After I pointed out to Dr. Walter Koroshetz, Chair of the Trans-NIH ME/CFS Working Group, that NIH had invited a speaker who has publicly insulted people with ME/CFS and anyone who takes this disease seriously, Dr. Koroshetz responded that “inclusion in scientific conversation is not an endorsement,” and so little is known “that inclusivity of scientific thought will be critical to our success.”
“[I]nclusivity of scientific thought” does not typically include hypotheses that have been disproven. NIH does not invite HIV denialists and anti-vaxxers as speakers because they add no value to NIH’s work. So if NIH is making sure an opinion is included in the conversation, then NIH has made a judgment that the opinion is worth thinking about. Extending an invitation to Dr. Edward Shorter means that NIH expects he will say something relevant to its work.
To which I say: Enough.
Reams of data and peer reviewed papers have confirmed what patients have always known: ME/CFS is not a psychological disorder. The Agency for Healthcare Research and Quality, the National Academy of Medicine and NIH’s own P2P Panel concurred.
It is past time to discard the psychogenic myths of CFS’s past, once and for all.
Enough. Is. Enough.
I do not accept that outdated views, disproven by more recent work, should be included in the scientific conversation. My health and my life are worth more than that. I demand rigor. I demand data. I deserve quality science, not dusty old-fashioned prejudice.
I do not accept being dismissed, belittled or disrespected. I will not be manipulated into believing that my reality is not real.
People with ME/CFS are not delusional somatizers. The National Academy of Medicine (IOM) report was not junk science. Militant advocates did not hijack the committee. People with ME/CFS have not obsessed their way into disability.
Until the National Institutes of Health – as an institution and as a collection of individuals – sees this truth of the matter, there is nothing more to say.
Yup.
Said as much on my previous comment – they don’t get it, do they? We DON’T trust them. Any automatic trust given to the medical profession and the research ‘system’ in this country has long ago eroded – because of THEIR actions.
What burns me up is that I and I’m sure most others with this dreadful disease try so hard to appear well when we feel like crap. He accuses us of being well but acting sick when we’re sick and trying our best to act well.
Just when I thought I’d seen/heard it all….. they (in this case NIH) hurl more disrespect at us by condoning (by inviting) someone with some of the most egregiously psychogenic views of this disease.
NIH – that cooperation and engagement with the community (advocates, researchers, clinicians, etc) you espouse? Are you sure you are really trying to engage with us?
YES.
THANK YOU.
well spoken, and thank you.
Dr Koroshetz conveniently ignores the whole issue of Shorter’s bigotry, which is being rewarded with an all-expense-paid trip to Washington D.C., the self-presumed Capital of the World and home of the Beltway Bandits. Certainly Shorter is a Beltway Bandit, being an industry consultant receiving money from NIH.
Shorter publicly advocates the abuse of patients who have a serious chronic disease, and NIH pays him to do it. If he made similar comments about any other group of patients or any other marginalized and disparaged group of people, he would be given the boot, not a contract.
I demand that NIH stop using my hard-earned tax money (I paid plenty when I used to be able to work) to fund anti-patient propaganda promoters. Shorter isn’t a researcher. He’s not a clinician. He’s an industry consultant with an axe to grind. His conflict of interest statement would be an interesting read.
Brilliant response, says it all, thank you so much Jennie.
Thank you Jennie for catching this NIH action, writing your letter, and articulating this outstanding response to the reply. I was unable to find words to express my response to the reply which is a dismissive form letter and denial of responsibility for the choice to include him. Thank you for providing a voice so brilliantly!
They waste precious time and already miserable ME/CFS budget on anti-scientific views and then frame it as if we are the ones against certain aspects of medical research. There is no research supporting this historians clearly emotionally charged views.
Thank you for this poignant post.
Brilliantly articulated, Jennie! Thank you! ENOUGH IS ENOUGH!
I salute you and stand with you. We will not stand for this any longer. Those of us who have lived with this disease for many decades are not willing to backpedal.
I don’t know what was said in the teleconference call mentioned in some tweets and on Cort’s blog, but ACTIONS SPEAK LOUDER THAN WORDS! To the NIH, I say, “SHOW US THE MONEY”!!
What bugs me most is if they are paying his plane ticket, his hotel, feeding him, conversing with him.
They aren’t trying (nor could they possibly) convince this mansplainer to change his mind. They aren’t learning anything of value from him.
