Search results

Thank you @Ravn for setting out the problem with all ME/CFS definitions so clearly. I think the heart of the problem is how PEM is defined and diagnosed, and I agree the questionnaires designed by Jason's team under the DSQ heading are unhelpful. We need very clear ways to distinguish between...

Some posts have been moved to: USA: National Institutes of Health (NIH) intramural ME/CFS study

Don't let my comment put you off testing the questionnaire. It's important they get as much feedback as possible. I'll try to have another go another day when I'm feeling more positive.

I got around my problem reading the small pale text by massively expanding the text using Control +. But, like Andy, I gave up after a few questions. They have muddled together the immediate shorter term effect of all activity which was what they seemed to be asking about, then suddenly...

I just opened the questionnaire and fell at the first hurdle. They have used a pale grey small type for the introductory section I can't read. I scrolled down to the questions and they are grey on grey which is just as bad. Not sure what to do.

:hug: rest well.

I can't use 'biological' clothes washing stuff as it makes my skin itchy. I just use Ecover plan unperfumed bog standard laundry liquid for clothes. When cooking rice in the microwave, what proportion of water to you use, and do you start it with cold or boiling water?

That sounds ominous. I hope they are not placing weight on the old HPA axis, sympathetic overaction, it's really just stress hypothesis beloved of some BPS people.

Another anniversary passes in the interminable process of producing a replacement review: 4 years ago: 13th February 2020 Appointment of lead to independent advisory group "Cochrane’s Editor-in-Chief, Dr Karla Soares-Weiser, said: “Hilda’s appointment marks the first steps in Cochrane’s...

2024 Week beginning 15th January 2024 Cochrane petition and complaints The Science for ME petition 'Cochrane: Withdraw the harmful 2019 Exercise therapy for CFS review' remains open and so far has nearly 10,000 supporters. We await further news from Cochrane on our complaints and on progress...

Thank you Joanne Hunt. I think this is a clear account of the historical situation in the UK in terms problems with access to state disability benefits for people with serious long term health conditions such as ME/CFS and now likely to be applied to people with Long Covid too. The familiar...

Me too, @Peter Trewhitt. No pots to wash and only takes 1.5 or 2 minutes to microwave. Other option is on a good day boil up a quantity of rice in a saucepan and divide into portions in containers that go in freezer and microwave, cool quickly and freeze for later use.

I'm not on Twitter, so I can't reply directly to Kim H Hi Kim H, if you're reading this, I'm sorry you feel your condition is ridiculed. That's certainly not the intention of the discussions of FND on the forum. We understand all too well what it's like to have one's serious and disabling...

I think the only way we can get change is having doctors who understand ME/CFS is not what Wessely and co portray it as, and take the fight to the top of every medical organisation and university. I think it has to come from within the profession from people other doctors respect and will listen...

Looks like it's the same pyramid selling model as LP. Also calling their practitioners coaches rather than therapists, is part of the same scam set up to stay outside medical regulations.

I agree. I looked at it this morning expecting to find something I could give an anaesthetist, and was therefore disappointed. It's very good for its intended purpose, but I hope there's a much shorter version for anaesthetists in preparation that we can give them when needed.

I would lay the blame equally on Michael Sharpe and Peter White, both of whom have not only influenced the medical profession, but also the media, government and health insurance companies. Though Wessely has managed to get himself into higher places including now being on the governing board of...

Will this disaster never end. I have submitted this on their contact form: The automated reply promises to get back to me within 48 hours.

The committee has added a new update on the petition. In summary, we say there's no news from Cochrane since the December update from Hilda, and no news on S4ME's committee complaints since we heard some of them are being considered. Petition update...

I'm not clear on what grounds you suggest many similarities between ME and Parkinsons disease. They seem quite different to me in main symptoms and course of the disease.