Conversation about Walitt (Split Thread).

[leela]

Sorry, Jeanette's blog post about Walitt was an attack. What do you call this?

"Walitt’s claims lack even an inkling of science. In the demeanor of a hokey cult leader, he lays out his horrifying *beliefs* about fibromyalgia."

Everyone needs to take a breath and step back and mediate on this! Walitt is using complex language that should not be taken superficially.

In my opinion Walitt is using deliberately obfuscating language. It is not complex so much as vague and misleading. Jeanette was telling it like it is.

He does make a couple fairly good points but then jumbles them all up in completely made-up theoretical musings
about how these illnesses are simply an "experience of normal". While from one vantage there is some truth to that (it is our normal now, and
many of us have learned to cope with that) he presents some ideas that are really dangerous to people who are not properly educated about neuroimmune disease.
He is essentially making a case for not even trying to help patients who bravely live with an ongoing array of symptoms that would have The Hulk in tears.

My "experience of normal" is pain, orthostatic intolerance, awareness of my own horrible-to-witness cognitive decline, isolation, loss of career, friends, hobbies and
much of my treasured independence, poverty, and the looming spectre of homelessness.

I am a long-time meditator, and I credit that with having kept me sane and relatively equanimous, considering what I live with every day. I also have the discernment to know I do not have to chose to believe poppycock fantasies like that, and to seek whatever relief I wish to; and I need professionals and scientists who see reality clearly so they can contribute to and collaborate with me in my pursuit of the healthiest possible life. (I am also personally much more inclined to Alternative and Complimentary medicine, but I have no truck with the kind of BS this guy espouses.)

I think it is reasonable to expect my medical professionals to have at least the desire to help me manage the worst of the symptoms, regardless of what "normal" looks like to them, me, or anyone else. No one should have to live like this with zero input (much less compassion) from medical professionals. We have already been tossed aside enough--now is NOT the time for more of that!

Walitt has wrapped up a fantasy in pseudo-science-speak and a very damaging one at that. Don't treat these people, it upholds their inability to deal with normal life. [ETA: I have paraphrased, accurately-- see @Valentijn's post below for the direct quotes]
Only people who have never had neuroimmune disease can spout crap like that--and people who habitually indulge thought-forms and belief-systems and spin stories from them with no regard for whether they are based in Reality or not.

So learning that someone with beliefs like that is heading up key research at a major govt agency is alarming, and merits strong language. I have a different communication style to Jeannette's, but I appreciate her candor and wrathful skillful means in letting NIH know that this is not an acceptable choice. Demure sidelining is not the appropriate response to where we are right now historically, politically, or scientifically.

I most certainly do not plan to take a step back. If we are going to issue directives to the patient community, my suggestion would be leaning in at this crucial juncture.
Lean in and let them feel the full heat of our collective body/mind!

 

[Flo]

Did you write that because he's a man?

Jeez, Sorry @Kina

I have watched some material by Walitt, about fibromyalgia. I think you are misunderstanding Walitt, which is rather easy since he's disguising his psychogenic claims with biology as is in fashion noways for proponents of these theories. The key message was that fibromyalgia is not a disease, that patients are not sick, but have constructed the concept of fibromyalgia to give a name to ordinary personal problems manifesting as physical symptoms. Walitt also uses the word somatoform which means mental illness. In his chemobrain paper, the role of biology is reduced only to trigger, much like in the Wessely school model of CFS, the initial infection is only the trigger for false illness beliefs nd unhealthy behaviour.

He believes people with FM are a phenotype and their symptoms do not fit in with the current model of medicine. He does not say that FM is caused by "personal problems". Please do not paraphrase for him, use direct quotes from him.

And somotoform does not mean "mental illness". Somatoform illnesses are brain disorders that cause body illnesses. That is a big difference and very specific. Even somatoform illnesses have a biological cause, right?

The problem people have with somotoform is that it includes hypochondria in which people think they have an illness like cancer that can be shown medically does not exist.

Both somotoform illnesses like hypochondria and fibromylgia have some of the same biological underpinning, namely changes in serotonin function:
http://www.ncbi.nlm.nih.gov/pubmed/21508861
http://chronicfatigue.about.com/od/treatingfmscfs/a/serotonin.htm

What he is doing is linking the two together to get a whole body idea what is happening. Which I happen to think is brilliant.

