“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”
“Malaise” always seemed to be attached to something psychological not medical.
Here are some definitions of Malaise from different dictionaries I found online:
malÂ·aise noun \mÉ™-ËˆlÄz, ma-, -Ëˆlez\
medical : a slight or general feeling of not being healthy or happy
: a problem or condition that harms or weakens a group, society, etc.
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.
maÂ·laise [ma-leyz, -muh-; French ma-lez] Show IPA
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.
1760â€“70; < French, Old French; see mal-, ease
Based on the Random House Dictionary, Â© Random House, Inc. 2014.
Cite This Source | Link To malaise
World English Dictionary
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 ]
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?
A practitioner looks at the list of symptoms on the 1994 Fukuda definition,
(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;
tender lymph nodes;
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
“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!
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
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.
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:
“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!
“The Other Side Of The Stretcher” (c) 2014
This blog is not for medical advice.
For medical advice, you must speak with your physician!