Jeltje Held
@jeltjeheld.bsky.social
Wees jezelf, er zijn al genoeg anderen
Reposted by Jeltje Held
In Oostenrijk is er een lijst met offlabel longcovid PAIS / MEcvs medicijnen opgesteld die artsen en patiënten de mogelijkheid bied offlabel medicijnen te gebruiken die nu ook betaald worden door de verzekeraar.
2 vliegen in 1 klap. PAIS zoals Longcovid & MEcvs! www.meduniwien.ac.at/web/referenz...
2 vliegen in 1 klap. PAIS zoals Longcovid & MEcvs! www.meduniwien.ac.at/web/referenz...
December 14, 2024 at 12:15 PM
In Oostenrijk is er een lijst met offlabel longcovid PAIS / MEcvs medicijnen opgesteld die artsen en patiënten de mogelijkheid bied offlabel medicijnen te gebruiken die nu ook betaald worden door de verzekeraar.
2 vliegen in 1 klap. PAIS zoals Longcovid & MEcvs! www.meduniwien.ac.at/web/referenz...
2 vliegen in 1 klap. PAIS zoals Longcovid & MEcvs! www.meduniwien.ac.at/web/referenz...
Reposted by Jeltje Held
I'm supporting the #lemonchallengemecfs to raise awareness about ME & to stimulate biomedical research. It wasn't easy as I normally do not eat citrus fruits. 😊🍋
I nominate Dr. Rob Wüst, Jettie Rozemond & Julian Bushoff.
Please join me, donate & share.
youtu.be/VRCNEGsGcns?...
Thank you! 🙏🙏🙏
I nominate Dr. Rob Wüst, Jettie Rozemond & Julian Bushoff.
Please join me, donate & share.
youtu.be/VRCNEGsGcns?...
Thank you! 🙏🙏🙏
Lemon challenge M.E.
YouTube video by Anil about ME
youtu.be
December 17, 2024 at 7:01 PM
I'm supporting the #lemonchallengemecfs to raise awareness about ME & to stimulate biomedical research. It wasn't easy as I normally do not eat citrus fruits. 😊🍋
I nominate Dr. Rob Wüst, Jettie Rozemond & Julian Bushoff.
Please join me, donate & share.
youtu.be/VRCNEGsGcns?...
Thank you! 🙏🙏🙏
I nominate Dr. Rob Wüst, Jettie Rozemond & Julian Bushoff.
Please join me, donate & share.
youtu.be/VRCNEGsGcns?...
Thank you! 🙏🙏🙏
Reposted by Jeltje Held
Mit der #LemonChallengeMECFS will die MECFS Research Foundation das Bewusstsein für #MECFS stärken – eine schwere, oft unsichtbare Krankheit, die weltweit über 40 Millionen Menschen betrifft, auch viele Kinder. Durch die Pandemie (#LongCovid) hat sich die Betroffenen-Anzahl mehr als verdoppelt.
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1/x
Lemon Challenge
Mit der #LemonChallengeMECFS wollen wir das Bewusstsein für ME/CFS stärken – eine schwere, oft unsichtbare Krankheit, die weltweit über 40 Millionen Men
LemonChallengeMECFS.org
December 6, 2024 at 1:25 PM
Mit der #LemonChallengeMECFS will die MECFS Research Foundation das Bewusstsein für #MECFS stärken – eine schwere, oft unsichtbare Krankheit, die weltweit über 40 Millionen Menschen betrifft, auch viele Kinder. Durch die Pandemie (#LongCovid) hat sich die Betroffenen-Anzahl mehr als verdoppelt.
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1/x
Reposted by Jeltje Held
🍋 Founder @JoergHeydecke launches the #LemonChallengeMECFS - a symbolic gesture for the suffering of the >40 million people with #MECFS worldwide. @C_Scheibenbogen, Seppo /Hamburger Goldkehlchen, @ffhambu are nominated 💛 Every bite counts!
