Brian Walitt and his role leading ME/CFS research at the USA NIH

[V.R.T.]

This is definitely bad science and it would seem that Walitt, at least, went into this study wanting to find that ME fitted into his own psychosomatic/functional preconceptions (perhaps regardless of any outcomes), but do we have a ‘preponderance of evidence’ demonstrating intentional misconduct?

We certainly need to clearly set out what is wrong with this study and ensure that the wider research community recognise this. Also raising the issue of research misconduct may help get our point across, however I suspect any attempt to press a formal case of misconduct will fail. The reluctance of the research establishment to address such issues can be seen in the failure of the UK establishment to accept the egregious failings of the PACE study.

[added- Perhaps the key question is how best to get the NIH to understand something has gone very wrong and to ensure future funding does not get sucked down the same rabbit hole.]

Just because the establishment is reluctant to address misconduct doesn't mean we shouldn't be very clear about what has happened, and if that means an official/legal process then that's what we need to do. This is, as has been said, seeming like the opening salvo of the next battle with bps.

We have to counter it as thoroughly and strongly as we can.

In my view and not being au fait with the US legal definition, shouldn't lying to patients over and over about the nature of Wallitt's involvement, and the significance of the findings, not to mention Wallitt so clearly bringing his preordained conclusion to the research and doing his best to find it no matter what the data says - in my view that's clear misconduct.

 

[RaviHVJ]

Just because the establishment is reluctant to address misconduct doesn't mean we shouldn't be very clear about what has happened, and if that means an official/legal process then that's what we need to do. This is, as has been said, seeming like the opening salvo of the next battle with bps.

We have to counter it as thoroughly and strongly as we can.

In my view and not being au fait with the US legal definition, shouldn't lying to patients over and over about the nature of Wallitt's involvement, and the significance of the findings, not to mention Wallitt so clearly bringing his preordained conclusion to the research and doing his best to find it no matter what the data says - in my view that's clear misconduct.

I'm afraid an academic imposing their pre-ordained conclusions on research is a pretty everyday occurrence. It of course goes profoundly contrary to the principles of academic work, but that doesn't prevent it from constantly happening. An often-quoted refrain about the study of history goes that Whig historians write Whig history, Marxist historians write Marxist history, Christian historians write Christian history. Now it's important not to conflate Walitt's very low quality research with a huge body of historical writing - many Marxist historians have written Marxist histories which are truthful to their primary sources and which have added a great deal to our understanding of the past. So there's a spectrum here, and what Walitt has done clearly constitutes bad research. However, there is a very significant difference between bad research and research misconduct. If people find evidence that Walitt tampered with findings, altered figures or something along those lines, then he should absolutely be reported for misconduct. But if you're dealing with academics, you have to play their game to some degree. Prior to falling ill, I was on track to become an academic, and based on my experience, academics will turn their noses up in response to lay people making criticisms that aren't very, very well founded, so if you're going to make a research misconduct complaint, it has to be right on the money with a great deal of evidence.

More broadly, I'd caution people against applying the PACE trial playbook to this study. It made sense to go after the PACE trial hammer and tongs because it had such a direct influence on national and global guidance around harmful treatments. The same applies to the Cochrane review to some extent. This study is in a slightly different category.

In my view, the most important response to this study isn't academic but political - I'd draw not from the PACE playbook, but I'd look more at Long Covid advocacy or AIDS activism. In the time since the Walitt study was published, about 5-6 major Long Covid studies have been published in top journals, two from Cambridge groups, another on brain fog and the BBB, another on cognitive impairment post COVID in the NEJM, and there was a recent pre-print by Iwasaki and Putrino. The truth is that a singular study should not matter a great deal. Sure, it was $8 million, but $8 million is peanuts in the context of medical research. In the Long Covid world, because there's far more research going on, if there's a bad study that comes out, it's far from the end of the world, because within a couple of weeks, several more biomedical studies will come out.

