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Dear @Suffolkres, do you have an original or reference of this text?

Even if Action for ME means well, the DWP and others will misuse the information they received to deny people benefits. And they will be correct in a strict sense if they say in defence "Action for ME told us this is how it is; pwME just need a bit motivation to return to work", even if AfME...

What a wonderful summary @Daysailer, thank you!

Would it be worth contacting her re. the ME Wikipedia page?

I am highly sceptical about the presence of competence. My impression was any brain scan research is pretty complex, and I don't see why Crawley et al. have the needed expertise to produce something meaningful. That won't keep them from declaring their "findings" as facts I fear.

One big problem might be that these people never had that kind of pain.

Accusing someone repeatedly of "harassment" (or libel or whatever) in public can be harassment as defined by law. For this, it is not necessarily needed to be truth or lie (i.e. even if the accusation were true), it's enough that it's done to harm the accused. (That's in Germany from criminal law.)

I cannot film these events because I'm mostly alone when they happen, and I cannot say when they happen. But I try to remember it, it's an idea. It definitely feels like "brain and nerves exhaustion" (motor fatigue) although there could be an energy part in it. But I don't have lesions in the...

Ahhh, that sounds terrible! :arghh: Ouch. Really, let you check. If I fall, even "lightly", I always get some surprises. Since I'm sick any accidence is "meaningful", it really sucks. Best wishes.

Thanks @Milo and @Little Bluestem, MS was ruled out. It only happens when I've overdone it, and it goes away with rest. I don't think that's MS'ish? Also, EMGs and ENGs were normal (besides "chronic neurogenic remodeling", but I don't think that's relevant). However, chance wills it that I'll...

The following is from the German perspective: As far as I know it is legal to refuse benefits/payments if one refuses "accepted" (i.e. "evidence-based") treatments. The thinking behind that is that the society's wellbeing (here: financial interests) is above the individual's right of autarchy...

Please keep us updated. Today again, right leg "weakness", with lots of concentration I could change from dragging it to limping for some moments, then back to dragging. Just walking simply wasn't doable. Really a sh*** feeling.

So they're seeing @dave30th as a threat now that needs to be silenced. Good sign in fact. If there's any help we/I can offer for the fight...just say so.

That means, fibromyalgia: 30,7% were refused at the start, 4400 of 29580 = 14,9% appealed, 1370 of 4400 = 31,7% won and 68,3% lost, so in total 29580-1370 = 28210 is 29,3% were rejected; MS: 16,3% were refused at the start, 1490 of 7830 = 19% appealed, 550 of 1490 = 37% won and 63% lost, so...

@Michiel Tack, that's a great summary! I saved it also for later, maybe I can use it for my processes. So two times thank you :)

Indeed, there exist papers about the communication of immune cells (e.g. mast cells) and neurons in the gut (e.g. of the vagus nerve); there's also a newer finding of a connection between toxins that wander from the stomach via the vagus nerve to brain and Parkinson's. My impression is there's...

In theory, the right to express an opinion is limited by the rights of others, like physical integrity, and by crime laws. This is a very fine line, of course, which would have to be faught over in a law court. In practice, I guess, a court might say it's an opinion.

I take Ranitidine for MCAS. Although it helps with the symptoms related to this, I don't feel it helps with ME symptoms. But still, that it helps somehow is great for me.

In a paper about inherited peripheral neuropathies, burning muscles (and fast muscle fatiguability) went under muscle weakness.

As you know I'm interested in that topic. :) And I have one-sided "weakness", too, in the right leg. When I've done too much, I limp; a bit like @BeautifulDay explains with her child.