I just received the following letter from Dr. Koroshetz:
Below is a letter from Dr. Walter Koroshetz
Dear members of the ME/CFS community,
I appreciate the concern of many in the ME/CFS community as expressed in Ms. Spotila’s blog post concerning the visit and lecture by a Professor of the History of Medicine at the NIH intramural research program. It is important to understand the NIH’s commitment to reduce the burden of illness for people suffering with any illness regardless of its cause or its manifestations. In fact the study of one condition not infrequently leads to clues to the treatment of another in totally unpredicted ways. The exchange of information and widely divergent scientific opinions followed by critical analysis is essential to moving any field forward. Investigators at NIH regularly invite individuals to conversations about their areas of interest. This inclusion in scientific conversation is not an endorsement. Rigorously collected data that enables causal inference is the foundation of science. This remains the foundation of the NIH, and as stated from the start the NIH intramural investigators will focus on post-infectious ME/CFS in order to closely examine the clinical and biological characteristics of the disorder and improve our understanding of its cause and progression.
I hope that the ME/CFS community can endorse this scientific enterprise as we at NIH try to direct it to the problems faced by those who suffer with ME/CFS, both here at intramural research program and at universities and medical centers across the country. We know so little about the biological causes and nature of the disease that inclusivity of scientific thought will be critical to our success. At this point sadly we don’t know where the scientific enterprise will lead us, how long it will take, or from what area of research effective treatments will come.
The Professor mentioned in your letter was initially incorrectly listed as part of the ME/CFS Special Interest Group, which was corrected. The speakers that have come to the ME/CFS investigators are listed on the website at (http://mecfs.ctss.nih.gov/sig.html) and include:
June 15th, 2016: Anthony Komaroff, M.D.: An Overview of Chronic Fatigue Syndrome (ME/CFS)
July 18th, 2016: Leonard Jason, Ph.D.: Diagnostic Challenges and Case Definitions for CFS and ME
August 24th, 2016: Daniel Peterson, M.D.: CFS/ME: Perspectives from a Local Epidemic 1984-2016
September 21st, 2016: Staci Stevens, M.A. and Mark Van Ness, Ph.D.: Cardiopulmonary Exercise Testing in ME/CFS
Sincerely yours,
Walter J. Koroshetz, M.D.
Director, National Institute of Neurological Disorders and Stroke
On behalf of the Trans-NIH ME/CFS Working Group
Well done, Jennie. And Maureen. The question remains…who invited Grumpy Ed in the first place? Looks like he was swiftly cancelled, but he must have been on the schedule to begin with for the invite to have gone out.
So little is known. 30 years and 5000 published papers, catch up!
Who goes to these meetings and hears the talks? Do those planning and doing research get involved? Or is it just a guest lecture?
Jeannie: I send your posts to Collins each time I get them.
Can you attach Collins email so I can do the same?
K’s still defending Shorter. and says Shorter’s not “part of the group” – NOT that he won’t be speaking.
I smell an enormous rotten rat.
and pardon my remarking again, but NO ONE considers Shorter an actual scientist, right? why is he part of the conversation? he’s an historian and a blatantly misogynist one, at that.
seriously.
He is missing your main point: this would be fine for, say, diabetes research in the present.
However, because ME/CFS has been marginalized for so long, and ignored, they need to bend over very far backward to bring us up to speed, and ANY concessions to supposed opposing viewpoints (which are really complete vitriol against the illness and its victims) do NOT belong in this phase of the attempts to redress the many and long-lasting wrongs perpetuated by the establishment.
You have to start somewhere (not just weasel your way into ‘Oops!’), and that means starting with apologies and amends. BIG amends. Which is exactly what the statisticians gutting the PACE trial and its ‘results’ are doing.
And what the NIH, CDC, etc. are trying to avoid: business as usual has HURT us immensely, and can’t be allowed to continue in this ridiculous appeal to ‘fairness’ and ‘scientific research.’
The time for that was twenty years ago.
Inviting Shorter to speak about ME/CFS is like inviting a homophobe to speak about AIDS, back in the day when there were people who believed it was a punishment visited upon certain people for their sins. He is THAT misogynist.
On a less emotional note, Shorter is quite open about CFS being psychosomatic (he has no trouble using that word). His history of the disease connects it to Greek views on women’s diseases (such as hysteria); his theories are that the form psychosomatic illness takes involves the social environment, so it has changed over the years.
Historians in general disagree with his thesis that women who were diagnosed with neurasthenia in the 19th century were psychosomatic. The general view is that these diagnoses were the result of masculinist beliefs in the medical profession.
Did anyone here read Charlotte Perkins Gilman’s “Yellow Wallpaper”? That is a short story about a well-read upper middle class woman who is locked in a tower room in her Victorian home because her MD husband believes she has neurasthenia and it is due to her meeting with intellectual friends and discussing ideas. We used to use it in women’s studies classes. That is a more standard historical view of neurasthenia.
