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Something I have thought for some time would be useful is if a supportive ME organisation brought together a group of people, including someone who understands the weeds of the NHS service commissioning processes, to thrash out what a decent ME/CFS service would look like in practice, & produce...

The two previous versions of this document, found on archive.org: 2020 version 2022 version

It may well be a waste of time, but they're going to use the outcomes from this as "evidence" for the purposes of service commissioning. They've picked the players; does anyone doubt that the outcome will be a psychobehavioural/rehabiliationist one? Is there anyone among the charities and...

Just noting that there is a meeting report in Nature Immunology about a recent NIAID/NIH workshop on "Pathways to Treatments" for LC: Link Not able to review it in depth at the moment, but, according to the report: - the outcome of a safety & tolerability study for LDN was reported, "with no...

Moved from the News from BACME thread. It was brought to my attention that BACME have apparently produced a new version of their "guide to therapy" (used by some of the NHS clinics) recently: BACME Guide to Therapy - redraft 2025 I haven't been able to read through but running Adobe...

Haven't been following in detail but the claim by Cort that this has not been done before is wrong - in the 1990s there was more than one study of monoamine metabolites in CSF. For example Demitrack et al (link) quantified 5-HIAA, HVA & MHPG (metabolites of serotonin, dopamine and noradrenaline)...

Via MEA: Update: UK ME/CFS Biobank Steering Group (November 2025)

Surprised to learn that AfME & ForwardME have signed up to this. It's a terrible idea. We are so very badly served by the organisations that claim to represent us.

Prospective case-control study assessing GDF15 in FM: Serum GDF15 as a supportive biomarker in female fibromyalgia patients based on a prospective case-control study

Haven't been able to read through, but looking at my search alerts for the last week, I think this MedRxiv preprint is related: Development and content validity of the Clinal Needs Assessment for Myalgic Encephalomyelitis (CNAME)

This appeared in my search alerts today - have not been able to read through but judging by the abstract may be of potential interest - Attentional failures after sleep deprivation are locked to joint neurovascular, pupil and cerebrospinal fluid flow dynamics (Nature Neuroscience, October...

An update on these guidelines, via AfME:

A couple of snippets:

Brian Hughes has a new book out called "Psychology's Quiet Conservatism" (Amazon link; for those with academic access, the chapters are also downloadable here). The Monbiot/LC/Sharpe story is discussed in ch14 ("Hierarchies and Hysteria"), and ME/CFS also makes an appearance in ch21 ("Pathology...

The MEAction UK survey and its appendices can still be found via archive.org - the feedback Appendix VI is here: Appendix 6: Your experience of ME services - report by MEAction UK

I saw this some weeks ago. I haven't been able to read through but glanced quickly at the PDF of the management chapter (due to Grach, Seltzer et al) - it was very EDS-POTS-MCAS-CCI centric; unfortunately, I don't think it can be relied upon for reasonable advice about management.

Unsure if this has been posted, and haven't been able to read through, but this came up in my search alerts this last week: A brief, comprehensive measure of post-exertional malaise (Jason & Chee, Exploration of Neuroprotective Therapy, October 2025)

Davenport et al have a published commentary in Nature Comms' Matters Arising today: Altered effort and deconditioning are not valid explanations of myalgic encephalomyelitis/chronic fatigue syndrome [ | PDF link ] Walitt et al have responded: Link | PDF

Haven't been able to look into it in detail but in my search alerts yesterday there was a job ad in BMJ that sheds some light on what HERITAGE is all about & who is involved: Link They're looking for a research fellow to: support the HERITAGE NIHR grant activities i.e. supporting all...

Abstract: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and the prolonged sequelae after COVID-19 (>3 months; Long COVID) have similar symptomology, are both associated with autonomic dysfunction, and a growing proportion of Long COVID patients are developing ME/CFS. We aimed to...