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Am I the only one thinking that we might want to be writing to Dr Henrietta Hughes?

I have an annual asthma review and am asked "does your asthma stop you from doing any activities" To which my answer (often said in unison with the previous asthma nurse who had known me a long while) "no, but my ME does" My practice as a whole understands/ accepts that I have ME, mostly...

This is a really good point. None of this should be in any way antagonistic, it should be completely collaborative.

Oh. Oh heck. Stupid question, but has the S4ME letter been sent to Keith and Russell as well as the trustees..? Keith seems to be pretty switched on, so I understood, so am surprised by this. Russell and MEA seem to be focused on patients on the mild scale, but surely even at that level a 98...

This really gets to me. Paternalism at its worst. Michael J. Fox says “Parkinson's patients are the experts on what we have. We have a responsibility as patients to share our experience — what works for us, what we respond to, what we can contribute to research.” But then he had to set up The...

This. I have spent the last few years doing everything I can to try and change... Any of this. ME, benefits, mental health... It has contributed to my health deteriorating and now I wonder if anything I do or have done makes any difference at all or if I did nothing if we would be in exactly...

I did the HOPE for Long Covid course, on an app on my phone and they had a couple of weeks or so on figuring out what matters most to you, with fun videos and helpful prompts. I now have a list on an index card, super helpful. Surely, given this already exists and is a self paced, easily...

why would it not be possible to download a .pdf? That is how I would expect this to work; it is widely used elsewhere. Why can't patients have a copy for their own reference and monitoring? so patients are expected to complete these epic questionnaires as the basis for an appointment and the...

I feel absolutely bl**dy furious that in the middle of the Post Office scandal, the tainted blood scandal, the Tavistock clinic scandal, the carer scandal, where victims were blamed, dismissed and wilfully ignored we provided expert by experience input and constructive criticism based on...

I attended (virtually) the rehab course the LC clinic ran. It was two hours once a fortnight and we all said; why isn't it an hour a week? and they replied that it gave us chance to rest in between. When we pointed out that we wouldn't need two weeks to recover, if they cut the session in half...

OMG. "co-production between people with ME/CFS and specialist ME/CFS services. This is to ensure that the toolkit provides information that is important and relevant to both people with ME/CFS and clinical services, and is easy to use. Ensuring the ‘patient voice’ is heard is front and central...

That's a terrifying thought, claiming to help while using the tools they claim do so as a silencing technique.

Is there any way we can find out? Maybe contact the MS society & cancer research UK & show them this and ask "do you get asked this stuff?" Could we then ask MEA why they / clinics are asking pwme? Not that they are listening, as the reponse to the excellent S4ME letter showed. MEA also...

Apologies. The Sussex group was slightly sarcastic shorthand, as that group is known to be very supportive of GET/CBT and the researchers involved in the BPS position and their involvement would allow the "patient participation" box to be ticked while only asking a supportive patient group...

Oh, WOW those comments! :jawdrop:

Is it the Sussex group?!

Did anyone else see this..?

Interesting phrasing. My understanding was that it was a massive community wide effort?

...And this post is how I found out that I am blocked by Michael Sharpe. Who I have never interacted with. Excellent "support for 'freedom of enquiry" :rolleyes:

Oops. I think I am repeating known info, but had a conversation about this elsewhere today.