‼️Teilen, Mitmachen, Nominieren, Spenden‼️🍋
4/4
‼️Teilen, Mitmachen, Nominieren, Spenden‼️🍋
4/4
December 6, 2024 at 1:35 PM
🍋 Founder @JoergHeydecke launches the #LemonChallengeMECFS - a symbolic gesture for the suffering of the >40 million people with #MECFS worldwide. @C_Scheibenbogen, Seppo /Hamburger Goldkehlchen, @ffhambu are nominated 💛 Every bite counts!
‼️Teilen, Mitmachen, Nominieren, Spenden‼️🍋
4/4
‼️Teilen, Mitmachen, Nominieren, Spenden‼️🍋
4/4
Reposted by Jeltje Held
Emerge Australia sharing these ME/CFS clinical education resources at GPCE in Melbourne in November
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #longcovid
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #longcovid
November 29, 2024 at 3:11 PM
Emerge Australia sharing these ME/CFS clinical education resources at GPCE in Melbourne in November
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #longcovid
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #longcovid
Reposted by Jeltje Held
Zo gaan we in Nederland om met mensen (vrouwen) wiens ziekte niet herkend wordt door artsen.
#CGT/GET#SOLK/ALK #ReguliereKwakzalverij
#MEdischeMisstand
#MEdischSchandaal
#TheGreatestMEdicalScandal
#ME #LongCovid #Lyme #Qkoorts etc #NeuroImmunologie #Kennishiaat
www.linkedin.com/posts/ettie-...
#CGT/GET#SOLK/ALK #ReguliereKwakzalverij
#MEdischeMisstand
#MEdischSchandaal
#TheGreatestMEdicalScandal
#ME #LongCovid #Lyme #Qkoorts etc #NeuroImmunologie #Kennishiaat
www.linkedin.com/posts/ettie-...
November 28, 2024 at 12:28 PM
Zo gaan we in Nederland om met mensen (vrouwen) wiens ziekte niet herkend wordt door artsen.
#CGT/GET#SOLK/ALK #ReguliereKwakzalverij
#MEdischeMisstand
#MEdischSchandaal
#TheGreatestMEdicalScandal
#ME #LongCovid #Lyme #Qkoorts etc #NeuroImmunologie #Kennishiaat
www.linkedin.com/posts/ettie-...
#CGT/GET#SOLK/ALK #ReguliereKwakzalverij
#MEdischeMisstand
#MEdischSchandaal
#TheGreatestMEdicalScandal
#ME #LongCovid #Lyme #Qkoorts etc #NeuroImmunologie #Kennishiaat
www.linkedin.com/posts/ettie-...
Reposted by Jeltje Held
Death is natural, but death by PEM is preventable. PEM is also widely recognised as the signature by which disease progression will be understood.
If you have #ME or a similar post infection illness, or are providing services to anyone who has #PEM (paid or not) do your best to learn about it.
If you have #ME or a similar post infection illness, or are providing services to anyone who has #PEM (paid or not) do your best to learn about it.
"Post Exertional Malaise" PEM is a terrible description of how post infection diseases, like #LongCovid #Lyme #ME etc. progress if not properly managed.
PEM cannot respond to mental health strategies.
Maeve died from NHS & government ignorance of PEM. She was not the first, nor the last.
PEM cannot respond to mental health strategies.
Maeve died from NHS & government ignorance of PEM. She was not the first, nor the last.
This matters because confusing an illness as lethal as #ME can be with a mental illness is very high risk, both to health and care professionals and to everyone at risk of disease progression.
Everyone with ME and #LongCovid ME is at risk of disease progression without a clear understanding of #PEM
Everyone with ME and #LongCovid ME is at risk of disease progression without a clear understanding of #PEM
November 27, 2024 at 11:10 AM
Reposted by Jeltje Held
En weer een lijst, met deskundigen en mensen die gewoon in allerlei onderwerpen geïnteresseerd zijn om mee te discussiëren en van wie je kunt leren. O.a @vanhoef.bsky.social @michellehaas.bsky.social @bv-weinberg.bsky.social @mvanderloo.bsky.social en vele anderen! go.bsky.app/NmLy4Sz
November 22, 2024 at 11:36 AM
En weer een lijst, met deskundigen en mensen die gewoon in allerlei onderwerpen geïnteresseerd zijn om mee te discussiëren en van wie je kunt leren. O.a @vanhoef.bsky.social @michellehaas.bsky.social @bv-weinberg.bsky.social @mvanderloo.bsky.social en vele anderen! go.bsky.app/NmLy4Sz
Reposted by Jeltje Held
💡 Must watch explainer video over het #MECVS schandaal. De video zet de geschiedenis duidelijk uiteen, beginnend in 1955.
