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I think it was naïve to combine social media responses with those from recent service users, these are two distinct groups, the former with identities that may be impossible to verify and I think it is reasonable for the Bristol service to question whether it's possible to get any useful patient...

I think that's demeaning of those patients who replied positively; why should we presume to discount their experience ? Also I can't see where the patient selection comes in, referral to the service is by GPs, so there's no prior rejection involved...

Always a confusion because Esther Crawley is a Professor of Child Health with the Bristol Medical School which is part of Bristol University, AND she is also head of the Bath Paediatric CFS service, which is run by the RUH Bath NHS Trust, while the Bristol Clinic is run by the North Bristol NHS...

The RCPCH pre August 18 grumbles, parsed by the RCPCH's lawyers !

= MUS https://www.gosh.nhs.uk/conditions-and-treatments/conditions-we-treat/functional-symptoms/ More at link

Child and adolescent chronic fatigue syndrome/myalgic encephalomyelitis: where are we now? April 2019 Current Opinion in Pediatrics 31(4):1 The links I posted for UCLH are behaving weirdly and not displaying fully - but I just thought it odd that Gregorowski was previously listed as...

Newton et al. The Newcastle NHS Chronic Fatigue Syndrome Service: not all fatigue is the same. J R Coll Physicians Edinb 2010; 40:304–7. Download pdf version here Edit to add: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3269106/ and...

Thanks for pointing that out, it's not a name I'd come across before - or at least attached any significance to. I did a bit of searching - although the BACME bio gives her as "clinical lead of University College London Hospital TRACCS (Treatment and Rehabilitation of Adolescents and Children...

There is no Government defined figure for ME/CFS research. There are two sources of Government funding for medical research, the Medical Research Council and the National Institute for Health Research - both of these are contributing to the DecodeME study, I can't recall the exact split but the...

BACME is an Association of professionals working in the field of ME/CFS - this kind of Association is common amongst health professionals in the UK. It doesn't have any formal role within the NHS, but as with many such Associations it includes in its Objects [1], provision for education and...

There seem to be only 5 sequelae recorded that map to main ME/CFS symptoms - fatigue, muscle weakness, joint pain, memory problems and sleep disorder. Of these only sleep disorder does not show marked age related significance - Table 3. And interestingly all five present disproportionately as a...

The usual trick of putting a multi year figure in the headline, which will be endlessly repeated year on year making it appear that the investment is 5 times higher than it is. £75 million a year appears to be an increase on this area of research but it needs picking through the accounts to see...

Not sure if these are helpful or not: 1. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8292678/ 2. https://onlinelibrary.wiley.com/doi/10.1111/dmcn.13349 3. https://onlinelibrary.wiley.com/doi/10.1111/dmcn.13159 4. https://sci-hub.se/10.1007/s10072-019-03930-3

This reads like a totally different paper - but seems to use the same data: https://academic.oup.com/occmed/article-pdf/69/6/453/30092523/kqz108.pdf

It is what in Google world is called the "Knowledge Panel" here's the Googleverse explanation: https://support.google.com/knowledgepanel/answer/9163198 . At the bottom of the panel, outside the frame on the bottom right, is a feedback link. If any one is motivated maybe they could post a link to...

This questionnaire isn't about gaining data, it's a test-retest[1]procedure for testing the statistical validity of the questions, which in this case are to be used in a formalised questionnaire to help (?) people suffering from PEM. That's why it is in three parts - the middle bit is to provide...

I though it was about relative performance across three dimensions - before ill, ill but on a good day, and today - I didn't read anywhere that it asked if you were experiencing PEM today.

I'd like to see a statement of how that hypothesis meets a test of falsifiability.

Maybe, but as the sole Green MP she will have multiple Westminster demands on her time and the number of APPGs is huge, she seems to be or has been on several APPGs that cover Eco issues. As a general measure, that an MP isn't on a particular APPG probably doesn't say much about their position...

Autism-related dietary preferences mediate autism-gut microbiome associations. Chloe X. Yap, Anjali K. Henders, Gail A. Alvares, Andrew J.O. Whitehouse, Naomi R. Wray, Jacob Gratten Summary There is increasing interest in the potential contribution of the gut microbiome to autism spectrum...