I, myself, know and accept my mental illness AND FM/ME as symptoms of an underlying root cause of my chronic illnesses. I know when my anxiety gets worse my gut gets worse. I do not think one causes the other, I believe they arise simultaneously, from the same root cause, which for me is high serotonin.

 

[Flo]

Walitt has wrapped up a fantasy in pseudo-science-speak and a very damaging one at that. "Don't treat these people, it upholds their inability to deal with normal life."

This is what I mean, when did Walitt ever say "Don't treat these people, it upholds their inability to deal with normal life."?

 

[Valentijn]

This is what I mean, when did Walitt ever say "Don't treat these people, it upholds their inability to deal with normal life."?

http://www.meaction.net/2016/02/20/nih-lead-clinical-investigator-thinks-cfs-is-psychosomatic/

And so when you find people with thing like fibromyalgia, you’re either going to be sick, bad, or weak–and the idea is really to find a fourth way–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.

Fibromyalgia appears to be a way that people experience suffering in their body, both from the way that their bodies are interpreted and the problems of the body, as well as the problems in their lives, as well as how societies tell us how to experience things. All those come together to create a unique experience in different points in time and right now that experience is–one of those experiences is fibromyalgia.

Do not assume the responsibility of day-to-day symptom management

It does not cause patients harm to be untreated

 

[Bob]

He says there is an underlying biology (ie, not in our head) but that predisposes us to psycho originating sensitivities.

If he says that there's an underlying biology that makes us misinterpret normal sensations then I'd like to see that. Could you point me towards it please? Was it in the video? And if so, do you remember what time?

The truth is Walitt knows that ME is an illness...

Not according to the evidence that I've seen. See Valentijn's quotes, above. Also, in one video he raises the question of whether ME and fibromyalgia are a cultural phenomena, and that doesn't strike me as someone who 'knows' that ME is an illness.

In fact Jeanette's worsening symptoms actually prove Walitt's ideas. That MENTAL STRESS effects us physically. That is a psychosomatic disorder, it does not mean it is made up, it means it is created by mental stress.

It's well known that any stressors on the body (i.e. physical, cognitive, emotional or environmental) can adversely affect us. Emotional activity depletes cellular energy resources, so it's no surprise it has a similar effect as physical and cognitive activity.

Traditionally, the term 'psychosomatic' relates to psychological issues that manifest as physical symptoms/illness (e.g. a Freudian-type internal conflict that manifests as a bodily symptom), and this is a million miles away from a biological disorder that causes a depletion of cellular energy. BTW, Walitt has used the term 'somatoform' rather than 'psychosomatic' in the literature that I've read.

Good luck trying to convince everyone on an ME forum that they have a psychological disorder. (Hint: don't bother if you don't want a prolonged and passionate argument.)

 

[BurnA]

This thread isn't about Walitt is it, we can discuss him and his theories in the NIH study thread.

This thread is about someone writing a tweet and then getting unreasonably attacked for it by James Coyne.

I think Coyne was way out of order even though i think there are better ways to communicate displeasure to the NIH than an angry tweet. I can't get upset about one tweet that i would never have read if it wasn't for this forum.
So i dont really mind what Jeanette did or didn't tweet, i do care that Coyne seems to have a very unreasonable side to him. I don't condone his behavior in this case at all. How do we know he isn't going to do this again as soon as someone says something he doesn't like ?

 

[leela]

I reserve the right to paraphrase, and I extend my gratitude to @Valentijn for sparing me the odious task of providing the corresponding direct quotes.
One of the most unsettling things about Walitt is he peppers his speech with key phrases that *sound* scientific, non-BPS, and compassionate, whilst using
these to mislead and misdirect. The misuse of language and vocabulary is a well-known tactic that we have discussed many times on this forum.

You are of course entitled to espouse this person's views, @Flo, but it is likely an exercise in futility to ask any of us that oppose them to refrain from (loudly and clearly) expressing our frustration that he and his belief systems have anything to do with this study.

 

[Flo]

http://www.meaction.net/2016/02/20/nih-lead-clinical-investigator-thinks-cfs-is-psychosomatic/

Nowhere did you quote him as saying "Don't treat these people, it upholds their inability to deal with normal life."