I know this forum leans heavily towards scientific discussion, so the natural response of a forum like this one to a paper like that will be the PACE playbook, but if it were me, I'd basically copy the Long Covid Moonshot in response to this study - I'd demand something like $200 million a year in research from the NIH, and find any way to put pressure on them to that end. With the PACE playbook, yes you may refute many of the study's conclusions in a year or two, maybe even longer, but the fundamental state of affairs which allows for people like Walitt to assert themselves in ME/CFS research - the complete lack of funding for biomedical research - won't shift. You can win individual battles with the BPS lot by vigorously responding to and refuting their arguments, but you can never achieve a lasting victory that way. The only way to achieve a lasting victory is to guarantee sustained, long-term funding for ME/CFS research, and that's fundamentally a political fight rather than a scientific/academic one - it belongs much more to the tradition of the AIDS movement than something like the PACE trial.

 

[Kitty]

an academic imposing their pre-ordained conclusions on research is a pretty everyday occurrence

I agree—it won't be viewed as egregious enough to engage misconduct procedures or funding withdrawals.

The best approach is to do what people are doing: finding ways to show that it's badly done and meaningless. Social networking could be as effective as academic rebuttal, because he'll struggle to get very far if patients quietly decline to take part in his studies.

 

[V.R.T.]

I'm afraid an academic imposing their pre-ordained conclusions on research is a pretty everyday occurrence. It of course goes profoundly contrary to the principles of academic work, but that doesn't prevent it from constantly happening. An often-quoted refrain about the study of history goes that Whig historians write Whig history, Marxist historians write Marxist history, Christian historians write Christian history. Now it's important not to conflate Walitt's very low quality research with a huge body of historical writing - many Marxist historians have written Marxist histories which are truthful to their primary sources and which have added a great deal to our understanding of the past. So there's a spectrum here, and what Walitt has done clearly constitutes bad research. However, there is a very significant difference between bad research and research misconduct. If people find evidence that Walitt tampered with findings, altered figures or something along those lines, then he should absolutely be reported for misconduct. But if you're dealing with academics, you have to play their game to some degree. Prior to falling ill, I was on track to become an academic, and based on my experience, academics will turn their noses up in response to lay people making criticisms that aren't very, very well founded, so if you're going to make a research misconduct complaint, it has to be right on the money with a great deal of evidence.

More broadly, I'd caution people against applying the PACE trial playbook to this study. It made sense to go after the PACE trial hammer and tongs because it had such a direct influence on national and global guidance around harmful treatments. The same applies to the Cochrane review to some extent. This study is in a slightly different category.

In my view, the most important response to this study isn't academic but political - I'd draw not from the PACE playbook, but I'd look more at Long Covid advocacy or AIDS activism. In the time since the Walitt study was published, about 5-6 major Long Covid studies have been published in top journals, two from Cambridge groups, another on brain fog and the BBB, another on cognitive impairment post COVID in the NEJM, and there was a recent pre-print by Iwasaki and Putrino. The truth is that a singular study should not matter a great deal. Sure, it was $8 million, but $8 million is peanuts in the context of medical research. In the Long Covid world, because there's far more research going on, if there's a bad study that comes out, it's far from the end of the world, because within a couple of weeks, several more biomedical studies will come out.

I know this forum leans heavily towards scientific discussion, so the natural response of a forum like this one to a paper like that will be the PACE playbook, but if it were me, I'd basically copy the Long Covid Moonshot in response to this study - I'd demand something like $200 million a year in research from the NIH, and find any way to put pressure on them to that end. With the PACE playbook, yes you may refute many of the study's conclusions in a year or two, maybe even longer, but the fundamental state of affairs which allows for people like Walitt to assert themselves in ME/CFS research - the complete lack of funding for biomedical research - won't shift. You can win individual battles with the BPS lot by vigorously responding to and refuting their arguments, but you can never achieve a lasting victory that way. The only way to achieve a lasting victory is to guarantee sustained, long-term funding for ME/CFS research, and that's fundamentally a political fight rather than a scientific/academic one - it belongs much more to the tradition of the AIDS movement than something like the PACE trial.

