Do you all really believe there is no hope of a treatment? That Scheibenbogen and other European researcher's will turn up nothing in their...
Hey all My cardiologist (Dr Gall) is talking about referring me to one or more of these specialists. Has anyone seen them and were they helpful?...
Running utterly destabilised my mild ME and I never recovered. Seeing stuff like this is so worrying.
Is this the sort of thing that could be tested for easily? Has it been ruled out for most pwME?
I believed in it, though I didn't think it applied to me for a long time despite what some docs had said. Then I became convinced I might be...
If I hadn't listened to this shit, and excercised and pushed, I would be able to go downstairs right now, make myself breakfast and wander into...
It's just endless isn't it? Reading what Chalder said in the Graun about lives being destroyed, while lying in bed because my life has been...
Agreed, funding and replication studies are desperately needed And I avoid them like the plague after the one I was speaking about.
Oh he was a terrible doctor, at least as far as I was concerned. I came to him because I had deteriorated to moderate from excercise and he tried...
It seems to me that the ME research community cannot afford to be overhyping admittedly interesting findings like this. I have literally had a bps...
Why did he have to hype this so hard? What was the point of giving desperate people false hope?
Honestly between this and P.T. Prusty's Marvelous Biomarker Circus I can't decide which is the most infuriating!
This is precisely the kind of experience we should collect - currently stories like this are just floating around on twitter/Reddit etc. If we had...
I agree wholeheartedly. For this project I was thinking about people who have undergone GET or had informal advice etc. who accepted the mind body...
That could be very good indeed. I have no idea how one would achieve such a thing though. Perhaps if we approached some researchers? Or David...
The closest thing I can think of is the dialogues for a neglected illness video series. I was thinking something solely focussing on bad outcomes...
It has occurred to me that it might be useful to collect testimonies of people like myself who accepted a psychosomatic theory of their disease,...
It is just insane that someone can report the symptoms of ME to a doctor for almost four years, not be warned off excercise, worsen themselves to...
I literally cannot believe how badly trying to cure ME with excercise can worsen the condition. It was like pouring oil on a small kitchen fire...
Sure am glad I got my hopes up...
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