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

Hutan said:
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
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.
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Fantastic idea!
 
Hutan said:
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
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.
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It sorta reminds me of how well prepared the LC people were when it came to getting government funding in the Netherlands. They even went a bit further, they had reached out to researchers and put in joint applications I think. So that it would reflect very poorly on ZonMw if they would go into a different direction. Of course they had the luxury of having learned what happened to Dutch ME-patients with the MELines-farce.

I'm just wondering if it would be feasible to start collaborating with scientists in such a fashion where it comes to funding for ME/CFS in different parts of the world.
 
To be clear about yesterday, I never meant to argue that we had a clear case of research misconduct. I am outraged that lying to and decieving patients to such an extreme degree is not considered misconduct.

If you can be detached and cool about this, great. But bps theories destroyed my life. I probably could have maintained a level of calm detachment before I was gaslit into this bed.

I do agree that pushing for much more funding is the most important thing. But if the Wesselys and Wallitts of this world keep sabotaging our attempts then we can't ignore them forever.

Plus, I would like to see some consequences for the people who destroy lives and slander us endlessly with seeming impunity. I don't know perhaps that makes me naive.

So I'm taking another break, and I'll be discussing new positive findings and similar things when I return because this stuff is too triggering for me to be objective about it.

P.S I was a postgradute student when I got sick, for the record.
 
Hutan said:
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
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.
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This idea is fantastic, and I really hope you lot can make it happen!
 
Jeannette Burmeister's Twitter thread:

Take, e.g., this 2013 Walitt opinion paper (links in last tweet, published in Nature Review,) a vile propaganda piece regarding fibromyalgia & myalgic encephalomyelitis: Culture, science and the changing nature of fibromyalgia. 2/

My focus here is mainly on Walitt’s views, but his choices of odious science-free quotes & citations—which include Wessely and Shorter—obviously constitute an endorsement. Conversely, Walitt disses work that “led to the expansion and acceptance of” FM. 3/

Walitt is a disciple of FM specialist turned FM denier Frederick Wolfe, co-author of this hit piece, which suggests an early decision by Walitt to build a career by targeting certain pt groups. If you aren't familiar with Wolfe, I encourage looking him up. Example attached. 4/

Walitt equates FM w/ neurasthenia, labels it psych, & blames social forces—pt orgs, naming/defining by Amer. College of Rheumatology, pharma, disability systems, legal/academic communities, MDs, govts, scientific orgs, the Web, ICD codes (see #10)—for its “real disease” status.5/

Fibromyalgia is closely allied with and often indistinguishable from neurasthenia, a disorder of the late 19th and early 20th centuries that lost favour when it was perceived as being a psychological illness. Fibromyalgia's status as a 'real disease', rather than a psychocultural illness, is buttressed by social forces that include support from official criteria, patient and professional organizations, pharmaceutical companies, disability access, and the legal and academic communities.
Wolfe, F. & Walitt, B. Nat. Rev. Rheumatol. 9,751-755 (2013):
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Walitt “believes” that FM is psychocultural, i.e., “shaped primarily by psychological factors and societal influences” as well as a somatic Sx disorder that is associated/comorbid w/ psych illness. Why do hard scientific work when proselytizing is a surefire career-builder? 6/

According to Walitt, FM pts are not to be trusted b/c they have too many/too severe/too unusual Sx while appearing too healthy and have many psychological disorders (incl. major psychopathologies), psychosomatic Sx, & personality disorders resulting in MDs shunning them. 7/

