ThisisMEtweeting
@thisismetweety.bsky.social
Apparently I don’t like viruses. #MEcfs as a child; post viral syndrome as an adult; now #LongCovid; #fibro; #hypermobility;
#hEDS #pwME. Kiddo with #LC. #ND. #HealthPolicy research. (Yes I know it’s Skeeting & hashtags don’t work the same. Give me time.)
#hEDS #pwME. Kiddo with #LC. #ND. #HealthPolicy research. (Yes I know it’s Skeeting & hashtags don’t work the same. Give me time.)
Reposted by ThisisMEtweeting
I am proud to endorse this initiative, with thanks to the very many people made unwell by medical neglect of #ME who never give up, no matter how difficult it is to continue.
This fundraiser goes live 7pm BST 29 August 2025. #Justice4ME www.crowdjustice.com/case/justice... 1/2
This fundraiser goes live 7pm BST 29 August 2025. #Justice4ME www.crowdjustice.com/case/justice... 1/2
www.crowdjustice.com
August 29, 2025 at 6:05 PM
I am proud to endorse this initiative, with thanks to the very many people made unwell by medical neglect of #ME who never give up, no matter how difficult it is to continue.
This fundraiser goes live 7pm BST 29 August 2025. #Justice4ME www.crowdjustice.com/case/justice... 1/2
This fundraiser goes live 7pm BST 29 August 2025. #Justice4ME www.crowdjustice.com/case/justice... 1/2
Reposted by ThisisMEtweeting
#pwME #pwLC
I fully support this campaign to fund legal action regarding safer management of patients.
Please donate if you are able to and share widely 🙏
I fully support this campaign to fund legal action regarding safer management of patients.
Please donate if you are able to and share widely 🙏
🔥 Please share - Very important care campaign for anyone with ME #pwME #pwLC ♥️💙🫂
"Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness"
justice4me.uk
"Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness"
justice4me.uk
August 30, 2025 at 7:12 PM
Reposted by ThisisMEtweeting
Please share.
The next generation deserves so much better from the rest of us.
The next generation deserves so much better from the rest of us.
What is the UK COVID-19 Inquiry?
Information aimed at helping children and young people under 12 years understand Module 8.
longcovidkids.org/so/d6PZxN6fZ...
#COVIDInquiry #LongCovidKids #LongCovid
Information aimed at helping children and young people under 12 years understand Module 8.
longcovidkids.org/so/d6PZxN6fZ...
#COVIDInquiry #LongCovidKids #LongCovid
August 30, 2025 at 7:42 PM
Please share.
The next generation deserves so much better from the rest of us.
The next generation deserves so much better from the rest of us.
Reposted by ThisisMEtweeting
I recently saw a person with v. severe ME/CFS write “Am I the only one here who feels at a level of disability so extreme that even the most severe descriptions l've read don't really capture it?”
That is an excellent representation of the double marginalisation faced by the most severe.
(1/2)
That is an excellent representation of the double marginalisation faced by the most severe.
(1/2)
August 20, 2025 at 11:54 AM
I recently saw a person with v. severe ME/CFS write “Am I the only one here who feels at a level of disability so extreme that even the most severe descriptions l've read don't really capture it?”
That is an excellent representation of the double marginalisation faced by the most severe.
(1/2)
That is an excellent representation of the double marginalisation faced by the most severe.
(1/2)
Reposted by ThisisMEtweeting
1) 🩸 New paper by the team of Ronald Davis.
They found that red blood cells from ME/CFS patients are slower and less responsive to low oxygen levels in a lab device that mimics small blood vessels.
They found that red blood cells from ME/CFS patients are slower and less responsive to low oxygen levels in a lab device that mimics small blood vessels.
August 17, 2025 at 5:44 PM
1) 🩸 New paper by the team of Ronald Davis.
They found that red blood cells from ME/CFS patients are slower and less responsive to low oxygen levels in a lab device that mimics small blood vessels.
They found that red blood cells from ME/CFS patients are slower and less responsive to low oxygen levels in a lab device that mimics small blood vessels.
Reposted by ThisisMEtweeting
I think we like the comforting notion that journals know what they're doing.
That there's a natural path we can follow to do science right, and that the "authorities" and "institutions" are following that, and that everything is working fine.
Sorry guys, but that ain't true.
That there's a natural path we can follow to do science right, and that the "authorities" and "institutions" are following that, and that everything is working fine.
Sorry guys, but that ain't true.
August 13, 2025 at 5:40 PM
I think we like the comforting notion that journals know what they're doing.
That there's a natural path we can follow to do science right, and that the "authorities" and "institutions" are following that, and that everything is working fine.
Sorry guys, but that ain't true.
That there's a natural path we can follow to do science right, and that the "authorities" and "institutions" are following that, and that everything is working fine.
Sorry guys, but that ain't true.
Reposted by ThisisMEtweeting
MERUK explores research by Prof Jason's team that found that the way questions are asked in ME/CFS research can influence the responses given by participants, leading to unintentionally reinforcing erroneous assumptions that ME/CFS is psychological in nature.
tinyurl.com/48ra4adw
tinyurl.com/48ra4adw
Leading questions in ME/CFS research
Research by Professor Jason and colleagues has found that the way questions are asked in ME/CFS research can influence the responses given by participants. The team concluded that these altered respon...
tinyurl.com
August 6, 2025 at 11:14 AM
MERUK explores research by Prof Jason's team that found that the way questions are asked in ME/CFS research can influence the responses given by participants, leading to unintentionally reinforcing erroneous assumptions that ME/CFS is psychological in nature.
tinyurl.com/48ra4adw
tinyurl.com/48ra4adw
Reposted by ThisisMEtweeting
My rapid response at BMJ is online now. I joined the chorus of protest about an opinion piece claiming people with severe ME/CFS can recover by "reframing their beliefs" &c. People with ME/CFS deserve so much better than that:
www.bmj.com/content/389/...
#MECFS
www.bmj.com/content/389/...
#MECFS
Patients with severe ME/CFS deserve better than unproven theories
www.bmj.com
July 25, 2025 at 1:03 PM
My rapid response at BMJ is online now. I joined the chorus of protest about an opinion piece claiming people with severe ME/CFS can recover by "reframing their beliefs" &c. People with ME/CFS deserve so much better than that:
www.bmj.com/content/389/...
#MECFS
www.bmj.com/content/389/...
#MECFS
Reposted by ThisisMEtweeting
On the outdated, flawed and harmful 'current' review on exercise in #MECFS. From one of Cochrane's founder members:
"Given the Cochrane Collaboration’s reliance on their exceptional status and members, that is untenable. Not retiring influential out-of-date reviews is a ticking time bomb."
"Given the Cochrane Collaboration’s reliance on their exceptional status and members, that is untenable. Not retiring influential out-of-date reviews is a ticking time bomb."
Six months later: What their response on ME/CFS tells us about the Cochrane Collaboration.
New post at Absolutely Maybe .... 1/2
absolutelymaybe.plos.org/2025/07/31/s...
#MECFS
New post at Absolutely Maybe .... 1/2
absolutelymaybe.plos.org/2025/07/31/s...
#MECFS
Six Months Later: What Their Response on ME/CFS Tells Us About the Cochrane Collaboration - Absolutely Maybe
Six months ago, I wrote a post called “When journal, scientific society, and community values clash.” I recounted the tale of the…
absolutelymaybe.plos.org
August 1, 2025 at 2:56 AM
On the outdated, flawed and harmful 'current' review on exercise in #MECFS. From one of Cochrane's founder members:
"Given the Cochrane Collaboration’s reliance on their exceptional status and members, that is untenable. Not retiring influential out-of-date reviews is a ticking time bomb."
"Given the Cochrane Collaboration’s reliance on their exceptional status and members, that is untenable. Not retiring influential out-of-date reviews is a ticking time bomb."
