"Yet despite decades of attempts by scholars and professionals to let the five stages [of grief] die, the model remains dominant"
Dx Revision Watch
@dxrevisionwatch
Suzy Chapman. Formerly monitoring/reporting on developments with ICD-11, ICD-10-CM, DSM-5, SNOMED CT & other classification and terminology systems
Dx Revision Watch’s Tweets
Systemic bias - #Longcovid advocacy needs to look to the #MyalgicEncephalomyelitis history. Talk to long time advocates.
Please don't underestimate the systemic bias that is now affecting LC patients.
Learn history at ME-International.org
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Real quotes on the record from Royal Melbourne “Post-Covid” Clinic:
“we’ve learnt not to over-investigate”
“THERE IS NO PATHOPHYSIOLOGY”
“patients are just paralysed with hypervigilance”
“roadblocks to getting better… (are) anxiety & frustration”
#AusPol #LongCovid #MECFS
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This is the incompetence that has made progress in chronic illness impossible. Learning from experience is not guaranteed, when experts are trained wrong they have no way to see through that.
The lack of progress in #LongCovid is no accident, it's systemic failure.
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Real quotes on the record from Royal Melbourne “Post-Covid” Clinic:
“we’ve learnt not to over-investigate”
“THERE IS NO PATHOPHYSIOLOGY”
“patients are just paralysed with hypervigilance”
“roadblocks to getting better… (are) anxiety & frustration”
#AusPol #LongCovid #MECFS
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I've just listened to the news from this morning - no mention that this was a pharma funded project. why not?
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There is an urban myth that patients with #MECFS benefit from secondary gains. Did you ever consider the negative side: isolation, lost social contacts, ruined career, ruined economy, severe symptoms around the clock—and deprecatory remarks about secondary gains! #MEAwarenessHour
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From Friday, everyone in England aged 50 or over will be able to book their Covid booster and flu jab.
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Is #LongCovid a "real thing," #MedTwitter? I'll let you decide.
Here's my own case: I'm a cardiologist(40s) with no prior medical Hx & have run tons of marathons & several 1/2 Ironman Tris.
In March '20, I fell ill and became quickly hypoxic and confused. It was COVID-19. 1/
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Cardiovascular outcomes in adults with hypertension with evening versus morning dosing of usual antihypertensives in the UK (TIME study): a prospective, randomised, open-label, blinded-endpoint clinical trial
Full paper:
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Just a reminder that we used to think peptic ulcers were ‘all in the mind’
We wasted 40 years by calling it stress related until it was shown to be caused by H.pylori (a bacterium)
#longCOVID is #notallinthemind it is caused by #SARSCoV2 (a virus)
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This - " I was just with some medical students last week, and I talked to them about a patient of mine who had long Lyme. And they said we were taught that that’s not real — and these are current med students."
Med ed is failing miserably. We patients are being harmed.
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Replying to
1/ Many people who develop post viral conditions naturally improve to recovery in 6 months, you are not exceptional in that. Then those people consider themselves fortunate to have recovered and get on with their lives. That's where you differ from the majority.
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1/ Paul Garner promotes the supposed patient org Recovery Norway (RN) in Guardian article 10/6/2021. What he didn't say is RN was set up by commercial NLP coaching Trainers who hard sell Lightning Process (a costly 3 day NLP positivity obedience training) to desperate sick people
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“When Addenbrooke’s Hospital in Cambridge upgraded its face masks for staff working on COVID-19 wards to filtering face piece 3 (FFP3) respirators, it saw a dramatic fall – up to 100% – in hospital-acquired SARS-CoV-2 infections among these staff”
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#LOINC and #snomedct will now work better together, thanks to the efforts of and 👏 Biggest announcement at #SCTExpo22 this year... 😱 Want to know the what, how and why of the LOINC Extension in SNOMED CT? Checkout details at:
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There's a certain critically important relationship here to...
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Very concerned about how serious cardiovascular health issues (myocarditis, strokes, etc) and blood clots and pulmonary embolisms are happening to so many people with #COVID and #LongCOVID and yet we are not discussing this enough. Lots unaware of risk!
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My brain is shrinking – and so is my world.
Vivid piece on realising you're living with frontotemporal lobar degeneration.
theguardian.com/society/2022/o via
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The September 2022 Canadian Edition is now available. Visit our standards centre on InfoCentral to view the latest metrics and subset updates. bit.ly/3kIk0F8
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Here's a piece I've co-written with
about how GET and CBT do not have a positive impact on employment outcomes. It's submitted to a journal but I've also posted it as a pre-print. Here's more: virology.ws/2022/09/30/tri
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Request for experiences from #pwME.
