I understand your perspective, however I was talking about UK trials of drugs that are in trial elsewhere in the world on the basis of a...
I am currently weighing up whether going into the surgery to get an issue checked out is worth the crash and covid risk, or whether I should wait...
Well that's a load of dangeous bullshit. The Millers and Wallitts of this world have a lot to answer for. Let's hope at an inquest someday.
Some drugs being trialled elsewhere for ME and LC that UK trials would be worth considering if the current trials bear fruit Rapamycin IVIG/SCIG...
There were leaked memos going round the covid groups a while back where it was literally NHS policy not to test for covid if you were sick. Like...
Yes on some level they know they are charlatans, and they are terrified of a biomarker that exposes them as such, or a treatment that returns pwME...
Yes, if I had been told that my doctor was telling me the mind and body are connected because he believes that ME is a conversation disorder, and...
If it is brain damage, are we cooked? Or is there still treatment possibilites that can be trialed?
I also just want to flag up that I haven't seen any outlets report on Sean O Neill's calling out of SW by name. This is not surprising, as I...
The There for ME letter is very good. Very impressed by them generally. Shepherd's isn't bad either. Both more measured, better argued and less...
Good God, how well put. That is literally what happened to me. Politely asking for help until their neglect and gaslighting made me so sick I...
But it isn't impossible to retrain doctors not to gaslight and abuse ME patients. Nor is it impossible to fund ME research properly. These are...
False hope did far more damage to me than my natural inclination to pessimism.
We also need to stop people receiving the awful advice and medical neglect that is a factor in so many people becoming severe and very severe....
You're right, that sort of research is necessary and could save lives. But it is the absolute bare minmum we should be asking for.
Could we have a thread for that, in that case? I feel that constant media coverage of past wrongs like there has been with this inquest but on...
Yes I think you're right. As ghoulish as it sounds this case could have a lot of motivating factor for those making the decisions. I am so angry...
My question is - at what point do we (patient orgs) start calling for a public inquiry into NHS treatment of ME patients? Obviously there needs to...
I'm endlessly frustrated by studies like these! Is the idea just to get funding for a double-blind study Because it would be really valuble to...
Also I was heartened to see Putrino really going for the BPS lot. I know people have to remain professional but I think those who are complicit in...
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