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Indeed; but, most unfortunately, this has not been to our benefit. A few brief examples: 1/ From the Nerli et al paper (link) on their "transdiagnostic rehabiliation" programme: That is entirely implausible if these patients genuinely had PEM; if they "crashed", as I do, from trivial levels...

I have some concerns about this campaign. Firstly, there is a complete lack of any clarity as to who is behind it. I understand, perhaps more than most, the reasons why some pwME would not wish to publicly engage in advocacy under their real names; but, equally, if you are going to be asking...

It's honestly really refreshing to read something NHS-produced/backed about severe ME that recommends that we be given the supportive care that we actually need, and is written in a way that is genuinely intended to help patients rather than filled with the customary patient-blaming. Compared...

A few more notes on the module: - I wish we could move past the whole "complex, multi-system, chronic disease" framing, which is how the module introduces ME/CFS. - "Possible disease mechanisms include: impaired immunoglobulins; persistent viral reservoirs; autonomic nervous system...

I spotted that this had been released. I've been particularly unwell recently so haven't been able to review it thoroughly; however, based on a quick skim, there is a lot of good in this. Briefly - it includes: - acknowledgement that there are no evidence-based treatments; - a realistic story...

Probably not worth its own thread, but may be of some additional interest - there was a recent study reported in JACC (a well-known cardiology journal) of Long COVID patients which found only a small minority met POTS criteria on autonomic function testing: Link

Abstract: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a chronic and debilitating disease with unknown cause. Involvement of infection and immune dysregulation has been suggested, including changes in immune cell subsets and abnormal functions of natural killer (NK) cells. The...

Abstract: Background Myalgic encephalomyelitis (ME) is a chronic, multisystem illness characterized by post-exertional malaise (PEM) and cognitive dysfunction, yet the molecular mechanisms driving these hallmark symptoms remain unclear. This study investigated haptoglobin (Hp) as a potential...

Abstract: Background Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex and debilitating condition with a large proportion of patients that experience orthostatic intolerance (OI). This systematic review aimed to assess whether cerebral blood flow (CBF) is reduced in ME/CFS...

Re pain in ME/CFS: muscle & joint pain was highly prevalent in the 1999 Jason community sample (link), and in the 2011 Nacul primary-care sample (link) - Nacul et al reported "joint (76% to 91%) and muscle pain (74% to 95%)". There was also a 2010 paper based on interviews with 50 pwME...

It says the data is available on GEO but the accession (link) is currently marked as private. The analysis code is on GitHub.

I'm glad I saved the article, as I wondered for a moment if I were going mad. It is from today (it is on the front page of Pulse, under "Latest"); the date has been changed from 2025 to 2024 for some reason. It references the DecodeME results and the delivery plan, so is not from 2024, and, a...

GPs owe ME/CFS patients an apology (PulseToday, 11 August 2025) The mechanistic stuff is wrong but the attitude is quite a refreshing change.

See post #27 for peer-reviewed version. Abstract: Autoimmunity is a key clinical feature in both post-infectious Myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) and Post-Acute Sequelae of COVID (PASC). Passive transfer of immunoglobulins from patients' sera into mice induces some...

Something I have noticed about the media coverage - not really from the Edinburgh team directly, but in quotes & interview comments from advocates & patient & charity representatives - even in coverage from otherwise sympathetic journalists - is that these & other findings continue to be...

Indeed. It's a follow-up to a Jason et al paper from 2007: https://www.tandfonline.com/doi/full/10.1080/07399330600803766

ABSTRACT Background: Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling condition associated with substantial functional impairment. Although historically considered non-fatal, recent studies have suggested a link between ME/CFS and premature mortality. Objective: To...

The Independent: https://www.independent.co.uk/life-style/health-and-families/health-news/myalgic-encephalomyelitis-chronic-fatigue-syndrome-genetics-dna-study-b2803176.html The Times...

New Scientist: https://www.newscientist.com/article/2491509-key-genetic-differences-found-in-people-with-chronic-fatigue-syndrome/ The Telegraph: https://www.telegraph.co.uk/news/2025/08/06/me-is-a-real-illness-genetic-study-shows/