Has your access to non-ME related healthcare ever been refused/ignored because of your ME? Can you tell me what happened?
#MyalgicE #MECFS #ChronicIllness
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Belle and Sebastian singer: Living with ME makes me feel like a ‘non-person’
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Exeter mum's heartbreak as daughter, 27, loses severe ME battle devonlive.com/news/devon-new
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Chronic fatigue syndrome patient told: ‘You’re making it up’
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Just now, from during the #ICD11 Webinar.
📢"If you are not identified, you aren’t counted; if you are not counted, you don’t count. The joint vision of WHO and RDI is to ensure that no one is left behind.”
🔗 lnkd.in/geihu3cB
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Replying to @NateHorek
It is listed here exgdcoroner.org.uk/calendar-of-he It is my first time at an inquest. All I can tell you is this is the first of at least two public hearings. The Coroner's Officers should be able to tell you more. They are incredibly busy and, as a public service, likely understaffed.
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A thread for the eight #MECFS & related research papers from w/c 19th Sept 2022.
Links will be to our forum discussion threads, where abstracts, links to paper, analysis and discussion can be found. Please note that inclusion in this list does not equal recommendation.
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🚨I wrote about ME/CFS (chronic fatigue syndrome). The US has millions of people with it & maybe two dozen docs who specialize in it.
This medical crisis needs urgent attention, esp. now COVID has hugely increased the number of long-haulers. 1/
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You know your study is very flawed when you get criticism letters from , Roald Lambrechts and all other co-authors, including myself. Collectively, we told the authors & that #POTS is not psychogenic!
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The authors from the study with a false claim that #POTS is psychogenic respond to all of the letters with more false claims. I'll try to outline them here 🧵:
1. They say, "the underlying cause of POTS remains elusive, and regrettably, there is no effective 1/n
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You know your study is very flawed when you get criticism letters from @TeamSRRaj @DavidSGoldstei2 @davidtuller1, Roald Lambrechts and all other co-authors, including myself. Collectively, we told the authors & @Brain1878 that #POTS is not psychogenic!
academic.oup.com/brain/advance-
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The journal Brain has now published our letter on the flawed "POTS is psychogenic" article from NYU. Unfortunately, it's behind a paywall, but I've already posted the pre-print version.
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The new guidelines explicitly *prohibit exercise* in #LongCovid patients with post-exertional malaise/post-exertional symptom exacerbation.
#MedTwitter and others, please internalize this!
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Finally! New @WHO guideline specifies: NO EXERCISE THERAPY for #PostCovid patients if they suffer from POST-EXERTIONAL SYMPTOM EXACERBATION.
Hope this will protect more patients from becoming bedbound by wrongly applied #rehab measures like GET
Please RT
For more info see 

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"It's going to protect YOU..."
"It will reduce YOUR risk of a heart attack, cancer, diabetes etc".
We see this all the time when it comes to medical treatments and health interventions.
I'm going to show why 99.9% of the time this type of phrasing/framing ("YOU/R") is wrong🧵
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‘Because post-acute conditions have been neglected for years, medical field is lagging far behind when comes to finding effective treatments’
YES
But claims of sole CNS origin & dismissal other causes a concern
#LongCovid #ME #MECFS
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[death, covid]
A thread on musicians and associates who died or suffered from severe covid—#LongCovid 2020—2022. I came across many stories by chance in an unrelated search. Artists are "rare" people. High numbers there means covid's havoc isn't rare
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“Risk of blood clots remains for almost a year after COVID-19 infection, study suggests” - The University of Bristol
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"after about three months it was clear that this exercise focused treatment regimen was not working. The team realised that long covid was more like ME/CFS, says Azola, and began drawing on ideas from that area instead."
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Our latest paper: More evidence that LongCOVID symptoms are due to widespread endothelial damage and a failed fibrinolytic system. We again found numerous entrapped inflammatory molecules; and this time also antibodies in microclots #teamclots
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NEXT WEEK! 🔊Join the Webinar we co-organise with the 🔗lnkd.in/geihu3cB (No registration needed)
What is the #ICD❓Why is it fundamental for Persons Living With a #raredisease?
Learn more before the 27th here💡bit.ly/3UpoK5h and stay tuned!
GIF
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How “long covid” is shedding light on postviral syndromes BMJ 2022; 378 doi:
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