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Thanks, here's the introductory page: Developing a Clinical Assessment Toolkit for People with ME/CFS and Clinical Services. Stage 4: Patient Reported Experience Measure for ME (PREM-ME) We are asking adults in the UK who have been diagnosed with myalgic encephalomyelitis (ME), which is also...

Can anyone link to the survey, please.

Radio 4 Today program this morning from 40 to 46 minutes, a moving interview with Sean O'Niell https://www.bbc.co.uk/sounds/play/m002197x

Times Radio: Tne Times newspaper: https://www.thetimes.com/uk/healthcare/article/sajid-javid-labour-me-patients-suffer-without-cure-8zkj6prl6

The inquest into Maeve's death starts on Monday 22nd July. Copies of the tweets. Sean O'Neill@TimesONeill I spoke with @StigAbell yesterday about my daughter’s death and the stigma encountered by people with ME #pwme Times Radio @TimesRadio “The state was unable, and to some degree, unwilling...

Thanks to you and all concerned. Will you be publishing the letter and response here or elsewhere?

It seems a pretty daft task for pwME anyway. It hasn't been validated for ME/CFS and is inappropriate. I hope it's never used again. It was designed for people with depression, not people with physical diseases. The idea that we would waste our limited energy repeatedly pressing buttons to...

That's quite a task collecting and analysing all that personal data. I hope he finds it helpful. I have had a few desultory efforts at something similar, but given up because of the effort required. That's why I think it's probably worth signing up for apps that others have made to enable us...

Some posts have been copied or moved from this and other threads to a new thread to keep the topic in one place. Caroline Struthers' correspondence and blog on the Cochrane Review: 'Exercise therapy for chronic fatigue syndrome, 2017 and 2019, Larun et al.

Some posts have been copied or moved from this and other threads to a new thread to keep the topic in one place. Caroline Struthers' correspondence and blog on the Cochrane Review: 'Exercise therapy for chronic fatigue syndrome, 2017 and 2019, Larun et al.

Some posts have been moved to: Caroline Struthers' correspondence and blog on the Cochrane Review: 'Exercise therapy for chronic fatigue syndrome, 2017 and 2019, Larun et al.

I don't get how they can conclude there is no cognitive impairment when they found lower processing speed. It's not clear from the abstract what the other significant scores refer to.

I wouldn't start with YouTube as a source. There are thousands of people with poor understanding spouting all sorts of stuff, as we've found here, and those of us without background knowledge will find it hard to distinguish between them. I had a lovely time for a few years before I took on...

Given that even some ME researchers and doctors and patient groups try to insist that there is a lot known about ME/CFS biology, ranging from outlandish to possibly plausible if replicated, I don't think we can assume anything. It depends entirely on who they decide to consult and what...

Be careful what you wish for. You may end up with an item led by BPS proponents.

I think this whole thread has provided some very valuable contributions to the specific and wider issues about ME/CFS. @Lucibee, thank you for your contribution to this discussion. I think the concept of anchoring is an important one in the context of ME/CFS. I think the paper is sufficiently...

Rather than subjecting them to 2-day CPET and risking long term worsening, it might be possible instead to use activity and HR trackers and symptom apps combined with some of the findings from biomedical testing data from CPET studies of easily obtained biological samples, such as urine. This...

I agree that if a clincian is setting out to test a treatment, or to show it is effective, that is indeed a trial, and needs more than one patient and controls. I was thinking from the perspective of a patient who wants to test a treatment on themself, but perhaps it's expensive, or may have...

Interesting that Jonathan Edwards and my answers are so different. I was answering from the perspective of seeing so many people claiming they have been cured by LP, ear seeds, supplement protocols etc. In order to weed those out we need better ways to verify whether there really is any...

I think ideally I'd want the person trying the treatment to be diagnosed by a reputable doctor, had ME/CFS of sufficient severity and duration to be more than a temporary post viral fatigue, do a 2 day CPET, then track their symptoms and activity using validated technology for at least 6 months...