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This is excellent. Thank you again for writing it. Spoons well spent!

2nd draft, excellent work. Thank you for speaking up Possibly add a suggestion to consider the number of comments under the article of people's lived experience.

Amazing and heartbreaking book. I await the ME version with utter sadness and horror that nothing was learned. Not a damn thing. Well, not by the medical community, at least.

Yes! How do we make this happen? Seriously? I am willing to write letters, have (virtual) meetings etc.

This. I want to scream this from the rooftops. People are dying horrible, awful, preventable deaths and the main charity is spending precious research funding on... another questionnaire.

Ah, yes, the "Bad Patients" who dared to do their own research, and speak to other patients in those pesky support groups, and then dared to ask questions like "hang on a minute..". Absolute militants! And worse still, had the absolute temerity to not get better. No, we don't want those ones...

As one of the authors of the letter, the answer to that is to reply and say actually no, it hasn't provided any reassurance, in fact, the exact opposite. It is frustratingly disappointing, as this is the same information that has been provided to anyone who has asked for the last two years. And...

Wow. Plus ça change..

What was the report prior to Rethinking ME? The Gibson inquiry?

It's the paperback. The hardback came out in 2022

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...