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We have some members only polls on symptoms here, here, here and here and more.

Dr Bateman gave a talk to doctors in 2019 about ME including a section on orthostatic intolorance (the inability to be upright). The video and discussion are on this thread: Video: Upright Activity and Exercise Intolerance: Critical Concepts in the Evaluation of Chronic Fatigue, Dr Lucinda...

More discussion on this thread and others with microclots tag. Challenging the current hypothesis that thrombosis is responsible for the post-COVID-19 condition, 2024, Carson, Davey Smith, Garner et al

For more discussion of microclots go to this thread: The micro-clot finding in Long Covid — implications for the possible aetiology of ME/CFS

Threads on the Dubbo study: Post-infective and chronic fatigue syndromes precipitated by viral and non-viral pathogens: prospective cohort study, 2006, Hickie, Lloyd et al Contribution of individual psychological and psychosocial factors, Dubbo Infection Outcomes Study, 2019, Cvejic, Hickie et al

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I haven't read most of it, just skimmed and copied headings.

Not my experience. Rapid fatiguablity, pain, increased symptoms during and after exertion. Exertion intolerance. My muscles do not function normally. PEM is a delayed worsening of all symptoms additional to this.

Despite the problems with her book, I wish Miranda well, and hope she's not over exerting herself.

That bit puzzled me too. More about PROBE: . 1992 Aug;1(2):113-9. doi: 10.3109/08037059209077502. Prospective randomized open blinded end-point (PROBE) study. A novel design for intervention trials. Prospective Randomized Open Blinded End-Point L Hansson 1, T Hedner, B Dahlöf Since it would...

We had home visits from our local ME service about 13 years ago. It was the same OT who ran the outpatient clinic groups recommending the same diary keeping and add a new activity each week. Completely useless.

From reading about others' experiences, I think a few people can increase strength in some muscles by very slow and careful focused exercises using specific muscle groups, provided the exertion involved doesn't exceed their 'energy envelope'. So they might be able to improve their hand grip...

I've copied rather a lot, and not necessarily the 'best bits'. I intend to go back over it later to weed out a lot of words and home in on bits particularly relevant to clinical trials of psych and behavioural interventions for ME/CFS. This was linked on the forum via a Cochrane article...

Ha, yes, you can see from the bits I've highlighted so far that I'm looking for the smoking gun.

Continued from above page 37 2.3 Good clinical trials are collaborative and transparent 2.3.1 Working in partnership with people and communities 2.3.2 Collaboration among organizations 2.3.3 Transparency 2.4 Good clinical trials are designed to be feasible for their context 2.4.1 Setting and...

A thread on this document: Guidance for best practice for clinical trials, World Health Organisation, 2024

Discussion of this document has been moved to a new thread: Guidance for best practice for clinical trials, World Health Organisation, 2024

Moved from News from Cochrane https://iris.who.int/bitstream/handle/10665/378782/9789240097711-eng.pdf?sequence=1 page 8 The Technical Advisory Group (TAG) for Development of Best Practices for Clinical Trials was constituted through a public call for nominations. 16 names including Karla...

I think the prominence given to OI in the article is justified because it seems to be a major factor in problems very severe pwME face with enteral feeding, and not coping with lying at the angle recommended by guidelines. For me, OI is a significant problem and is more disabling than...

I am put off by the title. Why do scientists try to be creative writers? The degree of confidence of assertions in the abstract also put me off. Doesn't come across as serious science.