Amanda R

Advocating for research into New Daily Persistent Headache (NDPH), ME/CFS, hEDS and CCI/AAI.

[George Monbiot @GeorgeMonbiot]

One more thing. The majority of ME/CFS sufferers are women. Inevitably, this means:
a. the illness receives less attention
b. sufferers are likely to be dismissed or ignored
c. doctors are more inclined to believe the causes are psychological
Misogyny still runs deep in medicine

[George Monbiot @GeorgeMonbiot]

This story is one of the most disturbing I've ever covered. It's about how the views of a deeply weird ideological sect affected science, medicine and the media, with devastating impacts on patients. Please read and pass on. This horror has to stop. https://t.co/qVjkbiGQY3

[Janet Dafoe @JanetDafoe]

I have hundreds of friends in the UK that I try my best to support. My first recommendation is always to try to get Dr. Willy Weir. He is one of only two or three doctors in England who really understand the disease and support patients. 1/

[Christy Collins 🕊️ @sun_in_winter12]

Researchers found viral RNA in “the connective tissue where immune cells are located” up to 2 years post-acute infection.

Could this have anything to do with the relationship between joint hypermobility and #longcovid?

WHAT is causing our immune systems not to clear the virus?

[Jessica Taylor-Bearman @jayletay]

Today we need to stand (or sit or lay down in my case) in solidarity with Millie, who is in hospital with very severe M.E.. She is being kept against her will, her M.E. deteriorating every day. Hospitals aren't equipped to deal with severe M.E. #BringMillieHome #DontLetMEDie

[Adam @ABrokenBattery]

Sophia Mirza was wrongfully sectioned in 2003 because doctors didn't understand #MECFS. This caused a deterioration which ultimately led to her death. 20yrs later and it happened to Millie. It has been lifted but Millie continues to be mistreated.

#BringMillieHome #DontLetMEDie

[Frances Ryan @DrFrancesRyan]

A hugely important piece by @iEllieFry on Millie McAinsh - a teenager with severe ME who is currently in hospital and deteriorating due to medical neglect. I cannot imagine a patient with any other condition being treated this way. https://t.co/w2AMLr8O9L

[Christoph Ströck @cstroeckw]

How many #MECFS , #LongCovid, post-infectious disease patients, and their respective loved ones are active on Twitter? It would be great to get a rough estimate of how many folks we can mobilize. Please like and RT. Let's see if this works.

[George Monbiot @GeorgeMonbiot]

I know or am in touch with quite a few patients with ME/CFS. One thing they all have in common? They desperately want to get better. The long-discredited but endlessly repeated claim that their attitudes make them ill adds insult to injury.

[George Monbiot @GeorgeMonbiot]

It’s the greatest medical scandal of the 21st Century. Intransigent doctors and gullible journalists have made the lives of ME/CFS patients a living hell.
A massive and shocking story in this week’s column.
https://t.co/apoW7uFGJS

[George Monbiot @GeorgeMonbiot]

It's heartbreaking and devastating to hear the testimonies on this platform today of so many ME/CFS patients who have been disbelieved, abused and mistreated for years and years.
A great injustice has been done. To put any part of it right, first it must be acknowledged.
#pwME

[Channel 4 News @Channel4News]

‘There’s a culture and attitude that M.E. doesn’t exist’, says father whose daughter died with the disease

https://t.co/9U9zdcIs2p

[🕸️Dr.T, PhD @chydorina]

If you have #mecfs #LongCovid you should rule out or in hypermobility, #EDS and connective tissue issues.

These conditions are prevalent #mecfs either from birth (hereditary) or secondarily, such as being triggered by a virus that affects connective tissue. @remissionbiome

[Amanda R @AmandaR_11]

@chydorina @remissionbiome Post-infection connective tissue disease and potential sequela eg craniocervical instability

[Bea is Chronically Persisting✨ @Be_Kinderr]

I think a lot about whether & how immune responses to infection including inflammation & MCAS may be contributing to spinal conditions in these illnesses, joint issues, & CTDs.Much to study!🧵on a study finding elevated inflammatory cells (+mast cells) in hEDS spinal cord filum👇

[Kristin Urquiza @kdurquiza.bsky.social @kdurquiza]

If you're still practicing Covid precautions, comment/RT, so I can make sure I'm following YOU.

You are not alone, your actions matter, & you've got a home with the @MarkedByCovid community.

#COVIDisAirborne #CovidIsNotOver #MarkedByCOVID

[PolyBio @polybioRF]

We are very excited to annouce that thanks to the generous support of 3 private donors, we are able to begin our CCI and Structural 7-Tesla Imaging Project in patients w/ complex chronic illness (#ME/CFS, #LongCovid, #EDS etc)

[Amanda R @AmandaR_11]

@BinitaKane Perhaps connective tissue damage is immune mediated? Eg CCL5 (RANTES) is elevated in many long haulers and pwME and has been shown to have an effect on tissue degrading enzymes MMP-1 and MMP-13 expression https://t.co/PCDhU7gd9u.