be on the top of the list, not the bottom of the list.

A practitioner that would take a look at that list,
“malaise” wouldn’t seem important to them, nothing serious,
the patient had the feeling like they were “coming down with something.”

Here we are as a group of patients, telling our doctors,
when we over-do, we get sicker,
But they don’t “understand” or “get it.”

Instead, doctors were told to tell the patients to exercise or do GET/Graded Exercise Therapy, because the patients were deconditioned from that flu they had that made them stay in bed a few weeks.

When the patients said they felt worse when they were exercising,
the doctors attributed that to an “endurance” thing, and they told the
patients to keep exercising even though the patients felt lousy,
that the lousy feeling will go away, as they build up that endurance like a jogger  or a marathon runner in training, that they will feel better!

Or whatever the wording was that the patients practitioner used to say why the patient should keep exercising.

Dr Cheney told patients of his, from the get-go.
“Do not exercise”, “No aerobic exercise.”

Dr. Cheney has been quoted saying:
“The idea that someone can exercise their way back to health with this illness, is foolish, it is even insane.” (Not sure if those are the exact words but its close)

It would probably be safe to say, that 99.9% of the practitioners
in this country, who didn’t know this illness,
did not tell their patients about the exercise issue or even warn them against it because the physician did not know this key piece of data about the illness.

The practitioners also told their patients to exercise because the CDC said so,
so if the CDC said the patient must exercise, the CDC must be right.

 

What does the exercise do, or end up doing?

We all know what it does,

It permanently disables patients, patients end up housebound/bedbound for years
or the rest of their life.

It also has been fatal, which reminds us of that sad case from England- Brynmor John
http://www.hfme.org/houseboundandbedbound.htm

“Research has also proven that how much physical and cognitive overexertion a person can tolerate without serious damage depends on the severity of their illness. For example, we know that moderately affected patients can die from exercise sessions. For example, there is the case of the UK MP Brynmor John who had M.E. and was advised to ˜exercise himself back to fitness and who as a result of complying with this advice collapsed and died coming out of the House of Commons gym. ”

Brynmor John dropped dead from GET!
No other way to say it, he dropped dead!

Oh, and I forgot to mention the most important thing. The name of the illness is not “CFS” its M.E. or Myalgic Encephalomyelitis!

 

Stephen Straus,

What did he do?

Stephen Straus took the most disabling hallmark symptom of the illness,
which I have no doubt that he knew,
because he had documents about M.E. there at the NIH,
turned the focus on “fatigue” or just “tired”,
which would throw any practitioner off that didn’t know better,
because many of the practitioners here did not have experience with
M.E.

NIH also teaches, people do fellowships there, etc..
They probably have a huge library.
Many of the cluster epidemics through the years,
since 1934, were in this country,
not just Incline Village and Lyndonville NY.
The first one being in Los Angeles in 1934.

Incline Village and Lyndonville NY were the 2 that got all of the news attention.

NIH and CDC had this information, we know this because the ME epidemics were
discussed by the illness definition teams in 1988 and 1994. NIH had this information in that huge library on their campus.

So, what happened to so many patients including many of us or all of us?

We were slammed because of the lack of knowledge,
because of what Stephen Straus did!

Stephen Straus orchestrated not only “CFS”, “Fatigue”,
changing M.E. or Myalgic Encephalomyelitis to CFS or Chronic Fatigue Syndrome,
but took the symptom that was the most disabling, devastating
symptom of all of of the symptoms,
put it on the bottom of the list,
GAVE IT THE WRONG NAME- a psychological name,
thus throwing off most every practitioner who saw that document,
so they wouldn’t pay attention to it, or think it was a key symptom on the list.

In his mind, his goal was to make the patients look like a bunch of crazy complainers with maladaptive thoughts.

What he actually did was sociopathic!

He ignored the promise that he made of

“DO NO HARM”

and not only harmed, but caused a devastation of lives,
suffering that no one ever should have to go through.

Deceived and basically did a scam job on everyone at the NIH, CDC, and practitioner in this country and around the world.

If not, then he was NIH’s patsy.

But,

He did it intentionally with no conscience!

Someone who acts in such a manner with no emotion,
feeling, conscience, is called a Sociopath!