But most of us who have the disease would not connect it historically to neurasthenia. The known history of the disease begins with the 1934 outbreak at Los Angeles County General Hospital, in the middle of an outbreak of polio. That is where it was given the name atypical polio. There were an average of one known outbreak per year until the 1950s – some may have been considered versions of polio, as was the case during an outbreak in Seward, Alaska, where the doctor revised his diagnosis after reading about M.E.
Around the time polio was considered “cured” through the vaccine, three cluster outbreaks in the UK in the mid-1950s were document. Dr. Melvin Ramsay decided to change the name from atypical polio. His journal editor chose “benign myalgic encephalomyelitis.” Everyone immediately realized “benign” was not quite accurate – it was chosen because it was believed no one died of the disease. But Ramsay said there was nothing benign about M.E. (But that’s why the entry in the ICD codes is “benign myalgic encephalomyelitis.)
The British commonwealth nations adopted M.E., but in the United States, the name atypical polio was changed to epidemic neuromyesthenia.
ME was continuously diagnosed from the 1950s to the present, but epidemic neuromyesthenia fell into disuse (in part because it was believed to be caused by an enterovirus, like polio, and CDC/NIH refused to acknowledge there were any more serious enteroviruses.)
When the cluster outbreaks occurred in the US in the mid-1980s, there was no known name for it in US medicine (and, typically parochial, the US did not reach out to other nations to see what name they used).
As we all know, it was then named Chronic Epstein-Barr Virus (though EBV was not present at all of the cluster outbreaks) and taken over by Stephen Straus of NIAID at NIH. By 1986, Straus had decided not to use CEBV any more because he had ceased to believe there was evidence for that diagnosis. In a funding request at NIH, he used the name “the chronic fatigue syndrome.” When the Holmes committee met in 1987, those who arrived were faced with the person in charge of NIH funding for the disease wanting the name “the chronic fatigue syndrome,” and they basically acquiesced.
However, there were 3 or 4 (I don’t know the actual number) researchers/clinicians at the conference who were specialists in ME, plus Alexis Shelekov, the chief specialist in epidemic neuromyesthenia in the US. Shelekov agreed with the others that this was really an outbreak of M.E. and that both the name and definition should be used.
That possibility did not even make it to a footnote in the Holmes article of 1988 that introduced “CFS” to the world.
Lots more to this – but the point is, there is a history of atypical polio, Icelandic or Akureyri Disease, ME, CFS, CFIDS … that is only related to neurasthenia in the sense that we are constantly having to battle that as an inappropriate diagnosis.
In 1969 ME was given a neurological code by WHO, as was epidemic neuromyesthenia.
Mary, have you ever sent your excellent summary of ME, CFS to NIH or Koroshetz? This is what they should know, just in case Osler’s Web or Ramsey’s little book taxes them too much. I’m just suggesting this to leave no stone unturned.
Does the NIH invite vaccine deniers as “inclusivity of scientific thought”? I didn’t think so.
So why invite Shorter?
The concept he espouses about listen ending to all scientists is great. However, Shorter is not a scientist and he clearly does not rely on data, so this is not an example of his concept. He should not be speaking at NIH about ME/CFS. PERIOD!
Are they going to get creationists now to hear all sides of evolution debate? Ha!
The British psychiatrists who believe CFS is caused by “false illness beliefs” connect it historically to neurasthenia. So will Shorter. This is a way of sneaking past the AHRQ revision that rejected the Oxford definition and CBT/GET, and bringing the British biopsychosocial school back to life at NIH. Believe me, there ARE supporters of that version of the disease (such as Anthony Fauci, head of NIAID).
Also – if you use the historical version that connects atypical polio to Icelandic Disease to Borneo Virus to M.E./epidemic neuromyesthenia to CFS/CFIDS – you don’t have to go back very far where the disease is considered to occur in cluster outbreaks. Something NIH/CDC may not be happy about.
OK, one last comment. If they were going to bring in a spokesperson for the “it’s all in your head” thesis, Shorter’s breathtaking misogyny makes him, in a sense, a better candidate than Wessely, White, Sharpe, or Chalder (all of whom have advised NIH, CDC, and the DoD in the past).
I don’t know what to make of his letter. My cynicism may be too finely honed at this point to look at it at face value. Behind the polite words I see the continuing undercurrent of neglect and dismissiveness the NIH has had for us for decades. They forget they we are one of the best informed patient groups because of the years of advocating on our own. They forget (or maybe they don’t know) the uniqueness of our situation and just how long we have been at this. If they want a history, man, do we have a story to tell. Methinks they may not want to really hear it.
