Erik Johnson
@erikmoldwarrior
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Original prototype for Chronic Fatigue Syndrome The syndrome NO ONE ever looked into. Not a single CFS doctor asked how it started.
Incline Village Nevada
Joined January 2013
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@MarkMooch
Perhaps you've heard of the 1985 Lake Tahoe Raggedy Ann Syndrome? Yes there was a virus but the "clusters" were in moldy buildings. This added an extra dimension to the illness presentation and was a clue to how immune suppression from environmental exposures plays a role.
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@tealeeaf
Actually, that points to a defect in the Krebs cycle, so it is a very specific and important clue.
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@maosbot
Imagine after 35 years, the evidence that started Chronic Fatigue Syndrome remains completely ignored.
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@LizHighleyman
@sciencecohen
One really can't completely ignore ME and CFS for all these years and claim to have been fascinated all along.
Doesn't work that way.
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@ABrokenBattery
My grandfather was a survivor of the 1918 Spanish Flu.
He told me that the 1985 "Tahoe flu" which you heard of as "the original CFS outbreak" reminded him of how the Spanish flu behaved, without the mortality.
This outbreak was never investigated, in spite of what you have heard
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@Silas33
Back in the 1980's these same "fixit with your mind" promotions were being sold to AIDS patients.
Which is absurd in retrospect, but it happened
The purveyors kept selling for so long as anyone was willing to buy. After HIV was discovered these sellers shifted over to EBV and CFS
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@ClareGerada
Now, imagine that you never recovered.
That is what ME and CFS is like.
And instead of belief, you were treated like a mental case.
You know who to thank for that Belief System.
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@D_Bone
Did you know that pressure behind the eyeballs (like they are going to pop out) was one of the big symptoms in the Lake Tahoe Mystery Disease?
Which you know today as "Chronic Fatigue Syndrome"
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@Themedian1
@JanetDafoe
@MEActNet
The evidence that Per Fink has overstepped his bounds and is creating harm to patients and their families is sufficiently strong to warrant steps to prevent further miscreant damaging behavior
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@JJcolemanMD
How could a surgeon possibly resist singing..
"Like a surgeon... cuts for the very first time"
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@scottidoesntkno
Yes. The onset is so obviously a viral like trigger that it seems almost inconceivable that something else might actually be the more dominant driving force.
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@ShaneyWright
I'm not sure they will. My grandfather described a post 1918 Spanish Flu syndrome that left survivors disabled and how they fought for recognition.
People seem to have completely forgotten.
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@Paula_JKnight
This is from "the secret files" showing British psychs knew all along that CFS was not about fatigue.
The crux of the matter was immune dysfunction and B cell monoclonal expansion.
Kind of like "AIDS minor"
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@NINDSdirector
@NIH
December? You couldn't possibly move any slower?
Perhaps put it off for a few more years.
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In terms of pure neglect, "Chronic Fatigue Syndrome" demonstrably takes the prize as the most outrageous and egregious example of medical malfeasance in history.
Nothing else even comes close to the concerted suppression of evidence.
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@BhupeshPrusty
Back in the 1970's doctors surmised that mitochondrial dysfunction was the final common pathway that linked many diseases
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@balajis
Sweden is going to show us how lack of extreme measures works.
One way or the other.
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Doctors just threw the CFS term at everyone.
Not one of them ever looked into it.
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Nothing new
Spanish Flu
No occasion for panic
As expected & predicted -
#LongCovid
getting silenced 🤐 & mistreated; trust us when we tell you
#pwme
#mecfs
& a “LongEBV” patient myself - the corruption behind “post” viral syndrome - even the nsne(s) is filthy; I stand by you 💯 to fight against the stigma
@LongCovidSOS
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@herenow23
@jenbrea
It's fascinating to hear from MD's who got the disease.
Their doctor colleagues treat them the worst of all, as if they are traitors to the profession for joining the enemy.
They have to go underground or face merciless mistreatment by other doctors.
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@sfmnemonic
@wilshica
@profmsharpe
We who tried to stop the trial before it began do not see PACE as any kind of legitimate effort to gather data or help patients. It was a power play to get a big study in place to cement British psychs stranglehold over the ME-CFS paradigm
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@TheChalis
Back in 1985 the CDC was completely unable to figure out that sick people in sick buildings meant to look into the buildings.
