Conversation about Walitt (Split Thread).

[Esther12]

For me, the former is extremely problematic and central to our experience as patients. Such an attitude reflects ignorance and bias and causes bias.

To me, an assumption that you should be referred for psychiatric treatment would sound like a misplaced faith in treatment, rather than a belief that it's okay to not offer any treatment.

I'd have much rather had no treatment than the biopsychosocial management I did have.

 

[Stewart]

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

@Flo - I think you're partially right to point out that this is Val's interpretation of Walitt's comments (and a lot of other people's interpretation if this thread is anything to go by) but you seem to be missing the point that *your* interpretation is just your interpretation as well.

You're right to say that Walitt is talking about complex ideas, but the problem is that he's doing so in an incredibly unclear and inconsistent fashion and he consequently leaves his beliefs open to wildly different interpretations. I can't say for certain that your interpretation is definitely wrong - but then I can't say that Valentijn's interpretation is definitely wrong either. And frankly I find that concerning. If Walitt really does believe in a biomechanical explanation, as you've interpreted his comments to mean, I don't see why he's chosen to use so much terminology that obscures the point he's trying to convey. And if he's talking about a complex idea as you suggest, surely he needs to make a greater effort to clarify what he means and ensure that he can't be misunderstood. He must know that fibromyalgia (like ME) is a highly-charged topic and that consequently there's a heightened need for clarity when discussing it.

It could be that Walitt is just a poor communicator and that he's naturally inclined to give round-about answers to questions that could be dealt with more straightforwardly. Or it could be that he's being deliberately evasive to try and mask his true beliefs about the somatoform nature of the condition (which is, as mfairma has already pointed out, a classic strategy of the BPS school). Having watched his interviews I'm more inclined to lean towards the first explanation - but this could easily be a mistake on my part.

I appreciate that it must be difficult to be the only person in a discussion expressing a particular point of view, and I hope you don't take it personally Flo. The problem is that Walitt hasn't been as precise about his views as he should have been, and there's a need for the issue to be cleared up. Until that happens we're all trying to stitch together a bunch of seemingly contradictory comments and make some sense out of them.

 

[leela]

Notice in the video, when Walitt is asked "What is fibromyalgia?", he doesn't simply say "A pain disorder of unknown cause". Because that would be to easy.

Instead, he says: "That’s a hard one [...] 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. Is it a disease or is it a normal way that we handle and are supposed to work is still to be determined. But it’s quite possible that the tricky way that the brain works is that we may create symptoms as part of how we are supposed to operate, as opposed to this representing the system breaking down."

Eh, what?!?

God, imagine if this was the reply to the question "What is ALS?"
Yes, it's true! ALS is a way people experience pain in their body! And guess what, it changes the way you "interpret" your body, and the "problems" of the body, and the (new) problems in your life thanks to ALS! Right again! And yes, we have to experience ourselves differently when we have ALS because of the way societies "tell" us how to experience things! Bingo! It all comes together to create a unique experience in different points in time and right now that experience is ALS. Is it a disease or is it a normal way that we handle/are supposed to work? Well it's the new normal now, it's ALS!
Yeah, the brain is tricky, and now that I have ALS, oh yay, it's just the way I'm supposed to operate, not my bodily systems breaking down. So, jolly good, no need to address it, just listen to me, dear doctor, and I'll be able to enjoy this new and unique experience of normal/ALS.
(I don't have ALS. I'm making a point.)

It is no less appalling to be saying this babble about Fibro or ME. It is such cleverly disguised word salad; there is truth in it from a very specific but absurdly limited vantage. He is juggling legitimate words and specific concepts like a stoner with a hackeysack, and making wildly inappropriate and inaccurate conclusions.
These have no place in a biomedical study at NIH.

These statements would make him a laughing stock if he had said it about ALS or MS or AS.
It is only the shameful history of derision of ME and Fibro that allows him to say that publicly and not be pilloried for medical bigotry.
Medical bigotry couched in "compassionate new age speak" is still medical bigotry.

