The Hummingbirds' Foundation for M.E.

The Hummingbirds' Foundation for M.E. (HFME) is fighting for the recognition of M.E.,
and for patients to be accorded the same basic human rights as those with similar
disabling and potentially fatal neurological diseases such as M.S.

Quotes from M.E. political discussion groups

General M.E. Quotes

Quotes by M.E. sufferers

Quotes from M.E. political discussion groups

On so-called 'fatigue' in M.E...

On the supposed role of 'stress' in M.E...

Quotes on the outbreaks (and infectious nature) of M.E.

Quotes from M.E. sufferers on the negative effects of CBT and GET

M.E. vs MS quotes

Quotes on 'Are we just marking time?'

Quotes on the problems with the so-called "Fair name" campaign

Quotes on the problems with the use of 'ME/CFS' by M.E. advocates

Quotes on the topic of 'Who benefits from 'CFS' and 'ME/CFS'?'

 


 

Before reading these quotes, please be aware of the following facts:

1. Myalgic Encephalomyelitis and ‘Chronic Fatigue Syndrome’ are not synonymous terms. The overwhelming majority of research (and articles) on ‘CFS’ or ‘CFIDS’ or ‘ME/CFS’ or ‘CFS/ME’ or ‘ICD-CFS’ does not involve M.E. patients and is not relevant in any way to M.E. patients. If the M.E. community were to reject all ‘CFS’ labelled research/articles as ‘only relating to ‘CFS’ patients’ (including those which describe those abnormalities/characteristics unique to M.E. patients), however, this would seem to support the myth that ‘CFS’ is just a ‘watered down’ definition of M.E. and that M.E. and ‘CFS’ are virtually the same thing and share many characteristics.

A very small number of ‘CFS’ studies/articles refer in part to people with M.E. but it may not always be clear which parts refer to M.E. The A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy paper is recommended reading and includes a checklist to help readers assess the relevance of individual ‘CFS’ studies to M.E. (if any) and explains some of the problems with this heterogeneous and skewed research/advocacy.

Note that the inclusion of a quote on this site does not necessarily denote support for all parts of the article it was taken from, or support for the terminology used in this article, nor total support for all articles created by this author.

In future, it is essential that M.E. research again be conducted using only M.E. defined patients and using only the term M.E. and that M.E. activism also focuses entirely on M.E. The bogus, financially-motivated disease category of ‘CFS’ must be abandoned.

2. The research and articles referred to on this website varies considerably in quality. Some is of a high scientific standard and relates wholly to M.E. and uses the correct terminology. Other studies are included which may only have partial or minor possible relevance to M.E., use unscientific terms/concepts such as ‘CFS,’ ‘ME/CFS,’ ‘CFS/ME,’ ‘CFIDS’ or Myalgic ‘Encephalopathy’ and also include a significant amount of misinformation. For more information see A warning on ‘CFS’ and ‘ME/CFS’ research and advocacy and the more detailed paper Putting Research and Articles on Myalgic Encephalomyelitis into Context.

Quotes from M.E. political discussion groups

What should we think about advocates...who use the wrong names or terms, either wilfully or in ignorance, misinterpret others' reports and actions (on other illnesses, like CFS) or illness MODELS (like CFS/ME)...?

Who combine all manner of things and expect something orderly or profound or scientific to emerge?

Who cite the literature selectively, and draw unjustified conclusions?

We should be appalled.

'CFS/ME' doesn't exist except in the minds of the 'Wessely School'.

'CFS' (Fukada, et al) is NOT the same thing as ME!!!!! It is ill-defined and classified as a vague 'fatiguing' illness.

'ME' is a neurogenic (i.e., started in the brain with a sudden onset viral event) illness that is classified differently, under G93.3.

So long as people (researchers, advocates & patients alike) continue to add 'CFS' to 'ME', in front or in back, the confusion will continue!!!!

Separate them now. And keep them separated. Or there will be no forward moving progress and the massive confusion will continue....

And you'll have no one to blame but yourselves.

I cannot speak any more clearly.


LK Woodruff, ME advocate (in response to the article 'ME/CFS -Promises, Promises ?' by Margaret Williams)

 

The invention of the CFS term and its vague definitions have been a terrible insult and injustice to the human rights of patients suffering systemic
medical neglect of the most debilitating epidemic disease currently sweeping the planet.  Now that awareness of the history preceding the imposition of this damaging terminology has become well known around the world, the WHO classified and scientifically confirmed disease Myalgic Encephalomyelitis and its definitions remain the only legal and moral terminology acceptable.

The WHO ICD and the CDC must update the neurological classification of ME as confirmed by the Ramsay, Canadian Consensus and Hyde definitions, and they must remove Chronic Fatigue Syndrome from the same neurogenic category - CFS by its various definitions is not a neurological condition nor a synonym for ME.  CFS is a diagnosis of exclusion and therefore it does not describe any disease process, it is just a label for any undiagnosed condition presenting with chronic fatigue as a symptom.  All patients deserve a proper medical diagnosis, not a CFS label and misguided psychiatric interventions that do cause harm to those suffering from neurological ME.