Psychological factors
The bête noire of fibromyalgia is psycho-logical illness. There are several reasons for the lay and medical suspicion of the symptom complaints of those with fibro-myalgia. For example, there are too many symptoms, and the symptoms appear too severe and too unusual, and the patients too healthy compared with patients with other pain disorders. Furthermore, such patients have an increased lifetime prevalence of many psychological disorders, including those in axes I and Il of the Diagnostic and Statistical Manual of Mental Disorders.32 In addition, for almost any symptom charac.teristic or comorbid illness, patients with fibromyalgia have scores that are more abnormal than those of control groups. Only patients with end-stage renal failure have a lower quality of life.33 Patients with fibromyalgia have been identified as those that some physicians do not want to see, and the medical and lay literature contains many descriptions of the antagonism between physicians and 'difficult' patients with this condition.3 Such difficult patients have been characterized by "psychosomatic symptoms, at least mild personality disorder, and Axis I (major) psychopathology, and most had more than one of these characteristics."H4
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Throughout, Walitt labels FM psychological, psychocultural, psychosomatic, psychogenic, a Somatic Sx Disorder, a social construct, etc. and claims that it’s related to psychopathologies & personality disorders, and that it’s a convenient/socially acceptable dx for psych pts. 8/

Walitt claims that FM equals the psych dx neurasthenia—i.e., "the vapors," "depression of spirit," "hypochondriac affections," "effort syndrome" (sounds eerily like IOM’s SEID, doesn’t it), etc. Neurasthenia was, of course, the predecessor of Holmes & Fukuda CFS. 9/

A person with neurasthere today would be likely to satisfy fibromyalgia criteria and be given that diagnosis. The very strong resemblance of fibromyalgia to neurasthenia is a key observation. Time brings clarity to confusing illnesses of the past, and we now recognize that hysteria, neurasthenia, and railway spine45 were almost always psychogenic disorders.
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Recall also Wessely’s framing of ME as neurasthenia in the slick & insidious 19-page abomination “Old wine in new bottles: neurasthenia and M.E.” quoted and cited by Walitt. To Walitt, there is no difference btw FM and what he calls “CFS.” His take on FM applies 100% to ME. 10/

Walitt laments the failure of FM as a psych concept & strongly disapproves of what he calls the “powerful cultural forces” he claims prop up the “‘real disease’ message.” He basically frames FM as a con job by pts enabled by the Web & a long list of other malevolent actors.

Why fibromyalgia succeeded
The primary requirement for the 'success of a psychocultural illness is that it must not be perceived as being psychological. Disorders that are primarily psychogenic can attract societal attention and dis-approbation, particularly when they ask for social advantage or disability pensions. The rise of fibromyalgia and the disputes it has engendered reflect the age-old battle over psychogenicity. All other things being equal, fibromyalgia should have failed. It began as a simple local pain disorder, but evolved over time into one that had multiple somatic symptoms and features that many considered psychosomatic. As these fea-tures were considered to be responsible for the decline of neurasthenia, one might have expected them to also result in the demise offibromyalgia. But they did not. The era was different, and powerful cultural forces stood behind fibromyalgia and fought against the idea of a psychogenic illness.
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The likes of Walitt make you wonder, don’t they have better, more fulfilling, things to do w/ their professional lives than making it their mission to malign & gaslight pts? Pts need a protective order against Walitt et al. Instead NIH is platforming the Walitt Witch Trials. 12/

“Powerful societal forces have been marshalled”?! What?! Walitt’s teachings are unhinged to say nothing of the unethicality of a physician's/researcher's rooting for the “failing” of undeserving diseases, making a career out of disparaging pts, and spreading his madness. 13/

I strongly encourage reading the entire paper here: https://nature.com/articles/nrrheum.2013.96 or on the Wayback Machine here: https://web.archive.org/web/20160223031446/https://www.arthritis-research.org/files/Wolfe%20(2012)%20Culture,%20science%20and%20the%20changing%20nature%20of%20fibromyalgia%20-%20NRR%20submission%20version.pdf More Walitt info to come. 14/14
 
The NIH need to be grilled hard over why they chose this guy. It is impossible for them to argue they did not know his pre-existing views.

Remember he is also leading the equivalent studies on LC and GWI.

Really is very difficult to see the choice as anything other than a deliberate and cruel hit job on patients.
 
I need to catch up with this thread, but I can't atm.

