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Agree on this. I think demonstrating the full cycle of PEM and nailing if possible the link to deterioration is important

I’m not 100% sure. I think those who do that to us just reach gif that one as stage one in sophism it doesn’t mean if you fix it they will shut up. it won’t make them think the illness is as devastating as it is, or stop them choosing to be persuaded that whatever caused the symptoms it’s...

:hug: not looked yet but thanks for heads up I now feel like when you don’t know whether to peer between the finger of your hands you put over your eyes fir a horror film (although as I can’t watch those at all then a scene that came up unexpectedly in something that promised me it wasn’t horror)

Yes I always assumed that was the mindset of medicine and that they’d be curious to hear about my careful observations when I was ill etc coming from a background where I was sciencey at school so assumed the same people who went on to med school were similarly interested and thought in that way.

Thanks Hutan I thought it made sense but to wade in as I might have missed these being discussed elsewhere. I’d be intrigued given the what do we do now vs BACME clinic stuff to find out if there are some good or better places doing things a bit differently I think it’s Salford or Manchester...

I was that latter group I would have thought when I’ve been less unwell. I had to live a life of PEM and rolling PEM and was firmly moderate but with constant pain in legs and just cumulating exhaustion (despite sleep as soon as not in work and some home days I just could not function until x...

If you break your leg then how it was broken normally isn’t the main lead to how to fix the leg ie treatment same for any other illness. Treating ptsd doesn’t negate the infection needing antibiotics and that’s IF the correlation is the way they inferred - it’s pretty likely ending up with...

So frustrating or maybe interesting if we had more detail on the patients and what they’d done in the lead up eg to see severity and get a sense of whether any of them were in PEM or were ‘exerted’ just by getting there or any other things. I guess we can try and pick through methods for...

The thing is if they have some funding or sponsorship from somewhere whether it’s full time or just coaches of equipment.. well we all know how precarious that can be made to feel

Is this the full / official list? I don’t see the Yorkshire fatigue clinic or the George Eliot Nuneaton clinic I was interested to look up both (and any others that might be not be too bad) to ask if they are still good / how good they actually are I know there might have been changes if sue...

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...