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I forgot to comment on these questions. They should not be there. As we know, there is currently no explanation of what causes ME/CFS. We know for some people it's triggered by an infection, and that exertion makes symptoms worse and can trigger PEM. We don't know why. If clinics are giving the...

That assumes the pwME has sufficient knowledge to assess whether the information they were given was accurate and up to date. Given the problems with some of the BACME materials, this is highly questionable. How is the pwME supposed to answer this? Combining these on one question is unhelpful...

I assume these are intended to find out whether the clinics are following the NICE guidelines. Which is OK, but I think it should also include something to explain to participants at the end of the survey that some of these are asking about things the clinic should not be doing. A previous...

Still using the 'baseline' terminology' unhelpfully. And an assumption that at baseline one has no or few symptoms. Not my experience, and I suspect not the experience of many, especially those more severely affected. I think it's insulting/harmful to write a survey that suggests there is such...

Symptom contingent pacing is not pacing up. Symptom contingent pacing, as I understand it, is pacing guided by symptoms, both immediate increases in symptoms and using past knowledge of our bodies reaction to exertion and how much we can do with increasing symptoms without triggering delayed...

17. What interventions did you receive? (tick all that apply) Yes No Tests (or referrals to another service) for other conditions Tests to make or confirm the ME/CFS diagnosis Explanation of the physiological causes and impact of ME/CFS Explanation of the psychological causes and impact of...

I guess most of us won't be eligible to do this one, as we haven't 'received treatment' for our ME/CFS in the NHS in the last 3 years. Given that there is no treatment for ME/CFS, that means nobody. I gues they mean people who have been to specialist clinics.

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.