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

[Jonathan Edwards]

What's the difference?

The point is the there is no need to suggest that the patient perceives something that isn't there. It is there and is perceived. But it may not be at the level it feels to be. Our perceptions of our bodies make it seem as if we fell pain in the toe, but we know that the pain is generated in the brain.

The interception idea may not be entirely on the wrong track but Walitt and Nath have got completely confused about it's implications. If the perception of fatigue is due to some regulatory failure in the nervous system then it will still be a perfectly valid perception of fatigue. We might assume that a sensation of fatigue means lack of energy supply to muscles but it could be due to failure of the higher control of energy usage. And that failure of control might be due to some lymphocytes continually misbehaving in the spleen.

My original comment was designed to distinguish the symptom of fatigue from the phenomenon of fatiguability, or actual failure of muscle contraction. That may also occur in ME but it is not 'fatigue' in the sense meant in the diagnostic criteria for ME/CFS.

 

[Arvo]

It sounds as if the study wouldn't have gone ahead without Walitt's taking over its running,

I think that might be too much to conclude, but it indicates that Nath was relying heavily on Walitt and was grateful that he covered Naths shortcomings as PI. It might be considered as a reason why Nath lashed out so abusively and absurdly in response to criticism to Walitt's involvement in April 2016.

i wonder what Nath was referring to when he said " I have no reason to be concerned about him". Had somebody raised a concern?

This was 2 November 2016.
There had been expressed concern about and unhappiness with Walitt's appointment to the study since the news broke in February 2016. In this case Nath reacted to a question by Eileen Holderman:

"And then my second question involves Dr. Walitt’s participation. I recently attended the IACFSME conference in Fort Lauderdale and I heard some experts saying that, you know, Dr. Walitt, they met with him. So could you just clarify his role in the study? Thanks very much."

(I'm not sure, but I believe this question might have been asked because if I remember correctly then at some point earlier, in response to upset about Walitt's involvement, the impression was given that Walitt would have little influence on the actual content of the study, like he was just involved as you say, administratively not scientifically, while he was now found to have been meeting with experts also present at the IACFSME meeting.)

The timing is noteworthy. Naths praise of Walitt and the claim that he had no reason to be concerned about him (because he himself had a good working relationship with him, very off point) fell the day before the news broke that Walitt, the SIG's moderator under responsibility of Nath, had invited Shorter to adress scientists a week later.

At the time Koroshetz tried to paper over this heinous action with misrepresentation, normalisation and fallacies.
He wrote a filler-rich letter to the ME/CFS community which pretended that this was just a normal scientific opininon exchange, implying that to invite someone notorious for viciously denying the illness studied and smearing its patients was "essential to moving any field forward". (He basically used the same old tactic of accusing criticism of what should not be tolerated as closemindedness.) This letter also misrepresented the issue:

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:

The issue was not that Shorter was part of the ME/CFS Special Interest Group, it was that he was invited by the Special Interest Group, managed by Nath and Walitt, to give a talk on ME/CFS to its members (and even beyond?). It also doesn't matter to the issue to give an incomplete list of speakers who have given talks on invitation of the ME/CFS SIG in the past.

NIH Intramural Scientific Interest Groups (SIGs), formerly known as Special Interest Groups apparently, are assemblies of scientists with common research interests around a certain topic, and both NIH and non-NIH scientists can join them. They seem to be of an informal nature and are clearly intended to keep scientists up to snuff regarding the central topic, so I can imagine they are fun and useful to join. Like mentioned above, Nath and Walitt manage a ME/CFS one. They invited Shorter to give a talk for their Scientific (then: Special) Interest Group in November and somewhere before 2 November this got announced on the Events page of the NIH Intramural Research Program. So far, apart from the speaker, nothing weird. But when righfully criticized Koroshetz goes in damage control mode, which tells me that he knows full well that this was problematic. He did not stop the talk though.

Version 27 October 2016: Clinical Trials Survey System (archive.org)
Version 27 June 2017: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Scientific Interest Group | NIH Office of Intramural Research (archive.org)
Version today: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Scientific Interest Group | NIH Office of Intramural Research

Science also reported the incident, on 10 November:

Any goodwill won by Whittemore's appearance in Florida may have evaporated after anger erupted last week when ME/CFS patients learned NIH had invited Edward Shorter, a medical historian at the University of Toronto in Canada, to give a 9 November talk at the agency. Shorter last year called the IOM report affirming the biological basis of ME/CFS "valueless; junk science at its worst." He traces the disease to a 1970s "brew of toxic beliefs about being tired all the time."

Koroshetz sent Science an email where he tried to brush it off as both fine because the talk was not "official" and a communication mistake:

Walter Koroshetz, the director of NINDS, defended the talk, writing in a letter to ME/CFS patients that "inclusion in the scientific conversation is not an endorsement." In an email to Science, he wrote that Shorter's talk was not "an official ME/CFS lecture. [An] announcement went out to the contrary. That was recalled. End of story."

Of course it's not "end of story".

I keep being astonished by the way Koroshetz and Nath protect Walitt and deflect rightful criticism of his and their actions.

 

[FMMM1]

The interception idea may not be entirely on the wrong track but Walitt and Nath have got completely confused about it's implications. If the perception of fatigue is due to some regulatory failure in the nervous system then it will still be a perfectly valid perception of fatigue. We might assume that a sensation of fatigue means lack of energy supply to muscles but it could be due to failure of the higher control of energy usage. And that failure of control might be due to some lymphocytes continually misbehaving in the spleen.

