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Are there any M.E. specific or friendly journalists who could do a good job of getting out the story in a few different angles something like ‘it’s been x amount of time, just stonewalled and no withdrawal’ and then nail really getting across why this matters and the significance I'd also like...

Yes this is the perpetrators of something that did and continues to do harm directly via their treatments and directly via their spreading of misinformation believing that they can avoid apologising or acknowledging. If they actually were responsible souls bothered about either the future of...

A lesson in sophism isn't it. Almost like a philosophy exam where you have to learn the different aspects of fallacial argument and reply like a reading comprehension to where they are. Thanks for going through it so well. Apalling that we have to do it. I'm aware of free speech but this...

I think these sort of things are really important documents for us to develop. And get specific for different severities/situations if necessary. But as others have said: advocates are desperately needed, particularly even more desperate by severity vs situation, just when you can't easily...

This is where the complication arises. There is disability and paralympics. I have to be really careful here but I think the point is that these are athletes and it is an extension of the olympics defining equivalent categories to compete in like you might have male and female sections, and...

I agree that it could be walking into a trap if those in charge are not sufficiently prepared from all angles. Even if they get the nuance spot on, I'm unsure whether the timing would be better after the athletes have had their moment to shine. Because there will be a lot of people who aren't...

thanks for the info I'm not on the ball enough to day to read this through for the exact nuance that it very much deserves. I absolutely agree with this. There could have been a bit more effort to take the creativity to the next level where they were able to make disabled athletes inspiration...

yes sorry, I've added a note, just not up to it/feeling good enough right now, so hadn't even checked out whether I could access it. Uggh well at least I feel those patients got that one correct. what's wrong with the professionals they've used to put it as high as 9? Is it conflict of...

Well that’s one way of switching the term I hope they are going to tackle those lumped and dumped I just feel cynical of those not with my best interests in mind potentially sneaking in under these [again] due to their great politicky sales pitching and can’t read the detail in full (not...

Yep it feels like certain people who always have their hands out whenever anyone new comes along pretending it wasn’t them last time and the time before ALWAYS use the switch and bait tactic the problems they caused are what they spell out and then each time non sequitur their sane tired agenda...

Interesting not well enough to read until a good day but off top of head it sounds feasible (but then all the bps stuff aims to tick that box so I know it’s the rest that counts)

I’m sort of similar and perhaps agree with some of your points I don’t fully understand your last para though I think mainly because I’m not familiar with the history of the two things you are referring to - sarcoidosis and julia newtons idiopathic etc - but it seems it might be interesting

Pretty loaded wording isn't it. Just goes to show that by now, given all the lessons they must have given some of the more talented in other generations in poor questionnaire design, there must be some who are interested and skilled enough to do a better job This feels like the questionnaire...

Yeah and I slightly wonder whether there is confusion over 'having days where you manage to get lots of things done' being said (and that phrase being relative anyway) vs days where you try to do lots being the actual 'opposite' implicit/intended. It can be just as much work re-reading that...

I manage to lid the end of my big toe and not notice for about 15 seconds when walking outside the back door for a moment. I assume this was because I rarely was out there without shoes and inside the consequences weren't so dramatic, and just thought nothing unusual of the contact with the...

Yep when the cat accepts getting breakfast at 4pm because they feel so much empathy, even if I was too unwith it to notice, among plenty of other things they clearly spot then I'm sure there is something to be picked up.

Yep it was always awful blagger BS nonsense and not based on trying to help anyone at all. And yes I'm allowed to say that about people because if you aren't really listening and doing your job properly and not following up then it isn't help, so that person'd be the one with the problem if they...

I think that this one sounds like a very interesting approach. Given it does need to be comparing individuals 'to themselves' - and PEM is a funny old beast which as the blog says involves some sort of over-threshold, normally exertion which might be cumulative. And might be PEM-on-PEM where...

Oh they do. It just isn't all of them. But the most (historically) female-heavy of them all: eating disorders, who knows what mixed bag of actual issues that could be tackled with a matched approach are going on there, yet instead we get personality-targeted tropes. Perfectionist label being...

There is another point here I have just thought of. Due to the misleading 'recovery' assumption I think something that has been coming through from enough people writing about their experiences is that you don't go to the GP for a while (because they can't help or nothing has changed, or you...