Okay but the way that a BPS researcher took over this biomedical trial of ME patients and twisted it to fit a psychological/psychosomatic lens is not an ethical or acceptable way to conduct research.

I agree with a lot of what you've said, but to draw a dichotomy between academic and political when dealing with government institutions, and with researchers who have the ear of politicians isn't correct.

These people have a vested interest in keeping these illnesses in the psychological category and they play political games and use their influence to ensure that happens.

 

[Binkie4]

The best approach is to do what people are doing: finding ways to show that it's badly done and meaningless. Social networking could be as effective as academic rebuttal, because he'll struggle to get very far if patients quietly decline to take part in his studies.

I agree. This is in effect what happened to the intramural study. There was a lot of criticism particularly of Walitt leading the study around 2016. Then we heard (B_V https://www.s4me.info/threads/usa-national-institutes-of-health-nih-intramural-me-cfs-study.2980/ ) of the slowness in recruiting patients. The aim was 40 patients but the number achieved was 17.

There were 16 recruited by Feb 2018 according to Brian so only one more was recruited even though the pandemic was nearly 2 years away. The pandemic was used by the NIH to explain the low numbers but it seems more likely that patients were reluctant to engage.

 

[RaviHVJ]

Okay but the way that a BPS researcher took over this biomedical trial of ME patients and twisted it to fit a psychological/psychosomatic lens is not an ethical or acceptable way to conduct research.

I agree with a lot of what you've said, but to draw a dichotomy between academic and political when dealing with government institutions, and with researchers who have the ear of politicians isn't correct.

These people have a vested interest in keeping these illnesses in the psychological category and they play political games and use their influence to ensure that happens.

It's certainly not ethical or acceptable, but it's also not research misconduct, and academics will obsess over those kinds of distinctions.

There's certainly overlap between the political and scientific, but I was more trying to draw a distinction between a) the kind of advocacy that followed the PACE trial, where advocates spent years dissecting the paper and then responding to it in academic journals and b) the kind of advocacy the Long Covid movement is doing at the moment - calling senators, organising protests, trying to generate media attention with the clear goal of achieving far more research funding. The current split in the Long Covid movement is over research funding, the moonshot initiative asking for $1 billion a year, the less tied to reality LCAP group asking for $28 billion a year.

Clearly both types of advocacy are needed, including in response to this paper, but in my view it's the latter that is decisive (as was in the case of the AIDS movement). I spend most of my time in Long Covid spaces asking longhaulers to listen to people with ME - about how to manage these illnesses, about how to understand the history of these illnesses - but I do think the ME community could take a leaf out of the Long Covid movement's current advocacy playbook.

 

[V.R.T.]

It's certainly not ethical or acceptable, but it's also not research misconduct, and academics will obsess over those kinds of distinctions.

There's certainly overlap between the political and scientific, but I was more trying to draw a distinction between a) the kind of advocacy that followed the PACE trial, where advocates spent years dissecting the paper and then responding to it in academic journals and b) the kind of advocacy the Long Covid movement is doing at the moment - calling senators, organising protests, trying to generate media attention with the clear goal of achieving far more research funding. The current split in the Long Covid movement is over research funding, the moonshot initiative asking for $1 billion a year, the less tied to reality LCAP group asking for $28 billion a year.

Clearly both types of advocacy are needed, including in response to this paper, but in my view it's the latter that is decisive (as was in the case of the AIDS movement). I spend most of my time in Long Covid spaces asking longhaulers to listen to people with ME - about how to manage these illnesses, about how to understand the history of these illnesses - but I do think the ME community could take a leaf out of the Long Covid movement's current advocacy playbook.

I don't see how using a biomedical study which participants have been promised will move the field of ME research forward and help find biomarkers etc as a Trojan horse to launch a new theory as to why those people just think they are sick, and repeatedly lying to those patients and the the wider community about what is happening, doesn't constitute misconduct. If it doesn't we need a new fucking definition.

