Psychiatrist | Life on hold since Oct. '21 due to long Covid | LC foundation NL | Carpe diem sed non inpensa crastina | Tweets are my own | No medical advice
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Joined August 2022
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My openly accessible reply in @Brain1878 today.
It tries to address the pitfalls that have led to iatrogenic harm in the treatment of Long Covid, ME and PAIS-patients,
physically and psychologically.
1-5
academic.oup.com/brain/advan…
Het is goed dat de medische belangen langzaam bijeen geforceerd worden.
'Nederland' en het medisch veld weten immers allang wat 'veelbelovend' is,
en waar de prioriteit zou moeten liggen.
Dat durft men echter nog steeds niet volmondig, en met één stem, uit te spreken.
1-3
🟦 TERUG NAAR DE HUISARTS 🟥 MET LEGE HANDEN
🟧 Huisartsen, specialisten en onderzoekers: de minister brengt de longcovidexpertisecentra terug naar 1 miljoen per jaar. Voor acht centra samen. De zorg moet terug naar de huisarts. Richtlijnen zijn er nauwelijks.
🗣️ ‘Als systeem zitten we klem.’
🟩 Duitsland trekt een half miljard uit voor onderzoek. Nederland laat eerst verkennen wat veelbelovend is.
🔲 Vandaag wordt in Den Haag gedemonstreerd. Door wie kan, voor wie niet kan. Morgen het rondetafelgesprek in de Kamer.
🟦 🟥 Hoe lang nog?
NOS vandaag | @Zurhake
nos.nl/artikel/2636540-artse…
Zeker die lange termijn is lastig benadrukken.
Uit de terechte angst dat bezuiniging zal volgen als resultaten lang op zich zullen laten wachten.
Maar ook omdat je dan zult moeten bespreken waarom het decennia zo gegaan is.
2-3
Tom Molmans, MD retweeted
Goedemorgen. Overheidsbeleid voor Long Covid en PAIS is ernstig nalatig.
Artsen geven aan dat "laat maar aan de reguliere zorg" een gapend zorggat oplevert.
Expertisecentra zitten klem en kunnen hun taak niet doen met het symbolische bedrag op de VWS-begroting. En Amsterdam UMC moet nu patiënten afbellen door die in den Haag gecreëerde instabiliteit.
Structurele onderzoeksfinanciering ontbreekt zo jaagt de overheid vakmensen weg.
En de minister reageert lamlendig zoals we op dit dossier gewend zijn. Ze:
-belicht uit de brandbrief van huisartsen alleen dat deel wat geen actie van haar vraagt, en ook nog eens de zorg bemoeilijkt
-verwijst alleen naar lopend onderzoek en niks in de toekomst
-en verwijst alle verantwoordelijkheid voor het ontbreken van zorg en de bureaucratische patstelling naar de zorgsector
Deze apathische houding van opeenvolgende ministers is precies het probleem!
Dank voor de heldere uiteenzetting van deze ramp @Zurhake
It can't be 'a plan'
if it doesn't proportionally recognise the history, scale, needs, priorities and opportunities of a problem.
Gvts surely won't if they're not told by 'experts', cq the vested scientific/medical lobbies.
So keep on the pressure!
With thnx to @BethDobbin.
A pretty generic, non-commital response to @BethDobbin letter to @andyburnham
A key problem of the Delivery Plan (which doesn't deliver) is that it's used as policy theatre to ensure change doesn't happen on the scale that is needed. 1/4
ALT Screenshot of a statement from a Department of Health and Social Care spokesperson responding to concerns about ME. The spokesperson acknowledges the devastating impact of ME and says the government is committed to accelerating research and treatment. The statement highlights genetic research, a clinical trial investigating potential treatments, and the government’s ME/CFS Delivery Plan, which it says it remains committed to implementing.
Tom Molmans, MD retweeted
Olympian @BethDobbin has written to Andy Burnham to ask for increased funding for ME research.
We are working with her to amplify her message, and you can help (if capacity allows).