I was slightly concerned that those with ME/CFS might end up, like a friend who suffers with back pain has, with a tap on the head and some words like - "-- nothing structural, you see there's an amplifier in the (brain) system which which measures pain & well, your amplifier is just set a bit high --- off you go then --- nothing we can do".

Whereas, as you set out, it might be a signal from somewhere in the body -- we don't know what the brain is responding too. I didn't watch all of the NIH Roadmap webinars but e.g. I recall metabolite coverage has been low in ME/CFS studies* (48.55 minutes from the start of video*) & need for "state of the art immunology" (50.23 minutes from the start of video*) - so there are opportunities to try to understand the disease. Other opportunities include Decode ME (GWAS - common variants) and whole genome sequence studies to look for rare variants.

*Sheng Li - Jackson Laboratories - YouTube video & link to transcript -

 

[rvallee]

Walter Koroshetz, the director of NINDS, defended the talk, writing in a letter to ME/CFS patients that "inclusion in the scientific conversation is not an endorsement." In an email to Science, he wrote that Shorter's talk was not "an official ME/CFS lecture. [An] announcement went out to the contrary. That was recalled. End of story."

Just as I'm sure that the NIH sponsoring an AIDS denial conference would not be viewed as endorsing AIDS denial. Sure, Walter.

 

[Amw66]

I think that might be too much to conclude, but it indicates that Nath was relying heavily on Walitt and was grateful that he covered Naths shortcomings as PI. It might be considered as a reason why Nath lashed out so abusively and absurdly in response to criticism to Walitt's involvement in April 2016.


This was 2 November 2016.
There had been expressed concern about and unhappiness with Walitt's appointment to the study since the news broke in February 2016. In this case Nath reacted to a question by Eileen Holderman:
(I'm not sure, but I believe this question might have been asked because if I remember correctly then at some point earlier, in response to upset about Walitt's involvement, the impression was given that Walitt would have little influence on the actual content of the study, like he was just involved as you say, administratively not scientifically, while he was now found to have been meeting with experts also present at the IACFSME meeting.)

The timing is noteworthy. Naths praise of Walitt and the claim that he had no reason to be concerned about him (because he himself had a good working relationship with him, very off point) fell the day before the news broke that Walitt, the SIG's moderator under responsibility of Nath, had invited Shorter to adress scientists a week later.

At the time Koroshetz tried to paper over this heinous action with misrepresentation, normalisation and fallacies.
He wrote a filler-rich letter to the ME/CFS community which pretended that this was just a normal scientific opininon exchange, implying that to invite someone notorious for viciously denying the illness studied and smearing its patients was "essential to moving any field forward". (He basically used the same old tactic of accusing criticism of what should not be tolerated as closemindedness.) This letter also misrepresented the issue:

The issue was not that Shorter was part of the ME/CFS Special Interest Group, it was that he was invited by the Special Interest Group, managed by Nath and Walitt, to give a talk on ME/CFS to its members (and even beyond?). It also doesn't matter to the issue to give an incomplete list of speakers who have given talks on invitation of the ME/CFS SIG in the past.

NIH Intramural Scientific Interest Groups (SIGs), formerly known as Special Interest Groups apparently, are assemblies of scientists with common research interests around a certain topic, and both NIH and non-NIH scientists can join them. They seem to be of an informal nature and are clearly intended to keep scientists up to snuff regarding the central topic, so I can imagine they are fun and useful to join. Like mentioned above, Nath and Walitt manage a ME/CFS one. They invited Shorter to give a talk for their Scientific (then: Special) Interest Group in November and somewhere before 2 November this got announced on the Events page of the NIH Intramural Research Program. So far, apart from the speaker, nothing weird. But when righfully criticized Koroshetz goes in damage control mode, which tells me that he knows full well that this was problematic. He did not stop the talk though.

Version 27 October 2016: Clinical Trials Survey System (archive.org)
Version 27 June 2017: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Scientific Interest Group | NIH Office of Intramural Research (archive.org)
Version today: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) Scientific Interest Group | NIH Office of Intramural Research

Science also reported the incident, on 10 November:


Koroshetz sent Science an email where he tried to brush it off as both fine because the talk was not "official" and a communication mistake:


Of course it's not "end of story".

I keep being astonished by the way Koroshetz and Nath protect Walitt and deflect rightful criticism of his and their actions.

This has all the hallmarks of another great ship that has sailed to a predetermined destination .

 

[Arvo]

Post 1/2

O my...

Related to this:

That [Walitt is] not honestly trying "to understand exactly what the biology of post-exertional malaise is" like he promised (PEM got left out of the “deep phenotyping” paper -the trans-NIH ME/CFS Working Group tells you that you have to look it up in a Q&A, and it got e.g sidetracked to a paper with a NCCIH lead author that questions patient’s trustworthiness on reporting their own PEM experience. link post), but that he is instead still trying to "understand" the "biology" of his psychosomatic views, of ME/CFS as a somatoform disorder -

So, the lead author of the two PEM publications Walitt and Nath brought out, the ones in the study Q&A the Trans-NIH Working Group refers you to if you ask about it, Barbara Stussman?

She's the NCCIH's long-time questionnaire lady.

She has been working at the NCCIH as their survey/questionnaire expert since 2010.
At NCCIH, her activities "include providing advice to NCCIH staff and investigators on qualitative aspects of clinical trial design, planning, and implementation"- which makes me assume that 1), she knows quite a lot of the NCCIH staff, and 2) she has been involved in the NCCIH's division of intramural research (DIR) where Walitt worked as a director of clinical pain research and later as acting clinical director of the whole intramural research branch.

