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The writer of the article completely misses the point that there is no evidence to support brain rewiring as a treatment for ME/CFS, and she doesn't mention harm suffered by many from the likes of LP which is based on the same ideas. It is pseudoscience, and should be called out as that. I...

Is it possible for a patient who is very sick to be sedated for a long ambulance trip?

There is no detail given on the 'specialist centre'. I hope it's not CBT/GET.

I'd be wary of a UK ME/CFS public enquiry while the likes of Wessely, Sharpe, White, Chalder, Moss-Morris et al are still influential. The desire for 'balance' can scupper deep understanding of the problem, and eminence over-ride evidence.

If you pick a few at random from the subforum labelled: Psychosomatic research - ME/CFS and Long Covid You'll come across plenty that claim an association and at least imply cause.

I also like the invisible electric fence image. My one I invented before I even knew about PEM was that my life was like walking a tightrope where a single misstep or puff of wind could topple me off, and I never knew how far I'd fall and how long it would take to climb back on again.

I've glanced through the transcript. There seems to be a lot of telling each other what wonderful doctors they are and how exciting it is to be working together. Lots of stuff about MCAS and connective tissue and CCI/AAI/tethered cord which I think Dr Ruhoy is involved with. I don't think I'm...

Can someone alert them to Wesselyite psychiatrist Dr Ben Shepherd who is a tory shadow health minister. If they are doing parliamentary advocacy, his intentions need to be clarified. He has expressed an interest in ME/CFS, and ì fear will try to wield influence against the NICE guideline.

I don't think we have seen any evidence of preexisting psychiatric illness being a risk factor for developing ME/CFS. The studies of people developing ME/CFS following EBV by Leonard Jason found none. The only ones I recall that claim cause are wrongly imputing a causative direction from an...

As I understand it the Gibson Enquiry was just set up by one MP, and had no official status. If anyone wants to discuss it, we probably need a new thread. If there is to be an enquiry with any teeth, it needs to be officially set up by the government.

That's really good news. Such a pity the GP was so slow to believe you.

The bit about the contrast in research interest and funding really hits home with the description of what research meetings are like.

Do we have evidence of this pattern. Maybe worth a forum poll to see what other members experience is.

The UK listing includes a link to their webpage which says Cochrane UK is now closed, so presumably the contact details are out of date.

If some members want to work together to collect members views, and write a response, please do. Whether that becomes an official S4ME response will need committee approval. From my perspective as a committee member, I would say we don't have the resources to lead such a response. It may be...

And again I drop a few words into the void that is Hilda's talk page: trishrhymes October 22, 2024 at 1:59 am Your comment is awaiting moderation. Hilda, Another article for you to read and pass on to the IAG and people at Cochrane, please...

This strategy reminds me of workplace resilience training for people being bullied at work, which is the wrong way around. They should sack the bullies. Similarly, it should not be up to people with chronic illness to learn to cope with prejudice. It's the prejudice that needs to be tackled...

Huge thanks to @Chris Ponting and @Simon M. I think that's one of the best articles I've read about the current state of ME research and care. Well worth sharing widely.

Typing on my phone is a minefield of autocorrect and random accents. When I'm exhausted I don't notice all sorts of oddities appearing:emoji_koala: :emoji_frog:

All that work by so many people, and still they don't produce anything that makes sense to me as useful either for helping individual patients or improving services. It's all still based on therapist ĺed services as per BACME.