In the last days I have collected some more stuff (I didn't plan to, but I kept falling down rabbit holes.)
I'm not able to put it all here (this is already taking a lot), but there are a couple of things that I think are very important to report.

Most importantly that Walitt has a background of calling ME/CFS an interoceptive disorder (by which he means a disorder of subjective perception) and of managing to get a unit for interoceptive disorders founded at the institute he works for, which is supposed to include ME/CFS, based on his views of fibromyalgia. (Bolding for noticability)
At the same time he also used fMRI to look at brain activity “as a surrogate measure for fibromyalgia symptoms” because fibro pain is "difficult to measure"; Walitt has been treating ME/CFS as an interoceptive disorder since at least 2010. (See details in PDF attachment.)

(To me it looks like he basically went: the pain sensation in fibro is difficult to measure, ME is about a "fatigue" sensation that is difficult to measure -while ignoring decades of observing metabolic issues and mitochondrial dysfunction etc.- , both have no "there" there, ergo, they must both be about a perception of something that is not there.)

It's also noteworthy that Walitt seems to have started at the NCCIH in 2013 not just as acting Clinical Director of NCCIH, but also as Director of Clinical Pain Research at the NCCIH (Fibromyalgia: Finding a new narrative | MDedge Family Medicine) before he moved on to his other positions of chief of their Clinical Investigation branch and (since 2019) Acting Clinical Director for their Intramural Research Program. It's also interesting to further track the NCCIH's shift to making reasearch into "interoception" a top research priority for them. One place is in in the archive of the NHICC minutes. Archive of NACCIH Minutes | NCCIH (nih.gov) I haven't done that really, but some interesting tidbits are:
  • a workshop called, “The Science of Interoception and its Roles in Nervous System Disorders,” in April 2019 on the NIH campus. NCCIH is the workshop’s planning lead." Council Feb 2019 Minutes (nih.gov)
(Websites: The Science of Interoception and Its Roles in Nervous System Disorders | NCCIH (nih.gov) and The Science of Interoception and Its Roles in Nervous System Disorders (scgcorp.com) It must be noted that Walitt was not a speaker at this workshop. In fact, so far I have not come across a direct link between Walitt and the NCCIH's interoception activities, which is in itself noteworthy given his deep involvement with NCCIH and his own focus on it.​
 

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Sean said:
The NIH need to be grilled hard over why they chose this guy. It is impossible for them to argue they did not know his pre-existing views.

Remember he is also leading the equivalent studies on LC and GWI.

Really is very difficult to see the choice as anything other than a deliberate and cruel hit job on patients.
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Indeed. Nath has appointed and protected him. The question is why and if that initiative lay with him or if he was led there by someone else in the team.
At the time, SolveME reported: “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."

I was absolutely appaled by Nath's response to the concern on Walitt's appointment at an April 2016 webinar. (The Fallacy is strong with this one.)

It's like you make a big fanfare because you're going to write a report on women in the workplace, and then in a key position you appoint a guy as an "expert" who is known for his sexist and misogynist stereotyping of women - and in reponse to concern you say that progress just won't happen if people with such views were not invited in. (And your new appointee then happily invites Andrew Tate to give a talk to your team, which your colleague then frames as an "exchange of information and widely divergent ....opinions", like their bigotry is just another opinion that's "essential to moving any field forward". - Ugh, "We don't need to be openminded Brennan, you're holding a turd.")

Nath literally pulled out his past in AIDS research, claiming that if he had excluded people who were known for fanatically spreading misinformation on and stigmatization of AIDS and gay people from AIDS research, there wouldn't have been any advances. (So....he would have welcomed Casper Schmidt as lead associate investigator and lead author of his AIDS study? Somehow I have some trouble believing that.)

And then he warns patients to not be critical of his appointees, because otherwise researchers won't study their disease. Which I thought was downright abusive.
 
V.R.T. said:
This idea is fantastic, and I really hope you lot can make it happen!
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I like it.