Her main speciality and focus has been and still is surveying the use and recommendation of alternative/complimentary practises like yoga and meditation. (Her publications are important for the NCCIH's goal of integrating those practises with medicine.) Some examples:

• Use of Complementary Health Approaches for Pain by U.S. Adults Increased From 2002 to 2022 | NCCIH (nih.gov)
• Microsoft Word - September 2019 Council meeting summary - Final.docx (nih.gov)
• U.S. Physician Recommendations to Their Patients About the Use of Complementary Health Approaches | The Journal of Alternative and Complementary Medicine (liebertpub.com)
  
• Trends in the Use of Complementary Health Approaches Among Adults: United States, 2002–2012 - PMC (nih.gov)
  
• Reasons Office-Based Physicians in the United States Recommend Common Complementary Health Approaches to Patients: An Exploratory Study Using a National Survey | Journal of Integrative and Complementary Medicine (liebertpub.com)
  
• Development of the adult and child complementary medicine questionnaires fielded on the National Health Interview Survey - PubMed (nih.gov)
• Evidence-Based Evaluation of Complementary Health Approaches for Pain Management in the United States - PubMed (nih.gov)
  
• Out-Of-Pocket Expenditures on Complementary Health Approaches Associated With Painful Health Conditions in a Nationally Representative Adult Sample - PubMed (nih.gov)
  
• Use of Complementary Health Approaches Overall and for Pain Management by US Adults - PubMed (nih.gov)
  
• Health behaviors and risk factors in those who use complementary and alternative medicine - PubMed (nih.gov)

Her bio reports that "For a study on fibromyalgia and pain responses, she conducted interviews with participants about their pain ratings.", which I reckon is her collaboration with Marta Ceko on the thoughts of fibromyalgia patients during pain experiments. (Marta Ceko is one of Walitt's co-authors on the 2016 paper on neuroimaging in "central sensitivity syndromes", which characterises ME/CFS as a "subjective perception of fatigue" whose patients "avoid physical activities" that can be studied with evoking fatigue while doing neuroimaging studies - with a reference to a King's college Chalder/White project.)


I find it quite something to have the NIH's lead author and study designer on the post-exertional malaise of ME/CFS be a NCCIH questionnaire specialist whose chief activity in the last two decades* has been surveying alternative/complimentary practice use in the USA.

(And Stussman's recent activities include "interviews with patients experiencing long COVID and Gulf War illness" as associate investigator at NINDS. It seems probable that this means she has been hired as part of Walitt's team.)

Edited to add:
links and
*Stussman has been focusing on complementary medicine surveys together with the NCCIH since before she started working for the NCCIH, see e.g:

• Health behaviors and risk factors in those who use complementary and alternative medicine - PMC (nih.gov)
• Role of self-concept in answering survey questions on complementary and alternative medicine: challenges to and strategies for improving data quality - PubMed (nih.gov)
• Costs of complementary and alternative medicine (CAM) and frequency of visits to CAM practitioners: United States, 2007 - PubMed (nih.gov)

Continues in post 2/2 below

 

[Arvo]

Post 2/2:

(Edited to add: eek, it got long!
TLDR: the PEM of ME/CFS so far got sidetracked to a "how it feels" questionnaire study, designed by Stussman. Stussman and Walitt also developed "an interview tool for assessing post-exertional malaise. This tool will be used in an NIH study of post-infectious ME/CFS". Everything still leads to the notion of Walitt studying the perception of fatigue, and if you looks around in these PEM questionnaire publications you keep tripping over NCCIH staff.)
Edited to organize in spoiler portions:

Spoiler: Part 1, PEM in the NIH intramural study

(Some of this is probably also discussed elsewhere, but I want to organize it here as well. Also, I have a migraine drilling around my eye today, so forgive any missing links or unfluid language.)

Walitt promised that the NIH ME/CFS intramural study team would work hard "to understand exactly what the biology of post-exertional malaise is". But so far he looked at the biology of perceived fatigue. And left PEM out of the paper "deep phenotyping" ME/CFS, while publishing two questionnaire study papers on PEM on the side, which were designed by a NCCIH questionnaire staffer without seemingly any experience in ME but with a longtime career in surveying the use of complementary approaches instead.

When S4ME's Robert1973 wrote to Dr Bertagnolli and Dr Koroshetz expressing his concerns about the NIH study, he commented on the study neglecting studying PEM. The reply he got from the NINDS Office of Neuroscience Communications and Engagement on behalf of the Trans-NIH ME/CFS Working Group on that account was:

You noted that the study .... appears to have neglected studying post-exertional malaise (PEM). PEM was a criterion for participation in the study. The Q&A link mentioned above provides information on PEM-related findings.

This Q&A says PEM was investigated by questionnaire around the CPET, and that researchers collected data on mitochondrial function and bioenergetics. It then says "Although the PEM-related findings were not discussed in the current paper in detail, some have been published", referring to the two Stussman et al publications based on the questionnaires. (It also says: "Further analysis of biological samples collected at each time period is planned.")

So, again, so far Stussman's questionnaire publications have been the only ones on PEM coming out of the NIH intramural study on ME/CFS.