You are taking his remarks out of context. No where did he say "Don't treat these people, it upholds their inability to deal with normal life."

He talks about a complex idea that might be hard for some people to comprehend.

 

[Flo]

This thread isn't about Walitt is it, we can discuss him and his theories in the NIH study thread.

This thread is about someone writing a tweet and then getting unreasonably attacked for it by James Coyne.

I think Coyne was way out of order even though i think there are better ways to communicate displeasure to the NIH than an angry tweet. I can't get upset about one tweet that i would never have read if it wasn't for this forum.
So i dont really mind what Jeanette did or didn't tweet, i do care that Coyne seems to have a very unreasonable side to him. I don't condone his behavior in this case at all. How do we know he isn't going to do this again as soon as someone says something he doesn't like ?

That was my first response that necessitated bringing the Walitt issue into this. Yes, Jeanette was upset by how Coyne insulted her about her insulting remarks about Dr. Walitt.

She insulted Dr. Walitt. I know you think it is fair to insult Dr. Walitt because ou think he is te enemy, but she insulted him and his work by comparing him to a cult leader. Look at ourselves, can't hwe say the same thing about ourselves? Look at this ME/CFS cult!

 

[duncan]

This is not a new idea. It's an old idea whose time came and went at our expense.

 

[Valentijn]

You are taking his remarks out of context.

His remarks are not being taken out of context, even if someone was roughly paraphrasing his general message instead of quoting word for word. But he does clearly say that:
1) Fibromalgia is not a disease, but is an abnormal interpretation of normal experience, and
2) It should not be treated.

 

[A.B.]

Let me clear this up: these ideas (psychogenic, mind over matter, etc) are rejected for several reasons.

They are an illusion, giving false hope and creating unrealistic expectations.

They are a sort of universal explanation, attractive because they can seemingly explain everything that isn't understood, especially if one suspends critical thought or has little knowledge on the subject.

They are actually contradicted by the biomedical literature. The US Institute of Medicine reviewed the scientific literature on ME/CFS and concluded that ME/CFS is a biological disease. To quote Ellen Clayton, chair of the committe responsible for this review: "We just needed to put to rest, once and for all, the idea that this is just psychosomatic or that people were making this up, or that they were just lazy".

They have not helped us. Many of us have actually tried these approaches. Patients who have tried them often realize that they were actually harmful in ways that are not immediately obvious.

You are entitled to decide for yourself whether this mind over matter stuff works for you or not. But don't come here insinuating that we are closed minded or have difficulties comprehending complex ideas just because we don't share your beliefs.

Finally, these ideas are not new. They are very old.

 

[Flo]

His remarks are not being taken out of context, even if someone was roughly paraphrasing his general message instead of quoting word for word. But he does clearly say that:
1) Fibromalgia is not a disease, but is an abnormal interpretation of normal experience, and
2) It should not be treated.

Val, that is just your interpretation of what he is saying and it is based on your bias.

He never once says it should not be treated. Why is he doing the research if he think it should not be treated? To prove that it should not be treated?

How would you explain these studies he has done?
http://www.cfsnova.com/sp-Walitt.html
"He has performed several investigator-initiated studies in fibromyalgia using neuroimaging techniques, neuropsychological instruments, gene expression analysis, and cytokine profiles as well as participated in several pharmaceutical trials for the treatment of fibromyalgia."

why would he do a study testing gabapentin?
http://www.ncbi.nlm.nih.gov/pubmed/24129853

Your remarks are sensationalistic and nonfactual.

 

[Flo]

If he says that there's an underlying biology that makes us misinterpret normal sensations then I'd like to see that. Could you point me towards it please? Was it in the video? And if so, do you remember what time?

http://www.meaction.net/2016/02/20/nih-lead-clinical-investigator-thinks-cfs-is-psychosomatic/
"The experience of fibromyalgia is very much real to the people who have it. The way that we think and feel is based in electricity and biochemistry of our brains and we don’t really understand how the physicality of that chemistry becomes our thoughts and feelings. 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.

The idea that the way that we think and feel should be affected by the goings and comings of our lives and the difficulties we have is something that seems self-evident, but also something that we like to pretend isn’t true.

