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

V

voner

Senior Member (Voting Rights)
This is disapointing…

…"This implies that experience of trauma and distress might elicit a specific immune-biological response in genetically or otherwise (eg, past infection, toxicity, trauma) vulnerable individuals, which includes the production of harmful noninflammatory autoantibodies." …

Fibromyalgia syndrome—am I an autoimmune condition? - PMC

Either the majority or all patients with severe fibromyalgia syndrome harbour proalgetic serum-immunoglobulin G autoantibodies; their possible relevance for patients must now be established through clinical trials. Keywords: Fibromyalgia syndrome, ...
pmc.ncbi.nlm.nih.gov pmc.ncbi.nlm.nih.gov

Abstract
Assessments of serum-autoantibodies in fibromyalgia syndrome (FMS) date back to the 1980s and have yielded inconsistent results. Based on a new passive transfer paradigm, since 2021 causative involvement of immunoglobulin G–mediated autoimmunity in severe FMS has been demonstrated in several studies, which have included UK, Swedish, and Canadian patients. These findings open the path to the development of novel diagnostic and immune-therapeutic approaches.

Autoantibody targets and downstream mechanisms and the molecular processes that translate infection-, toxicity-, or stress-triggers into the FMS immune response in genetically or otherwise vulnerable individuals require study. These results in FMS also suggest that other chronic pain conditions or nonpainful symptom-based disorders may similarly be caused by noninflammatory minimally destructive autoantibody-mediated autoimmunity, thus offering hope for large groups of patients.
 
Last edited by a moderator:
I think it’s worth pasting the entire section (line breaks added). I’m putting it in plain text to make it easier to quote.

4.4. Triggers and the biopsychosocial dimension
If FMS is autoimmune, then it has “special” features. The recognition of biopsychosocial triggers to the onset of FMS59 implies that a substantial group of patients, although not all and perhaps not the majority, have experienced severe distress before FMS onset. The sensitive nature of such a link, which can and commonly does lead to misunderstanding and stigmatisation, has been discussed.12

Clearly, FMS does not develop in everybody who experiences severe distress, so that other factors must also play a role. At the same time, more fundamentally the recognition of a likely trauma/distress-trigger in a subgroup of patients with FMS, together with the described autoantibody findings now positions any distress-FMS relation into a new context.

This implies that experience of trauma and distress might elicit a specific immune-biological response in genetically or otherwise (eg, past infection, toxicity, trauma) vulnerable individuals, which includes the production of harmful noninflammatory autoantibodies. More studies are needed to confirm this.

Similar sequences from distress experience to disease phenotype are of course known from other autoimmune disorders,2,24 but in FMS, this phenomenon might be particularly common; in addition, FMS is also a much more common condition than “classical” autoimmune disorders; hence, any such relation should perhaps more acutely lead to considerations of preventative approaches.

Alternative primary triggers for the immune reaction leading to FMS might include infection, such as after COVID19 exposure26,36 or toxicity, such as after fluroquinolone medication.3 Other patients may develop the condition spontaneously, without any trigger.

Understanding autoimmunity in FMS should help us to better understand our human nature and how profoundly, truly biopsychosocial we in fact are. A debate about the additional importance of preventing toxic distress and how early preventative interventions might be designed and implemented would be welcome.
 
Utsikt said:
I do not understand why there even is a focus on severe distress. Surely, it would be more productive to focus on the factors that seem to always be involved, and what can be done to fix it?
Click to expand...

I agree. It looks as if this is a review prompted by a journal special issue. It does not seem to raise anything very new.

They suggest that psychosocial aspects apply to other autoimmune conditions but the two examples are unconvincing. One is alopecia areata, which is pretty much on the fringe of autoimmunity I think. The other is lupus, where there is a paper suggesting an increased coincidence with 'PTSD'. That doesn;t mean there is a link between trauma and lupus. It just means that fed up ill people with lupus probably score enough on diagnostic criteria for PTSD a bit more often = unsurprisingly.

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.
 
Study results are out for the auto antibody study.

ClinicalTrials.gov

www.clinicaltrials.gov www.clinicaltrials.gov

Couldn't find an associated paper.
Seems FIQR was the significant outcome the press release of UCB spoke about?

Not significant in a useful way though, but statistics was also very low.
And it's questionable if 12 weeks are enough to see an effect depending on the causing mechanism.

I think this is one of the studies where a negative or close to negative outcome doesn't really tell us anything about the probability of the theory behind being true. especially considering the mechanism behind the drug which only reduces igg down to about 20 percent I think.

Sorry for the spelling I need to use voice input.
 
