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"my research isn’t diagnostic led, so as long as individuals have experience of chronic fatigue they can take part. No diagnosis required."

I think this is the kind of thing that changes people: https://www.theguardian.com/uk/2003/sep/14/animalwelfare.science for Blakemore it stopped being just about the science but the politics of what he understood science to be. Others clearly exploited that with their own claims of 'oppression'...

An in memoriam that doesn't mention CFS, or the minutiae of the SMC: Professor Sir Colin Blakemore FRS Blakemore may have been unhelpful in the cause of finding solutions to ME/CFS but he was an important scientist and science communicator.

I don't think there's anything 'invalid' in what the Griffiths Uni team are doing - it's the way lots of chemical physiology has progressed, teasing apart one element at a time. With TRPICs there's a range of related functions, all of which may operate in different ways...

I've no idea but given the range of diseases associated with peroxysomal dysfunction it seems unlikely that dietary modification would have a general application. The authors acknowledge the possibility of sub groups which suggest that a one fix fits all is going to be unlikely even if this is a...

Peroxisomal dysfunction ? If correct this would seem to have major implications for how we see ME/CFS: Handbook of Clinical Neurology Chapter 163 - Peroxisomal disorders Abstract The peroxisomal disorders represent a group of genetic diseases in man in which there is an impairment in one or...

Fever isn't something that has been recorded, and it's not something that patients typically complain of - however perhaps it should be an area of enquiry. N=1 low grade fever/chills were always part of my PEM experience. More broadly if ME/CFS were to involve immune dysregulation then perhaps...

American Academy of Family Physicians would seem to be the source of some of the unhelpful material: dated 2012 ! Chronic Fatigue Syndrome: Diagnosis and Treatment "SORT: KEY RECOMMENDATIONS FOR PRACTICE Clinical recommendation Evidence rating References Persons with chronic fatigue should...

Pelvic Congestion Syndrome : "Differential Diagnosis The list of the differential diagnoses for pelvic congestion syndrome is vast. It includes diseases of the urinary tract, gastrointestinal tract, musculoskeletal disorders, disorders of neurological origin, gynecological problems, and mental...

For thost asking what is The Unified Protocol ? Unified Protocol for the Transdiagnostic Treatment of Emotional Disorders in Medical Conditions: A Systematic Review, Osma et al, 2021 full paper = https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8151777/ Abstract: "Emotional disorders are those...

This patient leaflet is dated 2020 - I don't think it is at variance with the current job description: pdf = https://doclibrary-rcht.cornwall.nhs.uk/DocumentsLibrary/RoyalCornwallHospitalsTrust/PatientInformation/ChronicFatigueSyndromeCFSME/RCHT1861SpecialistOccupationalTherapyInCFSMEService.pdf...

A most telling quote: "This is disappointing as there had been some hope for an easy solution" * I think that quote is revealing of the enthusiasm for this kind of intervention at the political level. Easy = cheap, and that is a defining attitude to children and young people in the UK...

It could be bigotry but can also be explained by institutional inertia - no one is in place to make a principled decision for change, so the system just keeps pushing out the same product. That may be a result of poor management, but it is often a symptom of an overstressed system that is...

How the hell do you evaluate a 3 year old for FND ? Or perhaps more importantly "why would anyone think of doing such a thing ?". And 21 is now the upper bound for paediatrics ?

It's a bit odd how Tommy Parker is described as CEO of Ki Active(R) when there is no company registered under that title - https://www.weahsn.net/2020/10/meet-the-innovator-tommyparker-kiactiv/ and https://kiactiv.com/ Ki Active seemingly is only an internet construct - ownership of the...

NSF Science of Science Proposal: Randomized Trial of Registered Reports, MetaArXiv Preprints, 2022, Brian Nosek et al. Center for Open Science NSF Science of Science: Discovery, Communication, and Impact (SoS.DCI) Randomized Trial of Registered Reports - Project Summary Overview. The...

The doc actually says at section 8. summary box: https://www.england.nhs.uk/coronavirus/documents/long-covid-the-nhs-plan-for-2021-22/#equity "Building on the invaluable input to date of patient advocacy groups, six Patient and Public Voice Partners have been appointed to work with the Long...

I'm sure this is an important document, though without actual resources to back it up, the overwhelmed under funded Welsh NHS will be unlikely to respond meaningfully. However I baulk at the use of partial statistics to make a point. The report says: "which shows that...

That is exactly right. To quote from the UK Parliament website: "All-Party Parliamentary Groups (APPGs) are informal cross-party groups that have no official status within Parliament. They are run by and for Members of the Commons and Lords, though many choose to involve individuals and...

At some point in advance of the next election, or within the campaign should the election be imminent, we would need a concerted campaign to get all Parties onside - it's an opportunity for grass roots activism - issues previously discussed here...