Some NHS GPs are still recommending graded exercise therapy to ME patients. It just happened to me. The guidelines changed in 2021. What can we do about this?

Some good news! We do (🤞) seem to be at a turning point of decent research being funded for #ME See S4ME forum post for more details: 🖇️ tinyurl.com/msbft7e6

Is the OMF’s ME/CFS BioQuest Study the Study We’ve All Been Waiting For? #MECFS www.healthrising.org/blog/2026/02...

Update: Feeling unsafe Savannah self-discharged & left QEH in a private ambulance. Even with the CEO of a national charity advocating in person, Guy’s refused to admit her. After waiting over two hours in the ambulance, she was forced to return to QEH. www.gofundme.com/f/severemerg...

🧬 Phase 1 of whole-genome sequencing for ME and Long Covid is now funded for 2 years - building on DecodeME. It’s the world’s largest study of its kind for any disease, but it’s a £20m project and much more support is needed. I’ve just donated: www.actionforme.org.uk/research-cam...

Update on Savannah’s case in The Times. She has severe ME/CFS, has lost 30kg and eaten nothing since January 18. Sonya Chowdhury, CEO of Action for ME, describes the situation as “appalling” and says she is very worried Savannah could die. archive.ph/J3Xv3

Wrote about what happened immediately after I became bedbound with ME. thepersonalme.substack.com/p/after-the-...

Interesting study & technology. Hopefully it becomes widely available for clinical practice. Blood Flow to the Head in a Person With Myalgic Encephalomyelitis Experiencing Postexertional Malaise: A Case Report journals.lww.com/cptj/abstrac... #MyalgicEncephalomyelitis #PwME #MEcfs #CFS

"After more than a decade of engaging in shameless bothsidesism, whataboutism, and fanatical, greed-driven appeals to far-right eyeballs, America’s corporate, legacy media appears poised to fall victim to the grave, fascist threat it helped bring about" zeteo.com/p/the-maga-f...

I didn't like how I'd get angry quickly, frustrated and anxious, unkind in the things I'd think or say. Turns out, this is very likely a symptom of ME/CFS. Such fun! www.youtube.com/watch?v=Sg5q... #MECFS #pwME #LongCovid #MentalHealth

"Trial By Error: Some Thoughts on Ten Years of Trial By Error" By David Tuller @davetuller1.bsky.social (25 October 2025) virology.ws/2025/10/25/t... #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid

1) Remember the intramural NIH study about effort preference in ME/CFS? Today, a letter from several experts in the field was published in the journal Nature Communications, criticising the conclusions of the original paper.

1) During the Stanford Community Symposium, Dr. Randall Peterson explained how his team at the University of Utah has recreated the Itaconate shunt model of ME/CFS in zebrafish. They found that these fish swim less and have reduced oxygen consumption.

Dr. Fridbjörn Sigurdsson was a medical oncologist before focusing on ME/CFS. During the 2025 Invest in ME conference, he said: "What I have learned is that most of the patients that I have seen with ME are so much sicker than my cancer patients."

Reminder: The DecodeME team want to do a related genetic study with the samples they have collected already but unfortunately don’t have the funding yet: megenetics.org.uk/our-projects... #MEcfs #PwME #CFS

Oxaloacetate for ME/CFS, does it help? I'm hoping it either works brilliantly or not at all because £400 a bottle is insane.

The Norwegian ME Association is raising funds for a clinical trial on Daratumumab as a potential treatment for ME. The study is led by the ME research, Fluge, Mella et al. Target: US$ 2.6m/ Euro 2.2m/ £1.9m. ME-fondet is accepting international donations. tinyurl.com/3h3x9mz6

youtu.be/wuzmYJxM-r0?... 'There are so many regions...it's a brain-wide issue...safe to say the ME/CFS brain is an inflamed brain'

'IgGs from ME/CFS patients carry a chronic protective stress response that promotes mitochondrial adaptation via fragmentation'

Today we honor Severe ME. We hear you. We see you. We care. Today is a day of awareness & visibility for the estimated 25% of people living with Severe ME #SevereME #SevereMEDay2025

Blue pigs? What in the Parable of the Sower? Booktok warned us. www.independent.co.uk/news/world/a...

The #DecodeME study is terrific - a milestone in biomedical science. But headlines like “ME is real” are not good journalism. ME was already scientifically established by the mid-1990s. And clinical evidence has supported its reality since the 1950s. So why do we get these headlines? #pwME 1/3

Key genetic differences involved in the immune and nervous systems have been found in people with chronic fatigue syndrome.

www.decodeme.org.uk/x-marks-the-... 'DecodeME showed that immunological and neurological processes are likely to play a part in ME/CFS' ‘These results are groundbreaking. With DecodeME, we have gone from knowing next to nothing about the causes of ME/CFS, to giving researchers clear targets.’