 

[Valentijn]

Right now in ME there is a sensitivity to being associated with any mental health problems, yet the evidence shows there is a high occurrence of the two showing up together.

First, I would disagree regarding any such "sensitivity." There's been at least one study showing that ME patients have no bias against mental illness anymore than the general public does.
Wood B, Wessely S. Personality and social attitudes in chronic fatigue syndrome J Psychosom Med 1999:47:385-397

Additionally, the evidence regarding the rate of mood disorders in ME patients is of very poor quality. The standard approach has been to use instruments such as the Hospital Anxiety and Depression Scale (HADS), where disability is equated with depression.

Another unfortunate trend has been to ignore the official cut-off points of such scales, and simply compare raw scores between patients and healthy controls. Hence a patient group scoring a bit higher is said to be more depressed, even if their scores were not high enough to qualify for a diagnosis of depression.

Dr. Walitt used such an approach in his recent paper attempting to link genetic expression with catastrophization about symptoms in FM patients. The creators of the catastrophization scale clearly state in the user's manual that a score of 30 or higher qualifies as catastrophization. Yet Walitt et al proclaimed a score of 16 represents "high catastrophization" for the purposes of their study.

The concern isn't only about the beliefs of investigators, but the inappropriate methodology which they are willing to use to generate data which appears to support their beliefs. In this case, they also used only 9 patients, selected from a much larger study with no explanation for the process used, and they compared levels of 47,000 transcripts (mostly from known genes). Of course, there was no way to get statistical significance with that many comparisons being made between the groups of 4 and 5 FM patients, so they didn't bother to correct for making multiple comparisons at all.

He's done similar things in other trials, such as declaring brain fog (cognitive dysfunction) doesn't actually exist in FM, based on a single non-standard form of a test in a small group. Never mind that there are probably dozens of types of cognitive dysfunction which are assessed with a wide range of tests!

@Valentijn's quotes demonstrate quite clearly that Walitt doesn't consider ME/fibro to be illnesses, but considers the conditions to be misinterpretations of normal sensations. (If you don't have an illness then obviously you can't be medically treated.)

A slight clarification regarding the language usually used by Walitt & Co. FM, ME, etc, can be illnesses, because they define illnesses as being a subjective experience. But he denies that they are actual diseases, due to his perceived lack of pathology or biological abnormalities.

 

[chipmunk1]

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.

In this video (at 98 mins) he asks if fibromyalgia is a neurologic disease or a "social-cultural construct ..that are shaping and creating these experiences". Note that he doesn't state that this is his opinion.

It sounds very much like he believes it is Bio Psycho Social. That means: Don't worry about biology get the patient to do some psychotherapy.

 

[chipmunk1]

Dr. Walitt used such an approach in his recent paper attempting to link genetic expression with catastrophization about symptoms in FM patients. The creators of the catastrophization scale clearly state in the user's manual that a score of 30 or higher qualifies as catastrophization. Yet Walitt et al proclaimed a score of 16 represents "high catastrophization" for the purposes of their study.

Is this this scale?

https://en.wikipedia.org/wiki/Pain_catastrophizing

Pain catastrophizing scale[edit]

1. I worry all the time about whether the pain will end. (H)
2. I feel I can’t go on. (H)
3. It’s terrible and I think it’s never going to get any better. (H)
4. It’s awful and I feel that it overwhelms me. (H)
5. I feel I can’t stand it anymore. (H)
6. I become afraid that the pain may get worse. (M)
7. I think of other painful experiences. (M)
8. I anxiously want the pain to go away. (R)
9. I can’t seem to keep it out of my mind. (R)
10. I keep thinking about how much it hurts. (R)
11. I keep thinking about how badly I want the pain to stop. (R)
12. There is nothing I can do to reduce the intensity of the pain. (H)
13. I wonder whether something serious may happen. (M)

(Note: For the listed items above, (R) Rumination, (M) Magnification, and (H) Helplessness.)

