Mieke Beselaere

Analyzing & Advocating research & policies for Long COVID, POTS, MECFS, EDS and associated high burden, underserved illnesses that are mainly affecting women

[Mieke Beselaere @Beselaerem]

@apresj20 @PeeNee2 how to register as a patient representative ?

[Mieke Beselaere @Beselaerem]

Al 7 jaar kom ik op voor POTS, een verstoorde bloedcirculatie met ernstige multisystemische gevolgen. Meestal vanuit een liggende positie. Omdat staan en rechtop zitten mijn symptomen verergert.
#potsawarenessday
https://t.co/XzxbUD6bUw

[Long COVID Nederland @LongCovidNL]

🏛️ Rondetafelgesprek in de Tweede Kamer over PAIS

Op maandag 26 oktober vindt van 13.00 tot 16.00 uur een rondetafelgesprek plaats in de Tweede Kamer over long covid en andere postacute infectiesyndromen (PAIS).

Tijdens dit gesprek informeren ervaringsdeskundigen, medische deskundigen en betrokken organisaties de Tweede Kamerleden van de commissie Volksgezondheid, Welzijn en Sport (VWS) over de gevolgen van PAIS en de problemen waar patiënten tegenaan lopen.

💙 @riendebock (actief bij Long Covid Nederland) schuift aan als ervaringsdeskundige. Hij neemt deel aan de eerste gespreksronde, waarin de ervaringen van mensen met PAIS centraal staan.

Voor patiënten is de situatie nog altijd schrijnend. Zij leven al jarenlang met ernstige beperkingen, terwijl volwaardige zorg, perspectief op behandeling en structurele financiering van onderzoek niet zijn geregeld.

📄 Ter voorbereiding heeft Rien samen met andere vrijwilligers bij Long Covid Nederland een position paper geschreven. Hierin brengen we de belangrijkste knelpunten en aandachtspunten voor de Tweede Kamer onder de aandacht. Lees onze bijdrage hier: https://t.co/EfqFgEizx1

📺 Het rondetafelgesprek is maandag 26 oktober van 13.00 tot 16.00 uur live te volgen via Debat Direct, zowel via de app als via de website: https://t.co/EHGyeeMw2W.

We zijn blij dat Rien namens vele patiënten het woord kan voeren. De ervaringen van mensen die al jarenlang met de gevolgen van long covid leven, verdienen een centrale plek in de politieke besluitvorming.

#LongCovid #PAIS #TweedeKamer #VolwaardigeZorg #BiomedischOnderzoek

[Rien de Böck @riendebock]

De overheid verzaakt haar wettelijke plicht jegens kinderen met Long Covid. Zegt de vereniging van jeugdrechtadvocaten.

Leg na dit item nog eens aan Charlotte van 16 uit, waarom financiering van onderzoek en medisch-specialistische zorg niet structureel is.

[Longcovid in het nieuws (Nederlandstalig) @Longcovidnieuws]

Wat nieuwe coronavarianten met long covid doen: de risico’s van herbesmetting
https://t.co/XjYSao4cbb

#longcovid #longcovidnieuws

[Danilo.Buonsenso_Surf4Children @surf4children]

@BioVie_Pharma can we please do a phase 3 trial for #longcovid in europe as well?
I have several patients and, importantly, many in the 16-35 yro group, which was poorly covered in your phase 2 trial.

guys can you help me boosting it to convince $BIVI ?

[Mieke Beselaere @Beselaerem]

@McAlpineLabYale @BioVie_Pharma Thank you !

[Mieke Beselaere @Beselaerem]

@neurostingl @sibylle_berlin sehr interessant

[Mieke Beselaere @Beselaerem]

@miketweetchap Yes, much more is needed but it is no longer correct to state that the pharma industry is not investing in studies. See for yourself in Fred Dejonckheere's 100 active interventional trials in PAIS.

https://t.co/LidvZr8qN7
shared by the @MECFSResearch

[Mieke Beselaere @Beselaerem]

@miketweetchap Yes pharma is absolutely needed and has shown to be needed, not only to finance trials and get a candidate medicine through regulatory approval but also to get the medical community onboard. Caregiver & pharma employee Fred Dejonckheere explained this here https://t.co/octQhisaVh

