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

[Cort]

An MEAction Post titled "NIH lead clinical investigator thinks CFS and fibro are somatoform" has raised a furious storm. It focuses on Brian Walitt- the lead "clinical investigator" in the NIH's Clinical Center study that involves almost 30 other researchers.

The post states:

[fright] [/fright]Brian Walitt is the lead clinical investigator for the NIH’s new intramural ME/CFS study. His appointment has raised serious concerns due to his strong views of diseases like chronic fatigue syndrome and fibromyalgia as psychosomatic.

In 2015, Walitt co-authored a paper in which it was stated that CFS and fibromyalgia are somatoform illnesses, characterized by a “…discordance between the severity of subjective experience and that of objective impairment.”

Similarly, in an interview with Family Practice News, Walitt described fibromyalgia as a “psychosomatic experience,” part of the “range of normal,” rather than an abnormal disease state; a way of “dealing with the difficulties of just being a human.”

Here is the video and a complete transcription of Dr. Walitt’s video interview “Fibromyalgia doesn’t fit the disease model” for Family Practice News.

Do you think Walitt should be involved in this landmark study? Leave your comments for the NIH below.​

A transcript of an interview with Walitt on fibromyalgia was also posted which has been interpreted to read that Walitts believes FM is not a disease, that patients are not sick, that the disease is all in one's mind.

Not surprisingly, the comments to that were both anguished and furious.

• "It shows how little you think of our disease and you have no intention of helping us at all."
• "It is proven to be biological and neurological. Not Psychological"
• "He is obviously not a specialist in this illness, or he would understand the connection to physical aspects."
• "This man cannot, I repeat, CANNOT, be a part of anything to do with our studies or our work."
• "Anyone who believes this is psychosomatic is themselves crazy and should not be on the panel."

One blog went so far as to assert that "Walitt really doesn’t seem to see a point in researching a biological basis for fibromyalgia" and called the study "PACE on steroids".

The Interviewee - the Family Practice Interview

There's no doubt that Wallit's strange interview is subject to multiple interpretations - some of them very upsetting. It's hard to understand. I propose an alternative interpretation to some of the more problematic parts of the short interview: that Walitt is talking about a narrative not a disease.

In the interview Walitt described FM as a difficult disease that the medical profession can’t help that much with. That theme - that the medical profession isn't very good at helping FM patients - runs throughout his work. Wallit has co-authored several papers suggesting that drug therapies provide little real help for FM patients and makes no bones about that. In fact, in another interview, Walitt asserted that "a return to a happy and pain-free life because of modern medicine" basically isn’t happening in FM. He stated:

"It’s also important to be honest….and explain that the medical system can’t provide the answers that they want, that at best we can try to help them–we can give them some tools to help deal with the day to day struggles of having fibromyalgia, but we can’t just make it go away"

[fleft]

[/fleft]Walitt steps into touchy territory, however, when he posits that all experience is psychomatic experience.

People are not willing to accept the idea that our emotions affect our sensation, right, the idea that mind itself is able to create these things and that all experience is a psychosomatic experience. Nothing exists without your brain creating those sensations for you….

Studies indicate that negative emotions or stress often worsen pain and other sensations, etc. and that's probably so for many people with ME/CFS or FM. It's not clear what Walitt means by "these things" when he states the mind is "able to create these things" but he does says that your brain is creating these sensations.

When Walitt talks about a "narrative" people can take to towards FM that can help relieve their suffering, I belief that he's talking about an approach to the disease - not about the disease itself. He suggests one such a narrative might be that FM patients are "dealing with the difficulties of just being a human". Given his belief that there's little modern medicine can do to help FM, that approach while a bit strange could make some sense.

This perspective could be construed as being is similar to that seen in Buddhism where having an illness is simply part of being human. We're all going to be sick - have our bodies break down - whether earlier or later - at some point; i.e. this is one of the difficulties of being human.

Wallitt asserted that FM patients brains are creating sensations that are causing them pain and inhibiting them from doing what they want to do. That's inherently upsetting particularly to people in western societies who believe that good health is their god-given right but Wallets asserts that that narrative is unhelpful in FM.