We would love it if we could reduce all of these things to a simple pathway. You know, science has had all of its greatest successes in reducing problems to a single pathway, a single place and all the, you know, if you take diabetes, understanding the key role of insulin in diabetes, once that was understood, it transformed the whole illness and allowed for people to become better. The problem with things like fibromyalgia and other disorders that are of the neurologic systems of the brain is that the brain seems to have a duel existence. It exists both as a biological construct, but it also exists as sort of a psychological construct and we don’t really understand how the two go together yet, how they play together, how they sing together, how they work together–and so our attempts to alter biology without understanding the emotional overlay probably leads to a lot of failure. It speaks to our lack of understanding of how it really works."

I do not know how that could not be more clear that he see it as a biological disorder.

 

[Bob]

Walitt claims that ME its a 'somatoform' disorder which has a more specific meaning that a 'psychosomatic' disorder... To quote Wikipedia...

A somatic symptom disorder, formerly known as a somatoform disorder,[1][2][3] is a category of mental disorder included in a number of diagnostic schemes of mental illness, including the Diagnostic and Statistical Manual of Mental Disorders, (latest version DSM-5) used by most mental health professionals in the United States. The diagnosis requires physical symptoms that suggest physical illness or injury – symptoms that cannot be explained fully by a general medical condition or by the direct effect of a substance, and are not attributable to another mental disorder (e.g., panic disorder).[4]

So, first of all, a somatoform disorder is "a category of mental disorder". Secondly, ME can only be a somatoform disorder if it "cannot be explained fully by a general medical condition" and, seeing as ME is a (well defined) general medical condition (with observable biological abnormalities), it cannot be a somatorform disorder.

Included as types of somatoform disorders are 'mass hysteria' and:

• Conversion disorder: A somatic symptom disorder involving the actual loss of bodily function such as blindness, paralysis, and numbness due to excessive anxiety

• Illness anxiety disorder: A somatic symptom disorder involving persistent and excessive worry about developing a serious illness. This disorder has recently gone under review and has been altered into three different classifications.[citation needed]

• Body dysmorphic disorder: wherein the afflicted individual is concerned with body image, and is manifested as excessive concern about and preoccupation with a perceived defect of their physical appearance.

• Pain disorder

• Undifferentiated somatic symptom disorder – only one unexplained symptom is required for at least 6 months.

 

[Bob]

http://www.meaction.net/2016/02/20/nih-lead-clinical-investigator-thinks-cfs-is-psychosomatic/

"The experience of fibromyalgia is very much real to the people who have it. The way that we think and feel is based in electricity and biochemistry of our brains and we don’t really understand how the physicality of that chemistry becomes our thoughts and feelings. 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 do not know how that could not be more clear that he see it as a biological disorder.

Did you read the last eleven words in the above extract that you quoted? He clearly states that he isn't convinced that there is an abnormal biology. i.e. he claims that there might be no abnormal biology. That's the opposite of your interpretation of what he said.

He speaks in double-speak, and everything has double meaning, but his meaning is crystal clear in places. This is one of those places.

 

[A.B.]

I notice that people who find psychogenic theories attractive seem to consistently misunderstand them, even when it is repeatedly explained to them what is actually meant. They also tend to redefine words such as psychosomatic or somatoform to mean something other than what is written in medical dictionaries or manuals.

 

[leela]

Did you read the last eleven words in the above extract that you quoted? He clearly states that he isn't convinced that there is an abnormal biology. i.e. he claims that there might be no abnormal biology. That's the opposite of your interpretation of what he said.

He speaks in double-speak, and everything has double meaning, but his meaning is crystal clear in places. This is one of those places.

But @Bob my darling, we're just not intelligent enough to understand such complexity.

 

[sarah darwins]

On the other hand ...

If you can't explain it simply, you don't understand it well enough.

- Albert Einstein

 

[Bob]

He never once says it should not be treated. Why is he doing the research if he think it should not be treated? To prove that it should not be treated?

Actually, he has clearly said that fibromyalgia (and similar illnesses e.g. ME) cannot be treated, and that the physician should bear witness to the patient's experience rather than treating them.

We cannot know his motivation to carry out the research, so I'm surprised that you're asking.