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This is a debate within sarcoid circles. There seem to be three approaches. to apparent or alleged remission. 1) Your sarcoid is gone and you are well, get fit etc. 2) Your sarcoid has gone in terms of classical signs but persisting systemic changes not apparent to current modes of assessment...

Have I understood correctly that the cohort was ongoing rather than post sarcoid? Thanks anyway.

Numerous people are being diagnosed as having CFS and fibro after apparent remission of sarcoidosis. Numerous questions arise 1) What does the diagnoser know about CFS or fibro? 2) What does the diagnoser know about work on post sarcoid fatigue vs sarcoid e.g. persistent shift to TH1 in post...

Sb - somebody. Sorry. Some people have found them useful or say they have. I believe people who say they got better using LP. I do not assume that they were getting better anyway (though they may have been) I do assume that their system was shocked off the rails and that LP shocked it back on...

ME. post viral incl long covid, in some respects sarcoidosis - immune derailments. 1 Garner - strong chassis, derailed, short sharp reset on rails - fine. 2 Sb else, delicate chassis. maybe Gupta 3 Sb else maybe fairly simple drerailment in context of alexithymia - Mickel or reverse 4 Sb else...

As far as I know no. I am in the anything that helps camp, but I share any concerns about trumpeting sth as science which is not. about absolute and /or monolithic claims re treatments, aetiologes etc.

There was a guy in South Africa , Nash Petrovic, who supplied tailored antioxidant and other supps and had some successes among ME diagnosed. Of course the group is heterogenous (I believe anyway) but he may have helped some.

I noticed that the group had used the term PEM when what had been found could have been referred to as exercise intolerance which is found in many muscle pathologies. It may be that PEM is based on exercise intolerance in some people but discussions on here show it goes well beyond. So, were the...

Would you say that there is also the question of when/whether "circuitry" disorders step in, where the system just responds inappropriately/excessively to relatively non noxious stimuli? Such disorders must have a physiological correlate, but this kind of stuff is very challenging, as is e.g...

Yes, it could be that some have an immediate response, which might be different from a delayed one but that the delayed one then piles in. The type of regression to wors e/t symptoms will be different if the worst symptoms are different. There is also the problem of ME knowledgeable talking...

You've read it in more detail that I have. Was it the mt impairments that caused the o2 uptake probs, vice versa, bidirectional or unrelated parallel phenomena?

I respect your experience and small studies, cohort issues etc will dog the debate. But on the subject of low O2 uptake I read around and found that major depression is marked by low o2 uptake and so is lupus. With lupus an association was found with glutamine and glutamine administration helped...

Maybe all kind of things going on to different degrees in different people and all united in "Betrayal by the Brain" as Jay Goldstein said. The light sensitivity, pain and OT are shared by some Lyme patients and sarcoid patients suggesting common mechanisms at some level perhaps. Perhaps the...

Are you aware of Cara Thomas work which showed poor o2 uptake in peripheral MBC? She found normal mitochondria in her group but some probs in oxygen uptake. Her work is referred to on the ME Assoc website.

Not necessarily relevant but just to chip in acute sarcoidosis has been found to show elevated ox phos while chronic sarcoid shows reduced ox phos. Whether this appplies in all cases I don't know.

I have had and may still have raised gene expression for Ifn gamma and TNF alpha. My thinking has been that these may corrupt control mechanisms (make it harder for the pilot) and also make the system more difficult to control and possibly be testimony to e.g. underlying ongoing infection and/or...

The paper on GWS uses "dysfunction", but the specific nature of ME PEM is not maintained in that term. Hard to know what else to use than malaise etc.

Agreed re. what the reported problem is but you did veer imo into an implication that fatigue is not in itself pathological, when it may be. When I had flu I just flaked out and slept. I do not recall it as much different form extreme exhaustion. Tired legs is a specific symptom of my illness...

Exercise alters brain activation in Gulf War Illness and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome | Brain Communications | Oxford Academic (oup.com) Probably been posted before. Point for me is serious does not mean the same.