Naast de video is er ook een transcript: medium.com/@abrokenbatt...
Naast de video is er ook een transcript: medium.com/@abrokenbatt...
New Video: @georgemonbiot.bsky.social describes the treatment of #MECFS as "The Greatest Medical Scandal of the 21st century". The video explores the impact of ineffective & harmful treatments & how they were defended by the scientific & media establishment.
youtu.be/RiwX9Y0NbiQ?...
youtu.be/RiwX9Y0NbiQ?...
ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)
YouTube video by Broken Battery
youtu.be
November 21, 2024 at 2:42 PM
💡 Must watch explainer video over het #MECVS schandaal. De video zet de geschiedenis duidelijk uiteen, beginnend in 1955.
Naast de video is er ook een transcript: medium.com/@abrokenbatt...
Naast de video is er ook een transcript: medium.com/@abrokenbatt...
Reposted by Jeltje Held
2/
People with ME/CFS often face dismissive attitudes from professionals. Though not a substitute for adequate education, the use of the NICE 2021 guideline for ME/CFS in clinical practice could improve care quality
Summary (& all infographics): bit.ly/NICE21MESumm... #MECFS
People with ME/CFS often face dismissive attitudes from professionals. Though not a substitute for adequate education, the use of the NICE 2021 guideline for ME/CFS in clinical practice could improve care quality
Summary (& all infographics): bit.ly/NICE21MESumm... #MECFS
November 19, 2024 at 6:56 PM
2/
People with ME/CFS often face dismissive attitudes from professionals. Though not a substitute for adequate education, the use of the NICE 2021 guideline for ME/CFS in clinical practice could improve care quality
Summary (& all infographics): bit.ly/NICE21MESumm... #MECFS
People with ME/CFS often face dismissive attitudes from professionals. Though not a substitute for adequate education, the use of the NICE 2021 guideline for ME/CFS in clinical practice could improve care quality
Summary (& all infographics): bit.ly/NICE21MESumm... #MECFS
Reposted by Jeltje Held
If you know people still on twitter who WANT to leave but are struggling to make the leap - my latest article is designed to ease the transition.
It’s got tips and tricks as well as suggestions for how to ensure communities stick together.
Small 🧵 of other helpful articles I’ve found /1
It’s got tips and tricks as well as suggestions for how to ensure communities stick together.
Small 🧵 of other helpful articles I’ve found /1
The Xitter Exodus and What it Means for the Disability Community
Disabled and chronically ill people have long used Twitter/X for community, fundraising, companionship and support. With folks leaving in droves - where will we go and how can we stick together?
www.disabledginger.com
November 17, 2024 at 3:38 AM
If you know people still on twitter who WANT to leave but are struggling to make the leap - my latest article is designed to ease the transition.
It’s got tips and tricks as well as suggestions for how to ensure communities stick together.
Small 🧵 of other helpful articles I’ve found /1
It’s got tips and tricks as well as suggestions for how to ensure communities stick together.
Small 🧵 of other helpful articles I’ve found /1
Reposted by Jeltje Held
Are we vaccinating under 2s more than a generation (30 years) ago? We used fewer vaccines, protecting against 8 infectious diseases. These complex vaccines, containing over 3000 antigens, were good, but there was room for improvement.
1/8
1/8
November 15, 2024 at 2:50 PM
Are we vaccinating under 2s more than a generation (30 years) ago? We used fewer vaccines, protecting against 8 infectious diseases. These complex vaccines, containing over 3000 antigens, were good, but there was room for improvement.