He has not answered the question as to whether Shorter will be speaking to the larger Intramural Research Group, sponsored by the ME/CFS Special Interest Group, which is what had been posted on the Events page, only missing since some time after 2:30 pm EST Nov 2. He’s only said Shorter won’t be speaking to the ME/CFS Special Interest Group
And what nonsense to call Shorter a scientist. He has done no research whatsoever. Koroshetz seems to be defending such an action. I can’t see that inviting a rabid disease denialist is part of the scientific process. As a friend said, it’s like inviting a holocaust denialist as an expert witness to a conference on fighting genocide.
Thank you Jennie, for your diligence with this. It’s been interesting to read Dr. Shorter’s views. I wonder, since he is a Canadian instructor, was he one of the anonymous grant application reviewers who denied the biomedical research network application for the Canadian Institutes of Health Research?
I can’t even imagine that. He’s really of no importance (except in his own weird mind).
I am not listening to a None Science little brain man on ME! Don’t waste ME PRECIOUS ENERGY! On shorter. He doesn’t know ME.
Cindy, that is a very interesting question–thanks for bringing it up, as I intend to write a letter about that appalling “review.”
Hi Chris,
Thanks. I have a response from the CIHR Director General, re my inquiry about this ” ‘review’ “. I will post it here later today, if I am able.
Thank you so very much for your own inquiry into this non-evidence based, lame duck review that is being used as the rationale for continuing to abandon over 400,000 Canadians with ME.
Silly me, I should scroll down before leaving a reply (above).:-) Good for you and Chris for questioning the CIHR about the ‘review’. I no longer have the strength to do things like that – M.E. getting so much more Severe.
He wasn’t involved with the CIHR review. This is the list. http://www.cihr-irsc.gc.ca/e/49981.html
The fact that the ‘Scientific Officer’ is a research scientist at The Centre for Addiction and Mental Health – that’s reassuring (sarcasm!).
The people who are referenced in the review include Straus (U.S.), Wessely, Sharpe, White, Chalder (UK). No wonder we never stood a chance.
Hi Lindy,
Thanks very much for the list of reviewers. Odd practice the CIHR has of publishing the list after the fact. I thought the reviewers ALWAYS remained anonymous, but it’s of course much more transparent to at least reveal who is behind the curtain at some point.
Others can correct me if I’m wrong, but a quick look at the reviewers’ credentials, although impressive, don’t appear to include any published, or unpublished works on ME.
Some of the reviewers’ comments include from page one of the review: ” however, there is no evidence that CFS is a disease”… “Psychosocial factors are strongly associated with the development of CFS”… and from the last page of the review ” The committee’s main concern with this application was that the focus on biomarkers (vs. psychosocial and non-biomarker influences) might produce information with limited value in terms of its impact on outcomes and care.” These comments directly demonstrate the desperate lack of correct medical education about ME the Institute of Medicine described in their 2015 report.
And, a point here that other ME community members have expressed about those who predict there will never be a biomarker found. How do these naysayers know? So little government funds have been dedicated to ME, and the hunt for biomarkers. We haven’t had a decent chance to look for biomarkers. Something the opposition skips over: the fact that government funding for ME biomedical research has been choked off for decades: minuscule government funding for ME biomedical research = a Sisyphean struggle to privately fund and do this vital research. Choke off the government research funding, and then say “golly gee, there’s no proof ME exists!”
I would like to clarify what I said about finding Edward Shorter’s views interesting. I should have said “interesting” in quotation marks, or revealing, as in from a strictly academic point of view, it is informative to find out what the opposition thinks, and what they base their arguments on. In this case a non-evidence based argument. It is of course very helpful to know what one is up against.
And, speaking of knowing what one is up against, more ME patients have to learn about the politics of ME, and the ridiculous lack of government biomedical research funding. So many are too sick to find this out, or are just trying to drag themselves through their basic daily living. They don’t have the physical or mental energy to do anything else. Connecting the dots on all this stuff can be very difficult for ME patients – I know!
Although I am a 31 year veteran of ME, and have been writing to politicians and others since 1991 about this disease, I was not aware of the extent of the back room biopolitical shenanigans about this disease until I read Carol Schmid’s 2013 article “The ME/CFS Stigma” in Phoenix Rising. Following upon Carol’s work I also read Hillary Johnson’s Osler’s Web: Inside the Labyrinth of the Chronic Fatigue Syndrome Epidemic, Mary Dimmock’s “Thirty Years of Disdain How HHS and a Group of Psychiatrists Buried Myalgic Encephalomyelitis”, Ryan Prior’s and Nicole Castillo’s documentary, ” The Forgotten Plague M.E. and the Future of Medicine”, David Tuller’s many excellent commentaries on this horrendous situation, and Malcolm Hooper and others in the UK. Thank you to all!
