BBC Radio Scotland - NHS Highland is launching a new virtual #MECFS support service. Dr Janet Scott explains how it will work, and patient Janice Armstrong shares what it means for those living with ME (Edited from two News bulletins).

Tessa Munt MP highlighted Savannah’s case in Parliament. She said the Government’s ME delivery plan says avoidable deaths should be ‘never events’ but her critical condition was made worse by inadequate treatment and without specialist services cases like this will keep recurring.

Emotional clip from the early 90s. A woman with #MECFS and her mum talk about the impact of the illness on her life and her family. “It totally stops your life. You lose your friends, you lose your social life… I've had to give up my job… You lose everything.”

Powerful clip from Kilroy early 90s. A parent responds to Peter White explaining his approach to #MECFS. “She's seen psychiatrists and again she was told… it's in the mind, go back to college. She went back to college, she collapsed.”

Tim explains how #MECFS is often misunderstood as “just fatigue”, and how pushing through activity can make symptoms permanently worse. He describes his limitations, that activity makes him worse, and how all he can do its rest as there is currently no effective treatment.

BBC Three Counties Radio discusses the Rosetta Stone Study into the links between Long Covid and ME/CFS, featuring Dr Charles Shepherd from the ME Association and a Tim who provides patient perspective (7 mins). youtu.be/TMqxCHPT1ZU?...

CW Edited clip from an ORF report on the death of Samuel by assisted suicide. Highlights that many people don’t know about the illness, there are no effective treatments, there is a lack of care, services, financial aid and support for people with #MECFS in Austria.

Here's my take on some of the debate over Invisible Illness, the new medical anthropology book that has triggered debates and controversy. This post examines the back and forth over the chapter that includes PACE and the history of the creation of the CFS construct. virology.ws/2026/02/01/t...

CW: assisted suicide, severe ME/CFS Sadly, Samuel, 21, died on 30 Jan after living with severe ME/CFS. His doctor warns about the number of patients being failed by the system: “I keep hearing the phrase - I don’t want to live like this anymore” www.heute.at/s/samuels-ar...

A powerful introduction to a parliamentary debate in the Netherlands on post-acute infection syndromes (PAIS), including #LongCOVID, #MECFS, chronic Lyme & post-sepsis conditions. Dutch MP Kostić describes it as one of the biggest medical scandals of recent decades. (29/1/26)

afaik the NICE guideline referred to in Hannah Sharland's article is this one: NG193 nice.org.uk/guidance/ng1... This review in Pain Reports (2021) called it "pernicious": pmc.ncbi.nlm.nih.gov/articles/PMC... #SevereMErgency

Dr. Anne MacIntyre speaks about the importance of early diagnosis of #MECFS so patients can get appropriate rest. She also raises concerns about children being forced into things such as exercise programmes. Clip from Kilroy, early 1990s.

New article on Savannah’s case. Queen Elizabeth Hospital has declined to take up Sonya Chowdhury’s offer to advocate. Savannah remains without nutrition. Fluids restored after pressure, pain meds reduced, and she is still at serious risk. www.thecanary.co/uk/analysis/...

“Is it any wonder that people in this room, people who are watching at home get so angry with GPs who dismiss it, with people who say it's psychiatric… they don’t want to be ill” Nicky Campbell talking about his first wife’s #MECFS on Kilroy in the early 1990s.

Nicky Campbell talking about his first wife’s #MECFS on Kilroy in the early 1990s. There is no treatment, no cure, just coping as best you can, and trying to create a stress free environment. Nothing has changed.

Update shared by Action for ME: their Chief Executive, Sonya Chowdhury, is personally advocating for Savannah and supporting her case.

#MECFS on Kilroy in the early 1990s. The debate asked if #MECFS was psychological. A patient spoke about difficulties being diagnosed and doctors being unaware. Despite now being recognised as not psychological, many patients still face the same issues.

Description from @scienceforme.bsky.social update: Article with additional info to the YouTube video "ME/CFS Scandal Explainer". Both the video & the article provide overview & important details of the psychologisation of ME in the UK & the consequences for the patient group. #MEcfs #PwME #CFS

Severe #MECFS can often feel like your body is a war zone. I can’t imagine living with it and being in a war zone aswell - with bombs falling outside your home. I’ve just donated to help Daryna escape from Ukraine to Germany.

TW: Medical neglect, severe ME/CFS An NHS hospital has withdrawn vital medication from a severe ME patient that enables her to tolerate food and fluids. She is now showing signs of dehydration following the removal of her IV fluids. www.thecanary.co/uk/analysis/...

Dr Diane O'Leary has made an excellent comment on Emily Mendenhall's Substack, revealing she had a similar experience with Wessely. We agree that the world would be a better place if the silenced material could be published.

This was my favorite part 😆 (I was surprised to find myself grinning while reading such a shameful compilation, but this section brought me joy) (thank you @abrokenbattery.bsky.social for compiling all of this!) #MyalgicEncephalomyelitis #pwME #SevereME #MedSky #ChronicIllness #Disability

Can't recommend this article highly enough. Seeing key events listed chronologically clearly shows how much work remains to be done if there is to be justice for #pwME & an end to the relentless corruption. #ME #MEAwareness #MedSky medium.com/@abrokenbatt...

Content warning: assisted dying, severe ME/CFS A 21-year-old man in Austria has shared a post on Reddit describing life with severe ME/CFS and his decision to pursue assisted dying. In the post, he asks for his story to be shared to help raise awareness. www.reddit.com/r/Austria/co...

“Wessely read a version of the writing & threatened to sue me if it didn’t include the other side.” - Mendenhall This raises serious questions about academic pressure, power, and whose voices shape the narrative around ME and Long Covid.