They created a new syndrome but no doctor ever figured it out. So we did it for them.
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@sibylle_berlin
While this is surely correct, it has been known all throughout CFS history.
The question for Dr Paul Cheney is "What is doing it?"
And still remains the same question today.
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@MrkStdngr
My grandfather was a survivor of the 1918 Spanish Flu.
He told me that this led to him having chemical sensitivities and the 1985 Incline Village Tahoe flu reminded him of the same thing, without the mortality. It was good information, for that is what happened to me.
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@Reuters
There was a time when AIDS activists were accused of harassment and tactics that were out of line for "ACT UP"
Society now views them as heroes for standing up to an abusive and negligent medical profession.
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Can this be for real?
Per Fink dares to show his face on US soil?
This calls for a mass protest.
Per Fink, Danish psychiatrist, who believed Karina Hansen’s severe case of ME/CFS was psychosomatic, will speak at Columbia Med conference where US physicians can obtain Continuing Med Ed credit. See Karina in
#Unrest
and
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@AllisonRBond
@medicalaxioms
In the Army when they issue your personal "Nerve Agent Atropine Auto-Injectors" for Nerve Agent exposure,
you are told
"This might save your life, but you will never be the same"
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@321centralpark
@tealeeaf
Interestingly, Dr Robert Cathcart made that observation in Incline Village, FIVE YEARS before the famous outbreak which led to the creation of the Chronic Fatigue Syndrome.
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The separation of "ME" , "CFS" and "ME/CFS" is notable.
1. I am going to start a test on a novel diagnostic platform for ME, CFS and ME/CFS and long Covid over the next 2 months time. If it works as expected, we can have a robust quantitative diagnostic test in as less as 50-100 eur per sample and within 24h time.
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@jenbrea
Tahoe patients went to Dr Peterson and pointed at the base of their skull.
His spinal taps found elevated opening pressure
It didn't take rocket science to figure out this was inflammation of the CNS causing swelling. The stories of sudden onset Chiari malformation backed it up
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@robwriting
The very term "Chronic Fatigue Syndrome" was chosen by the Holmes committee to gaslight the patients and "evaporate" the disease as a discrete and credible illness entity.
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@richardvallee
When doctors manufacture artificial disbelief as a way to get rid of you, there is little choice.
Either you accept their abuse or you call them out on it.
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The original CFS cluster, the Truckee teachers, similarly won their claim. They sued the school to get disability and won. Very few people know that the original CFS cluster prevailed in court.
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@CovidSolidarit1
If you examine the history, it really doesn't matter what words you use.
The frontline of denial is to claim you aren't saying it right, and therefore, can be ignored.
When you select other words, they use the same semantic ploy.
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@jo_willowtails
@jenbrea
@netflix
It's very sad that in every way, society sends the message that they have no intention of taking these illnesses seriously until it lands on their own doorstep.
They will scream in agony and desperation "Why is so little known about this?" & never look in the mirror to find out.
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@CortDoesScience
The CDC did something fascinating with CFS.
They expressed CFS as real, devastating and severe, yet strangely failed to ACT in ways that a science based institute would have.
Their behavior of inaction outweighed their words.
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@jenbrea
The Tahoe outbreak happened at the same time acyclovir was released.
I remember people said herpes was just as much a matter of the mind as of the virus.. right up until they could take Zovirex.
All that mindbody crap for herpes vanished almost overnight.
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@danaparish
@NIH
Do they really imply a lack of persistence by "post viral"?
Because they said that CFS is a postviral condition from EBV and it is well known that EBV never goes away.
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@ozfish
@postersandme
@TEDxBristol
It's true that Crawley deliberately skewed her study. But she has been to major ME/CFS symposiums and seen the immune evidence, yet goes on acting as if the disease can be beaten by exercise and mental interventions.
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Every doctor, researcher or ME/CFS advocate who says "They thought it was fatigue" obviously never looked into any CFS history. (Or they are part of the cover up)
The CDC's own documents show they knew exactly what it was.
