Hier mein Statement zur Verzögerung beim Aktionsplan #pais. Bei diesem Spiel auf Zeit leiden vor allen die Betroffenen. Wir können Notwendiges nicht immer erst umsetzen, wenn die Welt perfekt ist. #versorgungsmangel #me_cfs
www.puls24.at/news/chronik...
www.puls24.at/news/chronik...
Neurologie-Gesellschaft für Umsetzung des PAIS-Aktionsplanes
Die Österreichische Gesellschaft für Neurologie (ÖGN) sieht den geplanten Aktionsplan zu postakuten Infektionssyndromen (PAIS) wie ME/CFS oder Post Covid als "sinnvolle und notwendige Strategie" für d...
www.puls24.at
October 26, 2025 at 11:50 AM
Hier mein Statement zur Verzögerung beim Aktionsplan #pais. Bei diesem Spiel auf Zeit leiden vor allen die Betroffenen. Wir können Notwendiges nicht immer erst umsetzen, wenn die Welt perfekt ist. #versorgungsmangel #me_cfs
www.puls24.at/news/chronik...
www.puls24.at/news/chronik...
Strange - it's working for me. Maybe it's some geo/location setting. Who knows? That's a shame.
If you have the energy/are able, you could try emailing them. me_cfs@nhmrc.gov.au
They might be able to provide the survey in a different format.
If you have the energy/are able, you could try emailing them. me_cfs@nhmrc.gov.au
They might be able to provide the survey in a different format.
April 15, 2025 at 3:38 AM
Strange - it's working for me. Maybe it's some geo/location setting. Who knows? That's a shame.
If you have the energy/are able, you could try emailing them. me_cfs@nhmrc.gov.au
They might be able to provide the survey in a different format.
If you have the energy/are able, you could try emailing them. me_cfs@nhmrc.gov.au
They might be able to provide the survey in a different format.
#FYI #me #cfs #me_cfs #postcovid #longcovid #fatigue #fatiguesyndrome #medicine #science
Why you can't move (you shouldn't!) in fatigue syndrome.
Microglia inflammation completely depletes the brain of serotonin, which is mandatory to even TRY to move.
www.youtube.com/watch?v=Nx6q...
Why you can't move (you shouldn't!) in fatigue syndrome.
Microglia inflammation completely depletes the brain of serotonin, which is mandatory to even TRY to move.
www.youtube.com/watch?v=Nx6q...
070 - Why ME/CFS "fatigue" is not normal fatigue
YouTube video by Jarred Younger, PhD
www.youtube.com
August 25, 2025 at 2:06 PM
#FYI #me #cfs #me_cfs #postcovid #longcovid #fatigue #fatiguesyndrome #medicine #science
Why you can't move (you shouldn't!) in fatigue syndrome.
Microglia inflammation completely depletes the brain of serotonin, which is mandatory to even TRY to move.
www.youtube.com/watch?v=Nx6q...
Why you can't move (you shouldn't!) in fatigue syndrome.
Microglia inflammation completely depletes the brain of serotonin, which is mandatory to even TRY to move.
www.youtube.com/watch?v=Nx6q...
Von #ME_CFS betroffene Menschen haben es auf mehreren Ebenen schwer. Mehr dazu auch im #oe1Mittagsjournal
www.sn.at/panorama/oes...
www.sn.at/panorama/oes...
ME/CFS: Krankenpflege-Präsidentin sieht bei Gutachten Mängel
Die Präsidentin des Österreichischen Gesundheits- und Krankenpflegeverbands, Elisabeth Potzmann, weist auf Probleme bei der sozialen Absicherung von Post Covid- und ME/CFS-Patienten und -Patientinnen ...
www.sn.at
December 30, 2024 at 8:50 AM
Von #ME_CFS betroffene Menschen haben es auf mehreren Ebenen schwer. Mehr dazu auch im #oe1Mittagsjournal
www.sn.at/panorama/oes...
www.sn.at/panorama/oes...
(Massachusetts, USA)
This exciting study led by a sympathetic researcher has been struggling to recruit for years. It now has this webpage which is new to me.
Please share widely
rally.massgeneralbrigham.org/study/me_cfs...