The trivialising and insulting term CFS has resulted in the loss of 20 years funding for thorough research and treatments - this funding has been wasted on useless fatigue and behavioural studies and the distracting invention of the biopsychosocial model and functional somatic syndromes, despite the 50 years of increasing scientific and genetic evidence for the serious pathophysiology of Myalgic Encephalomyelitis.  The correlation of outbreaks of ME and Poliomyelitis that were documented from 1934 and which provide important clues to the aetiology of the disease have also been negligently overlooked.

The government needs to be reminded of its legal and constitutional obligation to urgently fund biomedical research and education of the medical community to uphold the rights of ME patients to be diagnosed and treated with as much dignity as any other severely disabling neurological condition is awarded.  Further, any "fatigued" patient who does not fit the ME diagnosis has the right to an accurate diagnosis and treatment of the underlying medical condition that is currently being mislabelled as CFS.

There is no formal education of the medical community and doctors are so misinformed, untrained and inexperienced that they cannot diagnose and treat these severely ill patients in the mistaken belief that they suffer from some unimportant fatiguing state they only know as CFS.  Some patients have
lost their lives to ME because they were unable to find a doctor who believed in them.  So many of us struggle to find a doctor who knows anything about this disease or how to treat it and we are left to manage this disease ourselves.  Where are our basic human rights here?

The information promoted by the CDC's CFS website, its PR marketing company the CFIDS Association of America (CAA), and their CFS Awareness Campaign is a huge disservice to all patients and researchers.  They incorrectly state that there are no diagnostic tests or treatments, there is no mention of ME as the distinct neurological disease recognised since 1956 and classified by the WHO since 1969, no justification for the invention of CFS to replace ME in 1988, or serious investigation of the missed diagnosis of other conditions hiding behind the obfuscation of CFS.

There is no mention of the internationally acclaimed Canadian Consensus Guidelines, the Ramsay and Hyde definitions, or the documented epidemics dating back to the 1934 Los Angeles outbreak - yes the first recorded outbreak of ME occurred in America!  The "evidence" is further skewed by the flawed CDC genetic research which selectively supports "allostatic stress" - while ignoring the neurological, immune, cardiac, mitochondrial dysfunction and evidence of persistent viral infection found by Dr Jonathon Kerr's genetic research published in the Journal of Clinical Pathology.

Changing the name to Myalgic Encephalopathy with a CFS based definition is another unjustified and damaging name change.  Current research presented as recently as the 8th International IACFS/ME Conference supports the historic name and definitions of Myalgic Encephalomyelitis with more evidence of CNS inflammation, vasculitis and myelin damage.  However "encephalopathy" can be taken to mean "altered brain state" which together with a CFS based definition will only compound the misconceptions and invite further irresponsible psychiatric interventions that have damaged patients and taken precious funding away from essential biomedical research.

And so it will get worse.  The CDC will find a way to inflate the numbers of fatigued people to fit their made-up definition of Chronic Fatigue Syndrome under the name Myalgic Encephalopathy and the CAA will get more funding for an even greater PR campaign.  The CDC will then justify the need for even
more government funding for research into this alleged "allostatic stress syndrome", which will only result in psychiatrists also benefiting financially to do even more irrelevant fatigue and behavioural studies, while ignoring the real suffering and growing death toll from Myalgic Encephalomyelitis.

John Anderson, ME advocate

 

Since no one else has commented, I thought I would bring to your attention the commentary published by JAMA about an M.E. drug trial of galantamine hydrobromide, a drug used in Alzheimer's.  I will say up front I knew  nothing of this trial, nor do I know anything about the drug, nor do I particularly care about either subject, and the (failed) trial is not what this post is about.

It's about the author of the commentary, His Satanic Majesty, the deeply disturbed Stephen Straus.  Hmmm...what might his precise diagnosis be?  I  will just speculate here, as he has made a career of speculating about the mental health of millions of others, the difference being that what he says is  actually considered scientific fact by a vast medical establishment, all based on one sad little paper, published in 1985, consisting of case descriptions of a tiny coterie of M.E. patients.  So:  is Straus suffering from paranoid schizophrenia?  Maybe he's just paranoid?  Borderline personality?  I think perhaps a combination of paranoia and borderline personality.  Anybody know much about borderline personalities?   They're profoundly passive-aggressive--they hate, they fear, they carry around tremendous rage, feeling perennially abused and misused, but they go to great pains to appear to be islands of calm and even authority.  And yet, they inevitably arouse enormous suffering, confusion, self-doubt, and distress in everyone around them.  Combine that with paranoia, and you get the kind of dangerous mix that is the great, world renowned FATIGUE  expert, the brilliantly diabolical Stephen Straus, who makes Simon Wessely look like a sputtering, comic amateur of amateurs.

We don't hear much about, or from, Straus anymore, do we?  That's because after effectively posing as an M.E. expert, and creating the international architecture of the "fatigue" model of M.E., a feat that took him less than a decade, he invented a new post for himself at NIH in which he purports to scientifically investigate quack theories and "alternative" medicine.  I'm sure all at NIH felt it was a brilliant decision, as Straus had so much experience--years and years--dealing with the extremely quackish non-disease, "chronic fatigue syndrome."  Now that he had effectively "disappeared" that problem-and what a tremendous feat of public relations that was, you had to hand it to him--you know, effectively disappearing a pandemic of millions.  At any rate, now that he had accomplished that nifty trick, he was free to take on the vitamin and shark cartilage purveyors, right?  And make a lot more money in the process, too! Jolly good move, Steve!

