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Blimey this is bad.

Sadly that's sort of what the 2007 NICE guideline recommended at the time, but they should have used their observation and learned rapidly that it makes pwME worse, especially in such a severe situation.

Even that is insufficient for detecting PEM in my opinion, as it doesn't mention delayed effect, and doesn't distinguish between fatiguability/exertion intolerance that happens immediately, in my case to some extent during and after all physical activity, and the more dramatic delayed crash that...

Hi Nightsong, thank you very much for all your reporting. Please put your health first. There are others listening who can provide feedback and your health is more important.

Basing the study of a disease on 13 people who recovered, and not including people who have not recovered is bound to give a false perspective on cause and effect, especially in the hands of people with a preconceived notion of what ME/CFS is. This stuff is so harmful. Have they no idea that...

"...a gastroenterologist and intestinal failure expert" I assume it means intestinal failure.

Split from previous post which I added to. The old 2007 guideline, which would have been current at the time of Maeve's hospital stays, mentions dietetics as a possible specialism to be involved in care for pw severe ME. It also recommends an activity program on the principles of CBT/GET. I...

I've just checked. In the section on Severe ME: https://www.nice.org.uk/guidance/ng206/chapter/Recommendations#care-for-people-with-severe-or-very-severe-mecfs see my next post for 2007 guideline

Or perhaps Walitt is demonstrating his 'fear avoidance' and 'effort preference' - avoiding confrontation, but still really believing he's right.

So why did they place it as the central hypothesis in the published paper. If he really think that, he should withdraw the paper.

I hope clinicians from the hospital who don't believe ME/CFS is real, or think it's psychosomatic will be made to explain the evidence on which they base their belief and their recommendations.

This thread is the first I've heard of it, I think.

It's a campaign aimed at the government set up by two carers for partners with very severe ME/CFS following Covid infection. They have support from all the national UK ME and LC organisations. It looks pretty sensible to me. They are asking for the government to publish its delivery plan...

Other threads on the same stuff from Hyland: Symptom frequency & development of a generic functional disorder symptom scale suitable for use in studies of patients w/IBS, FM and CFS, 2019, Hyland A test of the adaptive network explanation of functional disorders using a machine learning...

The 65 symptoms according to this paper from 2018: Symptom frequency and development of a generic functional disorder symptom scale suitable for use in studies of patients with irritable bowel syndrome, fibromyalgia syndrome or chronic fatigue syndrome Michael E. Hyland a, *, Alison M. Bacon a ...

I think it would be worth adding to that list people in their 20's who have had time to reflect on the impact of being sick for long periods during their school years, and can tell you about the impact of disruption to their education has had on their lives.

I had an email from David thanking me for my donation a day or two ago. He said he's going through and writing to everyone to thank them, so it's likely to be genuine. You don't have to give information if you don't want to.

Thank you, @dave30th.

It is not clear to me whether this survey is intended as a research project to find out whether UK clinics have been implementing the NICE guideline, and/or for future use as part of the package of multiple PROMS to help clinicians care better for each pwME, and/or for service evaluation...