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Thanks, I will take a look at the factsheet. You are right that there are problems at the stage of observation never mind definition.

They based hysteria on hyster and that is the pejorative idea. I do not think the use of hyster in the context of wonb removal is pejorative per se. The term hysteria is or was. So are numerous words in origin.

Humpty Dumptyism.

If you have a patient with no other condition who fits well established criteria - Canadia, International, other, then they have ME? Do they all show your 12hr plus delay? If not then we must have a term. Is it post exertional, is it malaise? If so why is it not PEM. Because you assert it is...

Llawdriniaeth i dynnu'r groth is the best for Aneurin's NHS

Yes, but to assert that this particular observed phenomenon is to be labelled PEM whereas a similar observed phenomenon occurring in less than 12 hrs or a partially similar observed phenomenon is not to be named PEM is definition by assertion. It is sequestering the term for a certain phenomenon...

Have any studies in LC shown a 2 day CPET worsening. Last I read not. Reported bad sarcoid fatigue states sound like many ME accounts but no n trial has shown 2 day worsening. On the other hand a credible case could be made for be made for rapamycin to be trialled in sarc fatigue (may be not if...

Isn't demanding a delay for true PEM a definition by assertion? Even if there are key underlying biological differences among "PEMs" which should be considered cardinal in ME. Why does any one deserve to be the PEM of ME more than any other unless the other relates to a diagnosed differential...

The question remains unanswered as to what the condition is anyway. All we have is anecdote as to improvement and recovery or lack of /worsening. There is no single voice on here or in the ME community at large as to what constitutes a legit diagnosis.

Both ifn gamma and CD64 are relevant to sarcoidosis too.

But long covid has often been declared to be ME/CFS.

Perhaps sb on here would be able to comment on ACE elevation not derived from granuloma. It may be that you did have a granulomatous episode. Have you had any scans? I may have had it since childhood or symptom onset in 1985 but too late to say now. Assumed that I have it now at low grade.

2022 paper Elevated serum ACE levels in patients with post-acute COVID-19 syndrome | QJM: An International Journal of Medicine | Oxford Academic (no abstract)

SNF features in sarcoid and Ehler Danlos which can be marked by fatigue and non specifics overlapping with ME/CFS and fibro. Speaking for sarcoid the symptoms often do not match lab tests (e.g. PFT) nor imaging and some specialists suspect SNF may be a culprit in some of this phenomenon, but...

Careful about doses and beware of liver, neurological and psychiatric side effects. Avoid alcohol. Also chelates heavy metals and has been used to reduce nickel sensitivity be reducing overall burden. Liberated both nickel and lead in me, still elevated in urine 7 weeks after quitting DS in...

Simmaron's Rapamycin ME/CFS Trial Moves Forward: The Goal - FDA Approval - Health Rising Thanks. I read this review and it seems high ATG13 was the key issue. Possible subgroups? Just for interest , I know this is not a sarcoid forum but...

Sorry if I have missed the answer to this question but was the rapamycin there to increase of blunt mTor activity or sth else. Interetsting to me since mTOR overactivity is involved in sarcoid and also suppressive of autophagy, which may be involved in my case as a Pompe carrier. May be grounds...

Their criticism is primitive because they want an easy message to replace the false consciousness or false illness belief which they claim afflicts ME/LC sufferers. If they could get a result out of telling sufferers that they were going to send George Bush into their ears in a yellow submarine...

Does he say why only on day 2? Why not on day 1?

But 2 day CPET worsening is a sign not a symptom, and the same could be said of the Dutch muscle study results for long Covid. Decon. accounts for neither. How many among ME symptomatics show these signs is another matter. How the 2 day state of anti-tarining is arrived at , whether some alarm...