 

[RedFox]

I'm afraid an academic imposing their pre-ordained conclusions on research is a pretty everyday occurrence. It of course goes profoundly contrary to the principles of academic work, but that doesn't prevent it from constantly happening. An often-quoted refrain about the study of history goes that Whig historians write Whig history, Marxist historians write Marxist history, Christian historians write Christian history. Now it's important not to conflate Walitt's very low quality research with a huge body of historical writing - many Marxist historians have written Marxist histories which are truthful to their primary sources and which have added a great deal to our understanding of the past. So there's a spectrum here, and what Walitt has done clearly constitutes bad research. However, there is a very significant difference between bad research and research misconduct. If people find evidence that Walitt tampered with findings, altered figures or something along those lines, then he should absolutely be reported for misconduct. But if you're dealing with academics, you have to play their game to some degree. Prior to falling ill, I was on track to become an academic, and based on my experience, academics will turn their noses up in response to lay people making criticisms that aren't very, very well founded, so if you're going to make a research misconduct complaint, it has to be right on the money with a great deal of evidence.

More broadly, I'd caution people against applying the PACE trial playbook to this study. It made sense to go after the PACE trial hammer and tongs because it had such a direct influence on national and global guidance around harmful treatments. The same applies to the Cochrane review to some extent. This study is in a slightly different category.

In my view, the most important response to this study isn't academic but political - I'd draw not from the PACE playbook, but I'd look more at Long Covid advocacy or AIDS activism. In the time since the Walitt study was published, about 5-6 major Long Covid studies have been published in top journals, two from Cambridge groups, another on brain fog and the BBB, another on cognitive impairment post COVID in the NEJM, and there was a recent pre-print by Iwasaki and Putrino. The truth is that a singular study should not matter a great deal. Sure, it was $8 million, but $8 million is peanuts in the context of medical research. In the Long Covid world, because there's far more research going on, if there's a bad study that comes out, it's far from the end of the world, because within a couple of weeks, several more biomedical studies will come out.

I know this forum leans heavily towards scientific discussion, so the natural response of a forum like this one to a paper like that will be the PACE playbook, but if it were me, I'd basically copy the Long Covid Moonshot in response to this study - I'd demand something like $200 million a year in research from the NIH, and find any way to put pressure on them to that end. With the PACE playbook, yes you may refute many of the study's conclusions in a year or two, maybe even longer, but the fundamental state of affairs which allows for people like Walitt to assert themselves in ME/CFS research - the complete lack of funding for biomedical research - won't shift. You can win individual battles with the BPS lot by vigorously responding to and refuting their arguments, but you can never achieve a lasting victory that way. The only way to achieve a lasting victory is to guarantee sustained, long-term funding for ME/CFS research, and that's fundamentally a political fight rather than a scientific/academic one - it belongs much more to the tradition of the AIDS movement than something like the PACE trial.

Agreed. This paper is mediocre, but it's in the realm of biomedical, not biopsychosocial, research. Let's use it as a starting-off point. "We appreciate the attention you paid to ME/CFS but this isn't enough to lead to treatments that really help us. We'd like further work, like higher funding, maybe a drug trial."

 

[RaviHVJ]

I don't see how using a biomedical study which participants have been promised will move the field of ME research forward and help find biomarkers etc as a Trojan horse to launch a new theory as to why those people just think they are sick, and repeatedly lying to those patients and the the wider community about what is happening, doesn't constitute misconduct. If it doesn't we need a new fucking definition.

I wish it wasn't the case, but none of those things constitute research misconduct. Now it may be the case that when people dig sufficiently into the data, instances of misconduct do emerge - I doubt this will prove the case, but maybe they falsified data. More likely in my view is that, from an academic point of view, the paper just isn't very good - the methods aren't up to scratch and the data doesn't support Walitt's conclusions. So you'd then have rebuttals.