Spoiler: Part 2 - focus groups

Staci Stevens and Mark Van Ness were invited by the ME/CFS Special Interest Group (moderated by Walitt and headed by Nath) to give a talk on cardiopulmonary exercise testing in ME/CFS in September 2016*. (I just talked about the ME/CFS SIG here, it also invited Shorter for a talk). Out of this conversation Walitt extended an invitation to the Workwell Foundation to help recruit patients for creating focus groups on post-exertional malaise. In October 2016 MEAction, under the header "Tell the NIH about your experience with PEM", placed an appeal to patients to participate in a focus group on PEM to create a questionnaire out of it for the intramural study:

Spoiler: Full text appeal MEAction to participate in Stussman's focus group

"Dr. Mark VanNess and Staci Stevens recently visited the National Institutes of Health (NIH) to present their findings on cardiopulmonary exercise testing (CPET) and the importance of the symptom of post-exertional malaise to the NIH ME/CFS Special Interest Group.

Out of this conversation, Dr. Brian Walitt, lead investigator of the ME/CFS Intramural Study, extended an invitation to Workwell Foundation to help recruit patients for to create focus groups on post-exertional malaise. This information will be used to help researchers craft surveys that measure the condition in individual patients qualitatively, and to compare these survey results with objective measurements. The NIH has to know the right questions to ask patients in order to gather the right kind of information.

It is vital that we ensure that the NIH can describe PEM in a way even new patients will recognize. The survey that is created to characterize PEM now may be in use last long past the execution of this study, so it is vital that we communicate clearly and effectively. Please participate today!

Unfortunately, the NIH is recruiting US citizens only for these focus groups. However, if you are not a US citizen and would like to describe your experience of PEM, or an aspect that you feel is often left out of PEM descriptions online or in research, a US representative who is part of a focus group will be happy to carry your concerns forward. Note that the NIH is asking for qualitative descriptions of your experience rather than helpful research on quantitative measurements associated with PEM, like cytokine measurements or alterations in microbiota.

If you are willing to share your experience with post-exertional malaise, please contact Ms. Barbara Stussman at: stussmanbj@mail.nih.gov or call (301) 496-1788. More information is available in the Focus Group Recruitment letter.

In the recruitment letter of October 2016, Barbara Stussman, on behalf of the ME/CFS investigative team at NIH, invites ME/CFS patient to participate in a focus group. Questions will be asked, and

"The information collected as part of this focus group will be used to develop an interview tool for assessing post-exertional malaise. This tool will be used in an NIH study of post-infectious ME/CFS."

In January 2019, MEAction placed another call for a Stussman focus group, this time on experiences with PEM and cardiopulmonary testing. Stussman & team were particularly looking for young, non-white males to participate.

Spoiler: Part 2 *footnote

*Staci Stevens also mentions this talk in an email with a call for the focus group she sent to Cort Johnson at Health Rising and likely others. What I find noteworthy is that in the email she talks about a 2 day CPET (most of you know this already, but I wasn't sure if she and Van Ness had discussed that at their SIG talk in 2016 already, now that seems certain).

This is pure speculation, but due to the context I have a pet theory that a reason for the 1 day CPET might be that Walitt's not chiefly interested in looking at recovery capacity; I'd guess for him it might have mostly been a way to evoke "fatigue" which can then be "investigated" as a perception by questionnaire and compared to other measurements. He wants to treat ME/CFS like an aversive behaviour.
(Re. bioenergetic measurements, my first thought was that according to Koroshetz the brain decides how much energy & effort to spend and the paper says that the physical disability is the end result of decreased brain activity - might be nothing/stupid, but something to keep an eye on.)

Spoiler: Part 3, The PEM papers in the study Q&A

Out of these focus groups, the first Stussman paper Characterization of Post-exertional Malaise in Patients With Myalgic Encephalomyelitis/Chronic Fatigue Syndrome - PubMed (nih.gov) was written (Published September 2020).

In the "acknowledgements" section, it says:

We would like to thank Staci Stevens and Mark Van Ness for sharing their experiences with cardiopulmonary exercise testing and aiding us in finding appropriate focus group participants. We would also like to thank Christine Wishnoff for her assistance with focus groups, Bryan Ewsichek for his assistance with graphics, and Richard Nahin for comments on a previous draft. Finally, we would like to thank the entire NIH ME/CFS Study Group.

Christine Wishnoff works at the NCCIH. Bryan Esichek is the NCCIH graphic designer since 2014. (Among the things he designed were the crucial figures 1 and 3 for the Chen et al interoception redefinition paper which Koroshetz showed at his talk at the Blueprint interoception ininitative meeting of 2023.) Richard Nahin is Stussman's long-time collaborator on all their complementary medicine surveys since at least 2007.

In February 2024, the second Stussman paper, the "exploratory study" Mixed methods system for the assessment of post-exertional malaise in myalgic encephalomyelitis/chronic fatigue syndrome: an exploratory study - PubMed (nih.gov) was published. I commented here that at first glance, because of this team's context, I do not like how it focuses on PEM "perception" and nudges the reader towards the impression that a patient's account on the severity of their symptoms is not to be trusted. The VAS focuses on "how you are feeling".

The acknowledgements say:

"We would like to thank Drs. Mark Hallett, Leorey Saligan and Termeh Feinberg for helpful comments on a previous draft. We would also like to thank the entire NIH ME/CFS Study Group."