And more so they are wasting time, energy, and budget with this person. They are not strengthening their science, they are weakening it. If you want to engage with Canadians- find a real scientist. If you want to engage with psychiatry- engage with psychiatrists who actually matter. If you want to engage with naysayers (why?) engage with ones who actually have merit and don’t repeat their same nonsense hoping their feelings are true… see what I did there?
Why this specific person? Who does he know?
There’s more to this if he actually speaks, why this specific person! There’s so many better choices- professionally (his behavior is abusive and rude), practically (distance + cost), knowledge (an actual practicing psychiatrist with merit or a naysayer who actually knows the research)…
he’s so far divorced from this disease- by not having it, not studying it, not working with our population, he’s one person who knows nothing about it spitting his mouth. Why him?
And once again, we are accused of being militant with no evidence.
We show any emotion and we prove we are irrational or fakers.
We don’t show emotion and we prove we are fakers and just depressed…
[(remember healthy white straight men with guns showing up places is “freedom of expression and the 2nd amendment) but a group of mostly women showing up in wheelchairs and chairs and sitting on the ground talking with a slight show of emotion -> militancy/hysteria/overly emotional/whiny, etc.]
Hypersensitivity- we are often accused of this. But I have seen expressions of disappointment, betrayal, and yes a little (fair) anger. I have seen politeness, despite the energy that takes. I have seen civilness, I have seen us be activists and respectful, challenge and debate the unfairness.
I have seen the simple act of us talking amongst ourselves decried as “militant” (at best) but this dude can call us delusional and so many other words of clear bias- but yes we are the biased ones. We are delusional and hysterical and abusive and feel too much. MHMM sure! Sure…
So articulate, thank you. Patients are expected to be far better-behaved than the researchers who trash us in pubic under the guise of research.
Shorter is considered an expert in “feminine hysteria”.
Who invited him and for what earthly reason?
Can the IOM, solve CFS/ME, and Open Med foundation write a letter? Better yet, take out an ad in the NYTimes? Enough is enough!
Jennie,
Thank you so much for your continual efforts to get funding for CFS/ME research and for creating awareness about this debilitating illness. I’m sometimes too weak to express my gratitude, but please know that your posts have been validation for me.
If it were possible to wish CFS/ME away, I’m certain that it wouldn’t exist. Who would choose to barely exist rather than to live a fulfilled life? I’m exhausted of explaining myself, of pushing myself to even take a shower, of trying the newest “cure,” of filling out medical forms, of being broke, of being a burden, of apologizing for being slow, of breaking things, of feeling like I have the flu every day of my life… I’m tired of being way beyond tired.
I’m tired of hearing “Me, too,” when I say that I feel awful. Oh, really? Do you feel like a truck ran over you and left you for dead every minute of every day? I’m tired of hearing that I should try exercising. Oh, there’s an idea. Sure, I’ll run around the block and you cook my meals for the next week while I lay in bed and recover. I’m tired of being lectured about the newest health craze that will surely cure me. Well, if it cured your cousin’s tinnitus, then it must be the cure for CFS/ME. Seriously?
I’m sending good thoughts to every brave person who is battling CFS/ME and similar illnesses. Thank you all for sharing your stories. Again, thank you Jennie.
And Koroshetz’ point does not apply because Shorter is not a scientist and he doesn’t use scientific data. No science is going to be sparked by this nonsense. NIH has lost trust by inviting him. If they don’t uninvite him I despair of working relationship with patient community. Major mistake!
The delay in acknowledging CFS/ME and researching of the illness is atrocious. Giving credence to dis-proven studies and ignoring the pleas of those who suffer from the illness has caused me to lose all faith in the medical community.
Keep up the good work!
I’ve had ME since June, 1984.
I’ve lived through the decades of Stephen Straus dismissing it as “poor sleep hygiene;” we take too many naps during the day, and that’s why we can’t sleep at night.
I’ve read the incredibly demeaning phony letter, written as if it was from a patient, clearly healthy but totally flakey, that the CDC had posted in an area where it was visible to the public for more than two years.
I remember the CDC diverting funds appropriated specifically for CFS/ME research to other projects, and lying about it to Congress. As we’ve been reminded recently, lying to Congress is a crime.
I remember CDC promising to make up the appropriated amounts and do the research. I remember them discovering absolutely nothing.
I remember when the CDC’s website stated confidently that no further research was needed, because CFS was caused by sexual abuse during childhood. I haven’t bothered to check since then.
So I can’t say I’m surprised by this new round of denialism. But I’m mad as hell, and I’m not going to take it any longer. As soon as I can find the energy, I’ll be sending my own letter to Dr. Koroshetz.