"Isn't it curious"--I once asked the much-admired Dr. Phil Lee, at the end of a speech during which he had sworn emphatically before hundreds of scientists, MDs, and patients that the NIH was committed to working hand in hand with patients to solve this disease--"that Dr. Stephen Straus of the NIH, in the nearly nine years I have covered M.E. medical conferences, domestically and internationally, has never once attended or presented at such a conference?" And yet, as the NIAID's Anthony Fauci's deputy had asserted to me, "The only person who is even interested in chronic fatigue syndrome at the NIH is Stephen Straus."  Dr. Lee began to offer a remarkably mealy mouth response, so full of doublespeak it was unintelligible, apparently even to him.  But before he was too deeply entwined, he was interrupted.  From the rear of the ballroom, came a bellow, akin to a lion's roar:  "ANSWER HER QUESTION!"  The lion turned out to be a Canadian, the inimitable Dr. Byron Hyde.   At which point the audience applauded heartily, amid hisses from some who included, for instance, Dr. Nancy Klimas, who believed it was wrong, just terribly, terribly wrong, to put the great Dr. Lee on the spot.  When the applause died down, Dr. Lee begged off the question in a huffy manner and said he would let Dr. Straus speak for himself.

Of course, that was precisely the difficulty I was getting at.  Dr. Straus was not there.  He was never there.  If there were but one person in the room with "FATIGUE," Straus could be counted on to be physically absent, much less to speak for himself.  That's because, as I had been told on occasion by NIH and Congressional staffers, the fragile (paranoid) Steve was just too "afraid" for himself and even his family to go to any conferences where "FATIGUE" sufferers were present.  By then, the only thing I found surprising was the news that Straus had a family.

But back to Steve's sudden re-emergence as world expert on his marvelous construct, "Fatigue."  The editors of JAMA note in a line that comes before Straus' editorial, "Editorials represent the opinions of the authors and The Journal and not those of the American Medical Association."  So, while JAMA editors continue to hang on Straus' every word, they attach a warning label suggesting that their readership may not, though I find this is unlikely, as their readers are doctors who have been told most of their careers by Straus and his acolytes that M.E. is FATIGUE and arises from the Id.  (It's these lazy BMW owners--they just have to get out of bed and back into their cars--to paraphrase oneof the convivial hospital grand rounds I heard Straus give years ago while he was conducting the campaign.)  And that's the problem: it's been some years since Straus moved from running the NIH's FATIGUE public relations machine to his CAM gig, but he is nevertheless still considered the national expert on the mental illness FATIGUE.  Thus, he is either asked, or he volunteers, to write an editorial about a trial that occurred, in Straus' own words, "in 37 centers from 5 nations (and was) the largest trial ever of CFS treatment."

Though I would love to, just for the comedy aspect alone, I cannot take this editorial sentence by sentence.  You can read it, and marvel at the extraordinary degree of maladaptive thinking it contains, in full, on last week's Co-Cure list.  We can all pray for Steve to get help soon, and frankly I think an extended course of CBT is in order, at minimum, certainly in conjunction with antidepressants, and even perhaps immersions in cold baths, plus whatever treatment is currently used for hysterical paralysis.  Steve is painfully, painfully stuck in his thinking.  He simply cannot move forward, away from his maladaptive thoughts; it's as if he wants to be sick, and interventions will need to be applied aggressively if progress is to be made.  Dare I mention the word: malingerer?  Steve, why don't you do some real work? You know--science? Institutionalization may be the only workable option at this time.  How I wish Susan Simon was here to offer her opinion.   In 1988, Susan Simon was one of Straus' M.E. patients and was suing him for medical malpractice.  Soon after she made her intentions known to him, she was killed by a truck on a Manhattan street corner while riding on her mobilized cart.   If only Susan were here to tell you a bit about Steve, the healer.  But I am digressing...sorry, there are so many stories so many people could tell.

Steve's argument seems to be that because the trial failed, it was a "resounding success."  Why?  It resolved at least one question about what FATIGUE is.it is not a disorder of defective cholinergic pathways, since the drug involved is a cholinesterase inhibitor.  Isn't that fabulous news?  As Straus writes in his classic style, "Fortunately for the science, but not for the patients,the results were unequivocal in that galantamine was well tolerated but yielded no meaningful benefit to any subset of patients."

Okay, fine. Personally, I couldn't care less, but that's just me.  However, Straus exults, the greatest success of the trial is that it has "reaffirmed the importance and feasibility of studying CFS," the importance and feasibilityof such efforts he has spent nearly an entire career working to render useless. And if there is any doubt about this out there, let me tell you that he concludes this sentence with the by-now classic flourish, "even if it remains a poorly understood and controversial illness."

So, Steve is happy to report to his bretheren in the year 2004 that apparently, it is possible to study FATIGUE.  Nevermind that it was he who suggested years ago it wasn't worth studying.

Now, why is M.E.  considered so widely to be "poorly understood" and "controversial"? Because Straus has engineered this very propaganda. Because he says so, again and again, ad nauseum.  Any study that advances understanding of the disease, like the comprehensive 1992 Annals study I mentioned a while back, Straus has either blithely ignored or publicly undercut, along with the CDC. It is he who turned a simple infectious disease into a "controversial" one bysuggesting it is not a bona fide disease at all, but a state of, yes, FATIGUE powered by maladaptive thoughts.