Also worth saying that academics playing political games to increase their influence at the expense of patients also certainly isn't new. Early in the AIDS crisis, a couple of professors in the University of California system were effectively blackballed by their universities for going to political bodies for funding rather than the usual channels - at a time when there was next to no funding for AIDS research even though plenty of patients were dying. None of those administrators faced any consequences, and most of the faculty actually agreed with those administrators, such are academics invested in their little political games. Academia is a small and petty little world, but if you're going to engage with academics you have to play by their rules to some extent. Which is partly why I prefer the political route. Focus on getting lots and lots of funding, and research will ultimately sort itself out. Lots and back and forth with academics imo doesn't lead to transformative change long term.

Should say, I don't love any of the above - I think the way Walitt hijacked the study was incredibly unethical and is an utter insult to patients. But all of the above needs to be factored in if the community is looking to respond in an effective manner.

 

[Laurie P]

I wonder if there were any violations regarding informed consent. Maybe there is something here that can help us. Informed Consent FAQs https://www.hhs.gov/ohrp/regulations-and-policy/guidance/faq/informed-consent/index.html

 

[Jonathan Edwards]

This paper is mediocre, but it's in the realm of biomedical, not biopsychosocial, research. Let's use it as a starting-off point. "We appreciate the attention you paid to ME/CFS but this isn't enough to lead to treatments that really help us. We'd like further work, like higher funding, maybe a drug trial."

I am afraid that this is all too biopsychosocial. It deliberately mixes up biology and psychology exactly as before. It would be nice to use it to encourage more NIH funding (NIH have previously funded better projects so it is not a starting-off point.) I would have to suggest "We appreciate the attention you paid to ME/CFS but this isn't enough to lead to treatments that really help us and the study wasn't very good. We'd like higher funding, but awarded to someone else thanks."

 

[SNT Gatchaman]

I'm repeating much of what's posted above. There's a risk of it back-firing. We've recently seen this forum being tagged with the labels "catastrophising", "conspiracy theorising" etc. (With friends like these...)

Some of this research has not been done well, and putting a BPS proponent in charge was clearly fatal to the endeavour, significantly hampered further by inadequate n. But there's an entire sphere of medical research devoted to doing exactly this kind of thing, so it's hard to imagine it being viewed as a departure from accepted practice. The problem is too high level across the globe - medicine as a whole thinks this is all valid science. I struggle to understand how you can go from 2015's IoM report saying "this is serious and biological" to NIH saying "yes, let's do a good in-depth biological study" to running a study where the PI / lead author is essentially trying to rewrite the disease as FND. But the answer probably comes back to "medicine as a whole thinks this is all valid science".

I think it's better to cut our losses (yet again) and concentrate on promoting and supporting the really good biological researchers: those on this forum, those adjacent and those quite new to the entire field, courtesy of LC. I don't know how NIH will respond to the upset this paper has caused. The seminars that ran through late last year were very good: I was quite buoyed watching talks on eg cardiovascular and immunometabolic ideas. It's difficult to reconcile these two faces of NIH and I don't know how they'll successfully cover all this at their "please explain" seminar for the Walitt et al paper.

At the end of the day, this paper will be viewed poorly and it may have little impact when we look back in 3-5 years. Their GWI and LC studies are likely doomed unless they recognise their fundamental problem and reconfigure, but that seems unlikely. With luck the patients will have a better understanding going in and either not volunteer or continue to engage while forewarned and "knowing the score".

And anyway, these findings were overtaken by ME and LC research before it was even published. I only see more biological findings coming down the line as technologies and capabilities swiftly advance (esp. mitochondrial and brain imaging). Also studies into cancer, neurodegenerative and cardiovascular conditions, long duration spaceflight etc all continue on and will likely add to our understanding of this disease's mechanisms indirectly.