Instead of ignoring the pain Walitt suggests that FM patients should allow their behavior to be guided by it. That, of course, is the opposite approach to that suggested by some CBT/GET practices.

He suggests dropping the word sick which has negative connotations and adopting a different narrative that essentially says that bad things can change how our brains work…

"might make it a little bit easier on everybody; that might be a more palatable narrative, understanding that, you know, people can feel bad for no real fault of their own, because of the circumstances of lives and how brains just work–the way it’s supposed to be–as opposed to being sick."

It is without a doubt a strange interview. Walitt the researcher, however, is not nearly so problematic.

The Researcher

When you look at Walitt's body of work and, in particular, the paper cited a very different picture emerges, however. Walitt does characterize ME/CFS and FM as psychosomatic disorders but he does not believe they are psychological illness, or that behavioral therapies like CBT are very helpful. Instead he believes that pathophysiological changes in the brain triggered by an immune response are causing these diseases and he proposes that immune modulators are likely to be helpful. In short, he's walking a similar investigative path as Jarred Younger and other ME/CFS researchers.

Walitt has focused mostly on FM and rheumatoid arthritis. His FM prior work included a gene expression study that highlighted immune genes and study suggesting that FM should not be listed as somatoform disorder in the latest DSM revision. Other study topics include childhood maltreatment, SNRI effectiveness, SSRI effectiveness, brain white matter in GWS, PET scans of FM brains, another gene expression paper and symptom scales.

The Psychosomatic Approach

Walitt's statement that FM and chronic fatigue syndrome are psychosomatic disorders occurred in a paper tied Chemobrain: A critical review and causal hypothesis of link between cytokines and epigenetic reprogramming associated with chemotherapy" which Walitt co-authored.

Chemobrain is akin the "brain fog" and "fibro fog" experienced in ME/CFS and fibromyalgia. The cognitive problems in ME/CFS and FM are similar, the paper proposes, to those found in chemobrain.

"The state of the evidence for chemobrain strongly resembles that which is seen in fibromyalgia and chronic fatigue syndrome. Like chemobrain, patients with these illnesses experience subjective and clinically distressing dyscognition, with attention, concentration, forgetfulness, word-finding, multi-tasking, and organization being the most common complaints. Also like chemobrain, measurements of objective neuropsychologic function frequently fail to demonstrate impairment and what is seen in positive studies is of small clinical magnitude."

[fright]

[/fright]The psychosomatic part comes from Walitt's observation that the cognitive impairment found on tests is more modest than one would expect given the issues cited by patients. That discordance between patient complaints and the results of objective testing is, the authors state, the hallmark of somatoform illnesses. (Overviews of cognitive testing in ME/CFS tend to describe the impairments found as relatively mild.)

The authors believe that the cognitive problems in ME/CS, FM and chemobrain:

"demonstrate that the (cognitive) impairment is modest, of unclear clinical significance, and correlates poorly with the severity of the subjective experience of chemobrain."

They suggest that a variety of triggers including chemotherapy and psychological distress and others are able to trigger illnesses such ME/CFS and FM that alter perception.

Pathophysiological Disorders

The perceptual thesis, however, doesn't mean that these diseases are psychological. Walitt believes the perceptual problems he believes are found in ME/CFS and FM are probably caused by immune dysregulations in the brain and places the "psychosomatic disorders" such as chemobrain (and ME/CFS and FM) firmly within a pathophysiological construct. The authors believe that 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"

They propose that rapid shifts in cytokines lead to epigenetic alterations that essentially reprogram the brain. How this happens is not clear but the authors propose that cytokine changes begun in the body by the initial trigger get transmitted to the brain where they become permanent. They believe a common pathway in all these diseases exists.

They signal out the microglia as being key players but admit that they have no idea how they affect cognition. They list, though, a number of possible factors many of which many be familiar: glutamate induced damage, altering serotonin, dopamine, norepinephrine nerve transmission, GABA, acetylcholine, neuropeptides, and nerve growth factors (BDNF) increased levels of oxidative stress, nitric oxide.

