Volunteer needed to help my friend fundraise by making social media posts (videos)!

Sign if you can

Very moving talk by Tom Molmans, MD, a physician living with #LongCovid . Must watch for #MedTwitter . We are doing harm as a profession when we do not educate ourselves & our peers on this disabling condition. #MECFS #UniteToFight2024

My first post detailing how you can help me be free & my Canary article. I don’t have energy for much more. Please read & share.🙏

#MEAwarenessHour
#MEAwarenessMonth
#MillionsMissing #PWME #MECFS #MutualAidRequest #DisabilityTwitter #Abuse #Neglect #DV

buymeacoffee.com/halcionandon/i…

Early morning workout zoomies for emus rodney and del #emus #rodneyanddel #zoomies

EXCL: Families of children with long Covid have been accused of fabricating the illness, reported to social services & in some cases taken to court with the threat of removal to foster care.

My investigation shares three stories - there are many more.

inews.co.uk/news/parents-c…

A mother with cerebral palsy was accused of wanting to make her child disabled like her. Experts warn it is a continuation of something that's been happening for decades with ME - due to the range of complex symptoms & common misdiagnosis as a psychological not physical disease

Struggling today with PEM after watching a few talks yesterday.

My cognitive PEM threshold is so low and I hate it, as it takes away so much on top of the physical limitations. I can’t read, write or think like I should be able to 😪

I know many will be the same, be careful.

More than 1,500 people watched Todd Davenport give a killer presentation at #UnitedToFight , closing with a reminder that we need to better address underrepresented populations and prioritize scientific training for people from historically marginalized backgrounds.

For ME Awareness Week, we asked some of our researchers what they'd like people to know about from their own research. Read more about Jarred's project: meres.uk/younger #pwME #MECFS #MEAwareness #MEAW2024

If you’re able to read this letter please do, and sign it if you agree.

It’s directed at the BACME team leaders and I think it raises some very important issues that, myself, and many in the ME community would like addressed.

Is there a Greek speaking doctor based in Greece who is knowledgeable on Long Covid / ME/CFS & PEM willing to speak to the abusive parents of a person with severe M.E / LC in Greece? Is there a Greek speaking researcher or clinician willing to speak to a Greek doctor? Pls share!

We call on you to please, take action, push for progress, help build a better future for people with #MyalgicEncephalomyelitis

#DontForgetME

Lucy Chappell NIHR Research Prof Kamlesh Khunti NIHR PRC: Leicester NIHR PRC: Bradford UK Research and Innovation

#DontForgetME
Lucy Chappell
NIHR PRC: Bradford
NIHR PRC: Leicester
NIHR Research
John Wright
Melanie
Prof Kamlesh Khunti
Media Research Center
CityOfResearch
UKCRF Network

Whilst Medical Research Council has had a highlight notice in place for ME/CFS since 2003, funding in this area has remained stagnant. Only £8.05m has been spent on ME research over the last 10 years.

#DontForgetME

Lucy Chappell NIHR Research Prof Kamlesh Khunti NIHR PRC: Leicester NIHR PRC: Bradford

#DontForgetME The 25% worst affected with severe ME can experience feeding difficulty necessitating specialist feeding tubes for which there is currently no NHS protocol and limited community support putting them at risk of death. This year alone at least four young women have