Conversation about Walitt (Split Thread).

[mfairma]

One of the biggest things that has always bedeviled the idea of participatory, democratic advocacy in this disease is the complexity and nuance of the issues, the widely varied understandings of patients, and the imperfect flow of information. New patients come into the community all the time without the understanding of context to judge. This is natural and not a failing, but it makes a mockery of the idea that successful advocacy will ever be democratic. In this issue, it is not necessarily unreasonable to reach the judgments Flo has, but if you have been around a while, you know that the BPS school have a certain playbook they use to obfuscate their true beliefs. They sand off the edges of their rhetoric and muddy the waters to make their ideas easier to swallow and more tricky to challenge. But, as someone else noted, it's just lipstick on a pig.

 

[Esther12]

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.

I don't know about fibromyalgia, but for ME I'm far from convinced that there's a current treatment that does more good than harm.

 

[Bob]

I don't know about fibromyalgia, but for ME I'm far from convinced that there's a current treatment that does more good than harm.

That may be the case for many patients, but Walitt's comments, as I interpret them, go way beyond highlighting the lack of universal treatments, but he casts the illnesses in the light of an untreatable hysteria. i.e. the patient can't be treated because the illness only exists in the patients' subjective belief system. I can't remember the exact details now, but I've commented on this in more detail elsewhere.

 

[Esther12]

That may be the case for many patients, but Walitt's comments, as I interpret them, go way beyond highlighting the lack of universal treatments, but he casts the illnesses in the light of an untreatable hysteria. I can't remember all the details now, but I've commented on this in more detail elsewhere.

Some of his other comments make me want to be less charitable in my interpretations, but it is hard to be certain with a lot of what he writes.

 

[A.B.]

The details about Walitt's belief system are ultimately irrelevant. The man is as inappropriate in a ME/CFS study as a HIV denier is in an AIDS study. That much is clear.

 

[TiredSam]

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

That is why I think this forum has issues, because it IS becoming more like a cult and less open to new ideas.

Pardon me for paraphrasing, but I think Walitt says something similar, like "our society is not good at accepting ..."

Why do I keep hearing remarks like "hard to comprehend", "not open", "not good at accepting " etc. etc. from people proposing belief systems for which there is no evidence (which I think justifies the cult reference by the way) - is it to imply that the proponents of such beliefs are blessed with unique insight and superior wisdom? I find this commonly used rhetorical device devoid of content and rather annoying. Walitt does it all the time, can't he just say what he has to say without elevating himself from the rest of society?

 

[Flo]

That may be the case for many patients, but Walitt's comments, as I interpret them, go way beyond highlighting the lack of universal treatments, but he casts the illnesses in the light of an untreatable hysteria. i.e. the patient can't be treated because the illness only exists in the patients' subjective belief system. I can't remember the exact details now, but I've commented on this in more detail elsewhere.

Again, no one has shown me where he says this cannot be treated.

 

[lansbergen]

Again, no one has shown me where he says this cannot be treated.

False illness believes can be treated by indroctination but that does not cure the disease ME.

 

[Flo]

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

Pardon me for paraphrasing, but I think Walitt say's something similar, like "our society is not good at accepting ..."

Why do I keep hearing remarks like "hard to comprehend", "not open", "not good at accepting " etc. etc. from people proposing belief systems for which there is no evidence (which I think justifies the cult reference by the way) - is it to imply that the proponents of such beliefs are blessed with unique insight and superior wisdom? I find this commonly used rhetorical device devoid of content and rather annoying. Walitt does it all the time, can't he just say what he has to say without elevating himself from the rest of society?

The reason why you might hear those things is that ideas that are outside of a paradigm are hard to comprehend, it is not that you or anyone else is stupid. It happens to everyone. 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.

The fact that nerve pain and anxiety would show up together is not an outlandish idea.

Waliit is not elevating himself, he is speaking a different language. It is like misinterpreting when a Brit asks you if you have a "fag". You could be insulted by that, or not, if you assume that maybe the speaker might be using a different language. This is what Conyer brings up as well. I am finding a high degree of sensitivity and "PC" in the ME groups.

The truth is that all of the current wisdom has yielded no results, and I hear Walitt speaking of new ideas. You may think they are the same old ones, and my mother went through all that, as well as me. So please do not think I ma new to this. My mother was in the Mayo clinic in the 90s getting pints of blood drawn to find out where her fatigue was coming from and she was one of the first to be unofficially diagnosed with the disorder. There were times when people said it was all in her head and there was nothing physically wrong with her, Walitt is not saying that at all hence the aggressive push back by Conyer when she called Walitt a cult leader.



Through the years I have gotten better, where through the years my mother got worse. I credit that to an understanding that is hard to explain but comes from an understanding of my genetics and how the experiential world (diet, stress, pollution) can effect neurotrasmission.

 

[Bob]

Again, no one has shown me where he says this cannot be treated.

@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.)

There are two videos of Walitt that I know about. The following is what I posted elsewhere about the less-circulated video...

www.youtube.com/watch?v=1DTwkooHUF8

The presentation has a mixed message, as usual.

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.

He discusses medication and says pharmaceuticals can be helpful, but shouldn't be the primary source of therapy or it will lead to failure, and that behavioural approaches should be the primary focus. He also advocates cognitive/behavioural therapies. He says the available drugs (e.g. gabapentin) give small benefit.

 

[Bob]

Again, no one has shown me where he says this cannot be treated.