Mark Hallett is also an author in the deep phenotyping study and he has played a big part in establishing "functional movement disorder"/FND. (Maybe he is the reason patients diagnosed with "functional movement disorder" were originally a control group for the ME/CFS intramural study, removed after protest?) Leorey Saligan, Walitt's longtime partner in psychosomatic fibromyalgia studies who has a focus on what he calls "biobehavioural mechanisms of fatigue", and who is working under NCCIH deputy director Shurtleff at the NIH pain center, has been discussed earlier in this thread, e.g. here and here. Termeh Feinberg is NCCIH and among her chief activities is a focus on chronic pain and complementary approaches to chronic pain.

I keep giving the intramural study a chance to redeem itself, but every time I pull at a thread I arrive at NCCIH involvement and how much it looks like Walitt got to shape the study around fatigue perception.

 

[Lou B Lou]

@Arvo wrote:

"This is pure speculation, but due to the context I have a pet theory that a reason for the 1 day CPET might be that Walitt's not chiefly interested in looking at recovery capacity; I'd guess for him it might have mostly been a way to evoke "fatigue" which can then be "investigated" as a perception by questionnaire and compared to other measurements. He wants to treat ME/CFS like an aversive behaviour.
(Re. bioenergetic measurements, my first thought was that according to Koroshetz the brain decides how much energy & effort to spend and the paper says that the physical disability is the end result of decreased brain activity - might be nothing/stupid, but something to keep an eye on.)"



And this, @Arvo wrote:

"Walitt promised that the NIH ME/CFS intramural study team would work hard "to understand exactly what the biology of post-exertional malaise is". But so far he looked at the biology of perceived fatigue. And left PEM out of the paper "deep phenotyping" ME/CFS, while publishing two questionnaire study papers on PEM on the side, which were designed by a NCCIH questionnaire staffer without seemingly any experience in ME but with a longtime career in surveying the use of complementary approaches instead.


Thanks for that @Arvo. I do think you may well be/are/ right.

 

[Dakota15]

Sharing this reply today. I asked Walitt if he could clarify his 'mismatch quote' in the NIH press release.

"You asked Dr. Walitt to clarify what is meant by a mismatch between what a person thinks he or she can achieve and what the person’s body performs. We attached an article that Dr. Walitt asked us to share with you about left and right temporal-parietal junctions as a “match/mismatch” sensor: https://pubmed.ncbi.nlm.nih.gov/35901654/. The diagram on page 80 (per the page numbering in the article) may be particularly useful. As you may know, searching PubMed athttps://pubmed.ncbi.nlm.nih.gov/ may help you locate similar articles."

- Office of Neuroscience Communications and Engagement
National Institute of Neurological Disorders and Stroke on behalf of the Trans-NIH ME/CFS

(they also sent an attachment but is too large to share here, but will attach the referenced page 80)

 

[Arvo]

Sharing this reply today. I asked Walitt if he could clarify his 'mismatch quote' in the NIH press release.

"You asked Dr. Walitt to clarify what is meant by a mismatch between what a person thinks he or she can achieve and what the person’s body performs. We attached an article that Dr. Walitt asked us to share with you about left and right temporal-parietal junctions as a “match/mismatch” sensor: https://pubmed.ncbi.nlm.nih.gov/35901654/. The diagram on page 80 (per the page numbering in the article) may be particularly useful. As you may know, searching PubMed athttps://pubmed.ncbi.nlm.nih.gov/ may help you locate similar articles."

- Office of Neuroscience Communications and Engagement
National Institute of Neurological Disorders and Stroke on behalf of the Trans-NIH ME/CFS

(they also sent an attachment but is too large to share here, but will attach the referenced page 80)

Thank you Dakota15. It is the reference in the paper, so nothing new, but this seems like something @Janna Moen PhD might find interesting, as Walitt emphasises the article again as substantiation and it comes with the message that the diagram may be "particularly useful".

Edited to add: Doricchi also wrote a book chapter on this, I understand this is a very new hypothesis (2022)

 

[Solstice]

Sharing this reply today. I asked Walitt if he could clarify his 'mismatch quote' in the NIH press release.

"You asked Dr. Walitt to clarify what is meant by a mismatch between what a person thinks he or she can achieve and what the person’s body performs. We attached an article that Dr. Walitt asked us to share with you about left and right temporal-parietal junctions as a “match/mismatch” sensor: https://pubmed.ncbi.nlm.nih.gov/35901654/. The diagram on page 80 (per the page numbering in the article) may be particularly useful. As you may know, searching PubMed athttps://pubmed.ncbi.nlm.nih.gov/ may help you locate similar articles."

- Office of Neuroscience Communications and Engagement
National Institute of Neurological Disorders and Stroke on behalf of the Trans-NIH ME/CFS

(they also sent an attachment but is too large to share here, but will attach the referenced page 80)

That isn't even a polite way of telling you to get lost :') .

 

[Arvo]

Just as I'm sure that the NIH sponsoring an AIDS denial conference would not be viewed as endorsing AIDS denial. Sure, Walter.

To me it appears like a very hamfisted way to make a Walitt-caused potential PR disaster go away. (A scenario where Walitt felt that he was getting so much room to have his way that he could invite Shorter and have it accepted is not unthinkable - and that is in the end what happened as well.)

The NIH team was making hoopla on their study, and had already gotten a lot of criticism from the ME community for appointing Walitt and Saligan and for their study protocol; from part 2 of my post above it is clear that these Special Interest Group meetings, although informal/unofficial, were potentially of influence on the study activities of the intramural research team, they created an exchange point, and "Team Tired" could of course not be seen as "officially" taking in Shorter's hate speech now that it got out.

Though I have no other source for it, Cort Johnson believed there were going to be 12 talks. The NINDS created the ME/CFS SIG in May 2016, and there have been talks in June, July, August and September, but the talks listed on the page are incomplete, and apart from Shorter we've never heard of another talk afaik.

