6 years since the first UK lockdown. #LongCovid hasn’t gone away. ONS estimates from 2024 suggest ~2 million people in England & Scotland. Every infection carries a ~1 in 50 chance of developing long Covid that could last anything from four weeks to being effectively permanent.

Gabby Rudge-Cox caught Covid in 2021 and has been diagnosed with #LongCOVID #MECFS #Fibromyalgia and #POTS. Her husband had to give up his job as a policeman after a Covid infection as well ”it has ruined our lives”.

BBC Wales Today. Carer and campaigner Rob Messenger, who has two children with #MECFS in their 30s, says there are no specialists to turn to and describes care for Severe and Very Severe ME in Wales as a ‘desert’.

Tomos is bedbound with Severe #MECFS. His mother says at his worst he looked as if he was “paralysed”, “a dead weight”, unable to open his eyes, talk or move. Clip from BBC Wales Today.

Covid has led to an increase in #MECFS. In Germany, numbers have gone from ~250,000 to over 600,000 since the start of the pandemic. It’s been around for decades, yet many patients still aren’t believed and are given harmful advice by doctors, as one patient reports.

Imagine you couldn’t watch television because the sound and colours were too exhausting or needed help just to eat, wash or go to the toilet. This can be a reality for people with a severe form of #LongCovid and #MECFS. Clip from German TV.

Clip from Radio New Zealand: A former city councillor describes the impact of #LongCOVID. Going from a busy, active life to, at her worst, living on her couch unable to walk, using a commode beside her.

In response to a question from @ZackPolanski.bsky.social on #LongCovid @DrAmirKhanGP.bsky.social says “I feel really helpless when I see them.” People who were healthy just a few years ago, a lot of them have lost their independence & ability to earn and there’s nothing in place to look after them.

BBC Feedback interview with Dr Charles Shepherd, Medical Advisor to the ME Association, discussing Radio 4’s recent Inside Health programme on the Decode ME study (8 mins 30). youtu.be/xgTxQmPjVUU?...

People with #LongCovid, #MECFS and similar conditions don’t get the recognition and funding they deserve — @DrAmirKhanGP.bsky.social Unless decision makers have been personally affected, it’s almost as if they think ‘it won’t happen to me’ — @ZackPolanski.bsky.social

Clip #MECFS 1993: Many believed it was psychological or simply depression, as many still do today. A patient also describes her frustration at appearing well but “paying for it for weeks” afterwards. An early description of post-exertional malaise.

Thinking of everyone on #LongCOVID Awareness Day today. Especially all the children and young people. Awareness days pass, but the reality does not. Solidarity to everyone living with #LongCOVID and their families.​​​​​​​​​​​​​​​​

“It’s been devastating… it’s capsized my life as a mother.” Jane had to give up her 18yr career to care for her child with #LongCovid MP Jo Platt, who has #LongCovid and #MECFS warns we’ve stopped counting cases so don’t even know the extent of the problem. Clip from ITV News.

Very sad to read of this 23-year-old with severe ME, ill since age 4. Authorities are trying to claim that improvement/recovery is possible with the right attitude! ☹️ An example of the problem biopsychosocial models for ME/CFS cause. virology.ws/2026/03/13/t... #MEcfs #PwME #CFS #SevereME

12-yr-old Aveline loved trapeze and sports. Long Covid changed everything. “Within a day my entire life was flipped around… it’s been a constant battle against my own body.” “It’s really isolating. All my friends go to school together and I would give anything to be there.”

Patients with #MECFS in Living Hell (1993) describe their interactions with doctors. “Drug addict” “Alcoholic” “School phobia” “210 doctors told me I was crazy” Patients still report similar experiences today.

The Royal Australian College of GPs double down defending Graded Exercise. Responding to criticism of the 2024 HANDI guidance, they dismissed harm as biased surveys and attempted to discredit the UK NICE guideline. Good summary from @davetuller1.bsky.social #MECFS virology.ws/2026/03/09/t...