He takes time to note that "speculations as to (FATIGUE's) pathogenesis abound."  He lists some of them:  "that it arises from a chronic infection, a brain or mood disorder,"  (Hey, what is your definition of the difference between brain and mood, Steve, or do you suggest they are one and the same?--Oh, I forgot--God forbid that you should support anything you say with any degree of scientific accuracy--why should you bother?  You're the expert, right, so the medical profession need not worry about the facts. Forgive my impertinence.) He continues with his recitation of hpothetical pathogeneses:  "a sleep disturbance, an immune dysfunction, an autonomic or neuroendocrine imbalance, etc."  Iespecially enjoyed the "etc."  Again, why should he bother with specifics--you just have to trust him--JAMA editors and the rest of the medical profession know he is the expert, so why should they worry about details?  Thankfully, he has figured all this out; his readers will not be required to strain their brains; logic will not intrude.   They are in good hands, here.

He goes on to reassure the medical cosmos that "The data strongly reject the infectious hypothesis..."  A short digression here, where your author directs comments directly to subject:  Is that really correct, Steve?  Are you SURE? Because if I were you, I wouldn't stake my reputation on that fact, because there is  actually a great deal of data to the contrary, and, I might add, even if the "data" weren't there, to say it is not infectious is patently absurd prima facie.  It is not even viable as a hypothesis, Steve.  But if you have data, let's see it, by all means.  We're practically holding our breaths. We've been waiting for 19 years, pal.  By the way, when did you do those studies and why haven't you published them?

Steve, you are so disturbed, and I would have to say, even delusional, I sometimes actually find myself feeling sorry for you, because living or dead, there will come a time when your reputation will be mercilessly mocked.  You will go down in history as one of medicine's greatest bullshit artists, and your acolytes as some of medicines' greatest idiots.  Your followers will be viewed as a cult, really--not unlike the poor, deluded teenagers of the Sixties who shaved their heads, donned saffron robes, and begged for coins at airports. It was easier for them to do that than deal with the difficult and painfulrealities of their own histories--their own paranoid, angry, borderline personality parents--authority figures like you who robbed them of their ability to stay in touch with reality, that is, the facts.Rock on, Steve!

And your sources for this staggering work of genius?  Seventeen papers, authored by a dazzling international coterie of some of our favorite people: Straus, Hickie, Reeves, Chalder, Buchwald, White.  Wessely shows up four times.

Those who really think it's important to attend the next meeting in Bethesda might consider dropping in for a chat with Steve while you're there.  He'll run down the corridor in terror when he sees you approaching--trust me--but whydon't you try it anyway?  You know--just to let him know he's not been forgotten by his primary constituency.  Remind him he's not out of the woods yet, notby any stretch.  And what you can shout in the direction of his receding back: "The Whole World is Watching!"

Hillary Johnson (author of Osler's Web) on Resact




[...] as Hillary Koprowski, who studied viruses for 50 years, once said , "this condition reminds me of Beethoven's 5th Symphony...when a patient walks into my office..if i hear the first four notes....DA....DA.....DA.....DAAAAAH! i KNOW the rest of the song!" He sure didn't need six months to diagnose a patient.

but What the ignorant and arrogant fools at the CDC tried to jam down our throats was some kind of fatigue construct they called "CFS". in 1988 they made a RESEARCH case definition..nominally trying to isolate the causative agent..

they were either incompetent or dishonest or both...but the 1988 flawed definition became COMPLETELY bastardized in 1994..i sat in the semi private meetings..where the docs were considering trying to use 10 of 14 symptoms...8 of 12..and they would go back and forth for hours..and little stevie Ray STrauss..would go up and erase all their symptoms on the blackboard and write in "FATIGUE" only for six months or longer..and then they added "severe enough to impair work or school function".. they wanted to get away from quantifying the 50% reduction of the 1988 definition..and make it even more nebulous..

i think "CFS" has become a rorshach (sp?) test. people see what they want to see..

with crippling NMH...i don't see how THAT is pyschosomatic? and weird viral titres..and bizarre drug interactions..and light sensitivity and alcohol intolerance, uniformly poor stamina, and inability to do anything fun...etc. etc..i don't see how we fit into a "wastebasket" disease..but i also think we better realize that is where we are..and we need to figure a way to climb out of this trash can..imho.

TMH on Resact




i call it a Rodney King style beating every day of my life..

TMH on Resact (on how if feels to have ME)




Re:  syndrome vs. disease--
When I started working on Osler's, I read and was told repeatedly by scientists that the definition of a syndrome was a constellation of symptoms, cause unknown.  Definition of disease was, constellation of symptoms, cause known. Hence, polio is a disease.  Malaria is a disease.

But, I would ask, MS is not called a syndrome, nor is ALS, nor is Alzheimer's, nor is Parkinson's, nor is cancer, and we don't know the causes of these diseases.  And they would concede, "That's true--we refer to these diseases as diseases, even though we don't know their cause. So while the strict definition of syndrome is 'cause unknown,' we obviously do not strictly adhere to that definition in real life medicine."