Epigenetic changes which produce permanent changes to gene expression are the key. They point to research indicating that epigenetics play a critical role "brain development, memory formation, and more importantly, in regulation of learning and memory."

When turning to treatment they turn not to CBT or psychological therapies but immunomodulating drugs such as monoclonal antibodies (e.g. Rituximab), TNF-a reducing agents (etanercept), P2×7 antagonists, BDNF enhancers, S-adenosyl methionine (SAM), Betaine and histone deacetylases. They're exploring many of the same biological pathways that researchers exploring neuroinflammation and others posit are involved in ME/CFS.

Finally, in a paragraph that could be taken right of the study protocols for ME/CFS, they propose administering a "major physiologic stress" (e.g. exercise) and observing its biological ramifications to uncover the mechanisms at work.

Conclusions

In these complex and evolving areas it's best to assess researchers on their broad bodies of work. Because no consensus about the kinds of diseases ME/CFS and FM are has been reached in the medical community they're viewed in a variety of ways. It's interesting that researchers who may categorize the diseases differently may nevertheless largely agree on what might be causing them. Such is the complex world we live in.

[fleft]

[/fleft]Walitt and his colleagues belief that whatever is happening in ME/CFS and FM is mainly altering perception may rankle. It's important to note, though, that Walitt does not propose altering disease beliefs or mindsets; the problems in these diseases are more entrenched than these simple solutions. Nor does he believe that one can push through these diseases; patients should allow the symptoms produced in them to guide them in their behaviors.

Instead what Walitt believes are causing these diseases, how he purposes to study them and how he proposes to treat them is broadly in line with much ME/CFS and FM thought. He proposes these diseases are immunologically caused and that immunological treatments will ultimately be used to defeat them. He also proposes that severe physiological stressors be employed to identify the mechanisms causing them. That's a study protocol, of course, that has been employed successfully in ME/CFS for quite some time.

Next Up - A Look at the NIH's Clinical Center Study

 

[Karena]

I understand where you're coming from, and it would be nice to give this guy the benefit of the doubt. However, I've seen and read too much to view him as anything more than a dangerous influence. He may be interested researching pathophysiological changes in ME/CFS, but his views play into the idea that we're not really sick.

In his interview, he makes a clear distinction between people with so-called legitimate diseases like diabetes (which involves the role of insulin) and people with more subjective diseases like ME/CFS and FM. His patronizing, faux sympathetic attitude toward patients like us is infuriating.
Here is his advice to other doctors:
"When you talk to patients with fibromyalgia, uh, and you ask them what they think about it, they can often provide you the answers, about where they should go. Uh. People with highly spiritual feelings and belief that, um, in spiritual forces as, uh, potential ways to heal, uh, should be referred that way. Uh, people who believe in exercise should go that way; people who believe in Eastern philosophies should be referred that way. Uh, taking a one size fits all, or using your own judgment of what is legitimate, uh, is often not helpful in treating people with fibromyalgia, because it’s really about what they think is legitimate."(http://thoughtsaboutme.com/2016/02/...e-perception-mecfs-as-normal-life-experience/)

Imagine oncologists treating cancer patients with Eastern philosophy instead of surgery, radiation or chemotherapy. Sure, there's not much medical science can do to help me. But that's not my fault. If anything, it's the fault of all the physicians and scientists who have failed to treat and research CFS/ME in the 25 years since I became sick. Indeed, I think there's something wrong with their mind-body connections. Their minds have trouble grasping the fact that something's wrong with my body!

 

[Cort]

I understand where you're coming from, and it would be nice to give this guy the benefit of the doubt. However, I've seen and read too much to view him as anything more than a dangerous influence. He may be interested researching pathophysiological changes in ME/CFS, but his views play into the idea that we're not really sick.

