The Psychosomatic Researcher in the NIH's Big Chronic Fatigue Syndrome (ME/CFS) Study

[IrisRV]

Where did this idea come from that Walitt is a psychologist? He's not a psychologist - he's a rheumatologist. (and yes he's done quite a bit of "hard, objective science").

Good question. Even I can't track down where I got that idea. The best that I can come up with (and it's very weak, I know), is that he tosses out psychological language and hypotheses willy-nilly and talks like SW. Poor evidence for identifying his profession. I apologize for leaping to that conclusion, which I have to assume I did since I can find no other place I could have seen that misinformation.

I will go back and edit (strikeout) my incorrect comments.

Brian Walitt is definitely qualified scientifically for the position. On other grounds... well, we'll have to see when better information comes in

I don't have to like the way the guy talks about currently unexplained chronic illnesses, however. Words like psychosomatic and somatoform have common meanings that most people, including doctors, understand. That is what they're going to hear when Walitt talks about psychosomatic and somatoform conditions.
psychosomatic

psychosomatic in Medicine
psychosomatic psy·cho·so·mat·ic (sī'kō-sō-māt'ĭk)
adj.

1. Of or relating to a disorder having physical symptoms but originatingfrom mental or emotional causes.
2. Relating to or concerned with the influence of the mind on the body,especially with respect to disease.

somatoform disorder

Medical Definition of somatoform disorder

• : any of a group of psychological disorders (as body dysmorphic disorder or hypochondriasis) marked by physical complaints for which no organic or physiological explanation is found and for which there is a strong likelihood that psychological factors are involved

Perhaps he's trying to be clever with some "Ah yes, but everything in the universe is psychosomatic. What is reality? What is truth?" sort of philosophical navel-gazing. Okay, maybe he doesn't mean what most other people mean when he uses the words psychosomatic or somatoform. If that's the case, then he is communicating very poorly for someone in the position of lead investigator and causing a great deal of confusion -- not just among patients, but among doctors, journalists, and pretty much everyone else he talks to about this.

Or maybe he means exactly what it sounds like he means -- that ME/CFS and FM are psychosomatic disorders (a group of psychological disorders). He can pretty it all up with sympathy and "feelings are caused by biological factors, so of course it's biological" hand-waving for us poor folks who just think we're sick, but it's still the same old pig's ear, with which a silk purse cannot be made.

So which is it? We could really use a clear, direct statement from the guy without all the flourishes, fancy-dancing, hand-waving, and other talking-around-the-question techniques for covering up what he's trying to say. If he has nothing to hide, then he doesn't need all those conversational flourishes, so let's dispense with them. If he's trying to avoid saying what he thinks we don't want to hear, then we need to know that. We will not accept deception anymore.

I'm willing to accept that he's not peddling just another variant of BPS if he will be clear on what he believes about ME/CFS. Is it based only in "feelings" without organic causes, or is it a serious illness with organic roots? And I'm not talking about "Well, feelings are based in biology, too" garbage. Is ME/CFS an abnormal biophysiological condition not caused by psychological factors, or not? Out with it, man. We need clarification.

 

[Cort]

My biggest problem with this guy is that, where medical tests are unable to replicate patients' experience of their illness (for instance, in cognitive testing), he assumes that the gap is entirely due to the patients' experience of their illness being unreal. And he is too willing to let that be the point on which his approach to the disease rests. For too many aspects of this disease, we have found twenty years later that patients were right all along about what was going on in their bodies, and that medicine just didn't have the knowhow or technology (or correct subtyping) to look in the right places for the culprit. For instance, patients do actually undergo a decrease in aerobic capacity on the second day of an exercise test, IF you bother to listen to the patients and test on the second day. With regards to cognitive testing, I believe that they'll find their assumptions of baseline cognitive ability are way off, and that they are testing a group of people who had above average cognitive skills before getting sick. We need researchers who question the status quo of medical research, not researchers who start with the assumption that the patient is an unreliable witness to their own illness.

I agree with you that they will probably find better tests of cognition that reflect better what's going on in ME/CFS and FM and chemobrain but I think you are misinterpreting the point on which his approach these diseases exists. His approach is to introduce physical stressor and using it to map out the biological mechanisms - the immune or whatever issues which are behind their illness.

Wouldn't you rather have a researcher who is a little off on his hypothesis but is following the right research approach than someone who seems to have a better hypothesis - say who believes the cognitive tests reflects the cognitive dismay found - but he thinks it's caused say, aluminum toxicity or something like that?

The first one - Walitt - could very well find the answer to this disease while the other could founder around forever. I believe that, after this study Walitt will probably have to rethink his hypothesis because the exercise studies will show metabolic abnormalities. That's fine! The approach is the key.