Just another way the DHHS screwed patients, you know.  The C word, the Fword, and the S word.  Allowed the folks at DHHS to tell the lay press for last 20 years that M.E. isn't really a disease, just a big bloomin' mystery they were NEVER going to be able to figure out, so might as well not worry about it and go back to writing about AIDS. But, as Lapp says on his website, and apparently in person, names of diseases do not necessarily come into use simply because they are given a name by a government committee.  They come into use as a result of common usage.  Like Lou Gehrig's.   So start calling the disease what you want it to be called.

Seven thousand people shouldn't have to ask permission from anybody.  A number of doctors already have made that decision, as I believe Victoria Bell points out.  Render the promotors of the C, F, and S word impotent.  Make them look like the dinosaurs they are. 

Hillary Johnson on Resact




People don't care how much other people are suffering.  Or, almost no people care, including most of our families, our blood kin.    One more sad story in a newspaper is not going to make it.  One more movie with a high school kid on a stretcher is not going to make it.  "Serious" is not going to impress anyone.  What impresses people is: can I catch it?  And if the answer is yes, they start paying attention.  Do you know how frightened people are of simply catching a cold?   If M.E. were a cold, and 2 million people were walking around with it, or sacked out in bed or on their sofas, the rest of the sentient population would be burning the NIH campus to the ground about now (or something akin).  M.E. patients should quit hoping for yet more media stories about the suffering of individual patients,because that story has been out there for two decades and it hasn't changed a thing.  Anyone noticed that?  Start talking about the one thing that the government hopes you never, never start talking about; the thing that Steven Straus goes to great pains to lie and lie and lie about in every venue he can.  It is his JOB to lie about it.

Hillary Johnson on Resact



No one fears fatigue. As Hillary described, the C word, F word and S word combo just don't cut it in the legitimate disease world. Someone else said (and do not remember who) that "chronic fatigue" means you're tired all the time, and "chronic fatigue syndrome" means you're tired all the time and want to make a big deal about it.  Just realized it was  you who used the "It's the name stupid" as a tag line. Maybe time for a corollary: "It's the definition, stupid."

Jill McLaughlin on Resact




The evidence for transmissibility was documented in Osler's Web over a ten year period, and compressed into an overly long 726 pages, published in 1996.  I did not set out to write a book that described the world-wide spread of an infectious disease, because I was rather low on the learning curve in 1986, but that's where my reporting took me pretty quickly.  I think I made a post  here some days or weeks ago which guided readers to several names and topics in theindex that were specifically about transmissibility, however.  Several of my friends who knew absolutely nothing about this disease came away from that book with no uncertainty in their minds about the infectious nature of M.E.

Data to support transmissibility is all around you.  I mean, you're sitting in the middle of a pandemic, for God's sake.  But you could start with Komaroff's 1992 paper in the Annals in which he said there was enough evidence in the Tahoe epidemic to suggest a transmissible agent was the cause of the disease. Probably one of the best papers ever published on this disease.   ("The Tahoe Paper," as it was known for years prior to it's publication.)  Took six years to publish.  That's what a Harvard investigator was up against; the NEJM wouldn't touch it.  That's how powerful the resistance to the truth is. It's going to be a long haul; it's not going to happen overnight.  At the time, Komaroff speculated the agent might be a retrovirus, (HIV had been discovered only a decade before) but added the answers as to what kind of agent had not yet been nailed down.

I can't go back and repeat ten years of work--that was a once in a lifetime effort.   What might patient advocates do?  Start talking about these matters to the media, to politicians, attorneys, and anyone else who might be helpful. Maybe the name is not the most important thing--as Erik has been saying 'til he's blue in the face???  I think I agree with Erik--maybe it's not the name,stupid.  Maybe it's:  can you catch this, or not?  And all evidence suggests you can.

[...]  There is no one individual who is going to fly in with a velvet cape on their back and save the day.  Only the patients can, but it's going to take guts.  When they start to demonstrate some guts, it's my guess that the researchers you so want to support you will line up one by one and start supporting you over time.  Some kind of critical mass must be achieved, until there are more people standing on one side than the other, and the lie starts to crumble and the perpetrators will skitter away to higher ground.

Hillary Johnson on Resact




[...] I mention this just to point out that it IS possible to sue the U.S.government, in case anyone was in doubt.  (And to point out that regarding M.E., there are now several thousand papers in the scientific literature describing physical abnormalities, most recently, cardiomyopathy.) A few rhetorical questions to mull over:  How many times has Stephen Straus stated categorically to the media and international biomedical community (most recently this month!), without any supporting data whatsoever, that M.E. is not contagious, and why has the CDC since 1988 issued successively more aggressive research definitions that described an infectious brain disease as a "fatigue state," non-infectious, and of possible/probable psychological  origin?  How many times has the CDC issued statements denying and/or flagrantly trashing the published, peer reviewed research of other scientists from all over the world that proves otherwise?  Why has the premiere epidemiological agency in the nation (CDC) conducted virtually no epidemiology on this disease?  Why has the NIH killed every proposal from highly qualified epidemiologists in academia to conduct epidemiology on this disease?  Why does neither agency have a mircrobiological research program related to this disease underway?  Why has there been no patient registry, and no reporting system for U.S. doctors, as there is with other infectious diseases such as TB and AIDS? 

