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If they replaced CFS with Cancer (which would have an equal response rate) they would probably face a disciplinary hearing. Both are debilitating physical conditions, and neither should be treated with lies and abuse and quackery. I hope we get a disease mechanism so we can hang these losers...

But PEM is often delayed, a day, two days, i once had a week delay (oy, that was a bad crash)

Dare to Disrupt :emoji_face_palm: She wants a license to abuse patients with lies, quackery and harmful treatments and her institution believes in her and supports this :emoji_face_palm: I don't really care if its out of ignorance, stupidity, blind trust or any other reason, this is...

There is a point, if I have something in addition to ME/CFS i want them to find it instead of failing to look. That said i agree that if they are useless move on.

very good point

Fair enough, though it will come down to luck if the neurologist knows enough about ME/CFS to not be useless or even counter productive

I wouldn't, i have found most docs believe the flow of medical information only goes from doctor to patient so won't take seriously when you present anything new to them. That said i would suggest minimizing the ME/CFS diagnosis so they will do proper investigations first and if it doesn't work...

well put

I wonder if someone is bankrolling this study for expected future supplement profits, it would explain why its bring done and done so badly

Its not likely but it could be a type of secondary Parkinsons.

But according to some estimates 25% of us have the undiscovered genetic defect that causes depression hence we must take the drugs in vogue which change over time to subdue this defect. How can so many people have the same undetectable defect that can't be studied? I'll refrain from saying more...

Thats crazy, if only 12% get funded then to double the funding would require 833% more researchers. That is ludicrous, what are the unselected ones supposed to do, leave medicine and retrain for another field perhaps? If every other field of research has this kind of dismal response rate then we...

I believe Janet posted it on the other place when it happened, though i don't think it was a photocopy, it was typed text.

Can't easily attend with the timing but i hope it goes well. I would suggest Dr Davis get funding, world class scientist told Stanford is not a real institution (i forget exact wording) is beyond belief. That said in general updating best practices, weeding out pseudoscience and scams (PACE for...

I tried whey protein and it provides a shot of energy and reduces PEM duration and severity. Pricey but effective. When i say shot i don't mean normal person functioning but better then average for me

I would copy and paste this into a brochure for ME/CFS patients. I was not very interested in pursuing it if it was positive (long story) but it would have provided a useful piece of information about the disease mechanism, if it was all one disease. I suspect you are completely correct, its a...

Its got so many layers of snake oil they can't even keep them straight.

The acetyl carnitine will likely help, its the only reason i can still read online posts and think coherently, the B vitamins are a crock (i know some will disagree) the Q10 will help though i find its effect wears off over time, the ALA i don't know. I don't like testing so many things at once...

Indeed, they learn from the best (or should i say worst) :emoji_face_palm: