“I even had a doctor ask me, ‘What do you need me to tell you to convince you there is nothing wrong with you?’” When an MD specialist in public health is gaslit by her own doctor, what hope is there for anyone else with #longCOVID to get support? #healthcare #disability #chronicillness #maskup

Stellenbosch University researchers propose that viral infections like SARS-CoV-2 can trigger long COVID and ME/CFS by causing long-term endothelial senescence, disrupting blood flow and immunity and leading to chronic, multisystem symptoms. www.nature.com/articles/s41...

#medsky ME/CFS is an umbrella term so it's important to stratify patients. But all Dr's need to understand the danger of exercise in these patient groups. Pushing patients to exercise has led to dire outcomes.

BREAKING: ICE killed a Minnesota woman in broad daylight & there must be accountability. But when I moved to subpoena all records & footage related to this murder, Republicans voted it down. They've never cared about law & order or keeping our communities safe.

How dare a patient research their illness. I wonder if they call Cancer patients that research their illness obsessed? I’m convinced GPs use language that essentially blocks access to some specialists. A bias that prevents investigations in itself.

During Fiona Hill's testimony to Congress on Oct 14, 2019, she described how Trump and Putin discussed exchanging Ukraine for Venezuela. The quid pro quo was if Trump refuses to help Ukraine fight off a Russian invasion, Putin would not help Venezuela (a Russian ally) resist a US takeover.

From Medical University of Plovdiv, a study of 190 people found that patients with ME/CFS and Long COVID had nearly identical immune and inflammatory changes. Both groups showed lower CD8+ T and NK cells, and higher IL-6, TNF, IL-10, and IL-4. www.mdpi.com/2227-9059/13...

Really worth a read. Clear roadmap, helping us to make sense of all the current leads and to what to keep an eye for in 2026. Thank you!

From the US: Uncovering the genetic architecture of ME/CFS: a precision approach reveals impact of rare monogenic variation link.springer.com/article/10.1... Screenshot from latest Science for ME weekly update #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome

Medical codes of diagnoses common in our community that doctors should be using for billing & documentation. Whenever a study is done on prevalence of these diseases using electronic health records, these codes matter. If we aren’t coded, we aren’t counted. #LongCovid #MECFS #POTS #EDS

Health Rising: Something in the Blood” Again! ME/CFS & Long COVID Serum Locks the Muscles Down “..both diseases..the mitochondria in the muscles appeared to be under severe stress…mitochondria in muscle tissues exposed to ME/CFS serum..were eating up oxygen..” www.healthrising.org/blog/2025/12...

There's an audio recording of him, not an aide, asking for votes to swing a state in a Presidential election and that wasn't enough to get him locked up or even keep him from the White House

It’s like déjà vu every time. Why do so many (nearly all) ME patients have to go through this trauma when facing doctors?

"Long COVID is not FND, but some patients are getting diagnosed with it. Here’s what to do if it happens to you" by David Tuller @davetuller1.bsky.social thesicktimes.org/2025/09/26/l... Screenshot from AMMES December 2025 newsletter #LongCovid #MEcfs

Come and join us at Imperial College to work a project looking at mechanisms in Long Covid and ME/CFS We're looking for: A keen, experienced Research Nurse A gifted molecular immunologist with a strong bioinformatics background www.imperial.ac.uk/.../descript.... www.imperial.ac.uk/.../descript....

I’m not often lost for words but…

The fact is no presenter has ever had to leave the BBC for expressing conservative views, or even explicitly endorsing a right-wing party. Was never a problem for Jeremy Clarkson. Was never a problem for Andrew Neil. Was never a problem for Alan Sugar

1) This interesting short paper showed that the immune cells of Long Covid patients had a stronger response to viral mimics than controls. They produced more type I interferon.

🧵 Is it a super flu year? Who knows, but I think the current reporting is stupid. A pissed off thread using data. Firstly - here are today's headlines and some from the last 3 years... spot the difference. 1/10

A Long COVID Autoimmune Subset Coming into View? (and Why ME/CFS May be Next) #longcovid #MECFS www.healthrising.org/blog/2025/11...

Reposting this... really surprised we haven't heard anyone testing it for ME post-covid? [I always have the doubt if it would be possible already to do it, in practice, for #pwME?] ‘They don’t have symptoms’: CAR-T therapies send autoimmune diseases into remission www.nature.com/articles/d41...

I imagine this happens with most disabilities but ME in particular has been so erased by the medical system, the government, insurance companies, the media, so that every single horrific way it devastates our lives can be neatly explained away as our own fault & a personality flaw

Quick warning: The @epiphare.bsky.social study on vax/unvaxed mortality in France is very interesting However, it does not show "covid vax does not increase mortality" as claimed by its president For that, one would need to know the relationship of mortality BEFORE VAX and this is not available

So tell me again how Nigel Farage, who just took the largest ever political donation, from a Tory mega-donor, and another donation from the Viscountess wife of the non-dom owner of the Daily Mail, is planning to "take on the establishment"

A Thailand-based crypto investor has handed a record-breaking £9 million to Reform UK, shortly before Nigel Farage used media interviews to plug his crypto firm and promise lower taxes and deregulation on the industry bylinetimes.com/2025/12/04/c...

