Search results

I can’t remember where but some s4me member mentioned on another thread that “Dysautonomia International” had some major issues related to ME. Does anyone know if there is a more in depth thread or similar on this?

That’s been my intuition too. PEM is a major disease process and mechanism in itself. It is what makes ME stand out as a different clinical entity. I really think the large majority of research funding should go into understanding it.

Possibly in relation to other subtypes of long covid that aren’t ME/CFS.

Reminds me of Nath that keeps on saying pwME are “complaining” about X, Y, Z instead of a more obvious “suffering from” or “experiencing”.

Usually, the more conditions it “cures”, the more scammy it sounds is a decent rule. Especially if the conditions are vague and without known treatments.

Micheal Bloomberg donates 1 billion to John Hopkins University. “As the U.S. struggles to recover from a disturbing decline in life expectancy, our country faces a serious shortage of doctors, nurses, and public health professionals – and yet, the high cost of medical, nursing, and graduate...

What I found, interesting, relevant and to fit with my views of the disease, is it seems this thesis finds QOL scores are very strongly correlated to severity of PEM. Fatigue is not even mentioned once in the abstract.

Man it’s so frustrating when they can’t even get the name right. Doesn’t inspiire any confidence.

That is so weird.

Oh man. Once the word of that spreads, a very large number of people is going to try it.

Yep this study is mentioned in a second hand source here for example: Similar to other chronic diseases that can decrease patients’ quality of life, the psychological burden of ME/CFS is enormous, and secondary mental illnesses such as reactive depression may occur. However, as Jason et al...

I think what you’ll often find is studies saying that there was no increased psychological issues before ME onset, and therefore concluding that the higher psychological issues found after ME onset, are likely due to the difficulties faces / grief etc. of being disabled. I’m sorry you had a...

Wow, that strikes me as an impressive load of quakery. What a shame so many are falling for it. This guy reminds me of David Jameson for some reason.

Which according to these authors would be an “epiphenomenon”. I learnt.a new word today :).

Do you think it could have been immune activation and other problems in the muscles related to PEM, like what Wust et al. found.

I only caught a few minutes reading captions but he glossed through a lot of stuff saying it was part of the mechanisms of ME a lot of which is unproven: MCAS, SIBO, Leaky Gut etc.

Not sure that works for ME, as the worsening of the pathology seems to be caused by PEM. Edit: Also I’m unsure if that is really a universal rule. ALS seems to be more commonly severe while mild cases of it are very rare.

I would dispute that as likely being fuelled by survivorship bias in two ways: 1. People with severe ME are much less likely to go to doctors/participate in studies or to talk about their experiences and be active, because they can’t. So they will be much less seen. 2. The risk of dying from...

I have to agree with ME/CFS Skeptic here that I think the risk of having false positives with a looser ME criteria is far higher (and likelier to mess with results), than having people with PEM in the control group. And for the control group, I doubt any would fit the IOM, as it requires a 50%...

I really hope someone uses her following and reach to make educational videos about ME in the long run.