Last edited:
Absolutely zero attempt at making sense of what the pieces of the puzzle are. This is basically the equivalent of a baby chewing on one of the pieces and drooling on the others.

It basically just reads as some attempt to promote biopsychosocial ideology, with fibromyalgia tucked in as an afterthought.

I don't get it, what is even the point of paying for this expensive process, then paying for employment, when this is the nonsense they do with it?
 
rvallee said:
Absolutely zero attempt at making sense of what the pieces of the puzzle are. This is basically the equivalent of a baby chewing on one of the pieces and drooling on the others.

It basically just reads as some attempt to promote biopsychosocial ideology, with fibromyalgia tucked in as an afterthought.

I don't get it, what is even the point of paying for this expensive process, then paying for employment, when this is the nonsense they do with it?
Click to expand...
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.
 
Kronos said:
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.
Click to expand...
I think we should take the actions for what they are: the current article contains completely unevidenced speculation about psychosocial factors. Therefore, he is currently promoting non-scientific BPS ideology, and he should be critiqued for it just as everyone else that does it.

It could also be argued that it’s even worse when it’s endorsed by them, because it normalises and legitimises it.
 
I thought you were supposed to catch ME from distress and FMS from a car crash? That’s why my early diagnosis was so difficult, divorced parents and been unharmed in a car accident a month before, so it was hard to choose. Maybe they should have brought in a tarot reader.
 
Hutan said:
A Proof-of-concept Study to Evaluate the Efficacy and Safety of Rozanolixizumab to Treat Adult Study Participants With Severe Fibromyalgia Syndrome

We have a thread on the protocol here:
Protocol: A Proof-of-concept Study to Evaluate the Efficacy and Safety of Rozanolixizumab to Treat Adult Study Participants With Severe Fibromyalgia Syndrome
Click to expand...
I was searching for that thread shortly but couldn't find it.
Unfortunately I have huge trouble with using my arms, so I chose to post it here because I already did too much.
 
Utsikt said:
I think we should take the actions for what they are: the current article contains completely unevidenced speculation about psychosocial factors. Therefore, he is currently promoting non-scientific BPS ideology, and he should be critiqued for it just as everyone else that does it.

It could also be argued that it’s even worse when it’s endorsed by them, because it normalises and legitimises it.
Click to expand...
Sometimes it is not the best strategy to be on one side 100 percent if you want to persuade other people.
I have read several articles of him, with one explicitly set against the BPS argument within the same paper. It was a two opinion piece.
 
Kronos said:
Sometimes it is not the best strategy to be on one side 100 percent if you want to persuade other people.
I have read several articles of him, with one explicitly set against the BPS argument within the same paper. It was a two opinion piece.
Click to expand...
The purpose of doing science isn’t to persuade, it’s to understand and explain the world. We can’t compromise on scientific principles just because some people are unwilling to accept reality.

And if he has previously argued against his arguments in section 4.4, it’s even worse because it implies that he has changed his mind.
 
Utsikt said:
The purpose of doing science isn’t to persuade, it’s to understand and explain the world. We can’t compromise on scientific principles just because some people are unwilling to accept reality.

And if he has previously argued against his arguments in section 4.4, it’s even worse because it implies that he has changed his mind.
Click to expand...
I just don't find his comments in that section too bad. It's still on the biomedical side. He also says it may not be the majority.

I mean it's questionable if there's evidence, but assuming that some traumatic event can lead with a variety of other factors to triggering an immune event is not completely off the table. That doesn't change the fact that The resulting immune event like auto antibodies cannot be treated with any BPS intervention. And that is the main point. Stress and traumatic events is associated to cardiovascular disease but no cardiologist would say that cardiovascular disease should mostly be treated with psychology.
 
Kronos said:
I just don't find his comments in that section too bad. It's still on the biomedical side. He also says it may not be the majority.

I mean it's questionable if there's evidence, but assuming that some traumatic event can lead with a variety of other factors to triggering an immune event is not completely off the table. That doesn't change the fact that The resulting immune event like auto antibodies cannot be treated with any BPS intervention. And that is the main point. Stress and traumatic events is associated to cardiovascular disease but no cardiologist would say that cardiovascular disease should mostly be treated with psychology.
Click to expand...
This is the start:
If FMS is autoimmune, then it has “special” features. The recognition of biopsychosocial triggers to the onset of FMS59 implies that a substantial group of patients, although not all and perhaps not the majority,
Click to expand...
There is nothing «special» about FMS with regards to BPS. It isn’t questionable if there is evidence for BPS triggers. There is no evidence for that because the studies are terrible.