If the right approach is taken to ME/CFS the answers will come - and I think the right approach to ME/CFS is doing what Walitt, to my great surprise suggested - push the systems of FM/ME/CFS/Chemobrain patients hard and then see what happens.

Isn't that really the most important facet of all of this?

 

[Simon]

The main issue for me is how whether Walitt believes a pathogenic or "physiologic" process is going on or whatever he calls the process that's going on. I don't care WHAT he calls it - my priority is that he find it.

The main issue from my perspective is that using physioligc shows he doesn't think there's anything wrong, other than how the patient perceives things

Here's what he says in his interview that clarifies his position

but we can’t just make it go away; we can’t restore them to what they think they should be
[not what they should be, but what patients think they should be; you wouldn't get that in cancer]

–to realize that these atypical things are just a range of normal, that you’re not sick, bad, or weak, that you’re just dealing with the difficulties of just being a human.
[still bewildered by your take on that]

From a slide within the video
Illness [as opposed to disease]: when a person perceices atypical but normal human experience as a medical condition

No disease there, or even immune dysfunction (as opposed to perceiving an immune signal in the wrong way), just deluded patients.

So yes, Walit thinks there is an immune process going on, but he doesn't think there's an immune process going wrong.

With regard to the microglia Walitt does not "ignore the microglia"; his theory is based on cytokines in the brain altering brain functioning; as he states in the paper that de facto means microglia so while he only mentions them briefly microglial activation is clearly key part of his hypothesis

No they aren't. Just to remind you the microglia hypothesis proposed by Jarred Younger and others is long-term activation of microglia, leading to long-term cytokines, and is a pathogenic process. They never say that in the paper but they do clearly say they are looking at physioligc, not pathogenic processes.[/quote][/Quote]

 

[Cort]

Good question. Even I can't track down where I got that idea. The best that I can come up with (and it's very weak, I know), is that he tosses out psychological language and hypotheses willy-nilly and talks like SW. Poor evidence for identifying his profession. I apologize for leaping to that conclusion, which I have to assume I did since I can find no other place I could have seen that misinformation.

I will go back and edit (strikeout) my incorrect comments.

Brian Walitt is definitely qualified scientifically for the position. On other grounds... well, we'll have to see when better information comes in

I don't have to like the way the guy talks about currently unexplained chronic illnesses, however. Words like psychosomatic and somatoform have common meanings that most people, including doctors, understand. That is what they're going to hear when Walitt talks about psychosomatic and somatoform conditions.
psychosomatic
somatoform disorder
Perhaps he's trying to be clever with some "Ah yes, but everything in the universe is psychosomatic. What is reality? What is truth?" sort of philosophical navel-gazing. Okay, maybe he doesn't mean what most other people mean when he uses the words psychosomatic or somatoform. If that's the case, then he is communicating very poorly for someone in the position of lead investigator and causing a great deal of confusion -- not just among patients, but among doctors, journalists, and pretty much everyone else he talks to about this.

Or maybe he means exactly what it sounds like he means -- that ME/CFS and FM are psychosomatic disorders (a group of psychological disorders). He can pretty it all up with sympathy and "feelings are caused by biological factors, so of course it's biological" hand-waving for us poor folks who just think we're sick, but it's still the same old pig's ear, with which a silk purse cannot be made.

So which is it? We could really use a clear, direct statement from the guy without all the flourishes, fancy-dancing, hand-waving, and other talking-around-the-question techniques for covering up what he's trying to say. If he has nothing to hide, then he doesn't need all those conversational flourishes, so let's dispense with them. If he's trying to avoid saying what he thinks we don't want to hear, then we need to know that. We will not accept deception anymore.

I'm willing to accept that he's not peddling just another variant of BPS if he will be clear on what he believes about ME/CFS. Is it based only in "feelings" without organic causes, or is it a serious illness with organic roots? And I'm not talking about "Well, feelings are based in biology, too" garbage. Is ME/CFS an abnormal biophysiological condition not caused by psychological factors, or not? Out with it, man. We need clarification.

I agree that its kind of muddled, navel-gazing interview that neither did him or anyone else any good. Beside being kind of strange it's plain hard to understand.

In the Chemobrain paper Walitt - which really should be our emphasis since it reflects his scientific thought - not some off the cuff interview that doesn't focus on biology - clearly states that Walitt believes ME/CFS and FM are caused physical processes. Walitt is not some CBT practitioner disguised as a researcher. He's gone on record stating that CBT doesn't have that much of an impact on FM.