Reposted by ThisisMEtweeting
Bateman Horne Center is now on Bluesky!👏🏻👏🏻👏🏻 If you haven’t followed them yet, you can do so at @batemanhornecenter.bsky.social
January 10, 2025 at 10:23 PM
Bateman Horne Center is now on Bluesky!👏🏻👏🏻👏🏻 If you haven’t followed them yet, you can do so at @batemanhornecenter.bsky.social
Reposted by ThisisMEtweeting
Living with ME - the photo project from Jeremy Jeffs is here!
wellcomecollection.org/stories/livi...
Here nine people share their ME/CFS story and its impacts.
#JeremyJeffs #MECFS #Photography #pwME
wellcomecollection.org/stories/livi...
Here nine people share their ME/CFS story and its impacts.
#JeremyJeffs #MECFS #Photography #pwME
Living with ME
Nine people with ME reveal their unremitting struggles as they negotiate life with their illness, including their battles to be believed, diagnosed and supported.
wellcomecollection.org
November 28, 2024 at 2:59 PM
Living with ME - the photo project from Jeremy Jeffs is here!
wellcomecollection.org/stories/livi...
Here nine people share their ME/CFS story and its impacts.
#JeremyJeffs #MECFS #Photography #pwME
wellcomecollection.org/stories/livi...
Here nine people share their ME/CFS story and its impacts.
#JeremyJeffs #MECFS #Photography #pwME
Reposted by ThisisMEtweeting
New Video: @georgemonbiot.bsky.social describes the treatment of #MECFS as "The Greatest Medical Scandal of the 21st century". The video explores the impact of ineffective & harmful treatments & how they were defended by the scientific & media establishment.
youtu.be/RiwX9Y0NbiQ?...
youtu.be/RiwX9Y0NbiQ?...
ME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)
YouTube video by Broken Battery
youtu.be
November 21, 2024 at 12:42 PM
New Video: @georgemonbiot.bsky.social describes the treatment of #MECFS as "The Greatest Medical Scandal of the 21st century". The video explores the impact of ineffective & harmful treatments & how they were defended by the scientific & media establishment.
youtu.be/RiwX9Y0NbiQ?...
youtu.be/RiwX9Y0NbiQ?...
Reposted by ThisisMEtweeting
Almost 1,000 (975 as of 08:30 20/11) people have signed this letter in the last 48 hours.
It's been sent to ME Association now but still time to sign until the end of the week (18:00, 25/11/24) as we will send on any more signatures we get.
docs.google.com/document/d/1...
It's been sent to ME Association now but still time to sign until the end of the week (18:00, 25/11/24) as we will send on any more signatures we get.
docs.google.com/document/d/1...
Letter to MEA Nov 2024
If you wish to sign this letter please do so here: https://forms.gle/nzRJ8u37fV5yCJoc9 The original column by Neil Reily was published in the ME associations magazine and is available to read here: ...
docs.google.com
November 20, 2024 at 8:46 AM
Almost 1,000 (975 as of 08:30 20/11) people have signed this letter in the last 48 hours.
It's been sent to ME Association now but still time to sign until the end of the week (18:00, 25/11/24) as we will send on any more signatures we get.
docs.google.com/document/d/1...
It's been sent to ME Association now but still time to sign until the end of the week (18:00, 25/11/24) as we will send on any more signatures we get.
docs.google.com/document/d/1...
Reposted by ThisisMEtweeting
Personally, this has taught me an incredibly important lesson, one that I wish all my fellow health journalists will take to heart, which is:
If there is a divide between what patients are saying, and what the researchers/clinicians are saying, believe the patients.
If there is a divide between what patients are saying, and what the researchers/clinicians are saying, believe the patients.
November 20, 2024 at 5:42 PM
Personally, this has taught me an incredibly important lesson, one that I wish all my fellow health journalists will take to heart, which is:
If there is a divide between what patients are saying, and what the researchers/clinicians are saying, believe the patients.
