Zurück aus der Garage, Luftmatratze holen. Was man nicht so alles nebenbei findet.... Möchte jemand vier Jahre abgelaufene Bratkartoffeln verkosten? (Tja, letzter Urlaub ist sechs Jahre her, danke, MECFS.)

Yesterday I was at the opticians for an eye test. I was relieved and impressed that when I mentioned my #MECFS she just accepted it and took it on board. Yay! I’m getting Transitions Xtractive lenses to hopefully reduce the light sensitivity issues I’ve been having. Looking forward to them 🤓😎

#chronicillness#autoimmune#chronicallyill#chronicillnesshumor#chronicillnessmemes#autoimmunememes#fibromemes#fibromyalgia#spoonie#spoonielife#mecfs#longcovid

2/ Jonas Bergquist says: "... the board is recommending 'graded exercise therapy', GET, despite clinical research showing that it mostly doesn't work and could be harmful to post-infection patients groups as ME-patients." #LongCovid#ChronicFatigueSyndrome#MEcfs#CFS#PwME

Euractiv: "New guidelines for Swedish doctors criticised for putting patients at serious risk" An article in English I’ve seen recommended about the recent and controversial guidelines for post-infection patients. www.euractiv.com/section/heal...#MEcfs#PwME#LongCovid 1/

New guidelines for Swedish doctors criticised for putting patients at serious risk

The National Board of Health and Welfare in Sweden is under fire for its new guidance on how to treat patients with long-covid or other post-infection syndromes. Critics say these could put patients a...

2/ "The #LongCOVID#POTS#MyalgicEncephalomyelitis#ChronicFatigueSyndrome#MEcfs#CFS#PwME

For anyone interested in the pathophysiology of MECFS there’s a nice infographic here from this article; www.jci.org/articles/vie... LOTS more research needs to be done of course. In clinical practice the vascular dysregulation is something I very much recognise 🧵

I do support the drive to cure #mecfs, obviously. But rn I'd honestly settle for people in the medical professions all understanding: a) that it exists, b) that it is of physiological, not psychological etiology, and c) that even so-called "moderate" mecfs is a serious, life-altering disability.

Solve ME/CFS Initiative: Solve has successfully advocated for new #MECFS#LongCovidow.ly/XvNq50Txuz6

New pre-print from Germany: Effect of Immunoadsorption on clinical presentation and immune alterations in COVID-19–associated ME/CFS www.medrxiv.org/content/10.1...#LongCovid#MEcfs#CFS#PwME