If you're wondering if he believes FM or ME/CFS are serious illnesses with organic roots for me the answer is clear. For one he's spent most of his career on FM. For two his goal is to discover the biological mechanisms behind it. Why? Because as he's stated the current therapies - and that includes drugs, CBT, psychology - what have you - cannot cure the disease.

I am not at all happy with his description of ME/CFS or FM as somatoform disorders. Take note that Walitt believes his approach will redefine what people think somatoform disorders are. After he has shown they have a physical basis they will no longer be believed to be psychological disorders.

"Do the biologic alterations that accompany the discrete, medically-induced physiologic stress of chemotherapy “trigger” long-term homeostatic change that is causally responsible for the somatoform experience of chemobrain? The current state of evidence is insufficient to answer this question; the answer would have important ramifications on the causality of all somatoform illness. The authors take the position that such a trigger exists. We hypothesize that acute shifts in cytokines related to chemotherapy administration lead to epigenetic alterations. These epigenetic changes persist after the resolution of the chemotherapy-induced immunologic changes and are primarily responsible for creating and maintaining changes in neuroplasticity that underlie the somatoform experience of chemobrain."

 

[Cort]

The main issue from my perspective is that using physiology shows he doesn't think there's anything wrong, other than how the patient perceives things

Here's what he says in his interview that clarifies his position

I think if you take his position a bit further it might make more sense. He believes that the "subjective experience" of the patient is the key. I imagine that 'subjective experience' includes the experience of pain, fatigue and other symptoms. Maybe I am taking this too far but for me I wonder if "perception" could be another term for the flu-like symptoms found in ME/CFS and FM.

I think that interview is so muddled that it's hard to understand what he's saying but looked at one way - again a Buddhist way - this statement "we can’t restore them to what they think they should be" could be applied to any disorder. It's not a medical suggestion it's more of "How do you deal with a disease which the medical profession can't make go away?".

Probably everyone with a chronic disease thinks at least at some point, that they should they shouldn't be that way - that things shouldn't have turned out that way. That's probably REALLY true in diseases like FM and ME/CFS where good treatment options are really limited. He could be construed as saying - FM is different - we don't have good treatment options yet. It's going to be harder to deal with than other disorders. That's why a doctor might go out of his way to make that point in FM as opposed to another disorder.

 

[IrisRV]

Wouldn't you rather have a researcher who is a little off on his hypothesis but is following the right research approach than someone who seems to have a better hypothesis - say who believes the cognitive tests reflects the cognitive dismay found - but he thinks it's caused say, aluminum toxicity or something like that?

What I'd rather have is a researcher without preconceived notions about the illness and who uses a proper research approach. I don't think it has to be one or the other.

The first one - Walitt - could very well find the answer to this disease while the other could founder around forever. I believe that, after this study Walitt will probably have to rethink his hypothesis because the exercise studies will show metabolic abnormalities. That's fine! The approach is the key.

Why do you assume the other researcher will founder around forever but Walitt won't? Why do you assume that Walitt can/will rethink his hypothesis and the other researcher won't? It seems to me that they are equivalent situations -- researchers with flawed hypotheses who may or may not be able to rethink those hypotheses in the face of new or existing data.

If I have to chose between two researchers with flawed hypotheses but proper research approaches, I'll take the one whose flawed hypothesis assumes physiological abnormalities. That has a sounder scientific basis. Psychosomatic and somatoform hypotheses have not been proven and have frequently been disproven (MS, ulcers, Parkinson's). It's not just about the experimental methodology. Interpretation is critical as well. I prefer interpretations based in solid science, not unproved (and disproved) psychosomatic and somatoform beliefs, however prettily dressed up in mind/body language.

If we are talking druthers here, I'd rather have:

1. Someone with genuine experience with enough patients to have seen the full range of symptoms. That is, they have a decent understanding of the subject they purport to be studying.
2. Someone without preconceived notions, or failing that, someone who may have ideas about the illness, but is not so committed to those ideas that they publicly present them as the reality of the illness. (IMO, public statements about what the disease is demonstrate a belief, not a hypothesis. A hypothesis is not a given.)
3. Someone with high-level research skills. That means the researcher understands that a hypothesis is a hypothesis, not a reality that needs to be proved. A good researcher uses techniques to minimize the impact of personal bias on the outcome of the research. Finally, a good researcher does not use personal beliefs or hypotheses to interpret the results.
4. Someone who trusts what the patients are saying about their symptoms and experiences with the illness. That is, I want someone who trusts the patient experience, not one who feels it necessary to reinterpret the patients' experiences from outside.
5. Someone whose hypotheses are based on the notion that the illness is not a psychological condition, as stated in the IOM report.
6. Someone whose hypotheses are based on the notion that there are abnormal physiological signs that just haven't been identified yet.
7. Someone who is well in tune with the notion that their hypotheses, whether physiologically or psychologically based, could be disproved with the proper research and has no problem making a new hypothesis based on the new information.

