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I think it was @Hip who had said 20mg of Prednisone seemed to prevent PEM episodes. Scary drug long term but interesting.

There are researchers who think responding subgroups are present and are working on ways to identifying them

I don't know, maybe its ligaments instead of muscles. I do know i am slowly seizing up, my chiropractor can only do so much but as the ME gets worse i am likely going to be in much more pain.

I am reminded that someone (Dr Klimas, someone else?) had once said in a video or interview that ME and severe ME are almost two different conditions. What if for example you have ME but when it leads to enough muscle loss that you end up with CCI hence become severe? Extending this logic once...

I have been here several times, very scary prospects and i had come to the same conclusion, i would not have survived long if it happened.

Taking down pages is not sharing responsibly Claiming there is no evidence (not something you said) is not being responsible I wish people would not jump at unproven ideas. But as i said if we act high and mighty we allow those who are not as "ethical" as us to dominate public discourse. Thats a...

Whats going on on the CCI threads. But if you want a specific here is one example of my reply https://www.s4me.info/threads/biomedical-articles-on-mepedia-purposes-and-pitfalls.5330/page-5#post-171356 The hostility towards this concept is obviously apparent to those who want to see

Science works by collaboration. A leads to B leads to C. In fact i would not be able to have this conversation if not for this principle. Science also looks for evidence and attempts to prove or disprove a theory. As i explained in the other thread i just replied to there is a huge difference...

However we should be careful not to throw away the baby with the bathwater. If someone claims LP cured them we know its nonsense because what we have is not psychosomatic. We have mensurable abnormalities and loads of biomedical research which in aggregate shows we have biochemical abnormalities...

Interesting. So its perhaps more correct to say its a symbolic gesture that can be used to justify positive change Interesting. I expect the NIH to now give us commensurate funding compared to other diseases of similar prevalence. When pigs fly...

This is incredibly irresponsible. We have loads of anecdotal evidence. This is not at all scientific hence we can use science to develop an evidence base yea or nea. This is what gave us the Rituximab trials, several anecdotes. Even in failure we can learn and achieve a great deal but to not...

Interesting, thanks

Interesting, so i assume that means what can be done is limited but they can buck the dotard. If we are determined to protect him we can. I assume thats supposed to get us something somehow.

Wow, these people are determined to prove they are nutjobs. I wonder how long it will take the medical community to realize this. At current rates it does not look promising.

Interesting, It will be easier to have the house pass it then the senate (in theory) Once they do what happens then, does it need presidential signature?

Jesus :emoji_face_palm: Do you have a link to his speech?

This is known as anchoring bias. Here is an interesting podcast about it, nothing about ME or CCI though https://figure1.com/ddx/episode-2/

I have dug deeply into this on the past and its highly unlikely Hypocretin-1 (also known as Orexin-1) has anything to do with ME

It used to be often delayed several days, a week once but these days usually next day, the odd time 2 day delay. Sometimes instant but not often

It depends how bad the PEM episode is. I try not to get into monster PEM anymore but my PEM episodes typically take 1-4 days to pass. I've had 1-2 week PEM before, hideously awful. As for lying down helping if i am near the threshold i can sometimes lie down it off. Thats rare because i either...