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Exactly.

What they see when we fail is fatigue. What they see when we succeed is less fatigue. Nothing more. To volunteer one’s self to give patient feedback, at a time like this and on their terrain, is to walk into the den and stick one’s head in the lion’s mouth. I think the only way to come out...

This is very dispiriting. I am entirely unclear on what aims exactly MEA has. So I wouldn’t like to call the above project a failure in terms of MEA attempting something and failing to achieve it. It keeps the charity in the room which may be priority. May be counted as a successful outcome by...

Yes to all this about the baseline. What is the article do you mind?

A counsellor isn’t a rehab therapist though. You get many great counsellors and many not so great counsellors. They are people. With their own ideology prejudice and personal failings. As full of misapprehension and harmful ideas about and behaviours towards disabled people as anyone else...

I think so.

:heart:

I’ve a tried out a few of these for grocery shopping. I had some thoughts, as far as I can remember very much in line with @Kitty suggested considerations The wheels need to be larger and bounce. So as to perform better on the roll and reduce pain from constant vibrations. Most wheels are...

Yes. Coercion absolutely. I think that’s a perfect violation of ethics though, so it’d still be a straight no. No to ethical approval at any stage. If there is ethical approval in this present context child and parent will be subject to exploitation. They cannot consent under threat.

Yeah. When’s that due?

Yes. It’s for anyone with an impairment.

Allies do become members of medical charities. For friends framily, sometimes just because they think it’s important. This is less likely in our case. Actually I think it’s pretty hard to prioritise your own health and happiness or even that of others like you when society is busy telling you...

If we have something demyelinating wouldn’t this have been found before, or would it be hard to find/see?

Probably not because we’re so far off from drugs by not yet having a mechanism that it’s just not so much of a realistic possibility. Well I think what’s missing that’s different from other charities is the lack of proof of disease in the context of an abundance of speculation that there is...

Better drugs coming down the pipeline?

I filled in the survey. The age shift post 2021 is interesting.

I agree. However the only severity point at which a person with ME could actually be more cautious in a way that fell below their hard limits would be mild. Because everyone else is using up their whole allowance, plus some, just living most basically. However people who’re mildly affected and...

Glad you’re strong now :) I didn’t read @Trish s words on this as being related to whether or not people with ME can build fitness without triggering PEM. As of course some can. It seems from reports as if most can’t, or most can’t most of the time. But even if that weren’t the case and only...

I feel like it was also over diagnosed once a certain CFS ago by doctors who didn’t believe in it either. A pat on the head to the patient and nod and a wink to everyone else. A ‘nice to see you again, yes pop yourself in the dustbin on the way out would you.’ But then once CFS wasn’t the fresh...

If I wasn’t on here I perhaps wouldn’t have noticed decode ME happening. It’s demoralising to try to keep track of what’s happening in ME world and it’s exhausting so mostly people don’t do it. You’re ill already don’t need the drain. Because it’s not as if there are lots of good studies to...