Walitt probably fits a number of those. If you're asking what I'd rather have, then the answer is I'd rather have someone who fits more of them.

I have a feeling, though, that it's not really an issue of what patients would rather have. It's more a question of who is available and is not too far off base in their ideas.

 

[Merida]

@Carol Bohne
This crazy dysregulation of hormone and symptom responses you describe seems part of the HuGE issue of dysautonomia.

I found it helpful to watch the 1 hour segment on You Tube - NIH Grand Rounds Avi Nath. This search will bring it up. It was just posted on Feb. 16, 2016. Chronic Fatigue Syndrome: Advancing research and Clinical Education.
Sorry I can not seem to post link on my i Pad. Drs. Lapp and Komaroff and others present.

 

[Cort]

What I'd rather have is a researcher without preconceived notions about the illness and who uses a proper research approach. I don't think it has to be one or the other.

Why do you assume the other researcher will founder around forever but Walitt won't? Why do you assume that Walitt can/will rethink his hypothesis and the other researcher won't? It seems to me that they are equivalent situations -- researchers with flawed hypotheses who may or may not be able to rethink those hypotheses in the face of new or existing data.

If I have to chose between two researchers with flawed hypotheses but proper research approaches, I'll take the one whose flawed hypothesis assumes physiological abnormalities. That has a sounder scientific basis. Psychosomatic and somatoform hypotheses have not been proven and have frequently been disproven (MS, ulcers, Parkinson's). It's not just about the experimental methodology. Interpretation is critical as well. I prefer interpretations based in solid science, not unproved (and disproved) psychosomatic and somatoform beliefs, however prettily dressed up in mind/body language.

If we are talking druthers here, I'd rather have:

1. Someone with genuine experience with enough patients to have seen the full range of symptoms. That is, they have a decent understanding of the subject they purport to be studying.
2. Someone without preconceived notions, or failing that, someone who may have ideas about the illness, but is not so committed to those ideas that they publicly present them as the reality of the illness. (IMO, public statements about what the disease is demonstrate a belief, not a hypothesis. A hypothesis is not a given.)
3. Someone with high-level research skills. That means the researcher understands that a hypothesis is a hypothesis, not a reality that needs to be proved. A good researcher uses techniques to minimize the impact of personal bias on the outcome of the research. Finally, a good researcher does not use personal beliefs or hypotheses to interpret the results.
4. Someone who trusts what the patients are saying about their symptoms and experiences with the illness. That is, I want someone who trusts the patient experience, not one who feels it necessary to reinterpret the patients' experiences from outside.
5. Someone whose hypotheses are based on the notion that the illness is not a psychological condition, as stated in the IOM report.
6. Someone whose hypotheses are based on the notion that there are abnormal physiological signs that just haven't been identified yet.
7. Someone who is well in tune with the notion that their hypotheses, whether physiologically or psychologically based, could be disproved with the proper research and has no problem making a new hypothesis based on the new information.

Walitt probably fits a number of those. If you're asking what I'd rather have, then the answer is I'd rather have someone who fits more of them.

I have a feeling, though, that it's not really an issue of what patients would rather have. It's more a question of who is available and is not too far off base in their ideas.

Exactly I imagine that it is certainly more of a question of who is available and who is willing to do it. The NIH does little research on FM or ME/CFS. I wouldn't be surprised if there's not another FM specialist in the intramural section of the entire NIH.

Walitt will probably not founder because he has the right approach or testing methodology for ME/CFS. I think that he can't help but get answers if he applies his approach and does enough testing. His secondary hypothesis may be wrong but his general hypothesis - that slamming patients with physical stressors will uncover what's going on - is I think correct. He may have to have the persistence and creativity to keep looking until he finds something, of course.

(I would note that he does predispose physiological abnormalities are present).

 

[Cort]

Here's the NIH's response to MEAction about Walitt

You know what I like in here? The "broader national approach".. I don't know what it means but I like it.

http://www.meaction.net/2016/02/23/nihs-initial-response-to-article-and-comments-on-walitt/

Dear Jen and Beth,

Thank you for sharing your thoughts and concerns. Dr. Koroshetz, as Chair of the Trans-NIH ME/CFS Working Group, and I are excited about the study on ME/CFS that will begin soon at the NIH Clinical Center. It is the first step of what the NIH hopes will be a broader national approach to better understand the biological basis of ME/CFS and the development of effective therapies.

