Fibromyalgia syndrome—am I an autoimmune condition?, 2025, Goebel

[Utsikt]

Was mostly referring to rvallee, not you.

Thanks for clarifying.

 

[Jonathan Edwards]

Was mostly referring to rvallee, not you.

Richard can be blunt, and repeatedly so, to the extent of seeming rude.
But he has every right to be, and again and again because my colleagues need to be told just how badly they have failed to use their intelligence to address people's suffering. We are in this mess because the public have not called the bluff of the cosy biomedical science fraternity.

 

[rvallee]

In my opinion, the author is a really helpful ally to fms sufferers.
He could very well be one of the key persons in the Hunt for medication that will finally bring relief to patients.

Considering the track record of the author, I think it's really not fair to put him as a promoter of non scientific BPS ideology.
It's quite the opposite, he's one of the few people searching for a biomedical cure.
And with the UCB Trial and the auto antibody studies, he has achieved more for the patients than almost all other people in the field.

We need much better allies than this. Good intentions don't matter much here if it repeats the same old nonsense.

I'm all for anyone doing real biomedical research, but it's mutually exclusive with the traditional psychosocial speculation.

 

[rvallee]

Was mostly referring to rvallee, not you.

I understand what you're saying, and it's fair, but I don't mean to be negative for the sake of ranting. I've been seeing the consequences of this both-sideism for years and with millions of lives at stake, I do not have the patience or grace anymore to overlook it. This kind of speculation isn't just bad science, it's harmful.

Seeing it once or twice was getting too much, but at this point I've seen it hundreds of times and it goes back more than a century. None of this "the bio could be influenced by the psychosocial" has any chance of helping anyone. Rather it's the other way around: once the biology is figured out, it will make the psychosocial consequences completely vanish.

 

[voner]

I have been very sceptical about antibodies mediating "fibromyalgia" but I admit that it is a possibility, if perhaps in a subtle way (maybe analogous to the story we have suggested for ME/CFS). Unfortunately, I don't think passive transfer experiments are the best way to pin this down.

Jonathan, I am curious, what are the better/best ways to "pin this down"?

 

[Jonathan Edwards]

Jonathan, I am curious, what are the better/best ways to "pin this down"?

I think we need to define the hidden pathways in these illnesses and not get stuck with old ideas about autoimmunity. And then find a therapeutic experiment that produces a dramatic result that can easily be interpreted in pathway terms.

I suspect for fibromyalgia that there needs to be some serious attention to quality control in terms of patient selection. When it is claimed that *% of the population are affected you will be dealing with a mish mash of unrelated problems. I think Goebel appreciates this - he focuses on the very severe cases who may well have a specific immune problem. Genetic studies may be crucial. I suspect much the same exercise is needed as for ME/CFS - big studies with careful selection and learning from problems with recruitment.

If I knew the exact answer to the question I guess it would already have been set up!

 

[voner]

I think we need to define the hidden pathways in these illnesses and not get stuck with old ideas about autoimmunity. And then find a therapeutic experiment that produces a dramatic result that can easily be interpreted in pathway terms.

I suspect for fibromyalgia that there needs to be some serious attention to quality control in terms of patient selection. When it is claimed that *% of the population are affected you will be dealing with a mish mash of unrelated problems. I think Goebel appreciates this - he focuses on the very severe cases who may well have a specific immune problem. Genetic studies may be crucial. I suspect much the same exercise is needed as for ME/CFS - big studies with careful selection and learning from problems with recruitment.

If I knew the exact answer to the question I guess it would already have been set up!

I have always harbored the same thoughts about patient selection. Do you think there’s a patient continuum from fibromyalgia to ME/CFS or is it too hard to tell at this point in time?

 

[Jonathan Edwards]

Do you think there’s a patient continuum from fibromyalgia to ME/CFS or is it too hard to tell at this point in time?

I think the group of people with 'severe fibromyalgia' may well include a good proportion with some overlapping process also present in a number of people with MECFS. In the past I have found the category of FM so vague that I was not sure whether the name was much use or whether there was any identifiable 'core' group. I have reasons to think that there probably is, some of which I cannot really go into at present.