1/8
1/8
Reposted by Jeltje Held
Exposure to pathogens is always unwanted: there is always a risk and you really do not need to get ill to become healthier, nor does your immune system! That would be a very incorrect interpretation!!
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4/8
November 15, 2024 at 2:51 PM
Exposure to pathogens is always unwanted: there is always a risk and you really do not need to get ill to become healthier, nor does your immune system! That would be a very incorrect interpretation!!
4/8
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Mijn eerste vraag hier: wie weet of je als Nederlandse toerist in Duitsland Paxlovid voorgeschreven kunt krijgen? Helaas een besmetting hier in huis.
November 15, 2024 at 9:38 PM
Mijn eerste vraag hier: wie weet of je als Nederlandse toerist in Duitsland Paxlovid voorgeschreven kunt krijgen? Helaas een besmetting hier in huis.
Reposted by Jeltje Held
Please follow and share this starter pack for #MECFS and #LongCovid! 💙
I have started a Starter Pack for ME and Long COVID. 💙
It includes some mutuals with other packs but also some new faces too. :)
Please let me know if you want to be added. I know I still have about a million wonderful people to add. 💙
go.bsky.app/6R7bqc7
It includes some mutuals with other packs but also some new faces too. :)
Please let me know if you want to be added. I know I still have about a million wonderful people to add. 💙
go.bsky.app/6R7bqc7
November 12, 2024 at 5:29 AM
Please follow and share this starter pack for #MECFS and #LongCovid! 💙
Reposted by Jeltje Held
Er zijn volgens mij de laatste uren weer wat mensen bijgekomen die de overstap hebben gemaakt naar Bluesky. Als je mensen uit de PAIS community tegen komt die ik er nog in kan zetten let me know! 👇🏻
Omdat ik de internationale Long Covid, ME, etc starterpack zo handig vond voor het vinden van wat familiar faces ben ik deze Nederlandse variant net even snel gestart. Ga hem later nog aanvullen! En doe gerust suggesties!
go.bsky.app/BkULsee
go.bsky.app/BkULsee
November 13, 2024 at 5:02 PM
Er zijn volgens mij de laatste uren weer wat mensen bijgekomen die de overstap hebben gemaakt naar Bluesky. Als je mensen uit de PAIS community tegen komt die ik er nog in kan zetten let me know! 👇🏻
Reposted by Jeltje Held
There are now 94 free leaflets available on ME Association website. A great facility 👍👏
meassociation.org.uk/free-me-cfs-...
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
meassociation.org.uk/free-me-cfs-...
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
January 20, 2024 at 8:06 PM
There are now 94 free leaflets available on ME Association website. A great facility 👍👏
meassociation.org.uk/free-me-cfs-...
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
meassociation.org.uk/free-me-cfs-...
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Reposted by Jeltje Held
#LongCovid 🦠 ‘EXERCISE IS NOT MEDICINE IN LONGCOVID’
voor wie het gemist heeft
✅belangrijk artikel👇van @RobWust @KasperJanssen ea
✅ ‘Post-exertionele malaise is de verergering van klachten na inspanning, waardoor sommige vormen van revalidatie en fysiotherapie averechts werken’
voor wie het gemist heeft
✅belangrijk artikel👇van @RobWust @KasperJanssen ea
✅ ‘Post-exertionele malaise is de verergering van klachten na inspanning, waardoor sommige vormen van revalidatie en fysiotherapie averechts werken’
October 7, 2023 at 4:49 PM
#LongCovid 🦠 ‘EXERCISE IS NOT MEDICINE IN LONGCOVID’
voor wie het gemist heeft
✅belangrijk artikel👇van @RobWust @KasperJanssen ea
✅ ‘Post-exertionele malaise is de verergering van klachten na inspanning, waardoor sommige vormen van revalidatie en fysiotherapie averechts werken’
voor wie het gemist heeft
✅belangrijk artikel👇van @RobWust @KasperJanssen ea
✅ ‘Post-exertionele malaise is de verergering van klachten na inspanning, waardoor sommige vormen van revalidatie en fysiotherapie averechts werken’