Dr. Walitt: Well, as physicians, we have a limited amount of time in the office and our training is to use medications to deal with the problems that we see in front of us. And fibromyalgia as a disorder defies all of that. It requires a lot more time and medications do not work very well. And if you try to adhere to how we’ve been trained to treat people, you’ll inevitably fail.

 

[Bob]

Waliit is not elevating himself, he is speaking a different language.

As I pointed out earlier, you have misinterpreted what Walitt said.

As long-term ME patients, we understand the language: We are intimately familiar with the language because we've seen it all before.

 

[halcyon]

Again, no one has shown me where he says this cannot be treated.

This is not what people are saying. They are saying that Walitt believes it does no harm to leave patients untreated. It's straight from a slide from one of his talks:

 

[TiredSam]

The reason why you might hear those things is that ideas that are outside of a paradigm are hard to comprehend, it is not that you or anyone else is stupid. It happens to everyone. 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.

Well that's two more examples right there - "ideas that are outside of a paradigm are hard to comprehend" indeed. Also refering to someone who doesn't accept your viewpoint as "sensitive to being associated with any mental health problems". This tired old line is nonsense - by reading this forum you'll come across many posters who are quite open about their mental health issues and medication.

Waliit is not elevating himself, he is speaking a different language. It is like misinterpreting when a Brit asks you if you have a "fag". You could be insulted by that, or not, if you assume that maybe the speaker might be using a different language. This is what Conyer brings up as well. I am finding a high degree of sensitivity and "PC" in the ME groups.

Well I'm glad you can understand Walitt's different language. The problem is that if he keeps borrowing terms from the English language, medicine and science his audience will expect those terms to have their established meaning. Reducing the dialogue to a semantic bickering session along the lines of "what I mean when I say X is Y" is another annoying rhetorical smokescreen I don't have much patience for. I don't believe that the reason I don't agree with Walitt is because I lack a necessary education to give me an understanding of the wisdom of his words. He is in effect saying "this stuff is too clever and complicated for most people", but the problem is that there are a lot of very clever people around who can see that what he's saying makes no sense whatsoever.

The truth is that all of the current wisdom has yielded no results

Nobody is claiming to have any current wisdom except Walitt and his ilk. All other researchers are accepting what they don't know and working on finding out. It's only Walitt and co who have their feet up on the desk saying "finished, we've cracked it" and then refusing to give a credible explanation except that they're very wise.

 

[Esther12]

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".

 

[Bob]

The reason why you might hear those things is that ideas that are outside of a paradigm are hard to comprehend, it is not that you or anyone else is stupid. It happens to everyone. 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.

I don't think anyone has a problem with the idea of comorbid mental health issues being associated with chronic illnesses including ME. The problem arises when people try to define ME as a primary psychiatric disorder, despite the evidence, and despite the testimony of patients. If you read the IOM report that will give you some insight into the issues.

 

[Esther12]

I've not been able to follow this thread closely, but always appreciate having a range of perspectives, and realise that putting forth a minority view can feel difficult. imo it's best to not worry about whether other people like what you're saying or not, but focus on trying to make sure that what you say is reasonable and supported by the evidence. Having lots of people disagreeing with you can be helpful for that.

 

[Bob]

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 too 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?!?

 

[Karena]

Well that's two more examples right there - "ideas that are outside of a paradigm are hard to comprehend" indeed. Also refering to someone who doesn't accept your viewpoint as "sensitive to being associated with any mental health problems". This tired old line is nonsense - by reading this forum you'll come across many posters who are quite open about their mental health issues and medication.

I agree that this is nonsense. Mental illness is not a mystery. If we all suffered from well-established mental problems, we would probably be receiving treatment. Given the success of psychotropic drugs and therapy, many of us would probably feel better and be able to do more than we're doing now. Of course, we would have other challenges. But the medical community and society in general might be more sympathetic to us.

The issue isn't that I'm sensitive about being diagnosed as mentally ill. The problem is that diagnosis is wrong. And if the diagnosis is wrong, then treatment will be wrong, too. My CFS/ME started with a flu-like illness and pneumonia. I continue to have physical symptoms that are caused by whatever is wrong with my body.

In the 25 years I've been sick, I've tried Walitt's approach. I've tried to be positive and to pretend nothing's wrong with me. It doesn't work. I end up making myself sicker and being able to do less the next day, the next week, etc.

We need researchers who believe us and will take our complaints seriously--not those who view us as less deserving of their time and treatment.

 

[Bob]

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".

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

As an example, I recently had a consultation with a rheumatologist at my local hospital, thinking that (as as a specialist who deals with autoimmunity and fibromyalgia) he might be sympathetic to a complication that I'm experiencing that seems like an auto-immune issue to me. After all my standard blood tests were normal (of course) he said there was nothing he could treat, and then suggested that I see a psychiatrist because he thought that fibro and ME are psychiatric disorders. (This is the person who I thought is supposed to be the local fibro specialist.) Fair enough, he explained that he hadn't had any success treating fibro patients with experimental treatments when he was a trainee working under a consultant who was willing to treat fibro. But I wasn't asking him to treat the ME, but to consider a possibly separate illness. His bias against treatment meant that he was unwilling to consider that I had anything other than a psychosomatic disorder.

I couldn't quite believe what I was hearing, and yet I could believe it: He was embodying the worst stereotype, and actually expressing his ignorant thoughts out loud. I never thought I'd see such ignorance and discrimination expressed out-loud so blatantly in a medical situation.

I believe that his bias towards ME and his bias against treating ME patients meant that he wasn't willing to consider my complication/symptoms as a serious issue that merited serious medical attention.

In my case, my complication is causing me all sorts of problems and I would argue that I am being harmed by it being left untreated.