ENOUGH IS ENOUGH!
This whole issue of Shorter and Koroshetz’ defense of why he was invited to be part of this group, and Jennie’s sleuthing to expose same might be a good thing for us in one important regard: now we KNOW how much Dr. K. REALLY UNDERSTANDS about ME. Very darn little. No one who understood the suffering of patients with ME and who had delved into the thousands of papers on the physical effects of the disease would ever invite the likes of Shorter to a meeting regarding ME. Dr. K. revealed far more than he realized with his letter back to Jennie.
Words are cheap, and words are all we are getting because an accurate knowledge of ME apparently does not exist anywhere in the NIH. Joe Biden said something to the effect of “what they value they will put into the budget.” We’ll believe you guys at NIH when we see over $100 million put into research RFAs for ME/cfs, and we hear no more blather about how the community should provide seed money for research or find the researchers!
You think Trump supporters are mad? They ain’t got nothin’ on us.
Thanks, Jennie, as always.
Agree with everyone’s comments. And until NIH puts its money where its “words” are, any claim they make about helping to find causes and biomarkers and treatments for this disease is meaningless. It is all “words” and crumbs thrown to ME/CFS sufferers.
I don’t mind the word “militant” in and of itself. It’s how it is misused against us that is the problem, as an attack. It’s the attitude behind it, dismissive, patronizing, arrogant.
We have to keep the pressure on the NIH. I think we should be calling and emailing.
One approach would be to let the NIH know that by inviting someone like Dr. Edward Shorter to make a “scientific presentation” they declare their hostility to the ME/CFS community. We should then inform them that henceforth we will advise all ME/CFS patients to boycott any and all NIH intramural studies for the foreseeable future. The only research studies we will participate in are those run by institutions that respect the ME/CFS patient population and do not try to undermine our credibility at every turn. It is not worth our time (or our tax dollars) to continue to cooperate with the NIH in it’s internal studies. We might think about doing the same with the CDC if it is warranted.
I am one of said people and I was thinking of doing just that.
Dr K was just as condescending and dismissive during the whole Wallit fiasco. He talks to us like children.
It’s like inviting a KKK member to present on the history of of the African American experience.
A holocaust denier to speak on the holocaust.
Why not send him to an MS group as they lived fellows like him for many years
Does he not understand that thousands have taken or lost their lives in large part due guys like him, Strauss, Walitt ect? I hate to jump on the bandwagon and call this triggering but all the memories of all the doctors we all saw who treated us like liars come flooding back. The whole reason Klimas got into the field was because she saw the trauma left be docs with his beliefs and felt he beed to help.
Maybe we can fund a trip for her to speak after him.
The song and dance continues.
Thanks again for your continuous advocacy, and well said! The NIH has once again proven they don’t have a clue. This roller coaster of emotions, from excited to deeply dissatisfied with the whole medical community is exhausting! Show us the money? or get out of the way! Thinking of you Jennie, wishing more good days than bad for you ?
Thank you for speaking on behalf all of us, Jennie. I hope the appreciation and support for your efforts (reflected in the comments to your last three posts) give you an emotional lift after all the time and effort you put into stopping this madness on the part of NIH. You are our guiding star.
What Toni said.
Shorter’s view of us as “upper middle-class” women colluding with “high-priced doctors” is a view picked up from the popular press of 20 years ago, the “yuppie flu” thing so popular for a while. Totally removed from the real science on us.
On the inescapable female preponderance (which is shared of course with most of the major autoimmune diseases–are all those afflicted with RA or Lupus put in the same category in Shorter’s mind?) there is an intesting paper by Bakken IJ, “Two age peaks in the incidence of chronic fatigue syndrome/myalgic encephalomyelitis: a population-based registry study from Norway 2008-2012) which shows numbers by age; up to about 10 years male and female run pretty even, and then the female preponderance takes off to a peak in the mid-late teens; numbers then drop until the female numbers climb to an even higher peak in the mid-late 30s, while the males jog along below. After 50 or so they drop off, and after 60 or so the sexes pretty much even out. Sorry–it’s those hormones that do it to you! But remember Blake’s words–“The sexual is threefold, the human is fourfold”–we are all humans at base!