People with ME are in a dire situation, but they need to know the full extent of the opposition’s arguments and power. I believe that with critical mass, that is, a great deal of people really knowing what’s what with this situation, and acting in whatever capacity they are able to, we will make a difference. To be uninformed about what’s really going on further delays any change for the better.
Re: the Canadian Institutes of Health Research (CIHR) grant application denial for a ME research network, and the follow up response from the CIHR.
Please see the link below to the Canadian Institutes of Health Research (CIHR) grant application review and denial, and below, as well, the response I received from Christian Sylvain, the Director General for the CIHR.
A couple of important points first: as per a February 13, 2016 letter I received from the new federal Health Minister, Dr. Jane Philpott, from the years 2000 to 2015, Canadian ME researchers received a total of $1.45 million. With over 400,000 in Canada with ME, that works out to about 22 cents/patient/year. The 2016 budget for ME research, without the denied grant in question, totals $45,000 (45 thousand dollars) or 11 cents/patient. MS, Parkinsons’ Alzheimers’ and epilepsy receive an average of $158.58/patient in CIHR research funding – thank you to Millions Missing Canada for supplying these funding statistics.
I am at a loss as to how our government can say ME is an important issue for them. The CIHR has provided next to no funding for ME for at least 16 years. And the current research network grant was denied, despite the fact many MPs, and the Health Minister advised constituents it was in the plans.
This grant review was previously posted on MEAction, and is also posted on ME/FM Action Network (As I understand it, there was only one grant application for the ME research funding.) There are 27 references used to support the grant reviewers’ denial. Twenty-one are more than 10 years old; two are from 1988. Six, and perhaps there are more, have been discredited by US health department agencies, and/or academics outside these agencies. The PACE trial is one of the references listed.
I believe what is meant by “face-to-face evaluation”, is not that the applicants meet with the reviewers, but that the reviewers meet each other to discuss the application. The reviewers remain anonymous to the applicants. The CIHR previously executed reforms to their review process, which caused much concern in the Canadian scientific community. I take it Mr. Sylvain emphasizing the fact the review was face-to-face indicates the previous more acceptable method of reviewers meeting each other was used in this instance.
Grant application review:
http://mefmaction.com/images/stories/News/NetworkNews/Catalyst-Grant-C2SAME_previewAps.pdf
Response from the CIHR re inquiry about the grant denial:
Dear Ms. Downey,
Thank you for your e-mail dated September 29, 2016, concerning myalgic encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). The Minister of Health recently forwarded your email to me so that I may share some information with you about how the Canadian Institutes of Health Research (CIHR) is helping to advance ME/CFS research.
First, let me assure you that we believe ME/CFS is an important topic of research. As you are aware, CIHR previously committed to supporting the creation of a national network for translational research in ME/CFS. Thus, in March 2016, CIHR launched a funding opportunity to support an ME/CFS research network that would accelerate research in this area, with funding of up to $600,000 over three years. Applications submitted to this funding competition, which intended to fund one network on ME/CFS and another on musculoskeletal rehabilitation, were evaluated through a rigorous face-to-face peer review process. Unfortunately, no applications related to ME/CFS met CIHR’s internationally recognized standards of scientific excellence. For additional information on the principles of peer review, I encourage you to visit CIHR’s website: http://www.cihr-irsc.gc.ca/e/39380.html.
I recognize the disappointment that the ME/CFS community experienced as a result of this outcome. CIHR is currently investigating alternate ways to advance ME/CFS research, and will continue to work with national and international partners to address this research gap. At the same time, CIHR continues to encourage researchers who are interested in pursuing research on ME/CFS to apply for funding through its investigator-initiated health research programs. For more information about these funding programs, please visit CIHR’s website: http://www.cihr-irsc.gc.ca/e/49934.html.
It is our hope that growing the number of researchers working in the area of ME/CFS will help increase the amount of research being done, and ultimately improve the lives of individuals living with ME/CFS and those of their families.
Thank you for writing about this important issue.
Sincerely,
Christian Sylvain
Director General, Corporate and Government Affairs
Canadian Institutes of Health Research
Thanks to Cindy and Lindy for all that info on the Canadian CIHR affair. Cindy, would it be OK if I cited Sylvain’s letter to you in my own?
Hi Chris,
Yes, you are most welcome to cite Mr. Sylvain’s letter in your own. Thank you for writing to the CIHR.
If Dr Korshetz & co. want to know about the history of ME-‘CFS’ they should be reading ‘Myalgic Encephalomyelitis and Post Viral Fatigue States: the Saga of the Royal Free Disease’ by Dr Melvin Ramsay, mentioned above by Mary Schweitzer. I wonder if they’ve even heard of it?
Has anybody suggested Osler’s Web to them. These would indeed add to their scientific understanding, no Ed Shorter. I always worry about giving a hearing to outrageous views as if they were legitimate: some people might just believe them, as we see in politics for example.