Dictionary.com defines it as:

noun Psychiatry.

“a person with a psychopathic personality whose behavior is antisocial, often criminal, and who lacks a sense of moral responsibility or social conscience.”

I don’t think the patients have ever been the crazy ones,
or have had maladaptive thoughts….

The orchestrator of this 30 year mess,
was most definitely mistaken portraying the patients
as people having maladaptive thoughts.

I think we all know who the person with the maladaptive thinking was,
And it was not any of the patients!

The orchestrator was the one with the maladaptive thinking!

 

Read Stephen Straus own Words *Here* and *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!

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About The Other Side Of The Stretcher

Nurse turned patient, but not by choice. I was became a Registered Nurse in 1985 when I was 21 years old. That career was cut short the end of 1994 when I was unable to work anymore because of the illness M.E. or Myalgic Encephalomyelitis. I have 3 adult children including twins, A daughter and 2 sons. View all posts by The Other Side Of The Stretcher

4 responses to ““Post Exertional Malaise,” A Sociopathic Orchestration!

  • TheOtherSideOfTheStretcher

    I posted this same post on MECFSForums and received some feedback there.
    One of the forum members posted
    “I expect fireworks”

    I will put my reply here that I posted there:

    Fireworks are the idea actually! LOL

    The patients should be aiming them at the NIH, CDC, and the IOM now!!!

    There should’ve been a debate about this particular symptom years ago.
    It was actually nagging at me, so I wrote this post last night after it finally nagged me to no end.

    I hope there is a big explosion, not even fireworks, because the way this was done, was intentionally done to deceive anyone reading that definition.

    And, we have proof of the words right out of the horses mouth too (Compliments of Craig Maulden/ The CFIDS Report) right here:

    I guess they figured they should wait a few years after he passed away to release that document. It would be easier to blame him for the whole thing and not take any bit of responsibility even though it was known what he did, because he pretty much says it in that letter to Fukuda.

    I also put the post in my blog too, its a little more polished there than the post here.
    I probably will edit it a few more times over there. I tend to have to do that with my cognitive issues.

    Here is the link: https://theothersideofthestretcher.wordpress.com/2014/06/08/a-sociopathic-orchestration/

    “Malaise” is the wrong word, that’s what I wanted to point out.
    Our symptom isn’t “Malaise”.

    “Malaise” is an insult to the patients to even suggest the symptom is “Malaise.”

    I don’t use these type of words usually but I will use the abbreviation,
    quite frankly “Malaise” is BS in plain English!!!!

    “Malaise” is actually a psychological word, it shouldn’t even be a “description” of the illness in any way, especially in the 1994 Fukuda Definition because that was originally a research definition.

    It doesn’t take a scientist or someone with a Genious Mensa Level Stanford Benet IQ, to realize, that “malaise” is the wrong word to be used in a definition for a disabling illness, especially in a research definition.

    Researchers are supposed to have some brains in the head up there!!!

    It doesnt take someone with the same Genious level IQ regarding the name either.

    We could grab a bum off of the street, show them the data, and ask them, “Should we change the name of this illness called M.E. with all of that inflammation in that patients brain and spinal cord, to “Chronic Fatigue Syndrome”???

    You know what that bum would say?

    Even the bum would say only someone stupid would do that or someone with the wrong intentions.

    That name is a sham, and the name of that symptom “Malaise” that was put in there go to along with the name, SS picked for this illness was a sham.

    Malaise- is something like what the dictionary describes for example-

    “Im not feeling too good today, I feel like something I ate didn’t agree with me”

    “I think im coming down with a cold”.

    Im quite sure most or all of us can say, our symptoms didn’t start that way.

    Think about it, where the heck does someone get a name like “Chronic Fatigue Syndrome” for something originally called “Myalgic Encephalomyelitis” which was proven by Dr Ramsay on autopsy (you cant get no better view than that) to be the accurate name.

    The thing is, all of this basic research was already done by Dr Ramsey, Dowsett and their group. It should be “Elementary my dear Watson” by now.