Wes Streeting has appointed Simon Wessley to review why mental health diagnoses are rising - a man who spent half his career insisting ME, a post-viral illness, was in patients' heads and caused by 'unhelpful thoughts and behaviours'

Well, I've written a big ol' letter back to UCLH with the following corrections: 1. I have not had COVID & therefore don't have "post-COVID-19 syndrome" 2. I have ME not "chronic fatigue syndrome" 3. I've never knowingly been diagnosed with "anxiety" 🧵

Hey, folks! #MEAction has a 3x match for #GivingTuesday: your gift will TRIPLE if you donate today! We need to be here to keep doing the work most important to our disability community. Donate & share And read the thread to learn more about what we can do together ⬇️ ✨ www.meaction.net/donate ✨

Also, if you're on LinkedIn, please comment and reshare. Comments tend to be what moves posts up people's feeds there. I appreciate any assistance you can provide! Thanks, all <3 www.linkedin.com/posts/jaime-...

👏 Keir Starmer PM: "How Brexit was sold and delivered was wrong. Wild promises were made to the British people and not fulfilled." "The idea that leaving the EU was the answer to all our cares and concerns has clearly been proved wrong."

1) Interesting new hypothesis paper by the team of Ron Davis. They suspect that the recently discovered glymphatic system (the 'lymph nodes' of the brain) plays a role in ME/CFS pathology.

Dr Raymond Perrin been talking about the lymphatic and glymphatic systems and their role in ME/CFS for ages

Day 1072—Why does ME/CFS score so low in quality of life? Because it stunts one's ability to perform daily activities. You can't function. You can't attend functions. Try as you might to carefully pace, PEM crashes are inevitable—and severe. So you remain. Alive but not living; barely even here.

Stanford author team including Ron Davis Glymphatic System Dysregulation as a Key Contributor to Myalgic Encephalomyelitis/Chronic Fatigue Syndrome www.mdpi.com/1422-0067/26... Screenshot from latest Science for ME weekly update #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

We still have no idea how many people are affected by PVS because of stuff like this. Nobody wants to put in writing that the vaccine triggers these conditions. Often they’ll say it in a consultation, and then the notes will say something completely different.

London Autonomic Unit copied me into their consultation letter and it is like we had two separate conversations. Multiple factually incorrect things, including writing i have "post COVID syndrome" and that i had symptoms before my vaccine. What 🧐

As good a time as any to be reminded of this www.theguardian.com/politics/201...

‘They don’t have symptoms’: CAR-T therapies send autoimmune diseases into remission www.nature.com/articles/d41...

We are seeing this replicated many times now 👏👏👏

“i LiKe NiGeL cAuSe He AlWaYs GiVeS a StRaIgHt AnSwEr”

Wow. They're actually sciencing why I feel so crap at last. Its only taken 25 years! To gp that told me "well everyone feels tired and I don't believe in chronic fatigue" ...shove this up your tired arse.

1) Neuroscientist Michael VanElzakker showed some interesting results on brain inflammation in ME/CFS and Long Covid. This was presented at the International Conference in Portugal earlier this week.

Medicine: "We wish patients were more engaged in care." Patient: Comes organized with top 3 symptoms, conditions already ruled out, relevant imaging and testing conducted,... Medicine: "It appears that you are hyperfixated on your symptoms and spend too much time on Google. Dx: psychosomatic." 🙃

New from the Maureen Hanson team in the US Temporal dynamics of the plasma proteomic landscape reveals maladaptation in ME/CFS following exertion www.mcponline.org/article/S153... #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME 1/

Science Alert: “Scientists Trace Lupus to One of The World's Most Common Viruses” ‘Going forward, the findings may even be relevant to other autoimmune conditions linked to EBV, such as multiple sclerosis, long COVID, and myalgic encephalomyelitis…’ www.sciencealert.com/scientists-t...

Delighted that I’ve secured a debate in Parliament on ‘Government support for ME’ next Wednesday 19 November. This provides a valuable opportunity for MPs to share views - the first in years. I hope that many MPs will join me. Do encourage yours! #pwME

Today is my 78th birthday. When I first became ill in 1983, I was 33. I was 38 when I was diagnosed and attended my first support group meeting. Since then, I have worked with many wonderful people in the fight to make ME/CFS respected, funded, researched, understood, treated and, we hope, cured.

Autoimmunity, here we come at last! 👏👏💪💪 I will never understand how medicine decided to bury this exceptionnally fascinating and timely challenge for the sake of saving money, keeping power status, and maintaining a centuries-long abusive psychologising paradigm. #GreatestMEdicalScandal

1) In-depth Canadian study on 78 Long Covid patients with ME/CFS. They compared these to 62 controls who were infected by SARS-CoV-2 but did not develop complications. Too many findings to mention them all, but here are some interesting results...

1995 ‘Myalgic Encephalomyelitis also known as Chronic or Post Viral Fatigue Syndrome [ME/CFS]..can be triggered if the bodies immune system reacts abnormally to a virus, major trauma or medications…They have to learn to pace themselves, avoid general anaesthetics, antibiotics & vaccinations..’