My #MECFS scandal explainer video has just passed 200,000 views. Given the level of interest, I’ve written a follow-up article covering key examples I didn’t include, as well as some developments since. medium.com/@abrokenbatt...

🚨Looking for recommendations for a UK doctor with experience in ME/CFS who may be willing to act as an expert witness in a legal case. Unfortunately, Nigel Speight, William Weir, Claire Taylor, Binita Kane and Dr Bansal are not eligible. DMs open.

A powerful German film about friendship. Tom lives in darkness and isolation with ME/CFS, unable to see his best friend Jonas, who sends him a postcard every week. Also featuring @anilvanderzee.bsky.social. (18 mins) youtu.be/XTWIWqzaG2c?...

“I’ve met people who have had it for 10 years, 25 years. Some are bedridden, some can’t walk across the street. It’s stupid to call it chronic fatigue syndrome. It should be called the forever dead syndrome.” Quote from Keith Jarrett on ME/CFS (more in image)

Edited clips of Keith Jarrett, American jazz pianist and composer, talking about #MECFS, which he developed in 1996. “I couldn’t uncover the piano — it took too much energy… At the time everybody thought it was a psychosomatic thing.”

Over the last five years of working on #LongCOVID “we were to some extent reinventing the wheel and finding things out that people had talked about in ME for years before and felt they hadn't been listened to” Professor Danny Altmann on BBC Inside Science #MECFS

BBC Radio 4 Inside Science interview with Professor @daltmann.bsky.social (8 mins) discussing the Rosetta Stone study, a £1.1m research programme funded by the @meassociation.org.uk to investigate shared immunological pathways between #MECFS and #LongCovid. youtu.be/eu8Lj_R-OtQ?...

Remarkably, Alem Matthees, the Australian patient whose freedom of information request liberated the raw data from the PACE TRIAL, has reported some improvements in his condition: virology.ws/2026/01/02/t...

1) We’ve just published our review of the most interesting ME/CFS studies of 2025. It feels like this year, we’ve made a significant step towards understanding the pathophysiology of ME/CFS. A brief overview of the studies that caught our eye.

Edited clip from ITV News about #MECFS (thought to be 2013). Michelle is severely affected, largely bed-bound, with light and sound sensitivity. Her mum says: “Healthcare is horrendous and social services haven’t got a clue… they don’t know how to help.”

Christmas can be a difficult time for people with chronic illness. Thinking of everyone with severe #MECFS and #LongCovid, particularly those who are living alone or isolated in darkened rooms.

1) Moving paper by young ME/CFS researcher Katherine Cheston. She was aware of the great disability it causes but "encountering the reality of this suffering first-hand was still shocking and deeply saddening." She gives examples of patients who do not get appropriate care.

Short German TV report on children in Hamburg with ME/CFS following Covid. Families say hospital services believe it has a psychological component, and the lack of diagnosis has resulted in child welfare reports when children are unable to attend school.

Sioned Williams in Welsh Parliament talking about severe and very severe ME/CFS. It can be “as disabling as late-stage MS or advanced cancer but doesn't get a fraction of the acknowledgement, understanding or funding”.

Rhys ab Owen MS shares the story of a woman with #MECFS who spent decades housebound & bedbound. Her mother describes >30 years of neglect, abuse & being ignored because professionals would not set aside their beliefs, e.g. a child protection referral that caused years of stress.

Highlights - Mark Isherwood MS shares the story of a constituent whose life was transformed by a virus, becoming severely affected and housebound with #MECFS. It has “stripped away their independence and hope”, yet support, research and funding in Wales remain minimal.

Highlights — Adam Price warns that the failures in Maeve Boothby O’Neill’s case could happen in Wales, and asks the Cabinet Secretary to respond to the Prevention of Future Deaths Report and implement lessons learned from the Devon Trust into an all-Wales protocol.

Adam Price MS opens the Welsh Parliament debate on severe and very severe ME/CFS. We never see thousands of people in Wales because “they must live in darkness, behind blackout blinds, away from noise, unable to bear light, sound or even touch.”

The Welsh Parliament debate on ME/CFS is now on YouTube. Adam Price MS led the debate, calling for better care, recognition, and support across Wales youtu.be/akICL-DXfp8?... Link the motion record.senedd.wales/Motion/8884

1) Iwasaki's group has published a historical review of post-infectious syndromes. Infections are traditionally viewed as having two outcomes: you either die or fully recover. But there are reports of post-acute sequelae after multiple infections, not just after COVID-19...

The ME Association is investing £1.1m in the largest charity-funded biomedical study in ME/CFS. Imperial College London, co-led by Professor Danny Altmann, will compare immune and metabolic pathways in ME/CFS and Long Covid to uncover shared mechanisms. meassociation.org.uk/2025/12/driv...

Apologies are extremely rare in the world of ME/CFS, so it’s encouraging to see such a good example of someone acknowledging a mistake, taking responsibility and implementing a solution. This is how you write an apology. I’d like to see more of this, please.

Video clip of Natasha Devon raising concerns about Simon Wessely being involved in the government’s ADHD review. She says it feels like a foregone conclusion because Wessely has already made comments about young people “overdiagnosing” their own mental health.

John Rutter’s response to Rod Liddle, in a letter in The Spectator “Sorry to spoil a good polemic with facts that don’t fit” ME is a physical illness. It began with chickenpox, followed by cycles of relapse, sensitivity to light and sound. I had it for seven years.

Clip from BBC Composer of the Week: John Rutter speaks about composing his Requiem while battling #MECFS after chickenpox. It “disturbed my physical energy, my mental acuity and my whole mood.”