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.”

Highlights from Natasha Devon on LBC yesterday, where she discussed the government’s ADHD review and mentioned concerns about vice-chair Sir Simon Wessely, because of his controversial comments on young people “overdiagnosing” their mental health.

1) 🧬 New results from the LOCOME project. It applied the combinatorial analytics of PrecisionLife on data from DecodeME. The 259 genes that were most associated with ME/CFS pointed to "neurological dysregulation, inflammation, cellular stress responses, and calcium signaling"

Clip from a German RTL news mini doc (auto-dubbed by YouTube). Jonas explains he has to spend a lot of time lying down and is often told it’s “psychosomatic”. Yet Germany reports ~650k ME/CFS patients with no approved treatments and almost no medical expertise.

It seems so silly but it’s really uplifting to see a celebrity fundraise and advocate for #MECFS Mark Bonnar posted this 2 days ago. He’s still fundraising for @actionforme.bsky.social as part of the Big Give Christmas Challenge. I’ll link the video below

Clip from The Nightmare Neighbour Next Door (S2E3), where Laurel Wingfield who has #MECFS talks about her life before, how she struggles now and how gardening has been a focus.

TW: Euthanasia Clip from a NOS news report about Marjon Lindeboom who became severely ill with long COVID. Includes powerful interview with her daughter Kirsten talking about her mother’s isolation, deterioration and the fight to be seen and believed.

Clip from an NOS news report about the PAIS protest in The Hague. Wheelchairs symbolised those too ill to attend. Patients with post-infectious illnesses: long COVID, ME/CFS, Lyme, Q-fever and sepsis are calling for proper research and treatment.

Some photos from the #PAISProtest now happening at the Malieveld in The Hague. Looks like a nice crowd has gathered.

Thinking of everyone taking part in the PAIS-protest in the Netherlands today. People with ME and Long Covid deserve to be believed, to receive safe care, proper biomedical treatment, and an end to years of neglect and scandal. More info: www.hetpaisprotest.nl

Clip from The Conditional Release Program podcast, with Jack the Insider (Peter Hoysted) Simon Wessely was Nominated for the Bent Spoon Award (the annual prize for pseudoscience at SkeptiCon). Wessely wasn’t eligible though because he’s not Australian.

Clip from a 2011 news segment about 22-year-old Ben DePasquale, who became severely ill with #MECFS at 18. Doctors thought he maybe depressed and suggested exercise which only made him worse. “He is sick of the medical community seemingly not paying attention.”

I'll just leave this here... (an interaction over at the other place) #Camelford

Poison Water - a documentary about the Camelford water poisoning incident is on BBC2 right now. www.bbc.co.uk/programmes/m...

Following the BBC documentary Poisoned Water, I’ve put together a quick thread about the Camelford water poisoning and Simon Wessely. The thread is on a summary website for anyone who isn’t on Twitter and includes clips and references. twitter-thread.com/t/1994370580...

Clip: BBC Look North 10-year-old Asa has been named Young Person of the Year by SENSE. Asa supports his mum with daily tasks at home after they became disabled with ME/CFS after Covid-19.

Highlights from a 2006 BBC Inside Out segment about 20 yr old Claire Wade, bedbound with severe ME. She fell ill at 10 and lost her entire teenage years to the illness. She spent the last 6 yrs confined to bed, with only letters & emails to connect her to the outside world.

Segment from WELT (German TV) featuring Federal Research Minister Dorothee Bär discussing Germany’s National Decade Against Post-Infectious Diseases - €500 million for research including #MECFS and #LongCOVID. (English Subtitles - 3 mins) youtu.be/f84TAp3D_Ng?...

Clip: @oonaghcousins.bsky.social explains how post-exertional malaise has affected her. It’s not tiredness after exercise, simple tasks like preparing food or even talking would cause her whole body would go into shutdown, affecting her nervous, immune, digestive systems and more.

Former Team GB rower and #longCOVID campaigner @oonaghcousins.bsky.social spoke to Sky News in response to the COVID Inquiry. She highlighted how long-term illness was foreseeable and why a proper national strategy is urgently needed. Aired on 20/11/25 (5 mins). youtu.be/-qZHg9PsE4c?...