This is from the conclusion of source he cites:
Data linking trauma to the emergence of FM is by nature of limited quality; obviously this domain of medicine will not be investigated by randomized control trials. Nevertheless, the cumulative retrospective data reported in this communication indicates the presence of a significant association between prior physical or psychological trauma and the subsequent development of chronic widespread pain and FM.
Click to expand...
First of all, they recognise themselves that the quality of the data is bad. Secondly, and of way more importance, they talk about an association. But Goebel describes it as a «trigger», i.e. a cause. You can’t get causation from correlation.

Which makes it even worse than I originally thought - Goebel is lying about what the source says in order to create a narrative about how «special» FMS is.
 
Last edited:
Utsikt said:
This is the start:

There is nothing «special» about FMS with regards to BPS. It isn’t questionable if there is evidence for BPS triggers. There is no evidence for that because the studies are terrible.

This is from the conclusion of source he cites:

First of all, they recognise themselves that the quality of the data is bad. Secondly, and of way more importance, they talk about an association. But Goebel describes it as a «trigger», i.e. a cause. You can’t get causation from correlation.

Which makes it even worse than I originally thought - Goebel is lying about what the source says in order to create a narrative about how «special» FMS is.
Click to expand...
I agree that if you consider the hard scientific facts, this discussion is very questionable if not meaningless due to lack of data and evidence.

But maybe I'm just disillusioned by medicine too much such that this article doesn't come off too bad.
Medicine really is a soft science and like you I can't fathom the significant unscientific nature of medical research.

However, I just want to warn being too negative to authors. AG will probably not read this forum, but people have been doing similar things responding to Twitter accounts of scientists. I would not wonder if some researchers would loose enthusiasm reading quite harsh comments.
And that would not be helpful for us. You can find similar controversial statements for people like scheibenbogen. In The BPS direction but also The other direction.

---

Wonder what this means

"This article was written by A.G. in preparation for a debating exercise."
 
Kronos said:
Medicine really is a soft science and like you I can't fathom the significant unscientific nature of medical research.
Click to expand...
That is no excuse for not adhering to the basic principles of science.
Kronos said:
However, I just want to warn being too negative to authors. AG will probably not read this forum, but people have been doing similar things responding to Twitter accounts of scientists. I would not wonder if some researchers would loose enthusiasm reading quite harsh comments.
And that would not be helpful for us.
Click to expand...
I don’t think my comments have been unkind or unnecessarily severe. They have been negative about one particular section of the paper because that section is completely unscientific, and it gives credibility to a harmful narrative.
Kronos said:
You can find similar controversial statements for people like scheibenbogen. In The BPS direction but also The other direction.
Click to expand...
And they are also criticised for that.

I understand that receiving critique about your professional work can be hard. But having your arguments scrutinised is a core mechanism for achieving scientific advancement. If you’re not willing to engage in that (in a civilised manner), you’re not going to achieve anything.

To be honest, it actually baffles me how under-utilised this forum is. Imagine having access to so many motivated, educated, experienced and rigorous people that want your work to be the best it can be, and not taking advantage of it.
 
Utsikt said:
That is no excuse for not adhering to the basic principles of science.

I don’t think my comments have been unkind or unnecessarily severe. They have been negative about one particular section of the paper because that section is completely unscientific, and it gives credibility to a harmful narrative.

And they are also criticised for that.

I understand that receiving critique about your professional work can be hard. But having your arguments scrutinised is a core mechanism for achieving scientific advancement. If you’re not willing to engage in that (in a civilised manner), you’re not going to achieve anything.

To be honest, it actually baffles me how under-utilised this forum is. Imagine having access to so many motivated, educated, experienced and rigorous people that want your work to be the best it can be, and not taking advantage of it.
Click to expand...
Was mostly referring to rvallee, not you.
 
Kronos said:
However, I just want to warn being too negative to authors. AG will probably not read this forum, but people have been doing similar things responding to Twitter accounts of scientists. I would not wonder if some researchers would loose enthusiasm reading quite harsh comments.
Click to expand...

I am with @Utsikt here. If medical scientists aren't too sharp and rigorous in terms of critique that is even more reason why patients should put them right. Only poor quality scientists are put off by critique. The overriding problem with ME/CFS research has been the absence of adequate critique. So garbage has flowed for years. (Garbage flows in all biomedical science areas. The difference for ME/CFS is that there has been nothing but!)

If Goebel is on to something important he should immediately respond by saying - yes, you're right, there was no need to introduce any BPS stuff; thanks for pointing it out'.
 
You must log in or register to reply here.
Back
Top Bottom