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If we consider ME/CFS to be a disease with a unique pathology or a set of diseases with common symptomology and unique pathologies, then the equation PVS = ME/CFS does not hold until we have evidence of the respective pathology or pathologies. It might be for example, that PVS or other temporal...

It's a definitional problem, Long Covid Syndrome includes so many pathologies that there can not logically be a simple equivalence of LCS = ME/CFS. Occurrence of classic Post Viral Syndrome and long term ME/CFS following COVID19 infection is an important area of study but it needs to be...

This is yet another study which shows that any link between ME/CFS and the spectrum of illness covered by "Long Covid Syndrome" is tenuous or otherwise is somewhat discrete within the LCS affected population. The link with obesity is unsurprising as that is a known predisposition for more...

Wasn't sure where to put this, it's important in understanding what does and does not get published - twitter thread:

https://www.firmenwissen.com/en/az/firmeneintrag/20095/2152034173/ME_CFS_RESEARCH_FOUNDATION_GGMBH.html "ME/CFS Research Foundation gGmbH has its registered office in Hamburg, Germany. Its current status is listed as active. The company is registered at the Trade register at the local court of...

Scepticism is certainly justified - I wonder however whether this is not a political move "away" from the failed CBT/GET focus rather than a retrenchment into it. If the NIHR is true to its word...

Agree - though more broadly it is matter of appropriate allocation of resources matched to aims and ambitions. As an example for comparison, historically MEA and AfME have had different staffing models where the former has a much lower staffing cost, yet the MEA can not be said to have had...

I don't like websites that are seeking my money and which don't have an upfront of: who (named persons with whom the buck stops), where (physical address) and what (simple statement of what is being payed for). The lack of that in a service which by definition is targeting a population which...

Terms of use: https://neuroproactive.com/wp-content/uploads/2021/04/Neuro-ProActive-terms-and-conditions-12-08-20.pdf Company data: https://find-and-update.company-information.service.gov.uk/company/05780057

Focusing on disabled children is the whole point, it's why the report was created in partnership with Disability Rights UK - their member organisations list: Member organisations includes AfME. Disabled kids often have a greater need to be given time/space for activity and to have...

There is a huge public health problem in the UK, where sedentary behaviour and massive calorie intakes are causing an epidemic of avoidable disease. Number of children getting enough physical activity drops by 40% "The number of children meeting the recommended amount of physical activity for...

"Establish the first Genetics Centre of Excellence. We will establish a virtual network of M.E. researchers to work with the M.E. community, to build on the genetic insights gained through DecodeME and other studies. We will establish a programme of high-quality research, supported by the Centre...

At this point, it has to be accepted that ME/CFS is a very difficult problem. Even if resources hadn't been wasted on chasing down a mythological psychological cause, 20thC style biological investigation may not have advanced understanding of ME/CFS very far, or even at all. We can see from the...

Probably worth mentioning IBS as a co-morbidity, not just a stand alone illness. IBS in ME/CFS may be different to IBS in an otherwise healthy person.

The decision about NIHR's long term funding of/ relationship with Cochrane is due this month - the current arrangement ends in 2023. Presumably this has implications for both the advisory group and the planned substantive review ? If Cochrane doesn't yet know how it will operate in 12 months...

Thank you. I think that "postviral fatigue syndrome" is doing a lot of work !

Do they give a reference for that ? Incidence is very poorly recorded which makes understanding recovery rates very problematic. That Norway figure would translate as 23k new cases a year in the UK which when matched with published age of onset figures would mean 70%+ lifetime recovery rates.

You are right of course. But - committees ! They have a life of their own, and are almost impossible to kill, they just go on and on unless someone decides to actively put them down. In the case of this advisory group, until its collective membership has decided it has done enough advising, or...

I guess a lot of those who might be involved have had a major diversion of attention/resources* because of 30 months of pandemic. Certainly Hilda produced a lot of very valuable work on vaccine efficacy. Even people we are not well disposed towards may have experienced very profound impacts on...

I'm sure that is right. There isn't much latitude for arguing with NIHR for more basic research because that isn't what the core NIHR brief is and the NIHR might reasonably argue that funding basic research is the MRC's role. In reality there's a lot of fuzzy boundaries, hence NIHR cofunding...