    But no, the current researchers have to do all of this work,
    (3 groups in the last year and a 1/2), Enlander and his group from Mt Sinai, VanNess/Snell and their group at the workwell foundation, Betsy Keller and her group in Ithaca NY, all had to finance their own studies I might add,

    to show patients do not recover normally from exercise,
    but abnormally,
    and there is a big decrease in functional capacity,
    because they know the patients are being done wrong, have been done wrong, and are going to be continued to be done wrong unless they straighten the mess out with those VO2 Max tests- that are 95% accurate- cant be faked!!

    Im just pointing out the 95% accuracy, a no faking in this case, because everyone reads these forums, including some of those people we know, who also attend the meetings, who will still try to make up some excuse for the symptom.

    No more excuses!!!!
    This is the only illness were they are getting those results!!

    Enlander didn’t dance around that issue when he titled his press release:

    “INCORRECT GOVERNMENT INFORMATION HURTS CHRONIC FATIGUE SYDROME PATIENTS, NEW RESEARCH FINDS”

    Dr Dowsett said over 20 years ago in a definition she co-authored that said “Trivial activity” causes a problem.

    What don’t these people understand about the word “Trivial?”
    They speak the same English for crying out loud.

    And,

    Dr Dowsett , Ramsay and that group had probably hundreds of years experience combined taking care of ME patients besides all of their research and papers to prove it.

    Ramsay followed the London Free Hospital just like Peterson has followed Incline Village all of these years!!!!

    What I want to point out is,
    Post Polio Syndrome patients have the same exact symptom!
    They do activity for a day, they are in bed a week!
    (that’s an example on one of the patients I heard on one of the videos I watched about it.)
    If you take a look at their website, http://www.post-polio.org/index.html
    they do NOT call the symptom, Post Exertional Malaise!!!!

    (I cringe when I even type that the same way I do saying or typing CFS)
    They call it:
    “They call it persistent new muscle weakness (at onset),
    muscular fatigueability, decreased endurance”

    Here is their website and their page about “WEAKNESS”
    http://www.post-polio.org/edu/handbk/weak.html

    The symptom is weakness, not fatigue.
    More specifically:
    “New muscle weakness is the hallmark of post-polio syndrome and can significantly impact activities of daily living.”

    Only 1-3% of Polio Patients suffered paralysis, there are many of these patients who didn’t suffer paralysis or even know their original “summer flu” was polio.

    I know there will be people who say- they were paralyzed , that’s why they are weak. Most of them were NOT paralyzed.

    They didn’t even know what they had was Post Polio Syndrome until the 1980’s. 20-40 years after the initial polio infections, they started experiencing the symptoms we do.
    I think that’s when they all got together with doctors who were still alive from the polio epidemics to identify what was going on and to establish there was a Post Polio Syndrome issue.

    “The overuse of muscles resulting in excessive muscle fatigue may contribute to this premature exhaustion of the motor units (Grimby et al., 1996; Sharma et al., 1994; Sivakumar et al., 1995).”

    The difference between them and us, they feel weakness in different areas, we feel it all over, although there are some that do feel it all over like we do, and a patient in this video describes immune system overdrive, chronic inflammation and cytokines, etc.. from the body trying to fight whats left of the polio virus or that it thinks the polio virus is still there and its in overdrive.

    (I think the particular patient who says that is at 1:50 point in the video, its pretty much in the beginning)

    The ones who didn’t suffer paralysis, their symptoms are almost identical to us and they do not call the post activity weakness-> “Post Exertional Malaise”,
    http://www.post-polio.org/edu/handbk/weak.html

    They call it: Muscular weakness, weakening of muscles with exercise,
    increased muscle fatiguability,

    This is their page about exercise:
    http://www.post-polio.org/edu/pphnews/pph19-2a.html#exe

    They have a bit of a debate about exercise too, this is what they say:

    “There is agreement that repetitive overuse can cause damage to joints and muscles, but can repeated overuse and excessive physical activity accelerate nerve degeneration or nerve death? This is the crux of the physical activity/exercise debate.”

    From what they say there, it looks like they aren’t sure of exactly what causes their post activity or post exercise issues- whether it is nerve degeneration, etc.
    Just like our researchers aren’t sure if ours is cardiac, metabolic/mitochondrial, fluid volume, etc…

    They also say this:
    ,
    “Polio survivors who over-exercise their muscles experience excessive fatigue that is best understood as depletion of the supply of muscle energy. But, some polio survivors’ weakness can be explained by the lack of exercise and physical activity that clearly leads to muscle fiber wasting and cardiovascular deconditioning.”