There is also a paper by Leonard Jason et al, “CFS: A Review of Epidemiology and Natural History Studies” that argues that the statistics in most previous studies have been skewed by the fact that the under-privileged have not been contacted by most studies, though a CDC found that “the rates of CFS were higher among their nonwhite sample.” Shorter’s view of us is shaped more by his own social and intellectual world and biases than by the science that attempts to deal with the real world. Pity that he was not invited to the same session that was given to Leonard Jason!
It’s extremely hard to understand why NIH would characterize the work and ideas of a social historian with no actual scientific/medical education or other credentials as “scientific thought” – he’s not even a social scientist!
Great comments following amother fine letter/essay from Jenny. Should it seem useful to post or borrow from my letter to Drs. Koroshetz Whittemore and Collins (see my FB page) feel free. (Open source; within context.)
So well said….Thank you for speaking for all of us that are suffering..
Thanks for everything, blog and comments, etc.
How can this guy be part of “scientific conversation” or contributing to “scientific thought” when he is neither a scientist or a medical professional? One has to be a scientist of some kind to contribute “scientific thought.” This is like the snake-oil salesman being invited to speak about cancer or heart disease. Knows nothing.
Also, I bristle at this “upper-middle class” woman with a “high-priced doctor” stereotype. I am not “upper-middle class” and do not have a “high-priced doctor.” I have a good internist and live a very frugal lifestyle, worrying about every dollar.
Thank you, thank you, from the deep darkest UK, with all its ME-related shit.
Everything you say in your blog is spot-on.
Enough is enough.
I really don’t know if I care much about this one. If Mr. Shorter wants to go in front of some of the most rigorous, dedicated and brilliant scientists in the world and make a complete dickhole of himself, who am I to stop him? To me, this seems like another case of giving as much rope as possible so that when it finally snaps taut, it will only result in his head being ripped off his body with that much more ferocity. As long as the patients are real ME/CFS patients, which everything I’ve read indicates they will be, this study should be a smash.
You have more faith in the management and staff of the NIH than most of us have. Bullshit infects the minds of all people regardless of their professional accomplishments or level of education. Who will be there to systematically debunk Mr Shorters assertions? It takes a lot of energy to refute bullshit – far more than it takes to produce it.
Unfortunately, although they might be dedicated and brilliant, that does not mean they are necessarily well-educated about ME/CFS. Not too long ago, NIH grant review panels included people who had no knowledge, experience, or publications having to do with this field and well-known scientists in this field were often denied grants. Scientists expect denial based on many factors but it is simply wrong to get your grant denied because the reviewer felt that ME/CFS was a psychological condition when there were already thousands of articles indicating the opposite. A lot of people complained and that was finally changed gradually over the last few years.
Also, Max Planck, a pioneering physicist, did not say “science advances one funeral at a time” for no reason. Although scientists would like to say they are objective, all have biases; it’s just a question of which one, how much, how open they are about it, and if they are even aware of their own biases and how it might affect their work. (No knock against scientists; I am one myself and we have to disclose conflicts of interest when publishing.)
Finally, you mention as long as the intramural study contains “real patients.” I assume you are new to this disease or haven’t been keeping up. Read Jennie’s prior posts or others around the web and note that patients and caregivers, as well as clinicians and researchers, commented extensively on that study, even as NIH did not seek input, and that was WHY it improved. Almost every positive action taken by the government was not automatic but hard-won and demanded by outsiders.
Letter:
November 7, 2016
Walter J. Koroshetz, M.D.
Director, National Institute of Neurological Disorders and Stroke National Institutes of Health
9000 Rockville Pike
Bethesda, Maryland 20892
Dr. Koroshetz:
I have read Ms. Jennie Spotila’s recent open letter to you.
I have also read your response.
May I suggest that the reason you know so little about ME/CFS, and specifically about
biological causes, is that no federal health agency has done more than minimal research on this disease.
My opinion on this issue has developed over the years since I became ill with ME in June of 1984, and totally disabled shortly thereafter.
I remember when Stephen Straus, M.D., dismissed our problems as “poor sleep hygiene;” we took too many naps during the day, and that’s why we couldn’t sleep at night.
I have read the text of the incredibly demeaning letter, written as if it were from a healthy but totally flakey “CFS patient,” that the CDC kept posted in an area visible to the public for more than two years.
I remember when the CDC did a “prevalence study” and concluded that there were no more than 33,000 cases of CFS in the U.S.
I remember when the CDC diverted funds appropriated specifically for CFS research to other projects and lied to Congress about it. Recent events, of course, have reminded us that lying to Congress is a crime.
I remember when the CDC promised to restore the CFS funds. I don’t remember that they discovered anything in particular with them.
