MSP Helen McDade asked the Scottish Parliament for specialist clinics in every NHS board area for #MECFS & #LongCovid. There are 100,000 people in Scotland with these conditions but Government funding for specialist support is only £40 per person.

“ME isn’t just a matter of policy documents, clinical pathways or departmental responsibilities. ME is about lives changed beyond recognition.” Baroness Scott during the House of Lords debate on severe #MECFS, speaking about the impact, seriousness and scale of the disease.

“At this point we’ve spent €36,000 on care.” Mia’s mother and sister on the cost of severe #MECFS, the absence of approved treatments, the lack of research, and how patient demos give them hope that something will be done.

“Only 10.8% of people with severe or very severe ME feel supported by the NHS.” Baroness Walmsley, during a House of Lords debate also mentions a patient being offered a multivitamin and talking therapy despite being unable to tolerate sound.

“These [Prevention of Future Deaths] reports make it clear that it’s not just a question of future improvement but a question of patient safety now. More deaths from ME must be prevented.” Baroness Scott of Needham opening the House of Lords debate on Severe #MECFS

“I’m ashamed to say that my very first reaction to that diagnosis was, oh my God, I don’t want her to have that because that was a label, a stigma that you are taught in medicine.” @binitakane.bsky.social speaking about her daughter’s diagnosis of #MECFS following Covid.

1) This review found that people with ME/CFS are profoundly impacted by stigmatisation and that it also affects their social circles, such as friends and family. The most frequently identified issue was stigmatising experiences by healthcare professionals and physicians.

“I didn’t know how to be around her without making it worse” Mia’s sister speaks about the challenges of living with someone with severe #MECFS. Mia developed #MECFS after a Covid infection and had to move back in with her family.

“I was unable to leave the house for two years because I simply wasn’t strong enough to walk to the car.” Laura Hillenbrand author of Seabiscuit and Unbroken speaking about living with #MECFS in 2014.

“We don’t know how to cure many conditions, but that doesn’t mean that this condition [ME/CFS] doesn’t exist… we don’t know how to treat probably 90% of neurological conditions.” Dr Tarek Gaber, interview at the #MECFS Clinic in Wigan (2024).

Clip from Irish TV. Jackie talks about living with #MECFS and how moving from Dublin has helped make her life easier.

Clip from German TV. A #LongCovid patient is screened for Post-Exertional Malaise. Clinicians conclude she does not “deteriorate dramatically after very little physical exertion” and recommend a Post-Covid rehabilitation programme.

Very brief mention of the ear seeds controversy during a discussion about Stephen Bartlett on The Rest Is Entertainment. This relates to Stephen Bartlett’s investment in an ear seeds business whose founder claimed they aided her recovery from ME/CFS.

“ME can be invisible, it can be unpredictable, and it can be isolating. So we should do our best as public and professionals to support those people as much as we can.” Dr Ranj on how to help people with ME/CFS Clip from BBC Morning Live.

My first post about that Wired piece: virology.ws/2026/06/09/t...

“Twenty years on, I came back to campaigning for sufferers of ME only to find that almost nothing had changed.” MSP Helen McDade speaking about #MECFS in the NHS debate in Scottish Parliament.

Dr Ranj explains the four symptoms required for a diagnosis of ME/CFS: debilitating fatigue, post-exertional malaise (PEM), sleep disturbance and cognitive difficulties. If you’ve had these symptoms for over three months, speak to your GP. Clip from BBC Morning Live.

“If I went to an appointment and came away without one of us being in tears or absolutely furious, that was not too bad.” MSP Helen McDade speaking about her family’s experience of #MECFS in the Scottish Parliament.

“Perhaps the most damaging experience of all though is not simply the illness itself. It is not being believed.” MSP Morven-May MacCallum speaking about her experience of Lyme disease and other chronic illnesses, including #MECFS, in the Scottish Parliament.

“ME? What’s that? Aren’t you just tired?” Helen describes one of the most challenging aspects of living with #MECFS - how it is viewed by healthcare professionals and the responses she has received. Highlights from BBC Radio Gloucestershire’s segment on ME/CFS.

The Wired article features several personal recovery stories from people who say brain retraining helped them. But I couldn’t find any comparable personal accounts from people who say these programmes didn’t work, or made them worse. Here is one from a German TV documentary.

Highlights from recent German TV that looked at brain retraining for #MECFS. A doctor with #MECFS says the programme made her feel she just had to keep trying harder. She eventually suffered a severe crash. She is “angry” and says that these programmes are endangering people.

tbf to them, the BBC have tried to address the complaints, and have produced this document: www.bbc.co.uk/articles/c3d... But the problem remains that NHS are *still* using CFS in their online information, and still highlighting "fatigue" above everything else. What's a TV doctor to do? 🤷

“People with ME have sadly had to endure far too much disbelief and delay.” Clip of Dr Hans Kluge, WHO Regional Director for Europe, opening the @investinmeresearch.bsky.social 2026 International ME Conference #IIMEC18.

Highlights from BBC Radio Gloucester. Helen Stout, who has lived with ME since 2020, and Clare Ogden from @actionforme.bsky.social say the UK government’s £4.75m research investment is welcome, but a ‘drop in the ocean’.