Write to your MP to back her call - and to make things easier, we have a template for you.👇
ALT Images of Beth Dobbin and Andy Burnham with a graphic of an email going from Beth to Andy. Under Beth is her quote "I believe you need to fund research into this spiralling illness and help us all get our lives back." and also there is a small chart showing UK Govt Reearch funding 2019-2024. ME - £6.6m, Parkinsons, £79.1m and Dementia £496.4m. The text says "Beth Dobbin has written to Andy Burnham asking for increasing funding for ME research. You can help! Support Beth's call for ME funding by writing to your MP. Template letter available!"
Tom Molmans, MD retweeted
We’ve been blown away by the response to my interview with @BBCSport & @KatieFalkingham , thank you so much to everyone who has taken the time to read and engage with it ❤️ millions of views across multiple platforms really is immense.
We have since written to @andyburnham , calling on the @UKLabour government to fund research into this horrific illness. I know there’s so much more we could say, but with limited capacity, we’ve tried to focus on the lack of funding, resources in the NHS and how much it’s actually costing the government.
As you can see on the slides, it has been drastically underfunded compared to other illnesses and it is currently costing the UK Government far more than it would cost to fund research. ME is most often a post-viral illness. Therefore, since the start of the Covid pandemic, we’ve seen cases increase drastically and they will continue to increase. We need funding into research urgently. With estimates of people with ME being around 1.35 million, this is a lot of lives destroyed.
I’ve had thousands of messages on multiple platforms since sharing my story so please bear with me ❤️
Thanks to @ThereForME_UK and @wecrunchme for the stats.
Indeed.
The danger are the appropriators who,
not uncoincidentally, too
often bear a striking resemblance to (former) denialists.
The repacking into everything functional and the absurd prevalence inflation of these disorders
signify a trend that won't stop at PAIS or ME/CFS.
A well-known psychosomatic and functional proponent of Long Covid in France,
has been nominated for the Maddox Prize 2026 from @senseaboutsci,
an institution claiming to 'stand up for science and evidence',
and which is supported by @royalsociety.
1-6
senseaboutscience.org/activi…
Too often 'science' celebrates in a self-congratulatory way,
instead of discerning between where 'the resistance' really comes from:
from within or without?
In suppressed science,
broad institutional, corporate and governmental support is more often a 🚩 than not.
5-6
Similarly, the Dutch anti-quackery association in 2018
awarded a Dutch prof of internal medicine, and defendant of the PACE-trial,
a prize for his important work AGAINST the 'quackery illness CFS'.
Let's hope it doesn't come this far this time.
6-6
kwakzalverij.nl/nieuws/gebro…
This does not really show any 'interplay', as the methods were cross-sectional.
Plus, with a lot of old-school PROMs used, the 'symptom clusters' are always similar ('fatigue vs neurocognitive),
and relatively worthless.
Let's quit giving symptom-reductionism a podium.
1-5
Post-acute sequelae of COVID-19 (PASC) are associated with distinct clinical phenotypes two years after SARS-CoV-2 infection: A data-driven approach
🚨Two years after infection, this Dutch study largely confirms what multiple earlier cohorts and data-driven analyses have already shown:
➡️Persistent PASC is NOT a uniform residual of the acute illness but a heterogeneous syndrome dominated by a tightly linked cluster of PEM, ME/CFS-like symptoms, sleep disruption, and coping factors, which further separates into distinct physical-impairment versus cognitive-deficit phenotypes among those with chronic fatigue, reinforcing the existing picture and again, pointing to the need for more differentiated rather than one-size-fits-all approaches.
#AvoidSars2 #AvoidReinfections
journals.plos.org/plosone/ar…
More so, they jump on the CBT and 'illness behaviour' train.
The blatant references to
an ideological BPS-paper not finding a correlation between 'symptoms' and 'symptom burden' (duh),
and to the Zeraatkar review suggesting CBT treatment efficacy,
are highly problematic.
4-5