I slightly think of the Bechdel test too where it looks in films at whether they actually contain a female character that fulfils certain criteria rather than being a flunky.

I wonder whether there is some inverted type of ‘score’ that could be given where papers get points for using unevidenced tropes, each inference made that isn’t supported and major points for when a claim in the abstract (tripled if it is paywalled) isn’t even consistent with the facts in results ie if a lie.

and call it something like the ‘troping-propaganda manifesto test’ (open to catchier suggestions for names )
 
Well this is all very disturbing. For sure Nath betrayed us. He made a choice equivalent to putting a coal executive in charge of a climate policy initiative. The example of an extreme misogynist in a women's initiative also works. Walitt's beliefs are pure bigotry, putting him in this position is violence against us, there is no other way to put this. So no wonder the program failed, it was sabotaged by the people who ran it.

Walitt's views are frankly delusional to the point of being demented, but I don't know what's worse here: 1) just how demented and absurdly out-of-touch-with-reality they are, 2) that he was put in a position to impose those beliefs and sabotage this program, 3) that 90%+ of MDs agree with his views, or that 4) there is not a single bit of evidence to support any of it, it's pure bigotry supported by logical fallacies.

This is a lot like leading people to get lost in deserts, putting up signs that mislead people into getting lost, in response to an epidemic of people getting lost in deserts. It's both active and passive infliction of harm, but at this point it's so well documented that it can't be excused on ignorance.

It's also obviously absurd that AIDS research and care would not have progressed if the efforts had not included AIDS deniers. It obviously did exclude those, what could they possibly have contributed anyway? In the end people do the job they are tasked to do according to how they are held accountable by their bosses. I'm sure that there were people who were mostly hostile to the idea of AIDS being a real thing caused by a virus, but they worked in an environment in which they were tasked to do something, one thing that was part of a larger whole, and they were held accountable if they deviated from it. That's the main difference here, for all the cheap lies and pretense, outside of those with a personal motivation to solve ME/CFS, hardly anyone given funding or a salary to work on it is actually working on solving it.

Instead we get overt sabotage like this, and Rosmalen getting millions in funds that explicitly excluded people like her and the work that she does. At least there's some possibility of pushing through this resistance with Long Covid, I don't know if I would have the strength to hold on otherwise, seeing just how hopeless the medical profession is making it for us. And because this is an ideology, a belief system, they actually think that they're doing what's best, and that means that the more they do it, the worst it is for us, the better it is. This late into science and technological progress, this is likely the worst aberration that experts have ever engaged in. It's like a space age civilization still doing ritual sacrifice, it's so absurd that the only natural reaction is to ignore and deny it entirely.
 
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ukxmrv said:
In Wallit's new Kingdom of "Interoception disorders" where do the fMRI tests come from?

He is not a brain expert or neuroscientist.

Do the fMRI tests used in the NIH paper come from the psychobabble school and who else uses them and why?
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I don't know if you have seen this (see PDF attachment on this post), but just before opening his first unit for "interoceptive disorders" in 2010 (in which he included ME/CFS), Walitt got approval for a study using fMRI to look at the brain activity of fibromyalgia patients. (In the context of him viewing fibro as a dysfunction of subjective perception - I believe the study was still running when he opened the unit.)

Walitt et al.'s 2024 deep phenotyping ME/CFS paper also refers to a Knoop & Van der Meer paper* (Fatigue is associated with altered monitoring and preparation of physical effort in patients with chronic fatigue syndrome, 2018 Van der Schaaf et al, ref 35), who used fMRI to make basically the same claim as "effort preference", saying that "CFS patients showed an effort-dependent behavioural bias towards less effort investment,.." and that their fMRI findings linked "fatigue symptoms to alterations in behavioural choices on effort investment,...". (Only they linked their findings to another brain area, the dorsolateral prefrontal cortex, linking it to "beliefs")