Here's another contemporary report on Shorter's invitation, this time by Cort Johnson: NIH Stumbles: Asks ME/CFS Denier to Speak on Chronic Fatigue Syndrome | Health Rising's Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia Forums

The replies include these interesting snippets of information: Ron Davis immediately took action on the news, contacting the NIH and saying he would advocate for a congressional investigation, which may also have been a reason for Koroshetz' attempts to make it seem no big deal and "unofficial". Within the NIH ME/CFS specialists recommended to disinvite Shorter. And again it looks like Vicky Whittemore wanted to do better but couldn't get past the Intramural study's leadership. (The situation seems almost reflected in the "Deep phenotyping" paper: there's some good work there, but it gets overrun by Walitt's influence, protected and supported by Nath and Koroshetz.)

The OMF posted:

OMF's Scientific Advisory Board Director, Dr. Ron Davis personally took swift action today calling on NIH to recant their invitation to Dr. Edward Shorter to speak before the ME/CFS Special Interest Group. Here is Dr. Davis' text after talking with Vicky Whittemore, PhD, Program Director @ NIH, about Shorter's potential presentation to NIH.

"I talked to Vicky today. She is talking to Dr. Koroshetz in an hour. I said they have to dis-invite Shorter. I said if they don't, I will advocate for a congressional investigation as to why they invited him. She is totally against his talking but can't change it. She hopes someone above her will."

We will keep you posted as we further advocate for immediate action.

A message screenshot from the one who talked to Ron Davis says that he talked to Vicky Whittemore at 10 am pacific time.

(What this reminds me strongly of is Whittemore's response to opposition to the appointment of Walitt: In February 2016, after an exchange with SolveME about his appointment, they said: “Dr. Whittemore was very receptive to our strong opposition to Dr. Walitt’s participation in the study, but said that she has no role in the study design or staffing; that rests with Dr. Nath.")

In the replies Cort Johnson says:

"I wouldn't be surprised, to tell you the truth if Koroshetz and Vicky Whittemore had no idea this was coming down the pike. The Intramural program seems to be doing their thing and Vicky is doing hers. She would never condone this."

(In the main post he also says: "There's no way Vicky Whittemore wanted this to happen, and I can't imagine that Koroshetz, for all his talk of inclusivity, did. Shorter's approach is antithetical to the program he's putting together." I think he underestimates Koroshetz' commitment here, but I trust his observation about Whittemore.)

Solve ME were on the case as well. Johnson comments:

The SMCI has acted quickly. I think they probably have more pull with the feds than any other organization. (This is not to say that they have a lot but they are problem at least listened to.) They reported:

"A professor of psychiatry and history at the University of Toronto, Shorter is an outspoken skeptic about the biological nature of ME/CFS. He has referred to the disease as both a “psychodrama” and a “psychic epidemic” and called the findings of the Institute of Medicine’s report on ME/CFS last year “junk science.”

Shorter’s stance and use of degrading language toward patients (such as labeling them “moaning and groaning victims”) has caused his opinion pieces to be removed from public forums.

SMCI President Carol Head has reached out directly to NIH officials to strenuously object and seek removal of this speaker who presents a theory that has no scientific validity and is deeply damaging to ME/CFS patients."

but that

"As of the afternoon of November 4, Shorter is still scheduled to speak—despite the recommendation from ME/CFS specialists at the NIH that he be disinvited. The NIH has not yet returned our calls to clarify the situation. SMCI will continue to monitor the situation closely and expresses the following: [no follow-up text]

It appears that the call to disinvite Shorter is being backed by some "ME/CFS specialists at the NIH".

(Sidenote, he also said: "Mark Van Ness said their exercise work got a good reception including from Brian Walitt.")

"Tina", who was part of the study's focus group (I gather the one on PEM discussed here), commented:

"I am seriously thinking of dropping out of this study. After what our community has been through it is hard enough to accept a seat at the table for psychiatry at all, but in the spirit of moving forward we all make concessions. But a man who is this vile and dismissive simply can not be entertained. If this is what they think needs to be considered I do not trust them to analyze the data in an impartial way. If they want a serious study they will boot him quickly."

Johnson was trying to get his head around Koroshetz' refusal to scrap the Shorter talk. (It is indeed inexcusable.) Among other things, he says:

"I don't think this is about intellectual freedom or hearing all sides - I think our concerns easily trump that argument. I think it's a cost/benefit issue; at this point, Koroshetz feels it's better to PO the ME/CFS community than to PO others in the NIH. That actually makes sense - we are going to get some goods news Koroshetz said, which should eclipse the Shorter issue - so while this leaves a bad taste in one's mouth this should blow over."

(I include it because it's an interesting consideration. I personally suspect that Koroshetz just didn't want to admit they fucked up by trying to make it seem normal and not part of the study, that he was protecting the study's image as a Serious Biomedical High-quality study, and Nath and Walitt. But the notion that he tried to sail through it while not upsetting those within the intramural study who wanted to give Shorter a platform is an interesting one to consider.)

(All bolding mine.)

 

[Laurie P]

NIH Attitudes Affect Policy: A Story In Two Parts
Posted on June 27, 2017 by Jennie Spotila

https://occupyme.net/2017/06/27/nih-attitudes-affect-policy-a-story-in-two-parts/

Part One: You Have Disappointed Me

In November 2016, Carol Head and Dr. Zaher Nahle of the Solve ME/CFS Initiative secured a brief meeting with NIH Director Dr. Francis Collins. They reported that it was a positive discussion, but emails I obtained through a Freedom of Information Act request reveal NIH’s intention to manipulate the encounter.