If there is a divide between what patients are saying, and what the researchers/clinicians are saying, believe the patients.
Reposted by ThisisMEtweeting
These are the patients that disappear, because they get worse under a doctor’s care, or because a doctor becomes hostile when they try and tell them it isn’t working. (ASK ME HOW I KNOW THIS.)
November 20, 2024 at 5:35 PM
These are the patients that disappear, because they get worse under a doctor’s care, or because a doctor becomes hostile when they try and tell them it isn’t working. (ASK ME HOW I KNOW THIS.)
Reposted by ThisisMEtweeting
The biggest of thanks to our friends at @longcovidadvoc.bsky.social for standing with us on this.
People with ME/LC deserve solidarity from our advocates and we’re proud to have them behind our campaign 💙
People with ME/LC deserve solidarity from our advocates and we’re proud to have them behind our campaign 💙
Long Covid Advocacy's response to The ME Association in solidarity with #ThereForME
November 19, 2024 at 6:57 PM
The biggest of thanks to our friends at @longcovidadvoc.bsky.social for standing with us on this.
People with ME/LC deserve solidarity from our advocates and we’re proud to have them behind our campaign 💙
People with ME/LC deserve solidarity from our advocates and we’re proud to have them behind our campaign 💙
Reposted by ThisisMEtweeting
There are a few important lessons in these two studies for those of us who are interested in studying exercise:
1. Patients will always try to do what we ask them to do, even to their overall detriment
2. If we base success on patients simply doing exercise, we will be correct most of the time
…
1. Patients will always try to do what we ask them to do, even to their overall detriment
2. If we base success on patients simply doing exercise, we will be correct most of the time
…
November 16, 2024 at 7:22 AM
There are a few important lessons in these two studies for those of us who are interested in studying exercise:
1. Patients will always try to do what we ask them to do, even to their overall detriment
2. If we base success on patients simply doing exercise, we will be correct most of the time
…
1. Patients will always try to do what we ask them to do, even to their overall detriment
2. If we base success on patients simply doing exercise, we will be correct most of the time
…
Reposted by ThisisMEtweeting
The thing with clinicians working with patients on “pacing” programs is they may turn into “pacing up” if you’re not disciplined about it. It shouldn’t turn into graded activity by another name. A clear understanding and expectation of the program is required for both the patient and the clinician.
November 16, 2024 at 5:28 PM
The thing with clinicians working with patients on “pacing” programs is they may turn into “pacing up” if you’re not disciplined about it. It shouldn’t turn into graded activity by another name. A clear understanding and expectation of the program is required for both the patient and the clinician.
Reposted by ThisisMEtweeting
The entire 6 hours of Polybio Symposium from last week is now up on youtube. Each talk is about 20 minutes so its a real rapid fire of findings and things they are doing next.
#longcovid
www.youtube.com/watch?v=nzwH...
#longcovid
www.youtube.com/watch?v=nzwH...
PolyBio Fall 2024 Symposium
YouTube video by PolyBio Research Foundation
www.youtube.com
November 13, 2024 at 6:14 PM
The entire 6 hours of Polybio Symposium from last week is now up on youtube. Each talk is about 20 minutes so its a real rapid fire of findings and things they are doing next.
#longcovid
www.youtube.com/watch?v=nzwH...
#longcovid
www.youtube.com/watch?v=nzwH...
Reposted by ThisisMEtweeting
Economic burden of Long Covid in the UK estimated to be >$20 billion per year from real cohort data
bmjopen.bmj.com/content/14/1...
bmjopen.bmj.com/content/14/1...
November 14, 2024 at 2:08 AM
Economic burden of Long Covid in the UK estimated to be >$20 billion per year from real cohort data
bmjopen.bmj.com/content/14/1...
bmjopen.bmj.com/content/14/1...
