It's ME Brangel

#Sicknesswillnotstealourpurpose I’m Angelique. Executive Creative Assistant, Executive Volunteer Foundation board Zero Potential Universe #ZPU Since 1989 ME/CFS

[It's ME Brangel @info_angelique]

https://t.co/9gzjVVGr8L #ZPU #BRF #HealthInnovationchallenge #DigitalHealth #Entrepreneurs #Chronicdiseases #BioTechnology #empower

[It's M.E. Linda 💙 😷 @HappyHoundHouse]

🌻Regular WEEKLY votes needed please! Same day as #MEAwarenessHour🌻

PLEASE VOTE for @Invest_in_ME to share in grant monies from My Giving Circle - closes 30/12

#11 on this round for UK/🇮🇪
#MyalgicEncephalomyelitis
https://t.co/zBDvyZQlSz

ExtraVotes?
MEResearchUK
25% ME Grp

[jim faas 🍀 @JimFaas]

#LongCovid 🦠 WAT IS DE SLEUTEL?

✅ vandaag👇 een welkom artikel in Trouw over de ontwikkelingen in onderzoek

✅ en het belang daarbij van de al bestaande kennis over vergelijkbare ziektebeelden #ME #CVS #Lyme #Qkoorts

[jim faas 🍀 @JimFaas]

UWV🦠 2e SYMPOSIUM COVID EN POSTINFECTIEUZE ZIEKTEBEELDEN

✅ met een volledig gevulde zaal…

[It's ME Brangel @info_angelique]

@JimFaas Zo fijn dit te lezen! Dank voor het delen!

[jim faas 🍀 @JimFaas]

UWV🦠 SYMPOSIUM COVID EN POSTINFECTIEUZE ZIEKTEBEELDEN

✅ vandaag was het zover, met 260 UWV-artsen en sociaal medisch verpleegkundigen uit Zuid-Nederland
✅ laatste stand van zaken, wetenschappelijke inzichten

✅ PEM, POTS, MCA, brainfog, pacing, ervaringsverhalen, hoe re-integreren, hoe beoordelen: het kwam allemaal aan bod

✅ met o.a. Willem Pieters, alfons olde loohuis, Anske van der Bom, Annelien Duits, Willemien van Teeffelen, Ernst Jurgens Carlijn Wiertz

✅ met dank aan Nina Wijnands, Ron Friesen en alle andere organisatoren en sprekers

✅ het was een uitstekende dag! 👍

✅ tot volgende week voor de reprise in Almere voor Noord-Nederland

[It's ME Brangel @info_angelique]

@JimFaas Dankjewel voor het delen 🙏

[Jos Bosch @JosBoschNMCB]

@AnilvanderZee and everyone in this thread, thank you for voicing your concerns. Our initial response @NMCB_studie did not fully address the depth of the issue raised. We understand the significance of terminology in the ME/CFS community, and we are committed to respecting that.

We will ensure our language better aligns with the sensitivities and realities of those living with ME/CFS. We are focused exclusively on biomedical research for ME/CFS, guided by patient input throughout every stage of our work. Patient involvement is critical in safeguarding the direction and impact of our research. We appreciate being held accountable, and we are committed to learning from this. Thank you again for your feedback.

[It's ME Brangel @info_angelique]

@JosBoschNMCB @AnilvanderZee @NMCB_studie @OpenMedF Thank you for this update! 🙏

[It's ME Brangel @info_angelique]

@AnilvanderZee @JosBoschNMCB @NMCB_studie @OpenMedF Dank Anil!

[It's ME Brangel @info_angelique]

@JanetDafoe Happy Birthday!!! 🎂

[It's ME Brangel @info_angelique]

@JanetDafoe Congratulations 🎈

[It's ME Brangel @info_angelique]

@JimFaas Dankjewel @JimFaas! Ik waardeer jouw bijdrages altijd enorm. Onderstaande vraag is meer bedoeld ter illustratie, hoe traag betreffende personen dit oppikken.
Vraagje; expertise centra waar komen de specialisten vandaan als er op dat gebied nog steeds geen scholing bestaat?

[It's ME Brangel @info_angelique]

@AnilvanderZee Wat een strijder ben jij! Dankjewel 🙏

[It's ME Brangel @info_angelique]

@AmandaB55744931 Of course they still have to be educated. I’m so sorry for you. Don’t loose hope though 😘

[It's ME Brangel @info_angelique]

@NMCB_studie @AnilvanderZee @OpenMedF In this stage of a study, you should choose your words carefully. We lost already so much time because of issues like this! Let’s fight ME correctly and respectfully 🙏 Thank you.

[It's ME Brangel @info_angelique]

@AnilvanderZee @NMCB_studie @OpenMedF I agree with @AnilvanderZee!

[It's ME Brangel @info_angelique]

@AnilvanderZee Agree!

[Etta Loveday @EttaLovedayME]

ME/CFS: Maeve Boothby O'Neill's inquest opens in Exeter #MaeveBoothby #MaeveInquest https://t.co/QgUq8IgV4t

[@TheChronicCollaboration @TheChronicColab]

#SaveCarlasLife

As the inquest into #MaeveBoothby O'Neill who died of very severe #MEcfs begins, Carla's father Pierre wishes to share an update. She is currently being mistreated in West Middlesex NHS hospital. There are worrying echoes here as with others. Nothing changes.

[Etta Loveday @EttaLovedayME]

#MaeveBoothby #MaeveInquest