Why has the DHHS made no efforts to protect the blood supply?

How many people are sick in the U.S. alone?  How many have died?  How many more are going to get sick?  What has the government's policies on this disease cost you and your family?

Hillary Johnson on Resact



I wouldn't even bother with, "we are sick and not "fatigued."  I feel it's almost belittling to continue to debate this; the less we see the F word, the better.

1) The government response has been both incompetent and criminal.

2)  There has been no formal microbial research program inside DHHS, in spite of numerous instances of evidence for casual, sexual and blood transmissibility.

3)  DHHS has performed no adequate epidemiology, made no efforts to protect the nation's blood supply, instituted no reporting system for doctors as exists for TB, AIDS, and other infectious diseases, and created no patient registry, despite repeated requests by Congress and patients.  Deaths have not been assessed or even counted.  In addition to omissions listed above, DHHS has conducted no research on natural history of disease.  Finally, in spite of Congressional entreaties to do so, DHHS has steadfastly refused to fund competent academic scientists who have proposed to conduct many of these studies.

Regarding transmissibility "on the record," see AACFS statement in response to Osler's Web; check out Dan Peterson, MD comments.  The statement, circa May 1996, is still on their website I believe.  My opinion:  more experts will come forward if patients indicate they are unafraid to demand that this most critical issue be explored to the fullest.  In my view, this is, rationally, the priority research issue.

Hillary Johnson on Resact




Dr. Loveless made the infamous " my CFS patients are Sicker and more disabled every single day than my AIDS patients in the final two weeks of life".he later modified it to two months of life for his Congressional testimony two years later.

the "donating blood letters" were from our original May 12th concept. we were too sick to be wheeled down the capitol steps on stretchers..and ACT-UP activists from AIDS were getting LOTS of press attention by blocking bridges at rush hour, and chaining themselves to the desk of CBS news. we were looking for a HOOK to get some media attention.

somebody came up with the idea of donating blood. i called the CDC and was told something to the effect of "there is no known danger of donating blood by CFS patients, but it is recommended that only people in good general health should donate blood." (i don't remember the exact quotes...but that was the general gist.)we had some discussions and somebody said "let's call the media to come and watch us offer to donate blood on May 12th". [...]

i didn't want us to actually donate blood..but i did want a group of sick folks with "CFS"  offering to donate blood and then being DENIED on camera by some Red Cross officials...hoping that this would start some debate with reporters and the public..and force the CDC to do something about it..(at the time the media was promoting CFS as some sort of pyschological disorder)

TMH on Resact




I reject "different assault, same result."  That's what the feds want people to believe so they can deny there was an epidemic.  If you believe there was an epidemic/pandemic,"different assault, same result," is difficult to reconcile, IMHO.

Hillary Johnson on Resact




But this is probably the most common disabling chronic disease in the world right now.  It's not at all rare.  Millions are ill all over the world.  It may be the number one disease in Japan right now, for instance.  And let's compare:  MS has from 250,000-350,000 victims in U.S., and thus satisfies the FDA's "orphan disease" status rule because of the small number of patients.  The 800,000 figure that the CDC uses for M.E. is just garbage, in my view. I'm afraid I can't believe it for a minute, having actually met these idiots and interviewed them on multiple occasions over time and discussed their methods with them in great detail.  They can't possibly count cases accurately because they don't know what a case is.  Plus, this outbreak is now so politically charged their impulse/imperative is going to always be to downplay the numbers.

Jason's Chicago random digit dialing study indicated higher numbers than CDC, Ibelieve, and certainly Komaroff's epidemiology indicated something closer to 2,000,000 in U.S. alone.  Plus--and I can't remember now the numbers from which I derived this statistic precisely, but in 1995 I called the CDC and asked them for data from the polio epidemics in the 1950s, year by year, and discovered that the attack rate of M.E. was about fifteen times higher in the late 1980s-early than the attack rate of polio in the early 1950s.  We don't get paralyzed in the formal sense; we just drop out and disappear.

An infectious pathogen can and will infect a multitude of people--but only a few get symptoms, and only a few of them actually become seriously ill. This is how infectious diseases work.  If all were immunologically vulnerable to every infectious pathogen, the human race would never have survived.  No species would.  So given this information, you would have to say, this is a huge disease and remarkably common.  And I believe that to try to figure out with M.E.why some fall ill and some don't is an absolute waste of time when we don't even know the pathogen.  Do that work with malaria or polio or mononucleosis. It's like using M.E. to examine the role of stress in disease.  Every disease involves stress, but why mess up the science of learning about M.E. particularly with that ancillary issue?  Let's find out what actually causes  M.E.  The psuedo-scientists who pursue that avenue do so only because they don't really believe anything causes M.E. because they also believe it is not actually an organic disease.

If you want to think "toxins," instead of "pathogens," then ask how a particular toxin got everywhere in the world pretty much at the same time and created this same "Da Da Da-Dum" disease in millions and millions of people around the world? I remember Gidget Faubion well and I am not the least surprised that her list of symptoms from say, early 8os, matched the symptoms of late 80s.  It would, because it was the same disease going back to the 1970s, just starting its exponential spread.

