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I've linked this discussion from United Kingdom: Sussex & Kent ME/CFS Society News

Some discussion of experience with this group here: https://www.s4me.info/threads/what-do-people-want-me-to-ask-sonya-chowdhury-on-friday.40550/page-6#post-558609

Thread: Investigating unexplained fatigue in general practice with a particular focus on CFS/ME, 2016, Bansal

I haven't managed to read all the replies to this. I just want to say, I agree it's a big problem. I'm sure that before my last 10 or so years' experience of learning from discussion with others on forums, I would have been pretty useless as a patient rep advising on resources, even though I'd...

I think it's a really unfortunate coincidence. I gather from recent reviews of a political autobiography that yesterday, 10th October, is the publishing industry's big day for releasing books to hit the Christmas book market. Feel-good recovery stories are a key part of this, and it happens...

No suggestion it was 3-D printed, which I think would be impossible.

As I understand it, the patient group are AfME members. We have no reason to think they are from the Sussex group. This is what Sonya says about it in her recent letter...

I didn't read the article so negatively. It came across to me as someone who was very sick, gradually improved and while improving found joy in plants which helped her feel more positive.

According to the letter I received from Sonya, AfME does have a patient group to provide feedback on their work.

They have got it right about the need for rest. The rest of it - dietary changes - low histamine, gluten free, microclots, cold water therapy, red light therapy, are all anecdotal, and presented here as helping people, but not curative. Is it quackery? It's certainly not evidence based, and...

I'm lost for words. The insensitivity is breathtaking.

Number of patients First visit 175 Second visit 92 Third visit 43 How can they conclude anything about recovery rates when only a quarter of the sample are included?

On this aspect of AfME's work, the recent correspondence with Sonya over the care plan template fiasco may be of relevance. I have just posted Sonya's reply to my follow up letter on the thread...

I had the following reply from Sonya on 14th September. Sorry for not posting it earlier. I will reply briefly thanking her and explaining I don't have capacity to contribute further to AfME's materials but others on the forum may be interested.

I have never been able to do any sort of fitness or strengthening regime since getting ME/CFS because fulfilling my daily responsibilities and needs uses up all my capacity and more. I was encouraged to do some very simple horizontal brief pilates exercises many years ago, and just the few...

Do rheumatologists (or some other specialism not neurology or psychiatry or rehabilitation medicine) have a separate body that could be approached with a view to asking their leadership to adopt ME/CFS as a condition under their umbrella? The psychiatrists took 'ownership' of ME/CFS 35 years...

As far as I know the big reveal of his discovery he promoted on social media was presented in the paper discussed on this thread: Preprint Increased circulating fibronectin, depletion of natural IgM and heightened EBV, HSV-1 reactivation in ME/CFS and long COVID, 2023, Liu, Prusty et al

For those who don't have access to Apple podcasts, the BBC World Sevice lists all its podcasts here: https://www.bbc.co.uk/programmes/articles/2SHPBt3FsvmhCglB60f86CY/podcasts-from-bbc-world-service

Thank you. I think we need to coordinate it privately. I haven't discussed with the committee how we do this. I'll add your name to people interested in helping.

We have that in mind, though currently don't have the capacity to organise it quickly.