In terms of trial leadership, Dr. Nath will serve as the Principal Investigator in charge of study design, as well as its execution, analysis and interpretation of the data. As the Lead Associate Investigator, Brain Walitt will assist Dr. Nath with the oversight of the day-to-day clinical operations of the protocol. Dr. Walitt will work with the CDC and the NIH ME/CFS executive committee to coordinate screening of potential participants for the study. He will ensure that participants are provided with clear details of the research study prior to enrollment as part of the NIH informed consent process and will coordinate participants’ care with the local medical providers. He will also help integrate the work of the team of experts who are collaborating in this complex undertaking and will provide clinical oversight for the study participants during their time at the NIH Clinical Center.

The NIH has unique resources to bring to bear on ME/CFS, especially with respect to neurology, immunology, radiology, nursing and rehabilitation science. We also have a dedicated, multidisciplinary team that is eager to address this challenge. We have utmost confidence in the team, which combines the expertise of multiple NIH Institutes including NINDS, the National Institute of Allergy and Infectious Diseases, National Institute of Nursing Research and National Heart, Lung, and Blood Institute. We sincerely believe that the combined resources and expertise of the NIH will shed light on a previously unsolved medical puzzle. With your help, we are ready to get started on the path that we hope will lead to improved diagnosis, effective treatments, and, ultimately, a cure for ME/CFS.

Best wishes,

Vicky

 

[IrisRV]

Walitt is not some CBT practitioner disguised as a researcher. He's gone on record stating that CBT doesn't have that much of an impact on FM.

I accept that. He doesn't believe CBT is the answer. Good news.

If you're wondering if he believes FM or ME/CFS are serious illnesses with organic roots for me the answer is clear. For one he's spent most of his career on FM.

And that proves what, exactly, about his belief in organic roots? Plenty of people have spent their careers treating FM patients and don't believe it's anything more than a somatoform illness.

I imagine that 'subjective experience' includes the experience of pain, fatigue and other symptoms. Maybe I am taking this too far but for me I wonder if "perception" could be another term for the flu-like symptoms found in ME/CFS and FM.

I sure wish we weren't stuck having to guess at what he means. If he used words and phrases in the way they are commonly used, we wouldn't be trying to interpret him based on our own pessimistic or optimistic viewpoints. We're back to navel-gazing again -- What is 'subjective experience'? What is 'perception'? What is 'mind'? What is 'somatoform'? Are they all based on our personal perceptions? Oh wait, what is 'perception'? We could go around in circles like this all day. It's fine if Walitt likes to ponder all this deep philosophical stuff about what words and concepts really mean. This is not the place for that. Can we just talk science in this scientific context and save the philosophical ramblings about the meaning of 'somatoform' for the cocktail party?

I think that interview is so muddled that it's hard to understand what he's saying but looked at one way - again a Buddhist way - this statement "we can’t restore them to what they think they should be" could be applied to any disorder.

1. Does he apply it to any disorder? Does he take the same approach to cancer or diabetes, neither of which are fully explained?
2. I'd rather he kept his philosophical/religious views out of this. It's science, not belief systems.
3. Why "what they think they should be" rather than "what they should be" or "what they used to be"? Why the emphasis on what the patients think rather than what is?

He could be construed as saying - FM is different - we don't have good treatment options yet. It's going to be harder to deal with than other disorders.

Again, why do we have to bend over backwards to find a way to interpret what comes out of his mouth in a positive way? He says what he says. He could be meaning any number of things.

I agree that he could mean things other than what he's actually saying. Everything could be just hunky-dory with this guy. It's just so hard to tell because not only is he not communicating clearly, he's completely confusing.

I hope you're right about the guy, Cort, because I don't know that our concerns about what he says matters to the NIH if they understand him and are comfortable that he is the right guy for the job.

 

[IrisRV]

(I would note that he does predispose physiological abnormalities are present).

Then what does this mean?

And in people with fibromyalgia, they clearly feel these ways and there’s probably an underlying biology to it, but the idea that it’s an abnormal biology is less clear.

I'm glad you're here to interpret the guy for us, because I really cannot understand him. Is there abnormal biology, or isn't there? In his mind, I mean. No, wait. I don't mean abnormal biology in his mind. Oh dear. Try again. Does he believe there is abnormal biology in currently unexplained illnesses, or not? I'm so tangled up trying to understand Walitt I can't think straight anymore.

