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...
No word from the Observer so i assume they won't be publishing. Not very happy with myself for sending it off before i could read most of the...
I'd like to offer a dissenting perspective. I am absolutely traumatised, completely and utterly traumatised by my interactions with the system....
Thank you everyone for your feedback. Unfortunately I already sent the letter so I can't include any of it.:banghead::banghead: But it means a...
Letter to observer - which draft is better im undecided? Not sure if my paragraph on Nice and the low quality research is 100% accurate. Can...
I couldn't agree more. I am not a legal minded person but doctors need to face professional consequences for psychologising ME and other chronic...
I am absolutely fuming about Miller's piece. Shame on the Guardian for allowing him to use Maeve's death to spread his gaslighting double talk...
Any idea what they might be referring to here? Like do they have drugs in mind or is it just, this seems to help so lets see how its helping and...
Yeah maybe. Like he's so angry that we dared criticise his dogshit study he's decided to leave us in the dust and tell everyone we're not even...
Yeah I hope you're wrong but it seems like a distinct possibility. Unless they have found it helps but it's not a one and done thing like they...
In the early days they were talking a lot about bc007 improving red blood cell deformities and increasing tissue oxygenation or something along...
Its completely irresponsible! Of course a small proportion of people will stay worse after a CPET - all intense exercise carries that risk for...
Is he fucking kidding? After all those years of studying it? I mean my expectations were low as possible post intramural study but Nath has broken...
I'm not trying to change their minds. At this point I am concerned that even a biomarker and treatment won't change these quacks mind as they've...
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