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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 that so many patients had said that GET harmed them that NICE was reviewing their guidelines, then you couldn't have paid me to start Couch to 5k or...

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 suppose they don't want to get sued/come under intense pressure over it. They have reported what S O'N wrote about the wider culture which is good. And we...

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 angry than mine. But both lacking the perspective that Miller et al's attitudes towards patients cause harm.

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 vanished from society.

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 political choices based on prejudice. And I don't see why we should avoid confrontation with an institution that views us with such contempt they...

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. Currently we have a system that is in open rebellion against NICE and is giving people dangerous advice that they as clincians have had plenty of...

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 a bigger scale might be a way to force righting of present wrongs. And I agree BPS is a danger, but their arguments don't hold any water when shown...

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 at what the NHS did to Maeve, to all of us. We deserve justice. And so does she. They will not learn until it is embarrassing them and damaging...

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 be one yesterday. But perhaps this is the time? Or should we keep our powder dry and wait for DecodeME findings or something else that bolsters our...

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 know if this stuff actually worked.

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 ME denial and the harm it causes need to be called out for what they are by their colleagues. It's not enough to politely disagree.

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 feedback on here. So disturbed by everything in this thread. Every patient's worst nightmare. I can't begin to imagine what she went through. This has...

I'd like to offer a dissenting perspective. I am absolutely traumatised, completely and utterly traumatised by my interactions with the system. Being gaslit by doctors for years until one gained my trust and ruined my life. Thinking it was my fault. The interactions with people who don't...

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 lot and I should have waited longer for feedback. Word limit was 250, mine was 289 but I couldn't cut it down anymore. Hopefully they publish but...

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 anyone advise? I intend to fire one off this afternoon after a decent rest

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 illnesses. And legal consequences for causing deterioration or death as a consequence of that psychologisation.

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 bullshit. This is exactly the kind of nonsense that my doctors used to spin my head around, it is precisely the kind of nonsense that led to the doctors...