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
This exciting study led by a sympathetic researcher has been struggling to recruit for years. It now has this webpage which is new to me.
Please share widely
rally.massgeneralbrigham.org/study/me_cfs...
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
September 11, 2024 at 4:15 PM
(Massachusetts, USA)
This exciting study led by a sympathetic researcher has been struggling to recruit for years. It now has this webpage which is new to me.
Please share widely
rally.massgeneralbrigham.org/study/me_cfs...
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
This exciting study led by a sympathetic researcher has been struggling to recruit for years. It now has this webpage which is new to me.
Please share widely
rally.massgeneralbrigham.org/study/me_cfs...
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
This is #pots, postural orthostatic tachycardia syndrome, a condition that makes your heart race for no fucking reason whatsoever when you stand up, or even just sit upright. It's a common feature of #me_cfs and other illnesses. It makes ordinary activities […]
[Original post on masto.ai]
[Original post on masto.ai]
January 6, 2025 at 2:04 AM
This is #pots, postural orthostatic tachycardia syndrome, a condition that makes your heart race for no fucking reason whatsoever when you stand up, or even just sit upright. It's a common feature of #me_cfs and other illnesses. It makes ordinary activities […]
[Original post on masto.ai]
[Original post on masto.ai]
This is #POTS, postural orthostatic tachycardia syndrome. I'm just sitting in a chair at my sewing machine and my pulse is 104. It can cause days of exhaustion from minor effort. It's a common feature of #ME_CFS and other illnesses. #ChonicIllness
January 6, 2025 at 2:50 AM
This is #POTS, postural orthostatic tachycardia syndrome. I'm just sitting in a chair at my sewing machine and my pulse is 104. It can cause days of exhaustion from minor effort. It's a common feature of #ME_CFS and other illnesses. #ChonicIllness
I've been terrified of the drug gabapentin for years, so many horror stories. But my #me_cfs, #chronicpain, #insomnia, and other assorted misery have gotten bad enough, I decided to try it. I just had a fabulous 13 hour sleep, not much pain, and I can only pray I keep tolerating this med. I […]
Original post on masto.ai
masto.ai
January 25, 2025 at 11:29 PM
I've been terrified of the drug gabapentin for years, so many horror stories. But my #me_cfs, #chronicpain, #insomnia, and other assorted misery have gotten bad enough, I decided to try it. I just had a fabulous 13 hour sleep, not much pain, and I can only pray I keep tolerating this med. I […]
NEW
Striking brain similarities have been detected in patients who experience #LongCOVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), in particular, a larger than normal hippocampus.
news.griffith.edu.au/2025/02/11/l...
#PostCOVID #ME_CFS
Striking brain similarities have been detected in patients who experience #LongCOVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), in particular, a larger than normal hippocampus.
news.griffith.edu.au/2025/02/11/l...
#PostCOVID #ME_CFS
Large hippocampus detected in Long COVID and ME/CFS patients - Griffith News
Striking brain similarities have been detected in patients who experience Long COVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), in
news.griffith.edu.au
February 11, 2025 at 4:21 PM
NEW
Striking brain similarities have been detected in patients who experience #LongCOVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), in particular, a larger than normal hippocampus.
news.griffith.edu.au/2025/02/11/l...
#PostCOVID #ME_CFS
Striking brain similarities have been detected in patients who experience #LongCOVID and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS), in particular, a larger than normal hippocampus.
news.griffith.edu.au/2025/02/11/l...
#PostCOVID #ME_CFS
NHMRC seeks feedback from #MECFS and #longCOVID communities for new guidelines. Share your thoughts by completing the survey: consultations.nhmrc.gov.au/clinical-pra...
Closing date: 27 April 2025. Queries? Email me_cfs@nhmrc.gov.au.
Closing date: 27 April 2025. Queries? Email me_cfs@nhmrc.gov.au.
March 24, 2025 at 2:14 AM
NHMRC seeks feedback from #MECFS and #longCOVID communities for new guidelines. Share your thoughts by completing the survey: consultations.nhmrc.gov.au/clinical-pra...
Closing date: 27 April 2025. Queries? Email me_cfs@nhmrc.gov.au.
