#MillionsMissing Sweden

#MillionsMissing is a global campaign for ME health equality! #MECFS #pwME

[#MillionsMissing Sweden @MMissingSweden]

12 maj är internationella ME-dagen!

Myalgisk encefalomyelit (ME/CFS) är en funktionsnedsättande multisystemsjukdom med avvikelser i nervsystem, immunförsvar, hormonsystem och energimetabolismen.

#MillionsMissing #svmed #pwME #MEcfs @MEActNet #worldMEday

https://t.co/PLr96EYxXl

[The ME Inquiry Report @meinquiryreport]

Jag pausar marknadsföring av mina texter på sociala medier. Däremot kommer jag inte sluta skriva och publicera på bloggen.

Läs mer på om varför jag väljer att göra så här, och hur du kan göra för att inte missa texter framöver.

https://t.co/LLkz2xH1oW

[Sten Helmfrid 🇺🇦 🇬🇱 @StenHelmfrid]

People should know about ME/CFS, just as MS, Parkinson’s, and diabetes are common knowledge. When ME patients disclose their illness, they are often met with comments such as “I’m also tired”. Patients shouldn’t have to face such ignorance—it’s a severe illness. #MEAwarenessHour

[Wilhelmina Jenkins @minadjenkins]

I am 75 years old today. I was 33 when I became sick with #MECFS. I was diagnosed 5 years later after steadily declining and becoming unable to work. I have never had a remission. The past 3 years have been the worst. But I found community in 1988 and I am still here.

[Sten Helmfrid 🇺🇦 🇬🇱 @StenHelmfrid]

Comment in a Guardian column by author, journalist, and activist George Monbiot, about scientists who are promoting a biopsychosocial approach to #MECFS and who have closed ranks to defend flawed science.

[The ME Inquiry Report @meinquiryreport]

Idag djupdyker jag i SBU:s kunskapssammanställning om postinfektiösa sjukdomar - eller kanske ännu mer i vad som saknas i den.

Till podden:
https://t.co/B1otApSC8j

På bloggen finns manus och källor:
https://t.co/13lzoc7PXG

[Adam @ABrokenBattery]

#ThereForMe campaign gets national TV coverage.

Highlights from today's BBC Breakfast. Features previous segment of Dr Becky Williams and the letter signed by over 200 other healthcare workers calling on the government to provide better support. #MECFS #LongCovid

[Open Medicine Foundation @OpenMedF]

We are excited to share that OMF’s Life Improvement Trial (LIFT) has officially launched. Recruitment and screening began in August and the first participants have now been enrolled.

Learn more 👉 https://t.co/29SSDI7PfO.

[The ME Inquiry Report @meinquiryreport]

Idag tar jag mig an myten om den arga ME-patienten och följer upp med aktuella exempel från Stressforskningspodden.

Till podden:
https://t.co/1Yoe4oWtLp

På bloggen finns manus och källor:
https://t.co/lbIlQvMt8O

#mecfs #postcovid #vårdpol #svmed

[The ME Inquiry Report @meinquiryreport]

Första avsnittet av Marans andra säsong är här! Det handlar om hur dålig forskning spelat en stor roll för att vi behandlas så illa av vården.

Till podden: https://t.co/sIVTX0mAWF

Till bloggen där du hittar manus och källor:
https://t.co/i90HxSL5WU

#svmed #vårdpol

[World ME Alliance @WorldMEAlliance]

Today, #SevereMEDay 8th August, we highlight the mistreatment of people with #SevereME in hospitals across the globe.

Read their testimony now: https://t.co/aPyxgOqFWU

#MyalgicEncephalomyelitis #MECFS #EMSFC

[Sten Helmfrid 🇺🇦 🇬🇱 @StenHelmfrid]

#MECFS is classified as mild, moderate, severe, or very severe, but don’t be fooled by the terminology. Mild #MECFS is also debilitating. Even if those affected often can work part time, their lives are restricted and the burden of symptoms difficult to bear. #MEAwarenessHour

[The ME Inquiry Report @meinquiryreport]

Just nu pågår en utfrågning kring en mycket svårt ME-sjuks död, som en del av en rättsläkares utredning. Maeve svalt ihjäl pga vårdens haveri. Idag är dag 3 och det pågår i två veckor. En rekommendation är att följa taggen #MaeveInquest

#vårdpol #svmed #mecfs

[Rose Mary X @Rose_Mary_X]

Dear #MedTwitter The reason ME patients are so irritatingly well-informed is because you are so dangerously uninformed. It’s not because we have an anxiety disorder. Although, wouldn’t you be anxious about receiving medical care if you were us? #MaeveInquest

[Dianna Cowern @thephysicsgirl]

Live-streaming now!

https://t.co/16dHSVlPtO

[Open Medicine Foundation @OpenMedF]

Today’s Livestream Schedule. Watch here: https://t.co/uURhi5xvua

[Dr. Markus Fraczek @MarekSJF]

A reminder of Dianna's livestream today from 6:45am-6pm Pacific Time (or Today/Saturday 15:45 to Sunday 03:00 Central European Summer Time) on YouTube: https://t.co/ilmfFidpZo

[The ME Inquiry Report @meinquiryreport]

Meningen om KBT och GET i vårdprogrammet för Myalgisk Encefalomyelit (ME) på https://t.co/3ibeyDSdVu är sedan igår eftermiddag borttagen. Det är bra men tyvärr verkar resten av de problematiska förändringarna kvarstå.

https://t.co/ATMP6CGo2F

[The ME Inquiry Report @meinquiryreport]

Region Stockholm uppdaterar vårdprogram för ME med ovetenskapliga påståenden om KBT och gradvis utökad aktivitet

#vårdpol #svmed #mecfs

https://t.co/eU8j16x8HR

[Dianna Cowern @thephysicsgirl]

We are live-streaming a full day of Dianna’s life, sharing what it’s like for someone suffering from severe MECFS.

We will also be raising money for @OpenMedF to support research and clinical trials for #LongCovid and #MECFS

Time: Saturday, July 6th 2024, from 6:45 AM to 6:00 PM Pacific Time

The live stream will consists of:
- Live feed of Dianna all day
- Round table discussions with other YouTubers
- Q&A with the audience
- Interviews with experts in long Covid

[Dianna Cowern @thephysicsgirl]

Dianna decided to shave her head to make it easier on herself for her journey with #LongCovid and #MECFS. Many people struggling with this disease choose to do this if bed-bound for extended periods of time, like Dianna has been.
Hopefully she can avoid crashes, and reduce the amount of energy it takes to wash and maintain her hair every week. Millions of people are suffering from this disease.
-Kyle (Dianna’s husband)