In his interview, he makes a clear distinction between people with so-called legitimate diseases like diabetes (which involves the role of insulin) and people with more subjective diseases like ME/CFS and FM. His patronizing, faux sympathetic attitude toward patients like us is infuriating.
Here is his advice to other doctors:
"When you talk to patients with fibromyalgia, uh, and you ask them what they think about it, they can often provide you the answers, about where they should go. Uh. People with highly spiritual feelings and belief that, um, in spiritual forces as, uh, potential ways to heal, uh, should be referred that way. Uh, people who believe in exercise should go that way; people who believe in Eastern philosophies should be referred that way. Uh, taking a one size fits all, or using your own judgment of what is legitimate, uh, is often not helpful in treating people with fibromyalgia, because it’s really about what they think is legitimate."(http://thoughtsaboutme.com/2016/02/...e-perception-mecfs-as-normal-life-experience/)

Imagine oncologists treating cancer patients with Eastern philosophy instead of surgery, radiation or chemotherapy. Sure, there's not much medical science can do to help me. But that's not my fault. If anything, it's the fault of all the physicians and scientists who have failed to treat and research CFS/ME in the 25 years since I became sick. Indeed, I think there's something wrong with their mind-body connections. Their minds have trouble grasping the fact that something's wrong with my body!

The cancer analogy does not really fit work if you think about it. There are tons of options - lot of different drugs for cancer - and there are three drugs for FM - none of which work very well according to Wilitt's studies. He would never suggest people with cancer try meditation because they have other options. (Plus they're probably going to die soon if they don't try them.) That's not true for FM.

Willet's says all of the drugs for FM are over-rated and you shouldn't don't be limited to what your doctors say - he makes that point strongly in an interview. His news is not very good really - do what you can to feel better because we can't help you that much - but at least it's honest.

From an interview:

FAITH LAPIDUS: Doctor Walitt says the heavy advertising of a drug to treat fibromyalgia may give some people the idea that it can be cured. He says that is not reality. And he says studies of fibromyalgia patients have shown that very few get much better, and some get much worse, even with treatment. He says it is wrong to expect that patients will take a drug and all of their symptoms will go away.

BRIAN WALLIT: “One can pursue one’s health and try to get better, but to expect a cure is unlikely and the best thing that one can do is stop chasing cures and deal with the reality of one’s situation.”

CHRISTOPHER CRUISE: Doctor Walitt says drug manufacturers market their treatments because they are concerned about making a profit. He says fibromyalgia drugs available today are very limited, and drug makers should not be selling a cure.

Doctor Walitt says he helps patients understand that they are not alone in their suffering. He gives them a better understanding of the disease and shows them how others have found ways to live with it.

 

[Cort]

I understand where you're coming from, and it would be nice to give this guy the benefit of the doubt. However, I've seen and read too much to view him as anything more than a dangerous influence. He may be interested researching pathophysiological changes in ME/CFS, but his views play into the idea that we're not really sick.

In his interview, he makes a clear distinction between people with so-called legitimate diseases like diabetes (which involves the role of insulin) and people with more subjective diseases like ME/CFS and FM. His patronizing, faux sympathetic attitude toward patients like us is infuriating.
Here is his advice to other doctors:
"When you talk to patients with fibromyalgia, uh, and you ask them what they think about it, they can often provide you the answers, about where they should go. Uh. People with highly spiritual feelings and belief that, um, in spiritual forces as, uh, potential ways to heal, uh, should be referred that way. Uh, people who believe in exercise should go that way; people who believe in Eastern philosophies should be referred that way. Uh, taking a one size fits all, or using your own judgment of what is legitimate, uh, is often not helpful in treating people with fibromyalgia, because it’s really about what they think is legitimate."(http://thoughtsaboutme.com/2016/02/...e-perception-mecfs-as-normal-life-experience/)

Imagine oncologists treating cancer patients with Eastern philosophy instead of surgery, radiation or chemotherapy. Sure, there's not much medical science can do to help me. But that's not my fault. If anything, it's the fault of all the physicians and scientists who have failed to treat and research CFS/ME in the 25 years since I became sick. Indeed, I think there's something wrong with their mind-body connections. Their minds have trouble grasping the fact that something's wrong with my body!