Hillary Johnson on Resact

 


We have what we need now. There are valid criteria that can be used to diagnose without basing it all on fatigue. Doctors cannot be expected to diagnose on fatigue and ruling out other legitimate illnesses. This is where we lose out with the medical community and the root of the skepticism and disbelief.

There is a significant body of evidence to support a coherent pathophysiology. The leading model of pathogenesis is rooted in scientifically identified abnormalities in the brain and the immune system, both of which affect and alter the function of the other.

This was the overwhelming message that came across at the conference which Dr. Komaroff publicly supported. It is time to use what we know. We have real answers.

Of course we need more research but we do not need to wait for "more science" or the Holy Grail of a marker or the cause - even to "prove" that it is "real." NO other illness has been held to this unattainable standard and if we keep buying into this line of thinking we only hold ourselves back. There is substantial objective, well-documented evidence of CNS, immune, endocrine, cardiovascular, and autonomic nervous system abnormalities, which indicate that it is biologically, not psychologically determined. We need to keep pushing for recognition and utilization of what we have and can use now, not always waiting for more.

Jill McLaughlin on Resact

 

Reeves should have been sent to jail in the mid-1990s.  The CDC shouldn't even be involved in ME; after the profoundly botched (nefarious?) Tahoe "investigation" of 1986-87, the Secretary of Health should have banned the agency from further activity in the field and fired the scientists involved.  (In a rational world.)  I'm tired of saying this.  I really am.  PWMEs who think it's reasonable, at this late date, to try to neotiate for help with this agency or any other agency or person employed in the DHHS are complicit in their own demise and threaten every other PWME, as well, by propping up the status quo. 


Hillary Johnson on Resact

 


Peterson and his collaborators used a morbidity scale first described in the Journal of the American Medical Association (JAMA) in 1989 called the Medical Outcome Study to measure the physical suffering of his clinic patients. A score of 100 was "best health" on the study's scale. Peterson compared his patients' scores to those of healthy people and to those of people suffering from either myocardial infarction (heart attack) or rheumatoid arthritis. Healthy people averaged a score of 75 using this scale. Victims of RA scored in the high-forties range. Patients with myocardial infarction scored slightly lower. Patients in Peterson's clinic scored, on average, 16.

As far as Peterson and his collaborators knew, such low scores had never been measured on this scale. He presented his findings at a medical conference later that year. Peterson reported that "CFS" caused greater "functional severity" than heart disease, virtually all forms of cancer, and all other chronic illnesses. Interestingly, Peterson needed to hire a graphic artist to redesign the morbidity graph for the slide he presented at the conference, since no other category of patients had ever scored so low.

"We really haven't seen anything like it with respect to other medical illness," Peterson said. (Again, for more information about this research, see Osler's Web, pp. 364-365.)

Hillary Johnson

 

You don't take a severely ill teenager and throw him into a swimming pool or force him to ride on a fairground ghost train to see if you can "shake him out of his errant illness beliefs". That is torture.

You don't threaten bedridden patients with stopping their benefits if they don't attend a "medical" review. That is torture.

You don't threaten to withold a medical certificate from a physically ill person for being unwilling to swallow psychotropic drugs. That is torture.

You don't force ill people to exercise beyond their physical capabilities. That is torture.

You don't insist that ill people be subjected to brainwashing techniques (CBT) to rid them of their "belief" that they are ill. That is torture.

You don't withold benefits from severely ill people because they refuse to be subjected to "intensive physiotherapy for rehabilitation". That is torture.

Is there *anyone* out there who is willing and able to prepare a legal case against a government, and its agencies, that not only allows but encourages such torture of weak and defenceless people

John Sayer

 

Dr. Hyde concludes that "ME represents a diffuse brain injury ....the diffuse nature of the brain injury is the key to understanding ME." On thorough work-ups (*that patients are no longer able to receive due to the fatigue obsession - and will not be accomplished by fatigue constructs in a practical manner. The metabolic/physiological approach was not what Reeves was describing.) he has demonstrated on hundreds of patients with SPECT, PET and QEEG that the patients' clinical status correlated with location and extent of brain areas affected -- and would be consistent with initial and consequent organ and system injury). This is characteristic of ME, not the broadly defined CFS (*CFS is heterogeneous). He also noted the vascular problems in ME.

Jill McLaughlin on Resact

 

Science alone isn't going to stop the psychologisers: the science has been there for a long, long time and is there for all to see. This is no longer (if it ever was) a medical problem - it is a *political* fight.

The psychologisers are only getting away with it because they have backing in the highest places. That's why it's taking so long to make progress and why the higher we go with our grievances, the louder the silence.

John Sayer on ME Activists United

 

A cynic looks at Evidence Based Medicine

How to conduct evidence based medicine (for fun or profit) in ten easy steps
  1. Create an hypothesis which will ensure that an intervention from your speciality will prove effective.
  2. Create an experimental regime which will ensure that your desired outcome will be achieved (rather than tested).
  3. Run a trial of the hypothesis and publish a report.
  4. Publish a report in another journal, using the same data, but examining a different aspect.
  5. Have a colleague cite your trial in an article in a third journal.
  6. Have another colleague cite your trial in an article investigating the second aspect you wrote about in #4.
  7. Encourage someone who needs to increase their publishing rate to write an article commenting on your work.
  8. Write another article about what has been learnt from the "five" trials.
  9. Encourage a student to publish a review of the trial in yet another journal.
10. Write a report outlining the evidence for your proposal "Look, seven journal citations with six separate authors. This makes evidence."