Clip: Julie Heath shares the impact of becoming a carer for her husband and two children with #MECFS, and how she’s become their advocate because they don’t have the energy to do things like speak to their GP. ME/CFS doesn’t just affect individuals it affects whole families.

BBC Radio Somerset (12 mins) Charlie Taylor speaks to Julie and John Heath about their family, where three out of four members have been diagnosed with #MECFS — they discuss how the condition affects daily life and the profound impact on their family. youtu.be/t-eIzxqmNWY?...

New from the The Sick Times Less than 20% of Long COVID trials involving exercise even mention post-exertional malaise ‘Testing exercise is “money down the drain” and won’t advance understanding of Long COVID, experts say’ thesicktimes.org/2025/11/21/l...

BBC Points West ran a very short 20-second clip on yesterday’s Westminster debate. Local MP Tessa Munt called for greater NHS support and investment for people with #MECFS. Unfortunately the segment used “extreme tiredness” to describe the main symptom.

Alison Hume MP shares an account of severe #MECFS and warns that many healthcare professionals lack understanding of severe ME — especially its hallmark symptom, post, exertional malaise PEM — and that patients are too often pushed into pathways that simply aren’t appropriate.

Highlights — JoPlattMP.bsky.social MP developed #MECFS after #LongCOVID and says these are among the most devastating yet neglected illnesses of our time. She calls for research to match Germany’s €500m pledge & for a severe ME service, with patients dying from nutritional failure.

Tessa Munt MP calls for urgent action to accelerate #MECFS research. The UK has spent just £10 million over 12 years — about 60p per patient/year. Four times more went on a helicopter for a former PM, 12 times more on a bat tunnel for HS2. Why isn’t ME a strategic research priority?

Tessa Munt MP warns that two preventable death reports in just over a year highlight the dangers facing people with severe #MECFS. She spoke to @BinitaKane.bsky.social, who described a 25yr old student and multiple missed opportunities to stop her decline. This is not an isolated case.

Tessa Munt MP: “ME is perhaps the only condition where the sicker you become, the less care you receive from the NHS.” NHS care for severe ME is nonexistent, over 200 healthcare workers were so concerned they wrote to the Health Secretary 14 months ago but received no response.

Tessa Munt MP highlights how Germany is taking post-infectious diseases seriously, committing €500m over 10 years to research #MECFS & #LongCOVID. She asks if the UK Government will make a comparable commitment, or wait a decade for the Germans’ conclusions before taking action?

Tessa Munt MP highlights the economic impact of ME: based on a 2014–15 estimate, adjusted for inflation and increased case numbers, ME is estimated to cost the UK around £7 billion a year — rising to ~£20 billion including people who meet the criteria for ME with long COVID

Clip - Tessa Munt MP opens the #MECFS debate, noting ~400,000 have ME in the UK, & the total could be much higher including people with with long COVID. She highlights decades of substandard, sometimes harmful care, pitiful funding, and the outdated view of ME as psychiatric.

Today’s Westminster Hall debate on government support for people with #MECFS is now on YouTube. Led by Tessa Munt MP (Wells and Mendip Hills, Liberal Democrat), and lasts around an hour. youtu.be/wZFEUnjWgOA?...

Just a note to say: if you hear anything about #MECFS or #PEM and related on radio or TV, let me know and I’ll do my best to record it. I missed the Celebrity Catchphrase clip and don’t want to miss any more. And if you have any old clips on VHS, I’ll try and get them digitised.

Mark Bonnar was also recently on Celebrity Traitors, supporting Action for ME — although unfortunately he didn’t win.

Clip from January 2022, @mark_bonnar appeared on Celebrity Catchphrase supporting @actionforme. He explained that he backs the charity because #MECFS is very misunderstood, very underfunded and affects several people he knows personally.

Germany pledges €500 million for research through the “National Decade Against Post-Infectious Diseases” (2026-2036), including #MECFS and #LongCOVID. Addressing what they call “one of the greatest public health challenges of the 21st century.” www.zeit.de/politik/deut...

🚨 NEXT WEDNESDAY 19 NOVEMBER We’ve been made aware of an upcoming Westminster Hall debate, tabled by @tessamunt.bsky.social, focused on government support for people with ME. If you have the energy - an email to your MP asking them to attend can go a long way 🙏 Template in next post👇