This sounds mostly like normal responses to being in severe (chronic) pain but no it's a psychological illness?!

If you think this is weird it gets even better:

With minimal modification, to address the subject of the catastrophizing, the PCS can also be applied to pain catastrophizing in a social context. The social aspects studied were parents of disabled children and spouses of individuals with chronic pain. Specifically it has been shown to determine illness related stress and depression issues that arise from parent’s catastrophizing about their child’s pain in regards to a disability or illness.[9] Similarly with respect to pain catastrophizing between romantic partners, spouse catastrophizing about a partner’s chronic pain was related to depressive and pain severity levels in both spouses.

It is generally assumed that the tendency to catastrophize plays a causal role in the pain experience - that is, it causes the person to experience the pain as more intense. One suggestion is that catastrophizing influences pain perception through altering attention and anticipation, and heightening emotional responses to pain.[2] However, we cannot yet rule out the possibility that at least some aspects of catastrophization may actually be the product of an intense pain experience, rather than its cause

, to date, there have been no studies that meet the usual standards required for medical treatment intervention studies (for example, where patients are randomly allocated to a treatment or an appropriate control condition, and patients are unaware of which condition is expected to be associated with the better outcome

 

[Valentijn]

Is this this scale?

https://en.wikipedia.org/wiki/Pain_catastrophizing

Yup, that's the one. The manual as at http://sullivan-painresearch.mcgill.ca/pdf/pcs/PCSManual_English.pdf

This sounds mostly like normal responses to being in severe (chronic) pain but no it's a psychological illness?!

Exactly. And the scale's creators attempted to take that into account, by calibrating it based on the responses of 851 injured workers. The average score is 20.9, so based on Walitt & Co's threshold of 16, most people are catastrophizers when injured.

I don't think catastrophizing is a useful concept, nor that any scale is going to provide proof of it. But at least the scale's creators put some effort into ensuring they wouldn't label everyone who was merely in pain.

 

[chipmunk1]

Yup, that's the one. The manual as at http://sullivan-painresearch.mcgill.ca/pdf/pcs/PCSManual_English.pdf

Exactly. And the scale's creators attempted to take that into account, by calibrating it based on the responses of 851 injured workers. The average score is 20.9, so based on Walitt & Co's threshold of 16, most people are catastrophizers when injured.

I don't think catastrophizing is a useful concept, nor that any scale is going to provide proof of it. But at least the scale's creators put some effort into ensuring they wouldn't label everyone who was merely in pain.

That would have been too obvious. The victims are recruited from the subset that suffers the most.

 

[chipmunk1]

When i am doing a Google search for medical illnesses i am getting these new boxes on the right.

https://www.google.com/#q=fibromyalgia

here is what it says:

Very common
More than 3 Million US cases per year
Can't be cured, but treatment may help
Requires a medical diagnosis
Lab tests or imaging rarely required
Chronic: can last for years or be lifelong
Fibromyalgia is often accompanied by fatigue and altered sleep, memory, and mood.
Widespread muscle pain and tenderness are the most common symptoms.
Medications, talk therapy, and stress reduction may help control symptoms

I have known a person with severe fibromyalgia. They can be in so much pain that they are unable to move.They can be severely disabled.

It can be controlled with talk therapy and stress reduction? Why do they believe that?.

 

[lansbergen]

It can be controlled with talk therapy and stress reduction? Why do they believe that?.

Stuck in the denial phase because they have not experienced it?

 

[chipmunk1]

This is from the pain catastrophizing scale manual:

Pain Catastrophizing
The Construct
In ‘Sur L’eau, novelist Maupassant (1875) writes,
“Migraine is atrocious torment, one of the worst in the world, weakening the nerves, driving one mad, scattering one’s thoughts to the winds and impairing the memory. So terrible are these headaches that I can do nothing but lie on the couch and try to dull the pain by sniffing ether.

