notmyself
Senior Member
- Messages
- 364
thanks..So i guess they are not very helpfull studies at all..
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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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This "expert" reaction caused an almost imperceptible raise of my weary eyebrow. Is any of this guff getting into the press any more? Prof. Macleod's statement got one sentence at the end of the Times article, almost an afterthought. Prof Cleare was ignored by the Telegraph. Any other newspapers even bothering with what the SMC has to say today?
The data has implied that ME is multiple groups, and broadly defined CFS is highly heterogeneous, for a long time.ME seems (in my opinion) to fall roughly into 3 subgroups (or 2 with the final 3rd made up of misdiagnosed people).
Agreed. We have yet to do that with this paper though. It does take a bit of time. My comment was more about the SMC comments, less about the paper. You cannot trust press releases, and abstracts are not complete enough to evaluate a paper. I will be working through the paper soon, and I am guessing many here have done that or are already doing it.Sorry to have to be a naysayer but I do think biological studies should be subjected to the same careful scrutiny we subject psychosocial research to.
I have only just started the paper but I wanted to comment on these two points.The news articles have quotes claiming that this study shows that ME/CFS is an inflammatory disease, that the symptoms are driven by cytokines and that this could become a diagnostic test. Montoya is also quoted as implying that psychological illnesses are made up which is incorrect (and very unhelpful from a public relations perspective).
Yes, we lack replication of many findings. It throws them all in doubt.so not only does this study add nothing new to our understanding of aetiology of ME/CFS (let alone a diagnostic test), it also refutes previous claims of short vs long-term ME/CFS cytokine 'subsets'.
The only thing of interest here, to my mind, is the TGF-beta finding which confirms what many other studies have previously shown.
Mast cells release TGF-beta. (A Pubmed search on 'transforming growth factor and mast cells' yields 500 studies.)
Why is there so little interest in mast cells, especially considering how many ME patients have mast cell problems?
These are generic studies conducted by people who lack imagination. Doing the easy study, rather than choosing the tricky path - testing highly specific hypotheses.
I will thank the clever person that sent me the link @Murph
Re. the Simpson Paradox, ME seems (in my opinion) to fall roughly into 3 subgroups (or 2 with the final 3rd made up of misdiagnosed people). That's going to cause more noise.
Yes, we lack replication of many findings. It throws them all in doubt.
But reading above I now see that depression gives similar or worse results.
Love how a veterinarian cover it here...she did a great job.
@Wonkmonk I thought the same. How would a test work if there is no difference to healthy controls.
New "expert" reaction from the SMC. Alan Carson (well known for his work on "functional neurological disorders"):
http://www.sciencemediacentre.org/expert-reaction-to-cytokines-for-chronic-fatigue-syndrome/
Activin is part of the TGF-beta superfamily (what that means, I don't know) and another study this year reported increased activin B levels in patients.