I prefer to think about the excellent support we do have. Look at NICE 21 — a complete reversal of dogma. And there's no way that could be reversed again, standards have risen and will not easily fall — even the BPS cheerleaders can't now seem to publish papers with results that support their hypotheses and it's only going to get harder for them. (Don't worry they'll keep trying though.)

 

[Jonathan Edwards]

I think it's better to cut our losses (yet again) and concentrate on promoting and supporting the really good biological researchers:

Agreed.

But picking apart bad arguments can be a very useful exercise while you are waiting for a breakthrough. Many many times I have engaged in critical discussions where we have realised that our critical argument doesn't quite follow through and that there is a serious possibility that we have made a false assumption ourselves. Most of the time it isn't quite that bad but we come out with a clearer understanding of what the right arguments really are.

I was amused to be reminded of my initial posts about this study, some of which I have subsequently contradicted.

You make progress in science by getting a very clear idea of what options really are wrong. After that the rest is easy (as Sherlock Holmes pointed out).

 

[NelliePledge]

The picking apart of the basis for the paper’s claims for effort preference going on record through letters, papers must surely be of value. Whatever lack of insight or professional politeness prevented this stuff getting rejected by NIH at an earlier stage its lack of credibility as research on ME/CFS needs to be made crystal clear. Not least so that people involved in ME Advocacy who are engaging with politicians and decision makers have something to point to counter efforts by the psychosomatic clique to gain further resources.

 

[Sid]

I wish it wasn't the case, but none of those things constitute research misconduct.

Yep. Lay members of the public have no idea how difficult it is to prove research misconduct or to get journals to take action even when proven. I know of papers that are still up despite clear-cut research fraud like falsified methods or authorship theft which the journals have been informed of. Nothing about this study so far suggests there was actual misconduct. Crap biased research with poor methodology and dumb conclusions is not a crime. Going down this route against Walitt will make him look good and us smeared as paranoid catastrophising hysterics, the usual smears.

 

[Sean]

but $8 million is peanuts in the context of medical research

It is a huge sum in the context of ME research.

I think it's better to cut our losses (yet again)

Kinda running out of losses to cut.

 

[Hutan]

With luck the patients will have a better understanding going in and either not volunteer or continue to engage while forewarned and "knowing the score".

I think this might be an area where we do have some control. What if we required researchers to declare 'the score'? What if patient organisations developed a charter for all ME/CFS (and ME/CFS-like LC) researchers or research studies? There could be a commitment to

• a criteria including PEM if the disease is labelled ME/CFS;
• there could be an undertaking to not interpret or report results or make comments about the ME/CFS community through a deficit thinking lens

deficit thinking[1] holds [people] from historically oppressed populations responsible for the challenges and inequalities that they face

and not to involve researchers with a clear history of applying deficit thinking to the patient communities they have worked with;​

• there could be a commitment to use ME/CFS as the name for the disease,
• there could be a commitment to have meaningful patient involvement in the research design, management and write up, proportionate to the size and funding of the study;
• there could be a commitment to having lines of communication with the ME/CFS community during and immediately after the study;
• no collection of psychological data such as perfectionist scores or childhood trauma unless it is directly and clearly relevant to the question being studied ....

I don't know, the content would take some thinking about.

But, then, the patient organisations could use that charter with the research they fund, and the research they promote. They could ask NIH to adopt it for the research it funds. They could tell the ME/CFS community - 'don't engage with researchers who don't ascribe to the Charter for Ethical ME/CFS Research'. They could ask good researchers to mention compliance with the charter in their papers, alongside compliance with the Helsinki Declaration rules.

It wouldn't solve all the problems, but it could start to take some control of what research is done about us. We do have power, and that is our funding of research and our participation in research.

I'll make a thread to discuss the idea.