Maupassant’s words describe the torment of his pain, his emotional distress, and the disability that pain brings to his life. He feels overwhelmed by his pain, and helpless to deal with it. He surrenders to the pain, and seeks chemical means of dulling it. Today’s specialists on the psychology of pain would argue that Maupassant’s ‘catastrophic thinking’ about his pain likely played a role in heightening the intensity of the pain he experienced.

I just happen to have one of the worst migraine headaches that I had in a few months. It is as painful as described here. I can hardly read, think or do anything. Even reading is tremendously painful and hurts my eyes which are quite impaired.

I am not 'catastrophizing'.

There is no way that changing my attitude would lead to much improvement.

WIth fibro i am sure it's no different. Shame on these 'catastrophizing' scales.

 

[OhShoot]

A slight clarification regarding the language usually used by Walitt & Co. FM, ME, etc, can be illnesses, because they define illnesses as being a subjective experience. But he denies that they are actual diseases, due to his perceived lack of pathology or biological abnormalities.

I loved the part in the first video that was posted where he defined disease as sickness and illness as something atypical but normal after he called diabetes an illness and said that fibro hasn't found its insulin yet.

Yes, their lack of ability to produce sufficient insulin could be considered "atypical" (not "normal" though? how are we even defining normal here? it can't mean that the majority of people experience it...). But it causes lots of bad things to happen in their body, so doesn't that make it a sickness?

But what else can we then describe as "atypical but normal"?? MS? Lupus?

But if this "atypical-but-normal-ness" makes one not healthy, therefore, being unhealthy is normal.

And here I thought the whole point of being a doctor was to encourage health...?

 

[alex3619]

In my opinion Walitt is using deliberately obfuscating language. It is not complex so much as vague and misleading.

Ditto. Or rather he chooses to use vague and obfuscating language rather than simple and direct language.

 

[jimells]

I don't have a problem with "It does not cause patients harm to be untreated", but am much more concerned with "Encourage patients to carefully consider changing their life narrative".

If my current primary care provider, who believes my illness is "primarily psychological", refuses to renew my prescriptions for Imitrex (migraine abortive), Florinef (for low blood volume), atenolol (adrenergic receptor antagonist), and trazadone (I use it for its alpha adrenergic receptor antagonist property) I would not be able to stand long enough to prepare even one simple cold meal per day.

That looks like harm to me.

 

[alex3619]

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.

This IS very clear. He is indulging in a psychobabble explanation. He is a dualist on theory of mind. This unfounded hypothesis is where bad psychiatry likes to hide, but also bad neurology. Charcot was the founding father of both professions, and he definitely was into some weird things, like mesmerism. Freud was the most famous student of Charcot.

I do not doubt most psychiatric illnesses are physical, though not always in the brain, just affecting the brain (such as infections that interact with the brain and can cause depression). I also think some abnormal behavior is due to false belief systems. I note this is behaviour, not illness. I find it weird that people will barrack for their favourite sports team based on geography and who their friends support. That is not a disease however, nor even an illness. This is when calling something a cultural phenomenon has some merit. I suspect its a form of modern tribalism.

The reason that I think this kind of explanation has appeal is that its a mismash of half-truths. The bits, isolated and considered separately, kind of look OK. Yet when added up its more like a religious statement than a scientific one, and without the moral imperative many religious statements have.

These statements need serious disambiguation between what is neurological, and what is psychological, and what is hypothetical psychiatric claims.

I repeat again, something I have probably said more than a hundred times, the list of diseases claimed as psychiatric and disproved is HUGE. Starting with tuberculosis. The number of diseases where these claims have been proved is .... [crickets chirping].

That does not mean that I can guarantee that some such disease claim will never be proven. It might. Its just never happened and the evidence for it is terrible, and the reasoning is irrational. It basically amounts to what I consider one of the worst forms of reasoning I see generally, in various guises. It might be true, therefore it is.

It might be demonic possession. We need an exorcism.

It might be witchcraft. Burn the consort of Satan.

