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The big difference is that, for me anyway, this is not constant. So it's not muscle weakness. One minute I can lift something fairly heavy without much of a problem, then another this 'wave' of heaviness comes along and it's like it's glued to the floor. But it's not fatigue or tiredness as...

At the other place I started a thread (Feeling very heavy - symptom that rarely gets mentioned) with this post: " I have come across anecdotal mention of this symptom but never seen it included in any diagnostic criteria I can remember. It is something that I regularly experience a lot...

Lynn Gilderdale https://www.meassociation.org.uk/2008/12/lynn-gilderdale-death-mother-arrested/

"the body of work produced this year decidedly situates ME/CFS within the realm of neuroimmune disease" - NICE and Cochrane please take note.

I don't think fundraising should be the main aim to start. I also think that there should be no mention of CFS; it wouldn't even have to mention ME. Rather than trying to include everything/anything in a very short ad, a fairly short campaign that promoted something else (something bigger and...

Chronic fatigue syndrome or myalgic encephalomyelitis BMJ 2007; 335 doi: https://doi.org/10.1136/bmj.39316.472361.80 (Published 30 August 2007) Peter White, professor of psychological medicine1, Maurice Murphy, consultant physician1, Jill Moss, founding chair2, George Armstrong, co-chair3, Sir...

Sorry to sound like a broken record but all people at NICE connected to the guidelines and the committee should watch Voices from the Shadows (the shortened version). http://voicesfromtheshadowsfilm.co.uk/ eta: with an additional 'update' ie that at least two of the patients featured are no...

I've done a transcript: (please let me know if I've made any errors)

" SolveCFS Published on Dec 12, 2018 At a recent SMCI gathering in Redwood City, Dr. Jose Montoya, a clinician who has fought for people with ME/CFS for nearly two decades, addressed those who suffer from ME/CFS on behalf of all clinicians. Dr. Montoya is a powerful and caring ally, and we were...

A Revised Approach for Chronic Fatigue Syndrome | The Morning Report Medscape Published on Dec 12, 2018 Currently, chronic fatigue syndrome, which is now called myalgic encephalomyelitis syndrome or ME/CFS, has no cure. But a recent summit concluded that there is much we can do to improve...

People in the UK may have seen a lot of adverts recently for Versus Arthritis; I only found out just now that Versus Arthritis was formed in 2018 following a merger of Arthritis Care and Arthritis Research UK. (Arthritis Research UK are on the CMRC). Although I thought the earlier ads were a...

family in galway appeal for help with son aged 32 with ME: https://www.workaway.info/711841688626-en.html @Tom Kindlon any way to 'reach out'?

sorry. I've been reading about the conference in 2008.......really depressing. I had no idea at the time that any of this was going on and I imagine that there are an awful lot of ME/CFS sufferers now who are also equally oblivious. But unfortunately keeping patients/members of certain...

ME/CFS Research: What do patients want? Why isn’t it happening? This is an expanded version of a talk given by Dr Neil Abbot (Operations Director of ME Research UK) at the Royal Society of Medicine conference “Medicine and me: ME and CFS — Hearing the patient’s voice” on Saturday 11th July...

It wasn't in her speech but in the Q&A afterwards. Having used the term she said 'that's a horrible word' so I'm guessing it was Medically Unexplained Symptoms, but she did do airquotes.

"Remember that history does not always look kindly on beliefs that were once firmly held by the medical establishment. In relatively recent times, for instance, homosexuality was held to be a mental illness warranting the most barbaric treatment. Before challenging a patient, a wise doctor...

The late Dr. Ann Macintyre's Frontline television program from the 1990s.