This meeting with Dr. Collins occurred in the immediate aftermath of Dr. Edward Shorter’s controversial talk at NIH. The ME/CFS community had expressed outrage after learning that NIH had invited Dr. Shorter, because he espouses the disproven psychosocial theory of ME and demeaning views of people with the disease. The talk proceeded over our objections, and all sides were still smarting from the controversy when SMCI met with Dr. Collins.

The emails show that Dr. Koroshetz, Director of the NINDS and Chair of the Trans-NIH ME/CFS Working Group, was angry about the controversy. In responding to Dr. Collins’s request for updated information on the RFA and intramural study, Dr. Koroshetz wrote:

I was pretty upset with Solve ME/CFS for making such a huge fuss over the seminar at NIH by the historian from Canada. If you can impress upon Carol and Zaher the importance of Solve ME/CFS joining with the research effort and not inciting mistrust at every twist and turn that would be helpful. Mainly I am worried that researchers will shy away from studying ME/CFS if they are subject to one attack after another due to the strong biases that are out there. Funding could be for naught.

This email blew my mind because it is loaded with . . . I was going to say inaccuracies, but that is too mild a term. First of all, SMCI did not “incite mistrust.” NIH did that all by themselves when they extended the invitation to Dr. Shorter and then offered only a vague not-quite-an-apology. Second, Koroshetz is perpetuating the myth that no one will want to study ME if they are “attacked.” I guess that’s why no one studies autism or HIV/AIDS, because those activists are pretty rowdy. And the “strong biases that are out there are best described as PACE-Gate and the psychosocial theory of ME. Perhaps Dr. Koroshetz and others should be more concerned about the biases and attacks directed at people with ME, instead of biases held by people with ME.

Dr. Collins did not immediately buy Koroshetz’s take on the controversy. He responded:

Walter and Vicki, did Solve ME/CFS specifically stir up trouble for Dr. Shorter? I got a bunch of e-mails about this from ME/CFS advocates, but didn’t see Solve ME/CFS fingerprints on there. I certainly agree that this kind of behavior is counterproductive to the collaborative effort we are trying to create.

When other disease groups protest disproven, antiquated and misogynist views that interfere with scientific research, how is that perceived? Are they “stirring up trouble”? Are they being “counterproductive”? As I said last November, it is unthinkable that NIH would offer a platform to someone who spoke about people with HIV/AIDS the way Shorter talks about people with ME. Yet NIH seems to think that we are the problem, and if no one wants to research our disease then we just have ourselves to blame.

In response to Dr. Collins’s question, Dr. Vicky Whittemore forwarded him (without comment) SMCI’s November 7th email asking advocates to denounce the Shorter invitation. That email actually asked advocates to contact members of Congress, by the way, not NIH. Advocates had started emailing NIH on November 3rd. But Dr. Collins replies:

Got it. I will express our disappointment to the Solve ME/CFS leadership.

This email discussion between Collins and Koroshetz repeats multiple familiar talking points: ME activists should not have made a “huge fuss,” and now scientists will “shy away” from studying this disease because of “one attack after another due to the strong biases that are out there.” And therefore: “Funding could be for naught.” I know I am not the only person who is sick of this stereotype, but let’s review:

1. It is appropriate to protest NIH’s invitation of a speaker whose views are not grounded in science, and who demeaned and denigrated both people with ME and the National Academy of Medicine.
2. Researchers are not subject to “one attack after another.” This is a myth that has been grossly exaggerated and disproven on prior occasions.
3. The “strong biases” that have been “counterproductive” are the outdated, disproven, and belittling views held by Dr. Shorter and other adherents to the psychosocial theory of ME/CFS.
4. Research funding is not “for naught” unless that funding is wasted on previously disproven hypotheses.
5. People with ME are not responsible for the lack of interest in ME research. The blame lies with CDC for focusing on the symptom of chronic fatigue, instead of the disease of ME, and contributing to the false but dominant psychosocial narrative. The blame lies with NIH for refusing to take the steps necessary to attract and fund research for many years.

A circle with a sad face and the caption “Blame token; it’s your fault.”

I’ll speak up for the people in the back: THIS IS NOT OUR FAULT. But according to Drs. Koroshetz and Collins, it is. Thus, Dr. Collins promised to express NIH’s disappointment to SMCI.

 

[Solstice]

Thanks @Arvo. Understanding what happened is crucial so please don't blame yourself for anything in any way.

I found this in your post #109 interesting, located in spoiler. From Nath



It sounds as if the study wouldn't have gone ahead without Walitt's taking over its running, and also that much of that work was administrative, not scientific. His pleasant demeanour counted for a lot- I think ( from memory) that Jeanette Burmeister also mentioned this in one of her blogs. i wonder what Nath was referring to when he said " I have no reason to be concerned about him". Had somebody raised a concern? There were plenty of red flags.

But as @ukxmrv says, it was convenient to have somebody ready and willing to take this work on.

Would've been preferable. The same with other initiatives like it that start on the wrong footing like ME Lines. It's incredibly frustrating to have people like Iwasaki, Wüst and lots of others move the field forward to then have people like Walitt and others trying to move it backwards again. I don't think we would've lost anything if this study hadn't come to be. The people in the research centers they awarded a grant could've used the millions put into this study way better.