I remember that a few years ago the CDC website announced that further research was not needed, because CFS is caused by sexual abuse during childhood. I haven’t bothered to check on their “theories” since then.
I have seen more than 15 physicians since I became ill. I was sent to several over a period of 11 years by the Public Employees Retirement System of Ohio as part of the bureaucratic process required for my disability retirement benefits. I went to others seeking diagnosis and treatment for my illness. Because of the dire lack of useful information about ME and the misinformation campaign that continues to this day, and because I didn’t look sick and all the standard lab test results were normal, only two of them were able to hold these two ideas in their heads at the same time:
1. I was devastatingly disabled by a very real physiological disease.
2. There was almost nothing they could do about it.
All of these doctors were ignorant, of course, since nobody understood ME. Some were
arrogant and rude. One seemed to be in a rage when he told me there was nothing wrong with my health; I believe he thought I had tried to deceive him and wasted his time. One of those PERS sent me to asked me a totally irrelevant question that was a shocking invasion of my privacy, but since my income and health insurance depended on her report, I had to answer it. One who sent a report to PERS described me as a lame failure in every aspect of life. This same doctor saw a friend of mine
who was also going through the PERS process; the report he wrote about her was a clear violation of basic medical ethics. Twice PERS sent me to the same infectious disease specialist; both times, he wrote in his report that he found no evidence of a continuing infection, and added, “You may wish to get a second opinion.” The second time, I decoded that: “The doctor who can diagnose her problem is a psychiatrist.” One doctor used my need for a report to PERS to try to force me to continue taking a drug that caused one of the worst reactions I have ever had and made me even more ill.
If their proposed treatments didn’t work, that proved I wasn’t really sick. Except for the courageous two who could accept the truth and really tried to help, they were following the lead of the medical establishment.
That establishment, of course, included the NIH, the CDC, the proponents of the absurd GET/CBT theory that was carried all the way to the shockingly flawed PACE study, and Sir Simon Wessely and his equally absurd attempts to label ME/CFS, fibromyalgia, and several other diseases “functional somatic syndrome.”
And we must not forget Elaine Showalter, the English professor who felt called upon to write a book explaining that the suffering of ME patients was real, but was caused by psychological problems and our mistaken belief that we were physically ill. I think she used the term “mass hysteria” when she presented herself as the voice of hard science while promoting her book. I believe she and Dr. Shorter share some of the same ideas.
I no longer have the kind of bad days I had in the early years, when sometimes I ached all over and was so exhausted that absolutely nothing mattered except whether I had to move in the next hour. But I also no longer have good days when I can do my shopping, make a pot of chili, go for a walk, or even rest sitting up instead of flat on my back. My neurological symptoms have increased as other symptoms decreased. ME has been part of my life every day of all those years. And almost every day I have suffered from the social isolation that is such a painful part of this disease.
I have been a writer and editor for all of my adult life, but it has taken me four days and more hours than I can count to write this letter.
As a member of “the ME/CFS community,” I endorse any “scientific enterprise” directed toward understanding the disease. “[I]nclusivity of scientific thought” is highly appropriate.
However, “scientific thought” does not include conclusions that are as unshakable as they are false, and have been expressed in highly insulting language. Dr. Shorter wrote last year that there had been “no breakthrough findings of organicity, nothing. And there never will be.” Researchers will definitely not find something they are sure does not exist.
When I became ill, I was 37. Since I am now 70, this disease has not yet consumed half of my life. However, it has consumed most of my adult life, and what could have been expected to be my most productive years. So I take it somewhat more seriously than NIH researchers who after thirty years are thinking about having some meetings and possibly developing a plan that may lead to some actual research.
And when I say “actual research,” I mean scientific research that is informed by what little is in fact known about ME, and by the determination finally to find real answers, not by the shocking prejudice that has left today’s research where it should have been 25 years ago.
Sincerely, Linda Sleffel
Thank you, Linda. I’m so sorry for the loss of your life as it should have been.
Linda, a great letter–let’s hope that Dr. K actually gets to read it.
Here is a link to an article about real scientific research into causes and biomarkers of ME/CFS. Dr. Anthony Komaroff of Harvard Medical School is quoted and explains research findings about cytokine differences between ill and healthy people, genetic research and more. Why doesn’t the NIH read this article and have him speak rather than “Dr. Shorter”? At least this is based on “scientific thought” and is part of the “scientific conversation.”
http://www.medscape.com/viewarticle/871552