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At first glance this looks like a very useful piece of work, & excellent that others are becoming involved in ME research at Edinburgh. I was also struck by an ME paper being produced in LaTeX! I haven't been able to read through it thoroughly yet but skimming through I was very curious about...

But at what cost? New or additional memories of coercive or even abusive treatment, more than likely the imposition of unevidenced theories as though they were factual; perhaps a refusal to accommodate sensory or other problems due to the stimulus-challenge ideology, perhaps attempts to replace...

I think there may have been a bit of a layperson's misunderstanding here with "massive infection of the spine". The neuropathologist's actual report on the Sophia and ME site stated that there was a dorsal root ganglionitis. I don't want to speculate too much but reactivation of varicella zoster...

Just to point out that there was an earlier paper from 2023 that attempted to quantify the economic effects of ME/CFS in Australia that may be useful for comparison. That paper used a small patient cohort (n=175; 48 consented to records access; 23 carers completed), and self-reported diary...

I'm curious about the common portrayal of work status/hours and walking tests as "objective". They are quantifiable (e.g. speed and distance walked using traditional actimetry or accelerometer-based wearables) in a way that questionnaires are not but no-one should mistake them for truly...

Find yourself needing to rest a lot? You're deconditioned, and that's a perpetuating factor. You do what you can when you can and rest when you must? You're a boom-and-buster, which is a dysfunctional adaptation maintaining your symptoms. Also, you're all hard-charging type A perfectionistic...

Thanks so much for continuing to work on this - that's a brilliant & very useful addendum indeed, in particular the new full section ("Potential Sources of Confusion") discussing the confusions of the RCP & BSG documents & the use of the concept of FGIDs. A few other random thoughts: Yes...

From the Instagram account of Natasha Devon, the LBC presenter - "massive scandal"; "every caller was powerful and articulate"; references George Monbiot's excellent coverage in the Guardian. It seems the callers made quite an impression on her.

My understanding was that in the UK physiotherapists (and certain other health professionals) working in the NHS will be registered with the Health and Care Professions Council (HCPC). There's a public register of names for each profession on their website, but it only seems to give name &...

I don't wish to bore anyone by delving too deep into the history, but this is an important point. The concept of activity pacing also appears in a number of places in the historic psychological and behaviouralist chronic pain literature well before its adoption by pwME, and it means something...

The Guardian: "Fifth of patients at two north of England surgeries have long Covid, study finds": https://www.theguardian.com/society/article/2024/aug/23/fifth-patients-two-north-england-surgeries-long-covid-study-finds The report referenced appears to be this one, entitled Navigating the Long...

As far as I can tell from a quick search the evidence for an effect of salt on blood volume seems fairly scant. There is a 1996 paper in Heart of 31 postural syncope patients: where the authors concluded: Also, in the "24th International Symposium on the Autonomic Nervous System" (link) there...

Perhaps something worth mentioning is that the notion of a "boom and bust" cycle is not original to the CFS literature; it is clearly based on a concept from the chronic pain literature where it is more often referred to by different names such as the "overactivity-underactivity cycle" and the...

This was from April, but I only came across it today and it doesn't seem to have been posted before: a paper by two U.S. physicians who became long COVID patients, documenting their own stories and calling for better understanding and support: Top Antivir Med 2024 Apr 18;32(2):431-436 |...

https://my.theopenscholar.com/files/simmaronlab/files/1-s2.0-s1044743122000379-main_1.pdf

Abstract Objective: To estimate the number of people in Australia with long COVID by age group, and the associated medium term productivity and economic losses. Study design: Modelling study: a susceptible–exposed–infected–recovered (SEIR) model to estimate the number of people with long COVID...

I don't think this has been mentioned here before but is perhaps relevant to both this and the Problems with POTS thread: there was a small-scale retrospective review in 2008 of patients sent to a paediatric referral centre who had undergone both gastric emptying and autonomic reflex tests (n=31...

I do think there was a difference in emphasis (and, I think, a difference in understanding) between SW & MS (who emphasised the supposed psychogenic aspects more) and White (who placed greater emphasis on the supposed value of exercise). Nonetheless, even if we look at the CBT literature -...

A few more things I noticed: *sigh* This really doesn't follow. There are plenty of disorders of the nervous system, immune system and endocrine system that have very visible symptoms and where sufferers do not look visibly well: I could list dozens of examples. Might be useful to bring this...

I'd be interested in hearing how the author thinks that this all works, physiologically speaking. In detail. Also is this stress-response theory AfME's official position too? What treatment? Can be longer. Should be made clear, at the least, that not all pwME experience this. Unevidenced...