[S Blitshteyn MD, FAAN, FANA, Dysautonomia Clinic @dysclinic]

I remember a time when senior colleagues were trying to convince me that POTS is about tachycardia and that these "other symptoms" of brain fog, headache and gastrointestinal symptoms are not from POTS, but from "comorbidities that are not POTS." 🤪 I also remember a time when senior colleagues were telling me that the vast majority of POTS patients improve or recover 5-7 years after diagnosis. Or that many patients improve just with salt, fluids and compression. Or that teens with POTS outgrow it. Or that you can exercise your way out of it because astronauts returning from space develop gravity-induced orthostatic intolerance, and then, poof, come out of it with exercise. 😇

Over the last 2 decades of doing this work, I learned that I can now form my own opinions and not listen to what others are telling me because I have thousands of patients to back me up as my experience. Obviously, referral bias is strong for all of us as each of us may see a slightly different patient population, but the patterns are fairly the same.

Which brings me to this point: our understanding of #POTS, and patients with #dysautonomia who do not meet diagnostic criteria for POTS, is very much evolving. Sure, we like to have simplicity and think in black-and-white terms, but it's not like that with complex disorders. POTS is complex and is no longer viewed how we viewed it 30 years ago. Failing to reflect new insights and trying to keep the disorder simple and "how we always knew it" is failing to advance our understanding of these disorders and their treatment.

Our recent review on POTS and other related disorders, which is still trending, highlights new insights and push for access to therapies that our patients cannot get.
https://t.co/qsZet122NQ

[Mieke Beselaere @Beselaerem]

@VivienneVibes Nein, heiss und feuchtig macht die Symptome schlimmer. Deswegen ist Duschen auch so schwierig bei POTS.

[Mieke Beselaere @Beselaerem]

@MECFSResearch Several trial results are expected in the coming months. Fred will update the list. If you are interested in future updates you can let him know in a comment on his LinkedIN post:

https://t.co/9Tl26efcf1

[Mieke Beselaere @Beselaerem]

@C_Scheibenbogen Tx so much for sharing. Several trial results are expected in the coming months. Fred will update the list. If you are interested in future updates you can let him know in a comment on his LinkedIN post, where you also find his analysis:

https://t.co/9Tl26efcf1

[ME/CFS Research Foundation @MECFSResearch]

Neuer Gastbeitrag: Top 100 PAIS-Therapiestudien. Dr. Fred Dejonckheere analysiert die weltweite Pipeline zu #MECFS, #LongCovid, POTS und Fibromyalgie. Viele Mio. Betroffene weltweit ohne Medikamente – entsteht hier ein neues Pharma-Marktsegment? https://t.co/8rDMPt7KGv

[Carmen Scheibenbogen @C_Scheibenbogen]

Ein neuer Blockbuster-Markt mit großem Potenzial: Mehr als 100 Therapiestudien laufen inzwischen zu Long COVID und ME/CFS. Das Feld entwickelt sich rasant und wird zunehmend auch für die Pharmaindustrie attraktiv.

[Hannah Davis @ahandvanish]

A list of 100 promising 2025 clinical trials in infection-onset conditions (including #longcovid, Lyme, ME/CFS, POTS), sorted by mechanism target (viral persistence, neuro-autonomic, coagulation, immune, metabolic, autoimmune, microbiome, diagnostics):

https://t.co/DLWajSLzEM

[Mieke Beselaere @Beselaerem]

@ahandvanish @patientled Tx for sharing. Fred will update the list. If you are interested in future updates you can let him know in a comment on his LinkedIN post, where you also find his analysis for a pharma industry and investor audience:

https://t.co/9Tl26efcf1

[Mieke Beselaere @Beselaerem]

A patent protected breakthrough medicine is needed to finally get all us women with #PAIS correctly #diagnosed and have our disease burden recognized.

May the pharmaceutical industry do for us what it has done for MS, RA, Lupus, Sjögren's !

https://t.co/dioCKRl1fG

[Mieke Beselaere @Beselaerem]

This audit of the Top 100 #PAIS (Post Acute Infection Syndromes) trials reveals that the 'Herding' of Big Pharma into #LongCOVID and #MECFS and #POTS has begun. https://t.co/pJpvDMzSIQ