Clark Ellis

I write fiction and about ME/CFS. Advocate, autodidact, christian. Interested in everything.

[Clark Ellis @IamClarkEllis]

@cajundiscordian Humans can tell if someone really went to the game or if they didn’t go but tried to convince you otherwise having themselves heard other accounts from those who did go. That’s all this is.

[Clark Ellis @IamClarkEllis]

@cajundiscordian Humans are exposed to stuff more directly. It’s like telling someone about a game of football, the facts of what happened and how it felt experiencing it first hand, but unless you actually did experience it firsthand your account of it wont be individually authentic.

[Janet Dafoe @JanetDafoe]

Here’s a link to the Times of London article with no paywall. https://t.co/QS5dLSG5dG

[Darren Brown OBE @darrenabrown]

Was a pleasure to present this evening on #LongCOVID at #Physio21 but I need to make it explicitly clear:
- Long COVID is not deconditioning
- We need to differentiate phenotypes and not confuse post-intensive care syndrome (PICS) with Long COVID (side note: ppl can have both)

[Dr Keith Geraghty @keithgeraghty]

Researchers who developed a version of CBT for ME/CFS (detailed in my CBT model paper), claimed patients werent suffering any physical disease, were perfectionists, with past trauma, who overly focus on the body and sick-role seek. All not mentioned now https://t.co/ZTXVscEgII

[Mark Vink, MD @Huisarts_Vink]

@arisonsned @drphilhammond @NICEComms Nice find

Dear colleague, according to this ExFACTR 2021 protocol, the RUH Bath NHSe specialist paediatric CFS/ME service for which you work, are still using 12 months or 12 sessions of CBT and GET even though u just stated they don't.

How can that be?

@davidtuller1 #MEcfs

[Steph @pheonix_flying]

@drphilhammond I saw you at the bath clinic, you were the best M.E doctor I ever saw. But under the same service I was made to do GET that landed me in hospital close to a heart attack for a month. I didn’t see you again so you wouldn’t have known. Sadly many people were harmed.

[Rachel Ephgrave @RachelEphgrave]

@drphilhammond You diagnosed my daughter when her MECFS was mild. She deteriorated under the clinic's care and became severe. You never saw her again yourself so you would not know. I am happy to chat privately and explain further so her experience can benefit others. Patients must be heard.

[davidtuller @davidtuller1]

Here's @b_m_hughes take on the bogus complaints that so-called "medical leaders" have made about the new, evidence-based ME/CFS guideline, just liberated by NICE after a two-month hijacking nightmare. https://t.co/2e7Dq3nQgd

[Emma Reinhold @DrEReinhold]

@RcgpFaculties @MartinRCGP @AoMRC @HelenStokesLam @RCSnews
#notinmyname
This statement supposedly from RCs does not represent my views as a Clinical Advisor to the @rcgp. I find it utterly inappropriate for it to have been released after the conclusion of the @NICEComms process.

[Dr Kevin Lee @dr_kevinlee]

I’ve never seen statements from doctors colleges so unsympathetic, lack of recognition of patient advocacy groups, paying so little respect to evidence based findings from non-doctor stakeholders. Get in the bin with this #mecfs statement @rcgp @RCPEdin @RCPhysicians

[Dom @domsalisbury]

@drphilhammond @NICEComms That isn't a pre-guideline survey, Phil. It was done in August 2021, in response to the 'pause'! Scrambling...

If you want a pre-guideline report, you'd have to go back to 2018. The 2018 BACME service survery shows 84% of services offering GET:

[Clark Ellis @IamClarkEllis]

New Treatment Guideline, Same Old Denialism https://t.co/tW4BNfSE1A via @b_m_hughes

[Ruth Lampard @ruth_lampard]

@amyismall @AnnaRadcliffe74 @GeorgeMonbiot The BPS core team are working hard to get #LongCovid funding for research and treatment:

now is the time to challenge that
or it will take decades and many will be harmed;

meanwhile ppl with substantive mental health issues are not getting the healthcare they rightly need.

[Clark Ellis @IamClarkEllis]

@GeorgeMonbiot superb article, and thread, thank you. These issues and their relation to long covid needs more highlighting right now - once life returns to normal for most, the unseen sufferers will quickly be forgotten, out of sight, out of mind, just like those with me/cfs.

[George Monbiot @GeorgeMonbiot]

How I became a human plague – and stumbled into one of the most astonishing scientific stories I’ve ever encountered.
My column.
Plus thread.
https://t.co/o8Gjt6quX5

[Tom Kindlon @TomKindlon]

"Do not offer people with ME/#CFS any therapy based on physical activity or exercise as a treatment or cure for #MECFS [or] any programme based on fixed incremental increases in physical activity or exercise, for example graded exercise therapy.” 👍

From:
https://t.co/h7tu9x67Ez

[davidtuller @davidtuller1]

The NICE draft guidance for ME/CFS rejects graded exercise therapy, the Lightning Process, and CBT when presented as a cure or a treatment for the illness itself rather than as supportive care: https://t.co/Zl0m0SaVtX