@mx__worldwide
The 1985 Lake Tahoe Mystery Disease outbreak was so similar to the 1955 Royal Free Hospital outbreak that ME experts & the CDC agreed they were the same thing.
The CDC had a need to disguise the Tahoe outbreak because it was killing the ski resort industry so they called it CFS
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The important part is that the CDC/NIH and British psych's were aware of the real reasons Holmes 1988 Chronic Fatigue Syndrome was coined.
For IMMUNE EVIDENCE and nothing else!
Both pretended they didn't in order to dumb down "CFS" to being stress and fatigue.
@Paula_JKnight
This is from "the secret files" showing British psychs knew all along that CFS was not about fatigue.
The crux of the matter was immune dysfunction and B cell monoclonal expansion.
Kind of like "AIDS minor"
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Exactly what was found in Chronic Fatigue syndrome 35 years ago. Aberrant T cell ratios and elevated cortisol.
(They simply ignored it)
Excellent article on Long Covid by
@Medscape
It'll be interesting to see how the biopsychosocial lobby explain their way out of this.
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@TompsJ
@JanetDafoe
@ClareGerada
True enough that PACE is a total waste
But the real question is how psychiatrists ever "took control of CFS" at all.
Psychiatric disease "must be excluded" for a CFS diagnosis.
The CDC/NIH should have stopped Oxford CFS before the print was dry.
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@CovidSolidarit1
Exactly how they got rid of Chronic Fatigue Syndrome.
Ignore and delay until "that doesn't matter anymore"
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@thisistheillme
Fauci took a personal hand in helping Stephen Straus destroy Chronic Fatigue Syndrome.
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After 36 years, FINALLY someone actually "thinks" to look upstream of the mono?
Which is what we did in the original CFS cohort back in 1985 and saw an immediate pattern.
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@marilyn_ge
@John_CFS
@AnneSpaceCoast
@soltysik_rob
@TurnItUp4ME
@rebshloima
@GabbyKlein1
@oslersweb
@CDCgov
Yes. I would really like to have a sociological study done that revisits how the medical profession has behaved. Doctors have done bogus studies on patients mental problems long enough. It's about time THEIR behavior was analyzed.
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@nancyblakefoa
Prof. Mowbray said that rest gives the best chances for recovery but that people were by no means cured.
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@HenrikVogt
Your ignorance is beyond reprehensible.
If "ignorance" is what it really is.
More likely your sheer malevolence is showing.
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@JanetDafoe
@KCSteckel
@Derya_
@NIH
@NIHDirector
Hillary Johnson is right to ask that the NIH issue an apology.
Not only would this be a sign that the NIH has changed, but also send a message to the medical profession that they need to reconsider how they have been treating patients.
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@jenbrea
"Seek within yourself to find why you created your illness"
What? Like I should perform my own endoscopy?
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@ElahFeder
It causes one to ask, if researchers & doctors refuse evidence, abuse patients, will not correct their misbehavior, what recourse is there but to amplify criticism of them?
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@TurnItUp4ME
@MEflattened
@carpat21
@JKBurmeister
@rebshloima
@jifoulger
@marilyn_ge
@AnneSpaceCoast
@AliceOutThere
@herenow23
@JanetDafoe
@GabbyKlein1
@NIH
@NIHDirector
@CDCgov
@AnilvanderZee
@TomKindlon
@JohnGaborME
@JRE1138
@fourstriper
@richardvallee
@adambeyoncelowe
@Alenyikov
I don't understand why advocates don't simply show the 1986 ABC news 20/20 special on the "adult mono - Tahoe outbreak". One can see that although there were more women, the illness about to be named CFS had plenty of men too.
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@Rivkatweets
@CovidComunidad
@LauraMiers
@ahandvanish
@MVGutierrezMD
@MrkStdngr
@roxy_mojo
@a_straight_line
@D_Bone
@dianaberrent
@elisaperego78
@fitterhappierAJ
@VirusesImmunity
In 1986 Dr Paul Cheney pointed at this easel covered with all his diagrams and said to me.
"Something has hijacked the T cells, we don't know what."
