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I have no confidence in the genetic test option. Hell, they can even find a genome associated with depression now. Doesn't get you any closer to knowing what the more proximal causal factors are - the ones you'd need to address to treat the depression. And it certainly doesn't show the disease...

As I understand it, lots of fullly recognised diseases don't have a single biomarker either. They have a clinical and a serological profile and you can have "classic" cases that tick all the boxes, and others that don't. Some diseases, like Crohn's can have a variable picture in both symptoms...

I'm probably sounding like a broken record here, but I do think that B cell depletion will only have a good effect if one has a dysfunction involving the adaptive immune system. That is, a problem involving the production of antibodies. If many of us here have a dysfunction involving the innate...

I wonder whether we're constantly coming up against the heterogeneity problem? That would certainly explain why a trial with a small group can yield positive effects, whereas one with a larger group yields null effects. For a while there, many of us believed MECFS could represent a group of...

I learned something too! I had a student with Hodgkin's lymphoma, and I plead guilty to saying "Is that the one with the relatively good prognosis?". :oops::muted:

Yea, the dark side of (false) hope. Despair, and blaming the patient for not trying hard enough. Honestly, it doesn't matter whether its "alternative" or "conventional", how much can we expect of any treatment that doesn't get at the mechanisms actually making us sick? We're not sick because...

"Complex Chronic Diseases" is a brand new euphemism to me. Obviously, they don't mean "Complex Chronic Diseases", or MS, RA, lupus would be included too. They mean "those diseases that we think are psychological". Still, they had the guts to report the real problems patients see in their...

I don't know for sure, @Samuel. They're usually classed separately from the autoimmune and autoinflammatory diseases, as part of a wider group of general hyperpsensitivity disorders. And they involve excessive antibody production, but of a different kind from autoimmune diseases (IgE is...

Yes, I suspect that the vast majority of primary care doctors believe ME is psychological. They make these apparently illogical statements in order to conceal their real beliefs - that you are continuing to make yourself ill through your thoughts, feelings and behaviours. If they are caring and...

@Gingergrrl, there seems to be lots of evidence for autoimmune activity in your case, even if you have some symptoms that don't quite fit any specific disease category. But most of PwMEs are not like you - they don't show any evidence of autoantibodies, and they still have no clue what's going...

But most of us are dealing with the bad things okay, I think. We're not getting repeated bacterial infections or anything else that might indicate our immune system is actually failing to protect us form new infections. At least not the majority of us (some might).

Totally. Hence PACE's CBT and GET "worked" for a while, and then stopped working (no benefit at long-term follow-up).

:wtf::bawling:

Oh, forgot to say: people with autoinflammatory disease report that the main triggers of their episodes appear to be: - infection - overexertion - stress Sounds a bit familiar, eh?

Yea, its maybe not a great fit for you. In inflammatory disorders, you might expect to see high white blood cell counts. But those are a pretty blunt instrument, because there are so many different white blood cells. More specific markers are raised subsets. e.g lymphocytes overall or CD4+ or...

CRP and ESR provide some sort of objective evidence of inflammation, but neither appear to be very good markers of how sick a person feels. They are probably not at the center of all the awfulness, but reflect some sort of side effect that occurs sometimes in some people. What I was trying to...

I'm no expert, but I think the idea is that you can have activation of the innate immune system with autoimmune diseases too (so yes, one can stimulate the other). But the inflammation part is much more severe in autoinflammatory diseases. Edit: it doesn't seem that people often have an...

Gosh, @Graham, that's tricky. You can have an intolerance to certain meats, but the symptoms are more like you see in shellfish allergies (rash, breathing problems, swelling etc.). I know that's probably not of much help...

I promised to write something about this group of diseases, which I came across during my own diagnostic journey. They are not the same as MECFS, but they have some interesting similarities, and may provide some clues as to what's going wrong in many of us. Background: The two main components...

The Lilienfeld article in the science library talks more comprehensively about spurious factors affecting psychotherapy trials in particular: https://www.s4me.info/index.php?thr...l-of-that-shiny-new-study-a-bibliography.212/ Lilienfeld et al refer to this effect as "Response shift bias"...