As the Lead Associate Investigator, Brain Walitt will assist Dr. Nath with the oversight of the day-to-day clinical operations of the protocol. Dr. Walitt will work with the CDC and the NIH ME/CFS executive committee to coordinate screening of potential participants for the study. He will ensure that participants are provided with clear details of the research study prior to enrollment as part of the NIH informed consent process and will coordinate participants’ care with the local medical providers. He will also help integrate the work of the team of experts who are collaborating in this complex undertaking and will provide clinical oversight for the study participants during their time at the NIH Clinical Center.

Okay, this is not too bad. It sounds like he will not be involved with interpreting research, which is good imo. I'm not sure I'm happy about him screening potential participants since he knows diddly-squat about the illness. Would he know a real ME patient if she bit him on the butt? Of course, I have that concern about anyone on their team, not just Walitt. OTOH, if his screening responsibilities are strictly general medical screening, I don't see a problem.

Bottom line: We've got Walitt whether we think he's suitable or not. Frankly, I no longer have any idea. His communication is so unclear and full of double-speak and psycho/philosophical ramblings, that it's hard to know what he really means.

Looks like we watch and hope for the best. And scream bloody murder if it starts to go south.

 

[KME]

I am an ME/CFS patient and a clinician, and I’d prefer if Dr Brian Walitt were replaced as Lead Clinical Investigator of the proposed NIH study by a scientist who does not believe ME/CFS is somatoform.

Having reviewed a selection of Dr Walitt’s published papers from his NIH page https://nccih.nih.gov/research/intramural/laboratory-clinical-investigations-branch/staff/walittb, his approach seems completely out of step with the 2015 Institute of Medicine report and the NIH’s own 2014 Pathways to Prevention report (https://www.effectivehealthcare.ahrq.gov/ehc/products/586/2004/chronic-fatigue-report-150505.pdf, summary: https://prevention.nih.gov/docs/programs/mecfs/ODP-P2P-MECFS-FinalReport.pdf.

Why is the Lead Clinical Investigator someone whose stated interest is somatoform illnesses?

Why is the Lead Clinical Investigator of an NIH study into “Post-Infectious ME/CFS” someone who does not believe that infection has been scientifically validated as a trigger for ME/CFS? In Wang, Walitt et al’s 2015 chemo-brain paper available at http://www.ncbi.nlm.nih.gov/pmc/articles/PMC4750385/, Walitt and his co-authors state
“Both of these illnesses [fibromyalgia and chronic fatigue syndrome] have disputed causal triggers, such as trauma in fibromyalgia and infection in chronic fatigue syndrome, whose validity is also not answered by the scientific literature to date.”

Why is the Lead Clinical Investigator instead someone who resists the biomedical research into the possibly related condition of fibromyalgia?
The following quotes are from Wolfe & Walitt’s 2013 paper entitled “Culture, science, and the changing nature of fibromyalgia”, available at https://www.arthritis-research.org/... of fibromyalgia - NRR submission version.pdf Wessely, who will be familiar as a UK psychiatrist who espouses the somatoform theory of CFS, is cited a number of times by Wolfe & Walitt in this 2013 paper.

Wolfe & Walitt 2013: “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 & Walitt 2013: “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 spine were almost always psychogenic disorders.”

Wolfe & Walitt 2013: “The rise of fibromyalgia and the disputes it has engendered represents 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 in one that had multiple somatic symptoms and features that many considered psychosomatic. If these features were the death knell of neurasthenia, they should have also spelled the death of fibromyalgia. But they didn’t. The era was different, and powerful cultural forces stood being fibromyalgia and fought against the idea of a psychogenic illness.”

Wolfe and Walitt conclude: “Fibromyalgia seems to be a somatic symptom disorder with remarkable similarities to neurasthenia. It represents the end position on a continuum of distress. While psychological issues are clear, powerful societal forces are marshalled on behalf of fibromyalgia and it seems likely that they will sustain the fibromyalgia, at least for the present.”
[End of quotes by Wolfe and Walitt 2013]

In a 2014 paper written by Wolfe, Walitt and Hauser, entitled “What is fibromyalgia? How is it diagnosed, and what does it really mean?”, which appeared in the journal Arthritis Care and Research http://onlinelibrary.wiley.com/doi/10.1002/acr.22207/epdf, similar views are put forward:

“Most fibromyalgia patients meet criteria for other functional somatic syndromes and psychological disorders, and we will find overlaps and comorbidity related to shared genetic and environmental factors…Knowledge of the broad quantity of PSD [polysymptomatic distress] over its entire severity spectrum, from mild to severe, enlightens patient care and provides a mechanism for assessment and understanding that can be more meaningful and effective than just casting about for a specific diagnosis.”