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Being able to talk while running or climbing is an old running trick used to detect when you exceed aerobic thresholds and go metabolically anaerobic.
It is the trick I used back in 1986 during my pacing experiments to try and recover from the Lake Tahoe "Raggedy Ann Syndrome"
SUBTITLED 🎥
"Methylene Blue and
#TheRestTest
"
@chydorina
@tessfalor
@IsabelRamirezRD
@RemissBiomeVids
#MECFS
#LongCovid
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Dr Robert Naviaux, learning how toxic mold was actually the clue that started Holmes 1988 Chronic Fatigue Syndrome.
"Abnormal persistence of any phase of the CDR inhibits the healing cycle, creates dysfunctional cellular mosaics, causes the symptoms of chronic disease and accelerates the process of aging," said Naviaux
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@DrGrahamLJ
@KunstJonas
Not much of a surprise.
This has been repeatedly shown in Chronic Fatigue Syndrome ever since this syndrome got that name.
Ignored and forgotten every time, so people keep thinking this is new information
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@DovZeller
"Look into your past lives. Find out what you did it in one of your previous lives that was so bad and atone for it"
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@Dan_Wyke
@therealmecfs
When the CDC removed GET from their list of recommendations, it made no difference in the USA.
This was already embedded in the medical system.
It's like newspapers that slander someone on the front page, then offer a retraction in the fine print on the back page.
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@AnneSpaceCoast
@Chi_Curmudgeon
@GabbyKlein1
@TurnItUp4ME
@MEflattened
@carpat21
@JKBurmeister
@rebshloima
@jifoulger
@marilyn_ge
@AliceOutThere
@herenow23
@JanetDafoe
@NIH
@NIHDirector
@CDCgov
@AnilvanderZee
@TomKindlon
@JohnGaborME
@JRE1138
@fourstriper
@richardvallee
@adambeyoncelowe
@Alenyikov
My mother was working in the Mission District of San Francisco. She told me what she saw. She was horrified that doctors acted as if this were a "gay problem"
She said "Can't they see how it is spreading?"
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@kimisgubbed
@wolfsong12
@drclairetaylor
It might be a clue that Dr Robert Cathcart of Incline Village identified low mitochondrial function five years before the famous outbreak.
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@sibylle_berlin
@oslersweb
Yesterday I walked from Tahoe Forest hospital in Truckee to the school that started it all.
Everyone I asked told me they had never heard of Chronic Fatigue Syndrome.
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Is Fauci "the devil"?
Well, if you wanted sincere research into ME or CFS, I guess the answer is "yes".
One can't reasonably ignore ME and CFS all this time but claim to be fascinated. Doesn't quite work that way.
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@PutrinoLab
@NIH
The NIH has fought ALL evidence and clues that were ever generated from private research into Chronic Fatigue Syndrome.
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@Squashedhedgi
Doctors say people are deconditioned. But also that this is burnout from type A athletic "over achievers"
Wouldn't it be great if these doctors realized their enemy is the doctor with the opposing theory, and fought them instead of patients?
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@Nikki_Cutes
That is a very good question.
In this, the original Chronic Fatigue Syndrome outbreak, it was found that the illness unleashed a hidden but profound chemical sensitivity, bedding was contaminated with mold and chemicals.
The sleep problems disappeared while camping in the desert
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@PKhakpour
@britneyspears
A little boy stood crying outside the playground with the locked gate.
Britney said "Never let a locked gate stand in your way"
That little boy grew up to be Bill Gates
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"If doctors were not trained to watch for these symptoms in medical school, then they assume that this condition doesn’t exist."
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@wilshica
@profmsharpe
Of course he gets it. This was simply an effort to derail the richly deserved criticism warranted by all those years of "non research" by British psychs.
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@davidtuller1
Others who tried to tell this information got "disappeared"
It was either be pushy or be pushed out.
In fact, determining how aggressive one has to be in order to get researchers to respond is part of the social experiment.
