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Perhaps you're not aware of the history: the clinics were originally created as the result of political direction (in no small part due to non-specific, undirected "we want clinics!" pressure from patient organisations). They can be un-made, or re-made, in precisely the same way. Is there any...

I'm not convinced that a "professional charity CEO" with no personal experience of ME/CFS is the right way to go. Many of them will want to move on eventually to bigger & better positions in the ever-burgeoning "third sector" that will be dependent upon the largesse of governments, large...

Oops, yes, sorry, typo - 2022, not 2002. (Fixed.) It doesn't appear in the epidemiology section of the 2009 Purple Book either. I wonder if they may have been conflating the ~5-10% persistent symptoms after certain acute infections (Dubbo, Katz & others) with a general population susceptibility?

I can't find that claim in s4.1 ("Epidemiology") section of the 2022 ed of the Purple Book. I also can't find any mention of that range by searching for "susceptible" and a few other possible keywords. Here's what it says about the epidemiology:

The reference given re the "modified Zelen" design is to Campbell et al (link): and: I can't immediately find any exploration of the acceptability of this design. The original Zelen was widely regarded as unethical and was found to be unacceptable to patients in a survey in Snowdon et al...

The authors say in relation to the NICE guideline that "Cognitive Behavioural Therapy (CBT). . . is underpinned by a biopsychosocial, illness model of fear avoidance", but that's not what NG206 actually says: s1.12.32 goes on to say that it: This is all rather fuzzy - perhaps deliberately so...

Abstract: MicroRNAs (miRs) are involved in regulating various biological processes and may contribute to the pathophysiology of fibromyalgia syndrome (FMS). In order to explore correlations with clinical characteristics and to identify specific clusters, we performed plasma miR sequencing in 113...

Years ago I obtained copies of the Clayton reports on Camelford (media coverage usually refers to the "Clayton report", but there were actually two) - I wondered if they were of some relevance given the psychobehaviouralists' interest in the event. They were only available in hard-copy at the...

Abstract: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a clinically heterogeneous disease lacking approved therapies. To assess genetic susceptibility towards a specific metabolic phenotype, we performed a genome-wide association study on plasma biomarker levels (mGWAS) in...

An interesting exchange between Tessa Munt MP & the MEA re DWP & benefits for ME/CFS: Link

Re the post-mortem studies - if you search PubMed for post-mortem/autopsy in ME/CFS most of the results you find are where specific viruses have been looked for. There is a paucity of serious neuropathological evaluations. In my collection of research publications I did find that at an...

MEA's AGM has been announced for 12 January 2026: [url unfurl=false]https://meassociation.org.uk/2025/11/members-only-notice-of-annual-general-meeting-of-the-me-association/[/url] Hopefully some members will ask them about recent events. (Questions "must be received by 5 January 2026 to allow...

Another psychobehavioural clinic, then. Precisely what we do not want and do not need. To the pwME who are in favour of this plan, I would ask: who would run such a clinic? Is there a suitable candidate ready, waiting and willing? Does the NHS have a good track record when it comes to providing...

Via OMF - an interview with @MelbME and Wenzhong Xiao:

Moved post --------------- There is a brief abstract in the supplement to the Journal of Immunology - Single cell epigenomic profiling identifies a distinct classical monocyte subset driving inflammation in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME) Not sure if this needs a...

They have published, earlier this year, a document authored by a principal UK psychobehaviouralist and board member of BACME. Their website described that as a "collaboration with North Bristol NHS Trust"; the Bristol clinic is run along psychobehavioural lines, as I think the overwhelming...

AfME has certainly improved of late. Their collaboration with serious researchers is very welcome. Some of their political efforts may be beneficial. However I can't, in good conscience, donate to a charity that does not accept that we need supportive medical care rather than psychobehavioural...

While this may be an improvement on DSQ-PEM I think it is premature. We need some more preliminary research before a new questionnaire is designed specifically to determine what type of questions will discriminate best between PEM in ME/CFS; fatigue & fatiguability in other conditions: chronic...

I was thinking more in terms of an academic/charity/informed patient type collaboration which produces a formal service specification & commissioning guidance that we can all point to, drop in front of ministers, MPs, & NHS service commissioners and say, collectively, "these are the kind of...

Hansard transcript of the debate: [url unfurl=false]https://hansard.parliament.uk/commons/2025-11-19/debates/2CF5B027-60AF-4031-B6B1-A2909CF6A745/MyalgicEncephalomyelitis[/url]