Unfortunately mHBOT seems to help so I now I have to buy a chamber. Eek! #MECFS

This sounds major. 'SMPDL3B emerges as a key biomarker for ME severity and immune dysregulation, with its activity influenced by hormonal and PI-PLC regulation'

I'm starting HBOT today for ME /CFS and SFN. What are your experiences with it, good or bad? I think I'm already getting my hopes up before it's even started 😬

🎥 Video Update: A Muscle Biopsy Study to Understand the Molecular Mechanisms of #PEM 👉 Watch the interview and learn more about this study: ow.ly/leAU50Wkrk8.

Our deep dive of the biomarker study by Ponting: 1. They clearly state it's a disease with strong female bias. 2. It's strength is that it's a large study that identifies population ave differences. 131,303 contols, 1455 ME cases 1/13 www.embopress.org/doi/full/10....

📢 Now published: www.embopress.org/doi/full/10..... Since the preprint, we replicated 9 of 14 traits in All of Us & showed that #pwME with PEM-like symptoms have stronger biomarker differences. bsky.app/profile/cgat...

Perfectly said.

“there is a reservoir of the HIV in the body, capable of reactivation, that neither the immune system nor drugs can tackle. Now researchers…have demonstrated a way to make the virus visible, paving the way to fully clear it from the body.” 🤯 If pans out, could cure all cancers, Long Covid, HSV too!

Every day a new atrocity in #Gaza. And still the UK supplies lethal weaponry to the Israeli government. There is a term for this: complicity in genocide.

From @meresearchuk.bsky.social A US-based research team has published an abstract of a study investigating the physiological similarities between ME/CFS and long COVID using invasive cardiopulmonary exercise testing (iCPET). Read more - bit.ly/3GJIGNX #LongCovid #MEcfs

Rapamycin did not work and in fact made me feel worse, temporarily. Thinking more and more that my ME involves a persistent infection. Next - Enterovirus testing #MECFS

🎥 The recording of "Investigating Immune Dysfunction & T-Cell Exhaustion via Single Cell Immune Profiling in #MECFS & #LongCOVID," w/panelists from Selin Lab, HiFiBio & patient reps @rivkabluesky.bsky.social & @themegascope.bsky.social, is online now. Watch here: youtu.be/2DQZp48fyek

I have just written to my MP, using some of the template provided and adding my own stuff, asking him to attend the APPG on #ME which is combined with #LongCovid. If anyone has the strength to do the same it would be great. Keep going if you’ve tried before to no avail!

Health Rising: Too Much Exertion Produces Autonomic Nervous System Hit in Long COVID, ME/CFS, and Fibromyalgia All signs point to the fact that too much exertion - disrupts autonomic nervous system (ANS) functioning – in people with long COVID & ME/CFS/FM www.healthrising.org/blog/2025/04...

Had the honor of presenting the initial patient-reported outcomes of the collaborative rapamycin study led by Simmaron at ACP #IM2025 today! Had an amazing time talking with clinicians from all over the country about advancing the knowledge and care of #MECFS

'it is not the protesters who are disrupting order- it is the silence of those who look away'

This guy is in one of the worst prisons in the world with no way out and may spend the rest of his life there because, it appears, he has an autism awareness tattoo in honor of his little brother. www.motherjones.com/politics/202...

#FundThePlan #MECFS

Disability isn't rare. It isn't a niche issue. If you live long enough, it will affect you or someone you love. These cuts aren't just an attack on us-they're a warning to everyone.

Took the plunge and cracked open my first rapamycin. Five hours later feeling no more or less ihatethisfuckingshit than usual🤞🏼#MECFS

Definitely feeling like I’m seeing more research on ME/CFS than ever before. In 2024 there was an average of 56 papers published per month for “chronic fatigue syndrome” [based on PubMed]. In the two months of 2025 so far there have been 143, which is 71.5 per month.

I wonder how many people have ever experienced their brain physically running out of energy making it so they cannot use their mind and have to lie still, unthinking, unfeeling - merely existing in a body.  This I believe is a torture no one but #MECFS patients understand.

From the US: Non-Hospitalized Long COVID Patients Exhibit Reduced Retinal Capillary Perfusion: A Prospective Cohort Study www.mdpi.com/2313-433X/11... Image is from latest Science for ME weekly update #LongCovid #PASC

The case for ramping up ME/CFS research, through both public and private funding, is absolutely compelling 📈 Especially in light of the COVID-19 pandemic, which has significantly worsened this humanitarian crisis happening under our noses A visual thread 🧵

The GET fanatics didn't like a study last year about muscle abnormalities in Long Covid. So they sent in a response full of nonsense, and the authors' cogent responses makes the critics look silly: virology.ws/2025/02/15/t...

What these nihilistic vandals are doing to dismantle science & medicine—generations of expertise & public service & life improving benefits—is cultural revolution level national self harm. No foreign foe could inflict such brutal damage & senseless suffering on US so fast & effectively & unresisted.