Whatever his views on treatment are (which is that there really aren't any good ones) it's his views on research that matter here - and his research views are very much in line with other ME/CFS researchers. It's been suggested that Walitt's is going to somehow sabotage this study but so far as I can tell this study pretty much does exactly what Walitt's and co-authors proposed in their paper - hit the patients with a big physical stressor and watch their brains or whatever go woo-woo. It's wonder he was made chief clinical investigator.

He may have this kind of strange perception focus but that pales next to the possibility of uncovering the biological mechanisms at work in ME/CFS - which is what he's interested in.

 

[Gregory G Cutler DVM]

I would like to hear his explanation for how somatoform diseases lead to the outbreaks of cases such as those in Incline Village, Lyndonville. I take further exception to anyone that claims to be a doctor but is actually a psychologist and studies "diseases" that cannot be proven using Koch's Postulates. I would call that man a pseudo doctor!

 

[michele]

There seems to be a lot of doublespeak here. It sounds more like a political debate, but then to a certain extent it is.
I don't know what to make of Walitt. When a person is very sick or in extreme pain they are rather overwhelmed by it. Yes, mild physical discomfort can be magnified by focusing on it, but there comes a point where it cannot be ignored.
This reminds me of the time I went to an MD who had no answers so he told me to "trust in the universe". If I wanted THAT answer I could have gotten it for free at an ashram or church.
Personally I don't like lectures from MDs on how to handle my illness and I don't know if Walitt is the right guy to head up this study.

 

[Cort]

I would like to hear his explanation for how somatoform diseases lead to the outbreaks of cases such as those in Incline Village, Lyndonville. I take further exception to anyone that claims to be a doctor but is actually a psychologist and studies "diseases" that cannot be proven using Koch's Postulates. I would call that man a pseudo doctor!

Maybe you check out his research on gene expression, cytokines, neural pathways, drug effectiveness, etc. first.

I imagine that his explanation would be pretty much what was given in the blog - which is similar to other ME/CFS researchers by the way: that something (infection, chemotherapy, whatever) triggers a cytokine storm which produces permanent changes in the brain. That explanation has pretty much been around for as long as ME/CFS has been around but really took hold after the Dubbo studies. Walitt has added epigenetic changes to the mix - which are being found in ME/CFS as well.

 

[Cort]

There seems to be a lot of doublespeak here. It sounds more like a political debate, but then to a certain extent it is.
I don't know what to make of Walitt. When a person is very sick or in extreme pain they are rather overwhelmed by it. Yes, mild physical discomfort can be magnified by focusing on it, but there comes a point where it cannot be ignored.
This reminds me of the time I went to an MD who had no answers so he told me to "trust in the universe". If I wanted THAT answer I could have gotten it for free at an ashram or church.
Personally I don't like lectures from MDs on how to handle my illness and I don't know if Walitt is the right guy to head up this study.

No one wants the answer that's there's not much modern medicine can do to help these illnesses. I think Walitts is pretty conservative there - he probably doesn't know much about alternative approaches. But here you and I are - on the internet - trying to find ways to understand and treat it. What does that say about treatment efficacy in general for ME/CFS and FM? I suggest that its not so great!

 

[kamodio]

Thank you, Cort, for posting this. I understand people's alarm at some of Walitt's statements that, I think, are philosophical/spiritual in origin but can sound cold and unsympathetic to the reality of people's experience of FM. After reading your post I am reassured that his research views are aligned with our needs. i appreciate his statement, “One can pursue one’s health and try to get better, but to expect a cure is unlikely and the best thing that one can do is stop chasing cures and deal with the reality of one’s situation.”. Isn't that what we're all doing here, helping each other deal with the reality of our situations?

 

[serotone9]

That guy sounds dangerous, poorly informed, and demonstrates clear pre-existing bias in his thinking (he believes he already knows the answer before he even starts). Those aren't good qualities for a researcher to have who is required to have an open, flexible, and investigative mind.

