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Lucibee 🌻 Profile picture
@_Lucibee
Mar 5, 2021 • 23 tweets • 6 min read • Read on X
Sir Mansel Aylward talks about his experience of #LongCovid
bbc.co.uk/news/uk-wales-…
I hope his reflections go slightly deeper than just the UK's unpreparedness... meassociation.org.uk/2011/11/privat…
Further reading from @TommyShakes | Blaming the victim, all over again: Waddell and Aylward's biopsychosocial (BPS) model of disability
journals.sagepub.com/doi/abs/10.117…
More further reading: Getting rich on disability denial @RedPeppermag redpepper.org.uk/getting-rich-o…
Psychological tyranny prescribed by the DWP: preventable harm is government policy | B J Gen Pract 2018
ncbi.nlm.nih.gov/pmc/articles/P…
Who is Prof Sir Mansel Aylward? lshubwales.com/board/professo…
Problems in the assessment of psychosomatic conditions in Social Security benefits and related commercial schemes | J Psychosom Res 1995 pubmed.ncbi.nlm.nih.gov/8568732/
"Some diagnoses are purely subjective by definition..." Image
Models of sickness and disability | Waddell and Aylward 2010 webility.md/praxis/downloa…
Who was Gordon Waddell journals.lww.com/pain/Citation/…
Part of the problem is the assumption that such a "medical model" actually exists. Image
When actually this seems to be a description of one of a number of different scenarios, where the ideal "model" is at the top. Image
Another big assumption about the "medical model" is that it makes assumptions. Image
From my own experience, application of BPS in healthcare, rather than addressing complex issues in a multifactorial way, essentially reduces it to "guided self-help", and further exacerbates the problem.
Dog whistle medicine and disability denial - Unum, Aylward and the "Wessely School"
Aylward also contributed a section to the Trends in Health and Disability 2002 report (Unum) - it's quite dry though. The section by a certain Dr Sharpe is more interesting... web.archive.org/web/2003012615…
"Both State and private insurers pay people to remain ill."
Nice dig at patient support groups and charities there too. 😠 Image
No mate, biggest obstacle to recovery is lack of effective treatments. Image
Sharpe mentions the 2002 CMO report, which I linked to here:
"Neither classification [DSM-IV vs ICD-10] is ideal."
aka "We're not saying that it's psychological... (but it's psychological.)" Image
"The trial was co-designed with a patient group."
Image
Another clipping to append to this thread...
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More from @_Lucibee

Lucibee 🌻 Profile picture
Sep 18
Tucked away in the resources for the new NHS module on severe ME was this checklist.

I thought it looked useful, so I've reformatted it as slides.

Much of the information is a repeat of the 25% ME Group/Action for ME/BRAME/MEA hospital support document.

🧵1/9 Managing severe ME/CFS patients in hospital settings - Checklist for staff. This checklist is designed to help hospital staff, nurses, and physicians provide safe and appropriate care for patients with severe ME/CFS who are hospitalised for other conditions. Pre-admission and initial assessment • Confirm diagnosis of severe ME/CFS and review patient’s advance care plan (if available). • Ensure patient has a quiet, low-stimulus room (ideally a single occupancy room with dim lighting and noise control). • Minimise unnecessary movement (avoid frequent repositioning, tests, and forced m...
🧵2/9 Sensory adaptations and environmental considerations • Room modifications: ◦ provide a darkened room with blackout curtains or dimmable lighting ◦ reduce noise (turn off unnecessary alarms, limit staff talking) ◦ limit hospital staff entry to only essential visits ◦ ask hospital staff to avoid perfumes or strongly scented soaps • Communication adjustments: ◦ speak softly or use written communication if the patient has sound sensitivity ◦ reduce length of interactions to prevent cognitive exhaustion • Limit bedside procedures: ◦ allow bedside phlebotomy, portable i...
🧵3/9 Post-exertional malaise (PEM) prevention • Recognize that even minor exertion (e.g., sitting up, eating, conversations) can trigger PEM. • Do not force activity (strict avoidance of Graded Exercise Therapy or rehabilitation-based activity). • Plan tests and interventions carefully: ◦ space out procedures over several days ◦ allow the patient to rest extensively between interventions • Allow supine care as much as possible to prevent autonomic crashes.
Read 10 tweets
Lucibee 🌻 Profile picture
Aug 8
Any prior link with depression is likely to be highly complex.