It might be aliens. Blame everything on those beings from some place far away. There is nothing you can do though, go home and get drunk.

It might be drugs in the water supply. We need to expose the conspiracy.

MIght be can be a place to start rational inquiry, and this can be good. When accepted as truth its dangerous. A point of science is to investigate and remove falsehoods. A point of psychobabble seems to be to justify their claims without proof.

In case anyone is of any doubt I am a monist on theory of mind. The words "psychosomatic" and "mental" and "mind" are deceptive. Just because you put a label on something does not mean you understand it. Indulging in such thinking confuses the debate - its a huge failing in psychiatry.

 

[Snowdrop]

Right now in ME there is a sensitivity to being associated with any mental health problems, yet the evidence shows there is a high occurrence of the two showing up together.

To the above quote you can read this:

http://forums.phoenixrising.me/inde...-have-normal-mental-health.43505/#post-704928

It's been my experience over the many years I've given it thought that there is often a conflation of things that get lumped together as depression or a more general 'mental health problems' I can't count the number of times I've heard someone say that PwME are sensitive about this.

So let's get it clear. We are not. We simply don't see how giving us an irrelevant diagnosis is going to be useful for anything.
I support mental health advocacy. I believe in rights for those with mental health issues.

The conflation to me is this. There is biochemical mental health issue the one where some form of biological treatment is warranted and may include help with thought processes. Then there is low mood/depression due to circumstance. This can often resolve over time without treatment. One learns to adjust, adapt, to find ways of coping in the circumstance. Sometimes it helps to have someone trustworthy to talk to--they don't have to have a diploma--or need to be paid--unless there is no-one else. This type of low mood/depression I expect is experienced by many with chronic health problems including PwME.

In fact after many years I've come to thing that it's actually the mildly affected most at risk. Those who are severely ill discover the hard way (usually) that they cannot muscle the illness into submission. They must truly face that life has changed. For the mildly affected they can hope to overcome that things can change but when things don't it's not necessarily clear why.

I would expect that nigh on everyone experiences low mood or an acute depression at some point in life so if this is your meaning then saying there's a co-relation really has no validity since the same can be said of the gen-pop.

There are some strong co-relations for PwME. they would be--dysautonomia, fibromyalgia and perhaps other autoimmune illnesses.

As for Walitt--what others here have said. He is not a friend to PwME.

In your comments I think you were meaning to refer to James Coyne.

 

[Snowdrop]

The Changing Nature of Fibromyalgia
Frederick Wolfe and Brian Walitt
Walitt.pdf



From the document:
"The evidence for a psychocultural disorder is strong."

Walitt seems to have been cagey right from the start. Being younger he was maybe more aware of his statements having easy public access as opposed to those who were used to thinking of accessibility in less broad terms.

But if you go back far enough you can probably find less cautious statements.

 

[chipmunk1]

Evidence shows that fibromyalgia is not a categorical disorder, but rather a dimensional condition that represents the end of a spectrum of polysymptomatic distress. Fibromyalgia is closely allied and often indistinguishable from neurasthenia, a disorder of the late 19th and early 20th century that lost favor when it was perceived as being a psychological illness. Fibromyalgia is also associated with psychological illness and socio-demographic disadvantage. However, its 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, Pharma, disability access, and the legal and academic community

Pain and symptoms, even in psychocultural disorders, must be expressed through neurobiologic mechanisms, which are only touched on briefly here, but will be the subject of a future article

Why fibromyalgia succeeded The primary requirement for the success of psycho-cultural illness is that it must not be perceived as being psychological (not real). Disorders that are primarily psychogenic attract societal attention and disapprobation, particularly when they ask for social advantage or disability pensions. 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 into 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 behind fibromyalgia and fought against the idea of a psychogenic illness.

This is Bio-Psycho Social Psychobabble. Psychological disorders influence biology which leads to symptoms.

Maybe someone should tell Wallit that Engel's BPS model was based on a fictional patient. This is not evidence based medicine or science.

So sad.