Has anyone noticed that ME researchers in Europe are looking at autoimmunity, and those in the USA (along with KDM in Europe) are looking at infections? I wonder why it has worked out like this - Prof. Edwards, any ideas? Do Europeans love a nice autoimmune disease? Do Americans prefer a good old infection?
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Extended B-cell phenotype in patients with ME/CFS: A cross-sectional study
- Thread starter deleder2k
- Start date
One way to look at that is that we have all the bases covered. It's either infection or immune screw-up.
Of course, it could be something in between or a little of both. But if the left hand is too arrogant to communicate with the right...
No worries: Should both approaches come up empty, the BPSers will swoop in to nail the diagnosis.
Of course, it could be something in between or a little of both. But if the left hand is too arrogant to communicate with the right...
No worries: Should both approaches come up empty, the BPSers will swoop in to nail the diagnosis.
Mine too
No idea, I thought it was just low blood flow...
The US researchers have been looking for a cause for a while, though others have been looking at biomarkers (immune cell function) and symptoms (PEM/OI). Whereas the accidental Rituximab discovery has provided a new lead into investigating the treatment end.
So I don't think it's investigating "infection versus autoimmune", but rather investigating from "symptoms versus treatment" starting points. I think both angles are pretty sensible, and wouldn't be surprised if they meet up in the middle to some extent when the pathology starts to unravel.
Hmm, good point, I hadn´t thought of that. But then why do the USA ones go for symptoms and the European ones go for treatment? Continental bias? It also seems to reflect the spread of specialities of the ME researchers on both sides of the Atlantic, but then my question would be, why aren´t any infectious disease experts in Europe interested in ME, and why aren´t any autoimmunity experts in the USA interested in it?
I also think they will meet up somewhere in the middle - I just hope that these two groups will work together to make it all join up sooner rather than later.
I also think they will meet up somewhere in the middle - I just hope that these two groups will work together to make it all join up sooner rather than later.
alex3619
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Historical events. The Rituximab discovery was in Norway.
I don't think it's as straightforward as that. US is ahead as far as experimental treatment is concerned, although I would like to see more convincing evidence for efficacy. Europe appears to be treatment focussed only because rituximab has the potential to be a hugely important treatment and it's the headline news. But in fact if you look at the work of just one small ME charity, you will see that the research interests in Europe have been wide ranging and have led to others taking an interest in certain aspects and developing them further. http://www.meresearch.org.uk/our-research/overview-of-funded-research/
I think that the orthodox medical view in Europe is that infection plays a part at the start of the illness but does not perpetuate it. Depending on the school of thought perpetuation is either strictly biological or psychosocial factors are key so there hasn't been much interest.
halcyon
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It also depends on what decade we're talking about. All of the initial work on chronic enterovirus infections came out of the UK in the 80s and 90s.
Up to a point, I think it reflects the fact that our illness is heterogeneous and that antivirals may help a subgroup - just as rituximab may help a subgroup.
Why does anything ever become fashionable? Either because there are no alternatives or because of heavy promotion by influential people or because there is actual, real substance to a particular idea. Then there's the other factor, which is like genetic drift; randomness.
I can't really speak for the US situation in much detail but it certainly does seem easier for US doctors to try a treatment, previously approved for another illness, on pwME. How much this is down to private health insurance and how much to an inherently different approach, I cannot say. But if one doctor tries an antiviral, for example, and sees improvement, then other doctors may be encouraged to do the same. The problem might be if this is being done without outcomes being properly assessed. How effective is the treatment, really? The freedom to use a treatment, while providing benefit to some patients, may discourage full scale trials. So it will never be used by doctors who insist on evidence. Also, ultimately you want to know why something works, not just that it does.
It's fascinating that of all the countries where the fortuitous rituximab discovery could have been made, it was Norway with a population of only 5 million.
How many pwME in the US (or the UK or anywhere else?) were treated with rituximab for lymphoma. How many of them noticed an improvement or complete remission in their ME? How many of them commented on this to their cancer doctor or to their ME doctor? What did the doctors make of it? What factors were involved in all these individual observations going no further. You'd have thought that of all countries where a health care system would have allowed for more freedom to use a drug off label, it would have been the US that stood the greatest chance of someone getting curious enough. Did perceived wisdom make the ME doctors say something along the lines of "Well the only thing in the human body that rituximab acts on is CD20. We know that there is a heavy infection load in our patients so using a therapy that depletes B cells seems a bit risky"? Were the cancer doctors secretly thinking "Yeah, yeah. We know that CFS is psychological. You've just had a brush with a serious, potentially fatal illness and have now bucked your ideas up"?