 

[Simon]

Hi Cort

I've read the paper carefully now. Initially my take was similar to yours ie nothing very different from what others think, but I'm afraid that's wrong (someone else put me right). I think the authors wanted us to reach that interpreation too.

Instead he believes that pathophysiological changes in the brain triggered by an immune response are causing these diseases and he proposes that immune modulators are likely to be helpful. In short, he's walking a similar investigative path as Jarred Younger and other ME/CFS researchers.

Sadly NOT the case - he explicitly says FM/mecfs are 'physiologic' which means normal, as opposed to pathological. (I initially thought as you wrote above, but on careful inpsection its not the case, see
http://forums.phoenixrising.me/index.php?posts/699695/ )

They signal out the microglia as being key players

Not really, beyond saying peripheral changes in cytokines can influence microglia, But a completely differeny hypothesis to Younger, amongst others, who see the problem as pathological long-term activation of microglia driving things. By contrast, Walitt et al do a lot of handwaving about epigenetics (the trendiest things going - epigenetics are likely to be involved in any long-term changes but the paper fails to explaini how this would work in chemobrain, mecfs or fibro). If you can explain the mechanism epigenetics causes symptoms, I'd love to hear it. I suspect the authors would too.

Hey, I wish it were not so, but I'm afraid his view are clear.

Oh, this is fun too, from a 2012 Nature reivew Walitt co-authored:

The fibromyalgia controversy Fibromyalgia is a contested illness,3 a type of illness “where sufferers claim to have a specific disease that many physicians do not recognize or acknowledge as distinctly medical.”4 The underlying controversy is about whether the disorder is “real,” not in one’s head, not psychosomatic; and not primarily a social construction or psychocultural disorder.5, 6 A psychocultural disorder is one that is shaped primarily by psychological factors and societal influences, although other factors can also contribute. The primary contemporary dispute about fibromyalgia is whether psychocultural factors explain fibromyalgia content or whether fibromyalgia is largely a product of disordered central pain processing.7

The evidence for a psychocultural disorder is strong....

You get the drift.

Whatever else is true about Walitt, he ain't an example of mainstream mecfs researcher thinking.

 

[Bob Coppedge]

As a social scientist, (retired PhD, Economist), i fully realize the importance of objectively in research. As a CFS sufferer, I object to the classification of my suffering as psychosomatic. There is something very subjective in the approach of this "researcher".

 

[Mark Hansen]

At this point in History, one would think that the Government would be sensitive to the Public Relations aspect of this...I am at a loss to decide whether to conclude that they are collectively incompetent, don't care or just want to keep things in their inner circle. Whatever the case, for anyone to have faith in the effort and for it to have any real impact, they must let this chap go. Even a hint of such things will poison any potentially positive research...hope someone calls the NIH and tells them the truth.

 

[Katie]

Oh boy, oh boy, nobody wants to hear that basically we've caused our own illness. I have had a stressful life and at the time I became sick I was under high stress, ok I'll accept that. I was sent to a psychiatrist to help me get off opiods, and I thank him for that. I've worked with him for several years and he helped me immensely deal with emotions caused from PTSD. One of the first things he said to me was "the pain etc was from the brain" and dealing with my negative emotions, setting better boundaries etc will help reverse the FM. So, I am in a better place emotionally. I don't feel stressed by my life at all except for my DISEASE. All other matters have been dealt with for some time yet I continue to worsen with my symptoms, right now I'm back in the wheelchair and house-bound. No stress but I'm worse.
I can understand that the brain is not functioning well or "normally". I understand that the brain is the driver. I can understand our genetic make-up may be faulty and lead us into disease. We do not know the initiator of this disease but probably some sort of stressful event such as a virus not completely eradicated, accident etc.
It is difficult to get ones head around "our brain is causing our disease" which is most psychiatrists' point of view but as long as it's not (ever) described as somatic (psychosomatic) I understand the concept or theory. Our brain is the driving force of all our body functions.
Also, I could not care less who solves the riddle of ME/CFS and FM. I don't care if my brain started all of this. I just want somebody to help me (us). I read an article today from Medscape how people with CFS have a higher rate of suicide than the general population. Really? I wonder why? I'm in constant pain, cold sweats, dizzy, exhausted, can't make plans, haven't seen my raison d'etre (reason to be) which are my grandkids since Christmas. I'm not suicidal, but 2 years ago I felt I was dying anyway and wanted it over with.
SOMEBODY HELP US. DOES IT REALLY MATTER HOW IT BEGAN, STRESS FROM LIFE OR VIRUS OR WHAT-EVER, AT THIS POINT (16 YEARS SICK WITH ME/CFS AND FM) I REALLY DON'T GIVE A DAMN, JUST HELP US