 

[Arvo]

Thank you for that addition @Laurie P!

Very informative and illustrative. (ed. to add: it's also shocking that Koroshetz framed criticism at his team for inviting a particulalry nasty hate speaker and ME denier as "making a fuss" and "inciting mistrust at every twist and turn" which upsets him - it fits the impression I get about him, but shocking nonetheless. If it had been "making a fuss" he wouldn't have had to make such hamfisted PR moves around it to make it go away.)

Additionally I find it interesting that Koroshetz in November says:

"Mainly I am worried that researchers will shy away from studying ME/CFS if they are subject to one attack after another due to the strong biases that are out there."

while in April Nath claimed that that was already happening, when he made his abusive threat that if ME advocates didn't curb their criticism of his actions or who he hired, ME would not get studied:

"...a lot of people now come to me and say that, “You know what, I don’t want you mentioning my name,” and then the other people said, “I don’t want to have anything to do with it, I’ve got enough things that I’m doing”. And so that’s become a bit of a challenge for me especially when there are very prominent scientists that I’ve approached that never will say no, but then they become reluctant to answer emails and so on, so you’re going to kind of start getting a feeling that people feel that, do they really want their name out there on these kind of things?"

(EtA: )Also note how Koroshetz frames criticism as "one attack after another due to the strong biases that are out there" - hyperbolically acting like being critical of "Team Tired's actions stems from bias

Part 2 of the article ("Bad Advocate, No Cookie"), regarding the meagre funding, is important as well.

What I'd like to lift from that is that Koroshetz, when addressing congress, said:

I think the goal was that this was not the solution but the seed to grow the research that could then come in through regular mechanisms or else to kind of add on centers so we can kind of move the field across.

And the blog says he said:

Dr. Koroshetz said the effort was to “bring new people in, start research going, and hopefully then populate out further to allow folks to submit really high-quality grants to NIH”.

The study's NIH page looks underwhelming: the study is done, publications are Walitt et al (with a subnote to the study Q&A) and the two Stussman papers.

In the Q&A it says about effort preference:

The full biological explanation for the observed difference in effort preference in PI-ME/CFS is not known. In the study, effort preference was related to differences in the brain, including decrease in catechol neurotransmitters and decreased activation of the right temporo-parietal junction, which plays a role in evaluating and initiating physical action. Further analysis of the relation between effort preference and these biological observations is planned.

It's a disturbing thought, but with Koroshetz having established the interoceptive disorders unit and his support and leadership of the NIH Blueprint interoception initiative, what if he sees these as the next step after the seed, and a center to move the field across?

 

[Trish]

It feels like they deliberately take anti-science actions like inviting Shorter and giving Walitt so much power because they know it will upset people with ME/CFS, and lead to protests.

Then they can spread the word to other researchers, don't research this, you'll get attacked by patients.

It feels like deliberate policy enable them to keep on keeping ME/CFS research funding low, and blame patients.

 

[Laurie P]

The Death Threat Myth Exposed
Posted on April 6, 2021 by Jennie Spotila

https://occupyme.net/2021/04/06/the-death-threat-myth-exposed/

The death threat story has taken on a life of its own. One crank call to one reviewer in February 2011 became “threats to reviewers” that NIH still believes is sufficient justification to withhold the rosters of ME/CFS SEP meetings. NIH continued to use that justification for two years after I won my FOIA appeal. The story was repeated within NIH over the course of ten years, including to Dr. Whittemore. She then went on to repeat the story to the ME/CFS community as part of the reason why NIH once again decided to withhold the membership rosters of the ME/CFS review panels.

The repetition of this story by a leading member of the Trans-NIH ME/CFS Working Group does real harm. Dr. Whittemore’s comments lent gravitas to the stereotype that people with ME are mentally ill and dangerous, and makes it sound like there is still a threat to be concerned about. Dr. Whittemore presented the story as established fact–despite the fact that this single phone call occurred ten years ago; despite the fact that there is no evidence of “extremists,” “militants,” or any violent intentions among ME advocates; and despite the fact that she herself has no specifics about what occurred and when.

 

[Trish]

The Death Threat Myth Exposed

Thread:
Blog: "The Death Threat Myth Exposed", Jennie Spotila

 

[ukxmrv]

It's more of 'the bastards don't want to get better' theme

https://implementationscience.biomedcentral.com/articles/10.1186/1748-5908-6-132

 

[rvallee]

For sure, one pattern that hasn't changed: it's worse in context, and the more context you add the worse it looks.

I also find it hard not to see this as deliberate provocation, and if it isn't, the fact that it looks exactly like deliberate provocation doesn't make it any better, it's not possible to accidently blunder into being this wrong and offensive. "Oh, we didn't mean anything by putting a prominent AIDS denier in charge of AIDS research, people are getting angry over nothing here".

One of the things I wrote to the NIH director about this disaster of a study is that when there is a breakthrough, wherever it comes from, the NIH will have been almost entirely irrelevant to the process, unless of course they accidentally stumble onto something. I'm sure they will take a lot of credit anyway, but they have decided to be completely impotent and inept. There really seems to be a willingness to find nothing simply to avoid being embarrassed for having refused to take it seriously. Including wasting over a billion dollars in LC funding.

At least there is Long Covid now. Wow would things be bleak otherwise, and still nothing has changed from it anyway. This can truly be called a holistic disaster, every bit and every part and every step is just blundering to a degree impossible without a deep willingness to produce nothing useful. That's basically what the word usually means in health care anyway: disaster.