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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 trials? What makes you all so sure that current trials for LC will not work for mecfs if they find a successful treatment. I can't face a lifetime of...

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? I'm severe if that makes a difference. I'm particularly interested in the endocrinologists because I have a history of head injuries and never ruled...

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 suffering from it. I tested the hypothesis and destroyed my life. After learning on here and elsewhere about the flimsy evidence for these conditions I...

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 town. Instead I am waiting for my partner, who also has ME, to wake up and make me some food, so I can take my medication. These theories turned my...

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 utterly destroyed by her/the other author's theories, is an absolutely dreadful feeling. They have no shame. I really hope that NICE expand and double down...

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 to get me to do GET Edit: it wasn't my intention to pull this thread off topic so I'm going to stand back and let the scientifically minded among us...

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 sympathetic doctor say that the research community is constantly claiming to have found a biomarker but nothing ever comes of this. Acting like this...

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 a website or a study which we could point people towards it might do some good, both on an advocy level and in terms of saving people from this fate.

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 explanations put forth by their doctor's//other clinician's and worsened. In order to show how much damage a patient embracing psychosocial theories...

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 Tuller/Brian Hughes? Just brainstorming here really.

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 from psychosomatic ME treatments, text based probably, but video could be more personal

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, took their doctor's advice and worsened. In non emotive language as far as possible, simply describing what advice one was given and the degree to...

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 housebound from excercise, finally receive a diagnosis and be prescribed...excercise! I almost think there must be some fatal evolutionary flaw in...

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 and now my house is ablaze. Before it destroyed my life I had no idea of the risks I was running, even though I was vaguely aware some people said...

Sure am glad I got my hopes up...