 

[tatt]

he's the lead investigator, cort, not one of the investigators. In the lead position you want someone who has not already made up their mind.

Cognitive difficulties are less than people report, he says. I would like to know when these difficulties were measured. As exercise tests have shown you need to measure this twice, were they tested twice? As I was physically active this morning I have problems concentrating on this now (evening in the uk). This morning I would have done better. I'd also wonder about the nature of the controls. I was pretty successful before I became ill, compare my cognitive state now to an average individual and you're underestimating the effect of the illness on me. Sorry no way to say that without sounding boastful but perhaps they should also look at the perception of friends/ relatives/ colleagues views on the cognitive change and see if they match the measurements or the perception of the individual with ME.

 

[Katharina]

Cort, Thanks for the analysis. As I read the MEAction post, I was upset by the thought that someone who thought ME was psychosomatic would be guiding research. As I read on, it seemed the article took the worst possible interpretation of the comments it assessed. Your more measured assessment led me to separate his research from his comments regarding a philosophy for living with this chronic illness. For what it's worth, I firmly believe that ME/CFS is real, and the personal philosophy I have developed for living with chronic illness is very similar to his comments that are quoted in your article. Thanks for helping reduce my stress level today!

 

[Juliasr]

I agree Cort in the interpretation of Walitts research views. Major stress is required to see the various incarnations of ME/CFS. I wish I could be enrolled in a program that pushed me to collapse. Even hospitalisation! Then something could be observed, measured, recorded and treated. In my experience it's the chicken or the egg. Am I stressed and the symptoms occur as a result or am I having a relapse and exhibiting stress responses as a result? All I know is with or without a diagnosis you can research the hell out of any disease and make informed decisions about how you're best able to move on with the body you have, with the limitations you now find yourself with. Can't wait for this gig to kick off!

 

[lisapetrison]

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.

 

[Debbie Iverson]

Thanks for the timely, alternate perspective Cort. It's clear we need to dig deep into our perceived controversies. I know how easy it is for me to be discouraged by the pace of progress and to fear the worst when a clear picture is unavailable. I'm sure I'm not alone in those fears or, equally, in the appreciation of a continued dialogue with many different voices.

 

[Carollynn]

The NIH should pull him from the study based on his interview remarks. They are revealing, coldly at odds with some of the views you'd think he has through his published papers. But if that's the public face he wants to put out there to represent his work, he has revealed his bias and it's good that we know it now, when the NIH can respond with someone else. We need someone who engenders hopefulness in patients, who is as passionate about cracking this illness and quickly as we are, not someone who goes on camera having a philosophical discussion better suited for a cocktail party at an American Psychological Association conference. We need a lead investigator who can take on the APA so that they reverse the damage of how ME/CFS is listed in the DSM-V, who will acknowledge the decades of basically kicking the ill in the ribs while we're down. We need a lead investigator who--like Dr. Kamaroff saying it was a mistake that he and the other researchers reacting to outbreaks in the 1980s coined the name Chronic Fatigue Syndrome--will start by naming the mistakes that this field of science has made so far and for so long, and how s/he is determined to make amends for the terrible hurt it has caused by now devoting their career to the bio-organic causes.

If we as patients come to some his conclusions on our own--that in the face of no real treatments we may need to just live with our illness as best as we can--that's about managing, pacing. That's not the starting point of a major study by the foremost medical thinkers of our country. The NIH needs to make a clean split from the psycho-social emphasis it's had before.