TW: assisted suicide 30 min interview with Samuel’s mother and doctor. Samuel developed #MECFS after a Covid infection and chose assisted suicide. Before his death he asked for his story to be used to raise awareness. English Subs (edited with ChatGPT) youtu.be/_w0v7he88Uo?...

#MECFS “is a real hidden illness and it can shrink lives” Fliss and Rob Shepley spoke on BBC Radio Merseyside about their upcoming Land’s End to John O’Groats cycle ride to raise funds for the ME Association. They are taking on the challenge for their daughter, who lives with #MECFS

Tessa Munt MP’s new blog highlights the case for change for people with #MECFS. Numbers have risen with COVID and #MECFS is now thought to cost the UK around £22 billion a year. £50M has been ring-fenced for MND research, so why not ME? www.thereforme.uk/p/the-case-f...

6 years on from Covid, BBC Look North highlights the ongoing impact of #LongCovid. Reporter Cathy Minton says it’s personal, her husband Tom hasn’t improved in a year. He still can’t care for his toddler or go for walks. @franhaddock.bsky.social says new people continue to get long Covid.

Clip from yesterday’s BBC South report about the #MECFS Alliance event on the future of #MECFS and #LongCOVID research. Sam, an ME patient, says the government failing to fund further research after the success of DecodeME is “absolutely disgraceful”.

Congratulations to @sharonhodgsonmp.bsky.social on her new role Minister for Public Health and Prevention. Sharon has been a strong supporter of people with ME/CFS and has spoken in a number of parliamentary debates. Here are some highlights from a debate in 2019.

Dr @binitakane.bsky.social explains how a theory that #MECFS is caused by deconditioning and a fear of exercise permeated medicine and framed the illness as psychological. This led to the patients being neglected, gaslit, and some would say abused. Causing huge trauma for the community.

Clip: Dr @binitakane.bsky.social explains how ME is an energy-limiting illness. The hallmark symptom, Post-Exertional Malaise (PEM), means even normal activities can trigger a worsening of symptoms. Some of her patients have to choose between a shower or preparing a meal that day.

Update: Savannah self-discharged again & has been admitted to Royal Devon & Exeter (4hrs from London) which has a formal Severe ME pathway following the death of Maeve Boothby O’Neill. Pain relief has been increased and care is described as kind and compassionate. www.gofundme.com/f/severemerg...

Clip from BBC Radio Sheffield : @franhaddock.bsky.social calls in to speak to Paulette Edwards about #LongCovid, #MECFS, post-exertional malaise, and why being “deconditioned” is not the cause of her condition. (10 mins) Aired yesterday. youtu.be/uNbKpnxX3jU?...

Clip 3 BBC Politics North: Luke Akehurst MP says it’s “shocking” that #LongCovid services are being closed when ~2 million people live with the condition and about half consider themselves disabled. Covid is “not yesterday’s problem”, it is still causing events to be cancelled.

Clip 2 from BBC Politics North: Dr Margaret O’Hara of Long Covid Support warns the condition is being “swept under the carpet” as clinics in the North East are set to close. Long Covid expert Dr Rae Duncan says Covid is not over and cases of long Covid are rising.

Clip from BBC Politics North: A GP describes how #LongCovid ended her career after she needed a wheelchair within a year of contracting the virus. She says patients are being forgotten by politicians and the NHS as the last dedicated clinic in the area prepares to close.

Intro to a 1993 documentary on #MECFS When medicine doesn’t understand an illness, patients are often mistreated. New discoveries challenge existing beliefs, but in the meantime, for those suffering, life can be a living hell.

TW: Assisted Suicide Clip from German TV. Kim has #MECFS and describes how her illness has progressed, leaving her bedbound and sensitive to light and sound. At 25, she talks about her decision to apply for assisted suicide, saying she can no longer live like this.