 

[JemPD]

Yep. Lay members of the public have no idea how difficult it is to prove research misconduct or to get journals to take action even when proven. I know of papers that are still up despite clear-cut research fraud like falsified methods or authorship theft which the journals have been informed of. Nothing about this study so far suggests there was actual misconduct. Crap biased research with poor methodology and dumb conclusions is not a crime. Going down this route against Walitt will make him look good and us smeared as paranoid catastrophising hysterics, the usual smears.

i couldnt agree more.
I sincerely hope nobody accuses them of that, it would be shooting ourselves in the foot i think. Until we have a LOT more evidence

I think this might be an area where we do have some control. What if we required researchers to declare 'the score'? What if patient organisations developed a charter for all ME/CFS (and ME/CFS-like LC) researchers or research studies? There could be a commitment to

• a criteria including PEM if the disease is labelled ME/CFS;
• there could be an undertaking to not interpret or report results through a deficit thinking lens

and not to involve researchers with a clear history of applying deficit thinking to the patient communities they have worked with;​

• there could be a commitment to use ME/CFS as the name for the disease,
• there could be a commitment to have meaningful patient involvement in the research design, management and write up, proportionate to the size and funding of the study;
• there could be a commitment to having lines of communication with the ME/CFS community during and immediately after the study;
• no collection of psychological data such as perfectionist scores or childhood trauma unless it is directly and clearly relevant to the question being studied ....

I don't know, the content would take some thinking about.

But, then, the patient organisations could use that charter with the research they fund, and the research they promote. They could ask NIH to adopt it for the research it funds. They could tell the ME/CFS community - 'don't engage with researchers who don't ascribe to the Charter for Ethical ME/CFS Research'. They could ask good researchers to mention compliance with the charter in their papers, alongside compliance with the Helsinki Convention rules.

It wouldn't solve all the problems, but it could start to take some control of what research is done about us. We do have power, and that is our funding of research and our participation in research.

I'll make a thread to discuss the idea.

Wow, thats an amazing idea Hutan!!!

 

[Art Vandelay]

I don't think this blog post from Hillary Johnson has been posted on the forum before? It seems relevant here:

Can A Leopard Change its Spots? ME and the NIH
In 2016, just as the NIH was gearing up for its first ME study in decades, Hillary Johnson talked to pop historian and ME-denier, Canadian Edward Shorter.

The last time NIH tried to conduct an ME study was thirty-five years ago, more than a generation. Then, Straus performed a psychological assessment of twenty-one ME patients. These patients had enrolled in an Acylovir trial under Straus’ supervision. In a remarkably devious fashion Straus turned a drug trial into something entirely different. Ultimately, he claimed ME patients were plagued with histories of mental illness before acquiring ME.

Straus’ report appeared in an obscure psychiatric journal in 1989, but the NIH public relations office sent a press release touting the study’s conclusion to 500 press outlets. NIH, in other words, armed with what it considered adequate proof, raised its bullhorn to claim ME was psychiatric. When I asked the public relations person with responsibility for ME why the agency felt compelled to send a press release about a study of twenty-one people to 500 press organizations, she told me: “Well—We know there’s a lot of interest in (ME). It’s the number one inquiry from the public that we get at NIH.”

NIH’s Brian Walitt, who was coordinating patient selection, was in charge of inviting speakers to help familiarize NIH researchers with ME. Walitt hailed from the NIH’s National Institute of Nursing Research at the time. Soon thereafter, in 2016, he became director of the “interoceptive disorders unit” of the National Institute for Neurological Disorders and Stroke (NINDS). An online Cambridge Dictionary describes interoception as “the feeling of knowing what is happening in your body, for example if you are hungry, thirsty, warm, cold, etc.”

A problem with Walitt’s learning sessions was that at least one of the lecturers wasn’t a doctor or scientist, he was little more than an angry, if influential, theorist some readers may remember from the previous century: Edward Shorter.

 

[Hutan]

Wow, thats an amazing idea Hutan!!!

It's an idea that surfaced in a S4ME committee discussion regarding an incident where a researcher funded by patient donations pulled out the usual tropes of hysteria and catastrophising.

Thread to discuss it here:
Making a 'Charter for Ethical ME/CFS Research'