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The following posts have been moved from this thread. Have just noticed this on AfME website: https://www.actionforme.org.uk/news/me-research-hra-reviews-ethical-concerns/ @dave30th @Andy and...

Interesting paper on initial work they have done. https://people.bath.ac.uk/cs3sj/papers/CHI2019-jones.pdf Not sure I would say ME leads to social impairment, more like social limitations due to physical and cognitive problems. Have not yet read the full article.

@Jonathan Edwards, have you seen posts from @cathrine engsig #27 and @MEinDenmark #17 Just checking.

Apologies @NelliePledge, my comment came across too strong.

Have a good rest, you have been amazing. Thankyou

My hope right now is for biomedical science research breakthroughs and resources for that commensurate with actual disease burden. Alongside that is a frustration that the psych cabal still rules the medical and media narratives. A hope that this mirage will soon explode.

Thanks Natalie. Ed Scully did say that he has a couple of friends and a, not immediate, family member with ME, and seemed to grasp that it is not a "trivial" disease. He seemed somewhat gobsmacked, when Nina Muirhead outlined the BPS content of the current CPD module for GPs and the fact that...

I was pleased to attend the conference yesterday and felt encouraged in several ways, which I will expand on later. I do feel that the attitude has changed within the last 3 years, that I have been attending. (Not only due to me being there!!) There is a huge distrust of the charity among many...

Think this phrase has a definite resonance! "There are examples of experts being less than accurate in their account....." It is relevant to so much of what "experts" and others, such as Benefit Assessors say in relation to ME.

The two booklets ie Employer and Employee are very similar initially. P4, "What is ME?" incudes the following statements: "Around a quarter of people with M.E. are severely affected, leaving them house- and/or bed-bound for long periods. Those experiencing this level of symptom severity are...

Thanks Trish. I can now access them online again.

From their website it looks as though a couple of the toolkits, not the one for professionals, have been updated. Does anyone know how different they are/any better? Just getting background for Tues, but I suspect that a general Q re employment/studying rates will be more appropriate for Q and...

AfME website seems to be currently inaccessible. Maybe they are changing things....

A big thank you to everyone on the thread who have made suggestions. Please note that MEAction UK is reliant on a small number of healthy volunteers doing this. Many of them have also been very busy with the survey for NICE and collating responses to very tight deadlines. I have tried to help...

Thanks @InitialConditions, have forwarded this.

Yes, happily. If you want to send me an outline of why severe young people, such as your daughter, were not able to participate in the latest Oxford Brookes survey, I can pass that on too.

Wonder if their "Big Survey" results to be released at their AGM, next Tues, 15 Oct, will include any info on how many people with ME can work/study...

Exactly! I will try and find out roughly how many CYP were recruited, next Tues at AfME AGM. I have a nasty feeling it may be quite a small number, but the Parents' Facebook group have also conducted their own survey for submission to NICE. I will also ask AfME re the ME info video by Emily...

The survey has been closed since at least last friday, 27 Sep. Per AfME *Please not that Oxford Brookes have temporarily closed recruitment whilst they process the applications that they have already received from young people with M.E./CFS.*...

Thanks