Closing date: 27 April 2025. Queries? Email me_cfs@nhmrc.gov.au.
Huge study of ME/CFS reveals genetic 'hotspots' linked to the debilitating syndrome #Science #HealthandMedicine #Genetics #ME_CFS #ChronicIllness
Huge study of ME/CFS reveals genetic 'hotspots' linked to the debilitating syndrome
A large study of ME/CFS included more than 15,000 people and identified eight locations in the genome linked to the disease.
purescience.news
August 7, 2025 at 3:16 AM
Huge study of ME/CFS reveals genetic 'hotspots' linked to the debilitating syndrome #Science #HealthandMedicine #Genetics #ME_CFS #ChronicIllness
Skeletal muscle properties in #LongCovid and #me_cfs differ from those induced by bed rest
https://www.medrxiv.org/content/10.1101/2025.05.02.25326885v1
@whn @longcovid
#pem
https://www.medrxiv.org/content/10.1101/2025.05.02.25326885v1
@whn @longcovid
#pem
May 24, 2025 at 10:44 AM
Skeletal muscle properties in #LongCovid and #me_cfs differ from those induced by bed rest
https://www.medrxiv.org/content/10.1101/2025.05.02.25326885v1
@whn @longcovid
#pem
https://www.medrxiv.org/content/10.1101/2025.05.02.25326885v1
@whn @longcovid
#pem
UGH - thespinoff article about recovery from CFS/ME using The Lightning Processs thespinoff.co.nz/society/18-0... I'm exhausted by having to debunk this shit. #cfsme #ME_CFS .
Chronic fatigue and me: the reality of a torrid illness and light at the end of the tunnel
Danny Rood shares his personal experiences of living with the illness for six years, and what eventually helped improve his quality of life.
thespinoff.co.nz
June 17, 2025 at 10:56 PM
UGH - thespinoff article about recovery from CFS/ME using The Lightning Processs thespinoff.co.nz/society/18-0... I'm exhausted by having to debunk this shit. #cfsme #ME_CFS .
#FYI #me #cfs #me_cfs #postcovid #longcovid #fatigue #fatiguesyndrome
Immobility during infection has a good reason. The infections/eg. viruses like EBV, SARS-CoV2 etc. can severely disturb energy transport on a cellular level in the body, so never force activity, that could backfire badly!
Immobility during infection has a good reason. The infections/eg. viruses like EBV, SARS-CoV2 etc. can severely disturb energy transport on a cellular level in the body, so never force activity, that could backfire badly!
August 25, 2025 at 2:08 PM
#FYI #me #cfs #me_cfs #postcovid #longcovid #fatigue #fatiguesyndrome
Immobility during infection has a good reason. The infections/eg. viruses like EBV, SARS-CoV2 etc. can severely disturb energy transport on a cellular level in the body, so never force activity, that could backfire badly!
Immobility during infection has a good reason. The infections/eg. viruses like EBV, SARS-CoV2 etc. can severely disturb energy transport on a cellular level in the body, so never force activity, that could backfire badly!
#synapsen – ein Wissenschaftspodcast:
#LongCovid: Wo stehen wir?
Auch in Jahr sechs nach Beginn der #Corona-Pandemie leiden Hunderttausende an Long Covid. Welche Erklärungen und Therapien gibt es mittlerweile?
1,5 Millionen Menschen in Deutschland leiden einer Schätzung der #me_cfs Foundation […]
#LongCovid: Wo stehen wir?
Auch in Jahr sechs nach Beginn der #Corona-Pandemie leiden Hunderttausende an Long Covid. Welche Erklärungen und Therapien gibt es mittlerweile?
1,5 Millionen Menschen in Deutschland leiden einer Schätzung der #me_cfs Foundation […]
Original post on mastodon.social
mastodon.social
December 6, 2025 at 1:26 PM
#synapsen – ein Wissenschaftspodcast:
#LongCovid: Wo stehen wir?
Auch in Jahr sechs nach Beginn der #Corona-Pandemie leiden Hunderttausende an Long Covid. Welche Erklärungen und Therapien gibt es mittlerweile?
1,5 Millionen Menschen in Deutschland leiden einer Schätzung der #me_cfs Foundation […]
#LongCovid: Wo stehen wir?