Reposted by ThisisMEtweeting
I need to abandon the metaphor of "you can't pour water from an empty jug". It feels more useful right now to think of my fire smouldering too low for flame. Yes, I'm pretty depleted, but heat persists, the red glow dances, and I know how to tend a spark patiently. Gather kindling and breathe.
October 28, 2024 at 8:20 PM
I need to abandon the metaphor of "you can't pour water from an empty jug". It feels more useful right now to think of my fire smouldering too low for flame. Yes, I'm pretty depleted, but heat persists, the red glow dances, and I know how to tend a spark patiently. Gather kindling and breathe.
Reposted by ThisisMEtweeting
Hey y’all, I think some of you got here this way but in case you’ve not seen it, here’s a starter pack of accounts linked to Long Covid, ME/CFS and related topics, broadly construed. Hope it helps you find some friends!
October 17, 2024 at 7:37 PM
Hey y’all, I think some of you got here this way but in case you’ve not seen it, here’s a starter pack of accounts linked to Long Covid, ME/CFS and related topics, broadly construed. Hope it helps you find some friends!
Reposted by ThisisMEtweeting
Ramy, spend 30 mins scrolling through the "About"
Tab on here, and you should find a good 200 more people you were following over there:
bsky.app/profile/did:...
Tab on here, and you should find a good 200 more people you were following over there:
bsky.app/profile/did:...
November 13, 2024 at 10:41 PM
Ramy, spend 30 mins scrolling through the "About"
Tab on here, and you should find a good 200 more people you were following over there:
bsky.app/profile/did:...
Tab on here, and you should find a good 200 more people you were following over there:
bsky.app/profile/did:...
Reposted by ThisisMEtweeting
OK I'm tentatively excited because researchers might have found a biomarker for hEDS/HSD
It's also a blood test rather than a genetic test. (They looked for pieces of broken down collagen etc in the blood, and found one that is unique to HSD/hEDS)
#NEISvoid
onlinelibrary.wiley.com/doi/full/10....
It's also a blood test rather than a genetic test. (They looked for pieces of broken down collagen etc in the blood, and found one that is unique to HSD/hEDS)
#NEISvoid
onlinelibrary.wiley.com/doi/full/10....
Bridging the Diagnostic Gap for Hypermobile Ehlers‐Danlos Syndrome and Hypermobility Spectrum Disorders: Evidence of a Common Extracellular Matrix Fragmentation Pattern in Patient Plasma as a Potentia...
Diagnosing hypermobile Ehlers-Danlos syndrome (hEDS) and hypermobility spectrum disorders (HSD), common overlapping multisystemic conditions featuring symptomatic joint hypermobility, is challenging ....
onlinelibrary.wiley.com
September 12, 2024 at 12:46 PM
OK I'm tentatively excited because researchers might have found a biomarker for hEDS/HSD
It's also a blood test rather than a genetic test. (They looked for pieces of broken down collagen etc in the blood, and found one that is unique to HSD/hEDS)
#NEISvoid
onlinelibrary.wiley.com/doi/full/10....
It's also a blood test rather than a genetic test. (They looked for pieces of broken down collagen etc in the blood, and found one that is unique to HSD/hEDS)
#NEISvoid
onlinelibrary.wiley.com/doi/full/10....
Reposted by ThisisMEtweeting
On #LongCOVID Awareness Day, the Science Media Centre put out an article arguing to stop calling the disease Long COVID. They also implied that it wasn't very bad to have Long COVID.
Let's replicate a good thread from The Bad Place about the UK's Science Media Centre & their interests.
Let's replicate a good thread from The Bad Place about the UK's Science Media Centre & their interests.
March 15, 2024 at 3:04 PM
On #LongCOVID Awareness Day, the Science Media Centre put out an article arguing to stop calling the disease Long COVID. They also implied that it wasn't very bad to have Long COVID.
Let's replicate a good thread from The Bad Place about the UK's Science Media Centre & their interests.
Let's replicate a good thread from The Bad Place about the UK's Science Media Centre & their interests.