The idea is that they can pin their theories of mistaken perception playing a key part in ME/CFS on specific brain areas, thereby biologically "proving" their bps theory, and providing an area for treatment (CBT for the dutch, prob. what Walitt's interoception unit and/or NCCIH want to offer -CBT or mindfulness-like stuff? - for the Americans)
2024 Walitt et al said:
*"Additionally the results suggest the impact of effort preference, operationalized by the decision to choose a harder task when decision-making is unsupervised and reward values are held constant, on performance. 32–74% of the variance in time to grip failure for the PI-ME/ CFS participants correlated with effort preference, which was not seen in HVs. This was accompanied by reduced brain activation in the right temporal-parietal area in PI-ME/CFS participants. Interviews with PI-ME/CFS participants revealed that sustained effort led to post-exertional malaise. [ref 34, Stussman et al, their own paper incl Walitt & Nath]
Conscious and unconscious behavioral alterations to pace and avoid discomfort may underlie the differential performance observed [ref 35]"
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Another puzzle piece:

A 2021 article by Chen et al, redefining the term "interoception". The article is rooted in the NCCIH.
Lead author Chen, chief of NCCIH's Basic and Mechanistic Research in Complementary and Integrative Health Branch, is leading the NIH Blueprint Interoception Working Group. The last author (often preserved for a supervisor) is NCCIH director Helen Langevin. (Walitt's boss there.). The second author is Dana Schloesser, from the NIH Office of Behavioral and Social Sciences Research, who was co-planner of the NIH workshop on "the science of interoception and its roles in nervous system disorders" (the NCCIH was its planning lead, link to info & booklet here), and who is, among other things, involved in "the Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Working Group". Cui is from the National Institute on Alcohol Abuse and Alcoholism (NIAAA) and also is involved in the the NIH Blueprint for Neuroscience Research and "She has been the team lead for a Blueprint team to develop and implement the Blueprint Science Initiative on understanding the dynamic neuroimmune interactions in the transition from normal CNS function to disorders."

Edited to add link: The Emerging Science of Interoception: Sensing, Integrating, Interpreting, and Regulating Signals within the Self - PubMed (nih.gov)
Given these considerations, we propose a revised description of interoception that may more accurately reflect, we would argue, the bidirectional signal processing between the brain and the internal organs to represent the internal state of an organism. We recognize that this revised description significantly expands the traditional scope of interoception and may be different from the one used in much of the current literature. In this revised description, interoception includes the processes by which an organism senses, interprets, integrates, and regulates signals from within itself. Here, the action of “sensing” denotes communication from physiological systems outside of the central nervous system (CNS) to the CNS, through the commonly called ascending pathways, whereas the action of “regulating” refers to the communication from the brain to other physiological systems via descending pathways. The CNS, especially the brain, is primarily responsible for interpreting and integrating these signals into a representation of the internal world. One key difference between this revised definition and some of the more traditional definition of interoception is the inclusion of the descending body regulation component. The other key point is that the systems involved in processing signals about the internal environment include not only the peripheral nervous system and the CNS but also components of the vascular, endocrine, and immune systems. In the following sections, we describe key concepts related to interoceptive processes and illustrate aspects of the proposed expanded framework, which we hope will foster future venues for interoception research.
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A reminder that Walitt is deeply connected with the NCCIH. (If not replaced he is currently still acting clinical director of the NCCIH's Division of Intramural Research under M. Catherine Bushnell, and acting chief of their Clinical Investigations Branch while Bushnell leads the Pain and Integrative Neuroscience Branch, which Walitt's former position was Director of Clinical Pain Research at the NCCIH.)

And NINDS director Walter Koroshetz is collaborating with NCCIH director Langevin on their interoception focus under the "Blueprint for Neuroscience Research" project. And in 2021 he allowed Walitt to establish his second unit for inetroceptive disorders as part of Clinical Neurosciences Program in NINDS’s Division of Intramural Research.