    If they do exercise, they need to be surpervised by health care professionals.

    Anyway,
    “Malaise” should be retired!!!!! IMHO!!!

    Many agree too as they don’t even call it PEM,
    many called it Post Exertional Collapse,

    and in the case of that poor guy Brynmor John-
    Post Exertional Drop Dead!

  • Malaise… lets discuss this! | The Other Side Of The Stretcher

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  • MsJustice

    Ramsay described it as muscle fatigue (not generalised) or weakness on repeated exertion, with prolonged recovery. Exercise intolerance is a feature of mitochondrial disease and is a more accepted term too, but as long as they don’t think intolerance means avoidance.

    We need objective tests, to test both repetitive muscle exertion, lactic acid on and days after exercise and the repeat exercise test (Snellet al), as well as specific mito tests.

  • The Other Side Of The Stretcher

    Hi MsJustice,

    Thankyou for stopping by and leaving a comment too!
    I do appreciate that.

    Hope you are doing ok today.

    Yes, Ramsay did describe it that way and so did Dowsett on the London Criteria:

    LONDON CRITERIA FOR M.E.

    Authors: Dowsett EG, Goudsmit E, Macintyre A, Shepherd CB.

    In: Report from The National Task Force on Chronic Fatigue Syndrome (CFS), Post Viral Fatigue Syndrome (PVFS), Myalgic Encephalomyelitis (ME). Westcare, 1994. pp. 96-98.

    All three criteria must be present for a diagnosis of ME/PVFS to be made:

    1. Exercise-induced fatigue precipitated by trivially small exertion (physical or mental) relative to the patient’s previous exercise tolerance.

    2. Impairment of short-term memory and loss of powers of concentration, usually coupled with other neurological and psychological disturbances such as emotional lability (= being upset by things that would not normally cause distress), nominal dysphasia (= difficulty finding the right word), disturbed sleep patterns, dysequilibrium (= imbalance or unsteadiness rather than vertigo/spinning round) or tinnitus (= noises in the ear).

    3. Fluctuation of symptoms, usually precipitated by either physical or mental exercise.

    Dowsett and Ramsay were from the same school of thought and they knew M.E. inside and out.

    I agree with you, we need the Stevens Protocol VO2 Max testing, its very important, because as we know its only this patient group that that show the abnormality or anomaly on the 2nd test day.

    This testing is measureable, there is no question, there is an abnormality that correlates with the patients symptoms. This testing also as we know has a very high accuracy rate- 95%, no faking or cheating there.

    Why I have been putting weakness, is, because the moderate to severe affected patients, suffer weakness, after any type of activity, many are too weak to do anything, they are on their couches or sofa’s 23 hours a day. Unfortuantely, the severe patients- they are weak all of the time and a number of them suffer paralysis and some permanently.

    “Fatigue” per se, people can still work and be fatigued. I worked a number of years being “Fatigued”.

    I expect, for someone to say to me something regarding “weakness” and “paralysis” soon, the reason why I say that is because those 2 words are used interchangeably the same way as malaise, fatigue, and weakness are.

    I will tell you why I say that, I have seen articles on the internet where a health practitioner was describing a patients symptom as “weakness” and the symptom was obviously paralysis. So if you notice, not only in the case of M.E., but other illnesses or diseases, there are health practitioners minimilizing or not identifying patient symptoms properly.

    This has been the problem with “CFS” and the Fukuda Definition, which we know isn’t “CFS”, and we know, the symptom was not “malaise”. When health practitioners do not correctly identify the symptoms with the proper words or terminology, patients are harmed just like many patients have been harmed and continue to be harmed in our patient community.

    Our symptoms were “minimalized” and patients were harmed, disabled, are not only homebound, they are bedbound. Some of the patients, the homebound and bedbound condition may not have been able to be avoided because there are patients who get hit hard with a Severe case right off of the bat, but there are many who don’t. Because of the improper criteria, where the patients could not be warned properly by their health practitioners because their health practitioners didn’t know, many patients ended up worse off.

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