In the Wang, Walitt et al 2015 paper on chemobrain, further clarification is given that Walitt places chronic fatigue syndrome firmly in the same somatoform category where he places fibromyalgia: “The discordance between the severity of subjective experience and that of objective impairment is the hallmark of somatoform illnesses, such as fibromyalgia and chronic fatigue syndrome.”

ME/CFS urgently needs extensive biomedical research to elucidate pathophysiology and possible treatment pathways. Dr Walitt may indeed be interested in the potential of immunomodulatory drugs as possible future treatments, as am I, but this does not drown out his consistent description of chronic fatigue syndrome and fibromyalgia as somatoform/perceptual/psychogenic for me.

The key focus must be on research leading to improvement for patients. In the past 65-odd years, the somatoform theory of CFS has not yielded effective treatments for patients, despite the untenable claims of some researchers.

While I have not come across anything to suggest that Dr Walitt supports GET/CBT for ME/CFS, and it is my understanding that he does not promote their use in fibromyalgia, in his research Dr Walitt does consistently interpret a difference between what patients report and what he and his colleagues can measure as evidence of somatization. For example, see the 2014 paper entitled “Polysymptomatic distress in patients with rheumatoid arthritis: understanding disproportionate response and its spectrum” http://onlinelibrary.wiley.com/doi/10.1002/acr.22300/epdf and the chemobrain paper. As a clinician I used cognitive assessments, and they are crude tools. The skill of the clinician in choosing the right tool for the right person and interpreting results appropriately is key. They only make sense alongside very individualised assessments of cognitive functioning within real-life settings. In my experience, there is often a gap between the actual level of impairment someone has and that “diagnosed” by a cognitive assessment, and I have never come across a case where somatization explained that gap.

Dr Walitt describes his research interests in this researcher story, dated August 2012 available at http://georgetownhowardctsa.org/researchers/researcher-stories/brian-t--walitt-

Dr Walitt: “My research interest is perceptual illness. In these disorders, a person experiences a range of different bodily sensations, such as pain and fatigue, without any clear external cause. In some, these sensations can be bothersome while in others they can be disabling. The perceptual illnesses that interest me change their names with every generation, with current disorders being called fibromyalgia, chronic fatigue syndrome, and post-Lyme syndrome.”

Dr Walitt continues: “My involvement in the field started during my medical training as I saw my first patients with fibromyalgia. The complaints of these patients were very familiar and made me realize how common they are in the general population, even amongst my friends and family. The desire to figure out a way to alleviate this particular type of suffering drew me into the field. As I have become more involved in research over the years, I have become convinced that unraveling the mysteries of perceptual illnesses will also shed light into the mechanisms that enable all people to feel and think and expand our understanding of the human condition.”

The NIH study has great potential. The plans unveiled by Dr Avi Nath are, in my view, very promising. But I am concerned about the Lead Clinical Investigator’s belief that ME/CFS is somatoform/psychogenic. The PACE trial has demonstrated amply how researchers’ beliefs about an illness can affect patient selection, methodology, analysis and interpretation and cause great harm.

I would prefer a different Lead Clinical Investigator, someone who is not starting from an assumption that ME/CFS is somatoform.

 

[weyland]

Walitt runs Fibromyalgia clinic and has done dozens of studies on FM - including studies on the effectiveness of SSRI's, a Review of pharmacological therapies in fibromyalgia, Serotonin and noradrenaline reuptake inhibitors (SNRIs), Longitudinal patterns of analgesic and central acting drug use and associated effectiveness in fibromyalgia, Mortality in fibromyalgia: a study of 8,186 patients over thirty-five years, Amitriptyline in the treatment of fibromyalgia: a systematic review of its efficacy.

Yes, and if you actually look at the conclusions of each of those studies they support what he is saying in the video and his talks, that fibromyalgia patients should remain untreated by medicine and should use mind/body approaches instead. This is similar to what the British psychs have done, doing various quasi biomedical studies and trials such as low dose steroids, showing them ineffective so they can funnel people to their mind/body treatments instead.

One of my goals was to broaden our understanding of Walitt past what amounted to a couple of short sound bites. (in your case it failed (lol))

I have already read several of his papers and I did not come to the same conclusions that you have. I find his papers to reflect the same opinions put forth in his video interview and talks.

@KME just did an excellent job summarizing the papers I was going to point you to, that you seemed to have missed, where his beliefs are outlined quite clearly. There can be no room for misinterpretation here. He evokes Wessely and Shorter. He plainly calls FM and CFS somatoform, and makes the boldfaced lie that the objective impairment doesn't match the subjective experience. This is in complete ignorance of CPET and tilt table testing, which clearly show objective impairment matching the subjective experience of patients.