Auch in Jahr sechs nach Beginn der #Corona-Pandemie leiden Hunderttausende an Long Covid. Welche Erklärungen und Therapien gibt es mittlerweile?
1,5 Millionen Menschen in Deutschland leiden einer Schätzung der #me_cfs Foundation […]
#birgitontour #PflegendeAngehörigeundihreAnliegen Danke an die #me_cfs Ströck-Foundation, hier mitarbeiten zu dürfen. Für die Betroffenen und ihre Mitbetroffenen, die pflegenden Angehörigen. Sie brauchen zur so wichtigen Forschung dringend Unterstützung und soziale Absicherung.
June 7, 2025 at 6:52 PM
#birgitontour #PflegendeAngehörigeundihreAnliegen Danke an die #me_cfs Ströck-Foundation, hier mitarbeiten zu dürfen. Für die Betroffenen und ihre Mitbetroffenen, die pflegenden Angehörigen. Sie brauchen zur so wichtigen Forschung dringend Unterstützung und soziale Absicherung.
Dr. Orit Gourgy-Hacohen recently observed BHC's patient-centered care for ME/CFS. She praised the team’s hospitality & commitment to teaching.
👉 Read more: loom.ly/uGyBfTc
#ME_CFS #MedicalEducation
👉 Read more: loom.ly/uGyBfTc
#ME_CFS #MedicalEducation
Bridging Borders to Advance ME/CFS Care
Bridging Borders to Advance ME/CFS Care: A Conversation with Dr. Gourgy-Hacohen and Nurse Practitioner, Jennifer Bell At the Bateman Horne Center (BHC), our mission to educate and empower providers…
loom.ly
April 7, 2025 at 8:15 PM
Dr. Orit Gourgy-Hacohen recently observed BHC's patient-centered care for ME/CFS. She praised the team’s hospitality & commitment to teaching.
👉 Read more: loom.ly/uGyBfTc
#ME_CFS #MedicalEducation
👉 Read more: loom.ly/uGyBfTc
#ME_CFS #MedicalEducation
NHMRC is seeking community input for new clinical guidelines for ME/CFS and long COVID. Complete survey to help shape these guidelines and discuss your needs, potential challenges, and priorities. Submissions close on 27 April 2025. Email: me_cfs@nhmrc.gov.au for more info. LINK: vist.ly/3myme8p
March 30, 2025 at 9:00 PM
NHMRC is seeking community input for new clinical guidelines for ME/CFS and long COVID. Complete survey to help shape these guidelines and discuss your needs, potential challenges, and priorities. Submissions close on 27 April 2025. Email: me_cfs@nhmrc.gov.au for more info. LINK: vist.ly/3myme8p
talkshow
Die Versprechen gebrochen
Gesundheitsministerin Ni#na #Warken und Forschungsministerin #DorotheeBär lesen in einem Video Briefe von #ME_CFS-Betroffenen vor. Jetzt #kürzt die Regierung bei der #Erforschung der Erkrankung. Deshalb erhalten sie hier noch einen Brief […]
Die Versprechen gebrochen
Gesundheitsministerin Ni#na #Warken und Forschungsministerin #DorotheeBär lesen in einem Video Briefe von #ME_CFS-Betroffenen vor. Jetzt #kürzt die Regierung bei der #Erforschung der Erkrankung. Deshalb erhalten sie hier noch einen Brief […]
Original post on mastodon.social
mastodon.social
November 3, 2025 at 8:05 PM
talkshow
Die Versprechen gebrochen
Gesundheitsministerin Ni#na #Warken und Forschungsministerin #DorotheeBär lesen in einem Video Briefe von #ME_CFS-Betroffenen vor. Jetzt #kürzt die Regierung bei der #Erforschung der Erkrankung. Deshalb erhalten sie hier noch einen Brief […]
Die Versprechen gebrochen
Gesundheitsministerin Ni#na #Warken und Forschungsministerin #DorotheeBär lesen in einem Video Briefe von #ME_CFS-Betroffenen vor. Jetzt #kürzt die Regierung bei der #Erforschung der Erkrankung. Deshalb erhalten sie hier noch einen Brief […]