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...

Two major European funding awards highlight growing investment in ME/CFS & post-acute infection research. Prof. Simon Carding secured €7.5M EU Horizon funding for DISCOVER-ME, while Prof. Jeroen den Dunnen received a €1.5M Vici grant — the first awarded to PAIS research.

Edited clip from German TV: 14-year-old Philipp developed ME/CFS following a Covid infection. He hasn’t been to school in a year and barely sees his friends. His mother says we have never felt so helpless in our entire lives. #MECFS #LongCovid

NIH Director Jay Bhattacharya says patients with ME/CFS, long COVID, vaccine injury and chronic Lyme are often gaslit and told their symptoms are psychological, making them feel crazy. He’s told NIH staff he wants to invest in finding real answers for these conditions.

Edited Clip from BBC inside science ME/CFS diary: Jo @therealmecfs.bsky.social talks through a week with #MECFS: showering once a week, rationing mental and physical energy, pacing carefully, and experiencing post-exertional malaise if she exceeds her limits.

BBC Inside Health: James Gallagher speaks to Prof Chris Ponting, Prof Rosemary Boyton, and Sir Stephen Holgate about ME/CFS, Long COVID, and recent advances in research, alongside people living with ME/CFS (28 mins) youtu.be/mSga69kqUy4?...

#pwME URGENT - looking for someone ME literate who can sit with Savannah in hospital in London from 4:30pm TODAY for a few hours. Travel will be reimbursed. Please share widely #SaveSavannah #SevereMErgency @tomkindlon.bsky.social @abrokenbattery.bsky.social @drelke.bsky.social

Clip 2 from Austrian TV report about Samuel ME/CFS was largely ignored in Austria until Covid. The hallmark symptom is that exertion can make the illness worse. Many doctors are completely unaware, even though patients have been saying this for decades. #MECFS #LongCovid

TW: Very distressing content Clip from Austrian TV report on Samuel, who developed severe ME/CFS following Covid and chose assisted suicide on his 22nd birthday. Includes a brief interview with him before his death. #MECFS #LongCovid

🧬 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...

Clip 2 (WDR German TV): Dr Astrid Weber from the Long Covid Clinic in Koblenz says ME/CFS cases have exploded since Covid. ME/CFS isn’t new — despite being around for decades, many doctors know little about it. She wants to educate them. It’s a physical, not a mental, illness.

New Open letter to BACME by Edwards, Bull & Crawford. Raises concerns about their ‘Guide to Therapy’: • Speculative “dysregulation” theory • “Active therapy” resembling pacing up/GET • Ignoring NICE NG206 conclusions • Risk of harm & false hope www.s4me.info/threads/an-o...

Clip from a WDR German TV report: Pascal Hilgruber developed ME/CFS following a Covid infection or vaccination. He now spends 80–90% of his day in bed and says being able to go to the toilet on his own feels like an achievement.

Update on Savannah: They are now urgently seeking any UK doctors or hospitals willing to provide TPN and restart cyclizine. If no safe option is found, they are even considering treatment abroad. If you have suggestions, please fill in the form tally.so/r/81KxGO

ME/CFS Delivery Plan 6 months on Empty words and no concrete action Severe ME patients still being failed, Savannah’s case shows the human cost of inaction. Training uptake is feeble. Research is moving mainly through charities, not government. www.thereforme.uk/p/campaign-u...

Clip from the Death Clock Podcast - Dr Leonard Jason explains why healthcare professionals often interpret post-acute infection syndromes as “psychological” — and how patients are traumatised not only by the illness itself, but by people’s reactions to it as well.

TW: Update on Savannah via GoFundMe: Donations have now funded legal action. Sonya Chowdhury (CEO Action for ME) has briefed a solicitor as well as Savannah’s MP. I’ve donated again. Also includes a diary style update of her experience in hospital. www.gofundme.com/f/severemerg...

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