Wessely knows this. He's studied it.

But it's worth remembering that this link is also found for many other disorders, including Parkinson's and MS, and it's a known risk for cardiovascular diseases.
But the problem with many of these studies is that the definitions of ME/CFS are not robust.

Wessely's study only asked whether participants had ever been diagnosed with either CFS or ME. No checks that even existing (loose) criteria were met.

pmc.ncbi.nlm.nih.gov/articles/PMC31…
As has been noted forever and a day, it has always been difficult for doctors to distinguish between "chronic fatigue" and depression.

It's therefore not surprising that imprecise criteria will sweep up those who otherwise would not be included. pubmed.ncbi.nlm.nih.gov/1890495/Quote (black text on light blue background) reads: "Depression, with or without associated anxiety disorder or somatization, is by far the most common cause of fatigue among all patients who seek medical care for fatigue." - Anthony Komaroff, 1992.
Read 15 tweets
Lucibee 🌻 Profile picture
Jul 24
The MRC Independent Advisory Group was set up in 2002 to produce a report on "CFS/ME" in 2003, as a result of the 'Report to a CMO' of 2002.

The group members are listed here:

hansard.parliament.uk/commons/2002-0…
The MRC report is mentioned here:

But with no link. Does anyone know what happened to it?

It seems the result was PACE and FINE.meresearch.org.uk/research/other…
This is one of the problems with "independent" groups.
If you genuinely have no knowledge of a particular subject area, it doesn't make you more objective, it just makes you much more susceptible to the nonsense that some high-profile charlatans can throw at you. 🙄
Read 6 tweets
Lucibee 🌻 Profile picture
Jul 23
Dr Alexis Gilbert has outlined what the Final Delivery Plan for ME/CFS *should* have looked like (on IG): instagram.com/p/DMa8sjPMzd2/Image
A 🧵of @alexis___me 's IG slides [with alt text] -

What the ME FDP *should* have looked like. Background. The UK Government published their final delivery plan for people living with ME today. It was a step in the right direction strategically but it was lacking many specific actions that we need right now. I had inspiration from sources like @crunchME reports and @thereforME and Long Covid advocacy groups as well as many other places and people like the brilliant @elle.is.beyond.tired
@alexis___me What the ME FDP *should* have looked like:
Living with ME What the ME Final Delivery Plan *should* have looked like: Living with ME. National network of ME Centres of Excellence delivering: 1. Home-based outreach for severe/very severe patients. 2. Rapid-access inpatient beds with low-stimulus environments for emergency care. 3. One stop online clinics (eg, immunology, cardiology, neurology, sleep etc) 24/7 ME clinical advice line for health professionals staffed by clinicians trained in ME, long covid, IACCs and comorbidities who are ‘PEM-aware’ and able to advise GPs, hospital specialists, emergency departments, paramedics and social care staff...
Read 11 tweets
Lucibee 🌻 Profile picture
May 25
The (International) Cambridge Symposium on ME/CFS/PVFS (April 1990) occurred a few weeks after Melvin Ramsay died.
The proceedings from the conference were eventually published in this book, 2 years later (1992):
me-pedia.org/wiki/The_Clini… x.com/RFH1955/status…
Dr Leslie Simpson (from Univ of Otago, NZ) mentioned the symposium in a letter to the JRSocMed in 1991...

His research on Nondiscocytic Erythrocytes in the Pathogenesis of ME/CFS is included in the book at chapter 65.pmc.ncbi.nlm.nih.gov/articles/PMC12…
Ramsay and Dowsett's study was published in the Postgrad Medical Journal in 1990, but this was the last time that Dowsett managed to get any of her research published in a UK journal. pmc.ncbi.nlm.nih.gov/articles/PMC24…
Read 14 tweets
Lucibee 🌻 Profile picture
Dec 18, 2024
Yesterday, the @MEAssociation published this statement on its website, alleging that their trustees had been accused of illegal payments and dishonesty. meassociation.org.uk/2024/12/mea-st…
They claimed that the current 2014 version of their Articles of Association, as registered with Companies House in 2014, does not forbid payments to trustees for services provided.
They helpfully posted a link to that document. Image
And if you click on the link and download those "2014 Articles of Association", this is what you see at the relevant section: Image
Read 16 tweets

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