Edited 23-3 for strike-through, see posts further on, eg. posts #66 and #68. Walitt was the DIR director's right hand man at NCCIH's Division of Intramural Research, from 2013/2015 until early 2016, and again in a more formal position from 2019 until about late summer 2020. At NCCIH he had an interest in "interoceptive disorders" (like "chronic fatigue") and his view of ME/CFS as an interoceptive disorder has been ongoing since at least 2010.

It should be noted as well that Chen et al says: "The complex interplay between the ascending and descending pathways of the interoceptive system provides many potential routes and methods for targeted interventions in the case of interoceptive dysfunction and related disorders."
 
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Btw, based on sources in my previous posts it is clear how recent the current vogue of researching "interoception" is, and how new and unsubstantiated this whole new NIH interoception focus is as well.

I think it's interesting to add that Wikipedia did not have a page in interoception before 2017/2018, and its "interoception" page development aligns with this same recent trend.
Before it was a page about "Sense" (mainly sight, smell, etc.) which had a small subsection on "internal sense, also known as interoception". Between February 2017 and July 2018, the page about "sense" gets changed to a page dedicated solely to "interoception", including the psychosomatic take on it, and a claim it plays a role in "somatic symptom disorders"(aka somatoform disorders aka hysteria). From this new page:
During the 1980s, psychophysiologists began to examine cardiovascular interoception extensively, introducing several different tasks for studying heartbeat perception: heartbeat counting,[10] heartbeat tapping,[19] and heartbeat detection.[20][21] Psychiatrists were also beginning to look at the effects of pharmacological stimulation on panic disorder symptoms as well.[22] This led to a growing interest in interoception during this time period, including the development of theoretical models on the integration of interoceptive information within the body over time.[23]
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The twenty-first century has seen an exponential increase in publications on the topic of interoception, and a recognition of the multifaceted nature of this concept.[1] With a renewed interest in research, different ideas about interoception have emerged. One definition widens the concept to encompass “the skin and all that is underneath the skin” and the perception and function of bodily activity[3] to more fully understand psychosomatic processes.[9]
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Patients with somatic symptom disorders score lower on heartbeat detection tasks than healthy controls, suggesting that interoceptive accuracy is poor in psychosomatic disorders.[71]
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Sense - Wikipedia (archive.org)
Interoception - Wikipedia (archive.org)

I want to stress that I am not agains researching interoception in the classic sense - it's certainly an interesting topic. But I disprove of trying to hitch interoception to the bandwagon of the bps/psychosomatic movement, and the interests of people who want to push CBT, mindfullness and other complementary approaches as key interventions for serious and life-ruïning biomedical illness, with shoddy science and redefining the term so it fits their theories.
 
Dakota15 said:
Does anyone think we should try this route? Just was wondering.

'Research Misconduct: Research misconduct is defined as fabrication, falsification and plagiarism, and does not include honest error or differences of opinion."

https://grants.nih.gov/help/report-a-concern#research

'Who to Contact:'
'Requirements for Making a Finding of Research Misconduct'
  • There be a significant departure from accepted practices of the relevant research community;
  • The misconduct be committed intentionally, knowingly, or recklessly; and
  • The allegation be proven by a preponderance of the evidence.'
https://grants.nih.gov/policy/research_integrity/requirements.htm
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To discuss the idea of a research misconduct complaint about the study, go to the main study thread.
Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome, 2024, Walitt et al
If there's enough interest to take it forward, a thread in advocacy could be made.
 
"In this revised description, interoception includes the processes by which an organism senses, interprets, integrates, and regulates signals from within itself."

Well, that isn't interception, matey. Regulation involves output. ~-ception is input. So you are likely to get yourselves confused - and you do:


"The CNS, especially the brain, is primarily responsible for interpreting and integrating these signals into a representation of the internal world."

No it isn't. There is no 'representation of the internal world'. There are vast numbers of different forms of representation in the brain all at once. None of them represents an 'inner world' as far as we know.

This shows so clearly the basic problem - that psychologists and neurological hangers on don't have any grasp of the structure of thought. It isn't the brain for a start.
 
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