Here’s a link to the Times of London article with no paywall.
Clark Ellis
@IamClarkEllis
I write fiction and about ME/CFS. Advocate, autodidact, christian. Interested in everything.
Clark Ellis’s Tweets
This piece is listed as an Op Ed. The author is entitled to their 'opinion', but not entitled to their own facts.
It is frankly embarrassing to see such pseudoscientific conspiratorialism presented as 'science opinion' on .
#MECFS
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The argument (& headline) used in this article is simply at variance with the facts. One wonders what mindset produces such partisan claims.
And why does tag in its tweet? This is misinformation-based propaganda, not sci journalism
#MECFS
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The British guideline for CFS/ME is the result of activism, not research, writes @Livelandmark sciencenorway.no/chronic-fatigu @guardianscience #MECFS @NatalieGrover #chronicfatigue
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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)
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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 kcl.ac.uk/ioppn/about/di
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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?
#MEcfs
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Replying to
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.
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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.
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Here's 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.
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#notinmyname
This statement supposedly from RCs does not represent my views as a Clinical Advisor to the . I find it utterly inappropriate for it to have been released after the conclusion of the process.
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Some of my esteemed colleagues just need to grow up. Listen to your patients; look at the evidence impartially; you will learn what works & what doesn’t. @RCPhysicians @RCPEdin as your Fellow I say put your ego aside, it’s pathetic. Stop harming patients- enough #MECFS #LongCovid twitter.com/elisaperego78/…
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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
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We've joined @RCPEdin, @rcgp, @rcpsych, @AoMRC, @FSEM_IRL and @FOMNews in signing a joint statement in response to the guidance below.
Read it in full here: rcplondon.ac.uk/news/medical-l
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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:
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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.
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"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:
facebook.com/actionforme/ph
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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: virology.ws/2020/11/10/tri
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I became disabled in my early 20s. I lost friends, my entire life savings, jobs, any chance of a career that I worked so hard for. To imply that anyone would choose this is disgusting. These “gains” do not exist and are rooted deeply in ableism.
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If I had #LongCovid, I'm not sure I'd be happy that this doctor was on NICE guidelines committee for #PostCovidSyndrome given their views on people with unexplained symptoms
Read more of her views here
eapm.eu.com/wp-content/upl
#longhaulers #CFS #MEcfs #IBS #FMS #CRPS #Headache
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Long COVID: This article basically describes a remarkably similar experience to that I’ve had with ME/CFS. Looks the same illness. I disagree that most ppl with CFS get better though and the current “treatments” for CFS are not safe or effective.
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A colleague shared this in a #longCOVID forum I'm in. This illness has made us reflect on how we have treated patients in the past & how this will shape us into better doctors for the future.
To anyone I have ever made feel this way I am truly sorry.
Good will come from this
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Yet another weird #longcovid symptom I've seen mentioned: alcohol intolerance.
I wonder where I've encountered that one before... 🤔
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Fantastic that this news can now be made public.
Register via the website to receive updates and notification of when recruitment goes live in early 2021.
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**BREAKING NEWS** £3.2m research funding for #MECFS awarded jointly by @the_MRC @NIHRresearch for @decodeMEstudy, led by @CGATist @mrc_hgu @mecfsbiobank @LSHTM @sonyachowdhury @actionforme @s4me_info
Visit decodeME.org.uk for FAQs and to register to take part!
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Update: As the UK's official daily death toll passes 40,000, a reminder that UK excess deaths linked to Covid-19 stands at 62,065 up to late May.
A cautious estimate of the total excess deaths to date is
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The whole 5 mins of this video on chronic illness on my insta or FB page. It would mean a lot to me if you listened. It’s an important time to raise awareness for all those living with chronic illness as their personal lockdown will continue long after the global one lifts.
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Says antiviral drugs against all coronaviruses could and should have been developed after SARS. Big Pharma saw no profits & not enough govt funding. Needs new non-profits to make vaccines, antivirals ready for next pandemic
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The #SARS_CoV2 pandemic could have been prevented - my opinion, at virology blog. Please take the time to read it and be outraged. bit.ly/2xnKjxh
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Very interesting finding, expertly articulated by
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The best evidence yet that immune system problems can cause ME/CFS? mecfsresearchreview.me/2020/04/23/the
Is it any wonder why we have such a difficult time with medicine, when tweets and viewpoints like this exist?:
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Once you let your identity become your diagnosis, your goal changes.
The goal is no longer to seek treatment to get better; the goal is to ensure no treatments work so that you can keep your diagnosis and your identity.
This is why you can't help people who don't want help.
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the police have a difficult job to do, but they need to get stuff like this right more often.
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Police Officer wrongly says people can't be out in their own garden because of coronavirus. youtu.be/VaPxZTxEgaY via
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Round trip cost in fuel, ~£30. Saving on bread, £1 = £29 down. Someone wasn't using their loaf.
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Just stopped a car doing 110mph on the M1 north. The purpose of the journey from Nottingham? To buy bread in London because it was £1 cheaper. He also had his 2 young children in the car! Reported to court. #thatcouldcostsomedough #StayAtHomeSaveLives
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hi , walking through finsbury park alone just now, taking exercise, i witnessed a woman being confronted by two police officers looking distressed. a concerned citizen, i stopped briefly - over 2 meters away - to see what was happening. 1/
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Something my dad said that stuck with me: “Do you realized how many in healthcare are going to leave when this is all over? Quit their jobs and get out of healthcare forever because of the stress?” (1/5)
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Last week my Dad (95) was asked twice by his practice coordinator if he wanted to sign a DNR. He refused and told her why. Within 48 hrs a letter signed by his GP arrived informing him the GP had overruled and signed on Dad's behalf. 48 hrs later Dad is a broken man.Given up.
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Nobody could have predicted this...
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Thanks Mike for putting this here, I just wanted to retweet so hopefully more people see it. , I can't really articulate how I feel about this, I've said before I have never heard anyone with your platform talk with such understanding, compassion and knowing. Thankyou.
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Replying to @mikehinford @StenHelmfrid and @jaseygalore
Here's a shorter version.
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Spain, latest Covid-19 data, according to Health Ministry: 94,417 cases (up 9,222 in 24hrs); deaths 8,189 (up 849); 5,600 in intensive care. These are bad numbers, with a small rise (to 11%) in the daily percentage increase in new cases.
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