Bizarrely, it was Norway with a tiny population but a very high per capita income and a great health care system. Unless you have ME in which case I'm sure it sucked every bit as much as the UK does.
Gemini
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From Dr. Komaroff circa 1992 "A Review of Myalgic Encephalomyelitis/Chronic Fatigue Immune Dysfunction Synfrome/Post Viral Fatigue Syndrome (M.E./CFIDS/PVFS) in America"
"On immunologic testing, we and others (14, 16-22) have found evidence of subtle and diffuse dysfunction: partial hypogammaglobulemia (25-80%); partial hypergammaglobulemia (10-20%)..."
There's a substantial BPS propaganda machine in the UK which has probably resulted in the severe limitation of biomedical research. For some reason, the Brits seem to think that having "Science" in the name of the Science Media Centre means that they can be trusted, whereas Americans (especially journalists and professionals) are going to assume it's a lobbying group until proven otherwise. To some extent, it's a reflection of the widespread corruption by financial interests into pretty much every aspect of society in the US. Perhaps the Brits expect better because it generally is a bit better there.
The people involved in Rituximab research are not ME/CFS specialists. They weren't thinking about the most logical or feasible way to attack the problem. They stumbled onto an extraordinary find, and had the curiosity and decency to not leave it at that, but to dig further. But as non-ME/CFS specialists, they also hadn't been specifically targeted by BPS campaigns, thus wouldn't have dismissed "My ME symptoms are better" out of hand as being placebo effect or a delusion of illness happily disappearing.
But there seems to be a fair bit of interest in the Rituximab findings in the US, as well as the implications, regarding new research. So some researchers seem to be getting more specifically focused on B cells and autoimmunity, and it also sounds likely that there will be Rituximab studies in the US. Furthermore, it's probably a lot easier for an ME patient to get Rituximab treatment in the US pending the outcome of the trials, so that's likely to pick up as well, with the specialists who are equipped to do it properly.
If there had been funding for it, I think it's likely that we would have seen more research in Europe resembling the American research. There has been some of it, but it's been vastly limited due to politics and propaganda. The Rituximab research was a lucky break, which now allows respectable European researchers to engage in biomedical ME research without being at risk of looking like foolish quacks to their colleagues, institutions, or funders. But a lot of that research probably will stay pretty focused on Rituximab, B cells, and autoimmunity for a while, at least until general ME research is a reputationally safer undertaking.
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Marco
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Not to make too much or it but I have wondered lately why certain parties haven't tried to set up a 'ritux debunking' study as happpened in the past and there has been little overt criticism apart from some off target comments suggesting that the late response was evidence against autoimmunity.
After all autoimmunity is as much of a threat to their hegemony as a virus. Maybe they realise a 'quick and dirty' study would prove nothing?
Or perhaps they're genuinely excited by this research?
After all autoimmunity is as much of a threat to their hegemony as a virus. Maybe they realise a 'quick and dirty' study would prove nothing?
Or perhaps they're genuinely excited by this research?
I'd hazard it has something do with them lacking the necessary skill set
And also lacking the supporters with the necessary skill set. They tend to target neurologists pretty heavily with the psychogenic theories, but not so much rheumatologists or oncologists. Who would they find with the credentials to run the debunking study?
Not to make too much or it but I have wondered lately why certain parties haven't tried to set up a 'ritux debunking' study as happpened in the past and there has been little overt criticism apart from some off target comments suggesting that the late response was evidence against autoimmunity.
After all autoimmunity is as much of a threat to their hegemony as a virus. Maybe they realise a 'quick and dirty' study would prove nothing?
Or perhaps they're genuinely excited by this research?
I suspect because it would require a very large amount of money and non-psychiatric manpower to run a "debunk rituximab" trial whereas with the XMRV thing it was very easy to run tests on their fatigue clinic convenience blood samples.
I'd be curious to know what Fluge and Mella thought of ME/CFS (if they even knew about it) before their accidental discovery.