 

[Karena]

Sorry this is off-topic. I just need to say how impressed I am by the people on these forums. Since Dr. Lapp diagnosed me with CFS in 1991, I have generally avoided talking about this disease. I don't have the energy to deal with insults from non-believers or with people (like my next-door neighbor) who think they have CFS/ME because their busy lives make them tired sometimes. Thank you for being so smart and offering such well-reasoned arguments. I don't like being sick, but I appreciate being part of such a great community!
And, especially, thanks to Cort for creating this site!

 

[keepinghopealive]

"permanent" changes in the brain? Sure hope that doesn't mean "cannot be reversed"!

 

[keepinghopealive]

Based on everything I have heard about this study so far, it is my assessment that we as a community need to be working together to insist that the whole thing be abandoned.

Whether we can succeed in getting the study to be abandoned, I don't know. But I think that it is important to get that kind of vehement objection on the record, for political reasons.

Because this whole thing sounds like very bad news indeed.

But Dr Nath and what he's proposed seems very promising, no??

 

[Katherine Autry]

Why would you assume that he's not saying medicine will not have any answers for you? Give him a little break here. He says FM patients cannot a expect a cure (can they?), that drug companies are over-hyping the results of their studies (aren't they?) and that you should feel free to explore other options (shouldn't you?).

I think that kind of honesty and openness is what you want in doctor. I think you're reading too much into that little interview. One of my goals was to broaden our understanding of Walitt past what amounted to a couple of short sound bites. (in your case it failed (lol))

Walitt runs Fibromyalgia clinic and has done dozens of studies on FM - including studies on the effectiveness of SSRI's, a Review of pharmacological therapies in fibromyalgia, Serotonin and noradrenaline reuptake inhibitors (SNRIs), Longitudinal patterns of analgesic and central acting drug use and associated effectiveness in fibromyalgia, Mortality in fibromyalgia: a study of 8,186 patients over thirty-five years, Amitriptyline in the treatment of fibromyalgia: a systematic review of its efficacy.

He's also done studies on gene expression, brain imaging, cytokines etc. He's produced a PDF for patients to help them understand how pain occurs (see attached)

Does that sound like someone who thinks people with FM aren't sick or should stop exploring their options?

Cort, WHAT HE SAYS sounds like someone who KNOWS people with FM aren't sick. What he researches was apparently intended to PROVE that. He has got to go.

 

[Katherine Autry]

Cort, WHAT HE SAYS sounds like someone who KNOWS people with FM aren't sick. What he researches was apparently intended to PROVE that. He has got to go.

And why CAN'T FM patients expect a cure? Because the researchers, like Walitt, are not LOOKING for a cure. They are looking for a way to IGNORE this. He has got to go. Putting him in as lead clinical investigator is like putting Joseph Mengele in charge of the Human Genome Project. He may be technically qualified, but his mind is INCAPABLE of IMPARTIALITY and he has a GOD COMPLEX. He therefore fails to meet an essential requirement for this position - scientific impartiality. The ability to say "I don't know the answer, and I am here to search for it." Not to say "You can't expect a cure, you can't expect anything from us."

 

[gowwab]

Here's the NIH's response to MEAction about Walitt

You know what I like in here? The "broader national approach".. I don't know what it means but I like it.

http://www.meaction.net/2016/02/23/nihs-initial-response-to-article-and-comments-on-walitt/

With the way this study is looking this is the part that scares me the most. If their conclusions and treatment suggestions are wrong or harmful to us they will be harmful in a way that will affect us on a mass scale for a long time. Think PACE.

What are the odds that a group of scientists new to this incredibly complex disease will get it right after out experts have been trying for decades and with such a small sample? Why the rush to say they are going to suggest treatments before any results are even in? Why not take our expert suggestions on diagnosis and treatment as the best we have for now and go from there?

At this point I just what this study to go away or keep it to a fact finding mission. Every time in the past The CDC or the NIH has given us a national anything it has set us back not forward. I had high hopes things would be different this time but it looks like we can;t put our feet up and hope for the best just yet.

I can't believe we are using this time debating this guy. Seems think a no brainer to me. They picked the wrong guy (guys if you include others who prescribe to CBT HET and other foes to ME), the wrong controls and so far no patient oversight. Can we move forward together now to get this study MUCH better?

 

[Sunnyday]

I appreciate your points Cort, and that you are trying to broaden our understanding of what he is saying. But I cannot believe he is the lead researcher and a psychologist to boot. Of course he is going to lump everything into psychology instead of looking at the physical. .

What gave you the notion he was a psychologist? He is an MD (rheumatologist) with an MPH (masters of public health).