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@Chi_Curmudgeon
@AnneSpaceCoast
@GabbyKlein1
@TurnItUp4ME
@MEflattened
@carpat21
@JKBurmeister
@rebshloima
@jifoulger
@marilyn_ge
@AliceOutThere
@herenow23
@JanetDafoe
@NIH
@NIHDirector
@CDCgov
@AnilvanderZee
@TomKindlon
@JohnGaborME
@JRE1138
@fourstriper
@richardvallee
@adambeyoncelowe
@Alenyikov
The history of Down Syndrome once being named "Mongolian Idiot Syndrome" by doctors is very revealing about their sensibilities. Especially since they didn't change it until the people of Mongolia asked them to.
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@lauras_pen
@agy_lena
When all your dreams disappear and everything you worked for is ruined, even mild forms of illness are completely life crushing.
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If you were around for the origin of Chronic Fatigue Syndrome you could see this coming.
The CDC/NIH went through the motions of investigation for about a year. Suddenly announced that they had found no clues (not true) and all tests were "Inconclusive"
Then dropped it entirely
✍️ The summary of this article is: "This is HARD, we give up. Let's not try to solve complex problems, but instead say "sorry, we have nothing to offer you, but our empathy."
❌ This is economics, not science, and while the taxpayers' money was not well-spent in the RECOVER
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@IpLongCovid
35 years plus and not a single doctor or researcher ever looked into the incident-evidence that Chronic Fatigue Syndrome was coined for.
Making CFS the most epic failure in the history of...
well, make that "In history"
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@Chi_Curmudgeon
@AnneSpaceCoast
@GabbyKlein1
@TurnItUp4ME
@MEflattened
@carpat21
@JKBurmeister
@rebshloima
@jifoulger
@marilyn_ge
@AliceOutThere
@herenow23
@JanetDafoe
@NIH
@NIHDirector
@CDCgov
@AnilvanderZee
@TomKindlon
@JohnGaborME
@JRE1138
@fourstriper
@richardvallee
@adambeyoncelowe
@Alenyikov
The initial name for AIDS of "GRID" is another aspersion which reveals the subliminal attitude of the medical mindset.
Perhaps we need to study doctors, to determine the source of this smouldering barely-hidden hostility toward patients.
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@danaparish
This debate over "push crash" has remain unchanged since Sandy Schmidt told the world about it.
(Before the PEM term was coined)
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What if the "postviral" portion isn't driven by a virus at all?
What if the virus triggered low level MCS, and people simply don't know what they are reacting to?
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@Latte_Bogan
@SadHackedJacs
Felicitations and greetings from Liberia.
Your unknown rich uncle has left you a fine cruise ship.
But to collect your free cruise ship, simply send a transfer fee of $10,000 USD to this address.
I trust you understand the need to keep this confidential.
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@jenbrea
Of course, we had believed that when doctors saw the positive response of "fatigue patients" to IV acyclovir, they would instantly drop their "All In Your Head" notions.
We didn't count on them hardening their resolve to ignore the evidence and blame the patients.
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Osler's Web and all CFS books, materials, newsletters, archives are gone from the Incline Village library.
CFS history completely wiped out.
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@Naomi_D_Harvey
Let history bear witness to the greatest act of medical misbehavior in history.
Not a single researcher ever looked into CFS.
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@AnneSpaceCoast
@Chi_Curmudgeon
@GabbyKlein1
@TurnItUp4ME
@MEflattened
@carpat21
@JKBurmeister
@rebshloima
@jifoulger
@marilyn_ge
@AliceOutThere
@herenow23
@JanetDafoe
@NIH
@NIHDirector
@CDCgov
@AnilvanderZee
@TomKindlon
@JohnGaborME
@JRE1138
@fourstriper
@richardvallee
@adambeyoncelowe
@Alenyikov
I remember! Doctors told people "If you're not queer you have nothing to fear"
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@AJansen118
@NIHDirector
@StanfordMed
This has been the pattern from the start of CFS
The CDC/NIH battle down the work of independent investigators until it can no longer be denied, then announce it with fanfare and try to claim credit as if they discovered it.
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@CovidSolidarit1
@theBrianaMills
People will never admit it but they secretly believe this improves the quality of the human race by weeding out weaklings. It does no good to show you were an athlete.
They just say "Well there must be something wrong with you because I didn't get ill. I take care of myself"
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