I am not thinking of anyone in particular, of course.

ME sufferer

 

As many people have pointed out, the root of the problem for sufferers of M.E. and other so-called "unexplained illnesses" is the conspiracy (and that word is used literally) to *save money* for insurance companies, pensions agencies, the DWP etc. etc.  There is no genuine debate about whether M.E., Fibromyalgia, Gulf War Syndrome etc. are neurological or "mental".

The "psychologising" of these illnesses is a massive fraud perpetrated by the very same people who are paid to perpetuate the cover-up. It has nothing to do with authentic medical opinion.

The National Health Service in this country is being secretly dismantled, in my opinion, since more and more of the "service provision" is being delivered by private companies who are so far removed from genuine health care that it has become farcical.

It's all a con. The "functionality" tests are *not* designed to take into account the disabilities of sufferers. They are designed solely to construct a case *against* claimants receiving the benefits they have insured themselves for.

The wall we are up against is that the corruption goes right to the top. Even the government is looking for ways to cut the nation's health care bills. I would advise everyone in the M.E. community to vote in the forthcoming General Election (and every other election, for that matter) *solely* on the basis of what is going to be done to help those affected by the organised persecution of the sick - and no other issue.

If nothing else, the message will filter through that there is a major problem here.

Politicians do have to take into account the concerns of their (potential) constituents. Harrass your MP continuously. Write to the local media continuously.

I also recommend checking out "The Committee for Justice and Recognition of Myalgic Encephalomyelitis" at:

http://www.geocities.com/tcjrme/

What these people are doing to the weak, defenceless and vulnerable of our society is, to my mind, literally sick, evil and sadistic.

We all also need to become familiar with the Disablity Discrimination and Human Rights Acts - and use them.

John Sayer

 

Part of a newspaper clipping from 1904, reproduced in "Man Bites Man" (ed. Paul Sieveking, Penguin Books 1981)
"The epidemic of smallpox at Dewsbury is a reminder that the old-time cure for this scourge was a sound thrashing. There are people still living who in infancy were treated for measles by frequent whippings [...] and in the parish accounts of old towns there are many such entries as this from Huntingdon: 'To whipping two women yt had ye smallpox - 8d.'"

In this day and age, the very idea that illness could be 'thrashed' out of a patient strikes us as barbaric and abhorrent - yet this notion still pervades, although nowadays what amounts to physical assault in the name of 'treatment' is no longer committed by the use of whips.

Instead, pushing chronically ill patients through a regime of physical exercise, browbeating and brainwashing under the guise of 'behaviour therapy', often combined with the use of psychotropic drugs, and the added stress imposed by the recalcitrance of employers, insurance, pensions and welfare benefits organisations all serve to induce the same pain, injury and trauma as was previously achieved through flogging and beating.

Welcome to the modern world.

John Sayer

 

There is no such illness as "myalgic encephalopathy" listed by the World Health Organisation.

This has serious implications for diagnosis, entitlement to treatment, social benefits etc.

The question of whether "-itis" or "-opathy" is technically correct as a *description* of one part of the illness is totally irrelevant here: as far as the WHO classifications are concerned, "myalgic encephalomyelitis" exists (as a neurological disorder, with the ICD coding G93.3) and "myalgic encephalopathy" does not.

For example, take the illness "motor neurone disease". Any fool can tell you that there are no "motors" in the human body (technically correct), but if they then say that from now on we'll call it "complex physiological systems neurone disease" - where are you going to find references to this new, made-up name?

"M.E." stands for "myalgic encephalomyelitis" - and anyone who says it stands for anything else (in medical terms) is LYING!

Or perhaps people can say "M.E." means whatever they like:

"moaning exaggeration"

"miserable exhibitionism"

Would you be happy if your doctors called it one of those, instead of by the name classified by the WHO?

John Sayer

 

Dear All,

Can we shortcut all the needless waste of time and energy expended on arguing with - for lack of a better term - the "Wessely school" (and their lackeys) and their approach to ME, FM, MCS, GWS etc?

We must, of course, continue to challenge every bit of propaganda they issue, wherever it appears.

But bear in mind: these people cannot and do not believe *a word* of what they are saying. Their interest is *not* in helping sick people regain some quality of life, let alone get better or even be cured.

They have a completely different agenda, which consists of protecting economic and political issues on behalf of business and government. That's all.

John Sayer

Subscribe to the HFME newsletter!

To subscribe just click here

Live Support

Exciting book news!

Click here to purchase the first HFME book!


The book 'Caring For The M.E. Patient' by Jodi Bassett includes a Foreword by international M.E. expert Dr Byron Hyde.

He writes:

"There is so much false information that is picked up and disseminated it is near impossible to hold one’s head above the water and sift through this morass of misinformation. Any attempt to seek the truth is always a major difficulty. Somehow, Jodi Bassett and Hummingbird have managed to plow through this field of weeds."

"This is a book that deserves being read, not only by patients and physicians with an interest in M.E. but the bureaucrats in the USA Centers for Disease Control who have done so much damage to the understanding of M.E. I recommend her book to all and wish it every best success."

Paperback $18.95
Hardcover $22.95