“Chronic fatigue is not the only symptom. It is one symptom amongst so many others.” Dr Ranj explains what ME/CFS is, why the term Chronic Fatigue Syndrome does not reflect the reality of the illness, and why many patients prefer the term ME.

BBC Morning Live addresses complaints after Dr Oscar Duke said that Chronic Fatigue Syndrome was “probably the best way to describe” the illness. Feedback from viewers outlines how it trivialises the illness, is just one symptom, and it does not reflect the reality of #MECFS.

#MECFS is a “medical” and a “social catastrophe.” — Jörg Heydecke, founder of Germany’s ME/CFS Research Foundation. One patient waited 19 years for a diagnosis. Another said she was told her symptoms were psychological and that she needed to get on with it.

Post exertional malaise (PEM) is the hallmark symptom of #MECFS It’s not fatigue following activity. It is a dramatic deterioration and worsening of symptoms. Short video explainer - triggers, symptoms, and management. Repost for the last day of #MEAwarenessMonth

“I don’t think I can think of another condition that would be treated this way.” Dr Anna Brooks, Liggins Institute. A powerful opening to Zoe Madden-Smith’s award-winning RE:News documentary on #MECFS

“Having ME is not a choice.” A 37-year-old woman with severe #MECFS says the disability assessment process in Switzerland is “simply dangerous and unsuitable for people like us”. Clip from Swiss TV on severe #MECFS.

The CDC made a public awareness ad about #MECFS in 2007. I’m not aware of a similar public health campaign since, despite increasing numbers linked to long Covid and the lack of awareness that exercise can make people worse.

“This is not a life, it is miserable. So how do I feel? Not even human anymore.” A 36-year-old woman with severe #MECFS confined to bed, on oxygen and a feeding tube, unable to tolerate light, sound or vibrations. Clip from Swiss TV

“It made me much worse… Most people I know with ME have exactly the same experience with it.” Annette Barclay, a patient with #MEcfs describing her deterioration following Graded Exercise Therapy.

“They’re in a darkened room, they can’t tolerate light or sound… some are even tube fed. They’re so unwell, you almost can’t fathom it” Former Team GB rower @oonagh_cousins on people with very severe #MECFS and #LongCovid and the importance to advocate for those who can’t.

🙌 Our #ThereForME blog is back from hiatus! In today's post, @karenlhargrave.bsky.social interviews Carolyn Leary, the new chair of Forward ME (a coordinating body for ME orgs). Carolyn explains how she got into ME advocacy, what you need to know about Forward ME and her future plans.

“Waking up, it’s like you’ve been hit by a truck. Everything’s shaking, vibrating internally. My brain feels inflamed, it’s like you’ve got a concussion.” Rhi has had #MEcfs for over 20 years.

“Wessely is widely regarded by people with ME/CFS as having popularised the idea that ME/CFS is primarily psychological rather than physical.” From a submission criticising the government’s ADHD/autism “overdiagnosis” review: yourpartyvoices.substack.com/p/from-the-c...

“They’ve had their lives completely demolished by this illness.” Millions are living with #LongCovid while society has moved on. Former Team GB rower @oonaghcousins.bsky.social developed #MECFS following Covid and had to retire.

“The injustice of it, I couldn’t believe it.” Former Team GB rower @oonaghcousins.bsky.social talking about the #MECFS “scandal” where patients were told they were deconditioned and needed Graded Exercise and CBT. It is the “opposite of what they needed” and that legacy still runs “super deep”.

I spoke to @theipaper.com recently about the battle I’ve faced the past two years covering the spiralling costs of James’ care. Since the interview our local authority has offered a new care package that will take the pressure off - but still doesn’t reflect James’ 24/7 needs.

Karen Quinn spent most of the 1990s bedbound with #MECFS. “We didn’t have Sky, we didn’t have computers, we didn’t have internet… I just laid there.” (Highland Radio, Ireland)

The Action for ME - BBC Lifeline Appeal video is now on YouTube (8 mins) youtu.be/qmDSP8idEXw?...

1) Interesting blog by Siebe: - "How I learned to doubt a paper" He explains how he gradually became more skeptical of claims on ME/CFS and Long Covid in scientific publications and learned to focus on methodology, replication, statistical analysis etc.

BBC Morning Live covered the new £4.75m UK government funded #MEcfs genetics study yesterday, which will sequence 6,000 DNA samples as part of the wider DecodeME project. Unfortunately, Dr Oscar Duke said Chronic Fatigue Syndrome is “probably the best way to describe” the illness.

Caroline Kingdon speaking about functional impairment and mortality in #MECFS Biobank research has shown people with ME/CFS to be more functionally impaired than people with MS. And between 2001–2016, ME/CFS was mentioned on 88 death certificates in England and Wales.

“They sometimes aren’t supported by their families. They almost always aren’t supported any longer by their friends.” Caroline Kingdon, on the profound isolation experienced by people with severe #MECFS.

“They sometimes aren’t supported by their families. They almost always aren’t supported any longer by their friends.” Caroline Kingdon, on the profound isolation experienced by people with severe #MECFS.

Thanks very much to Éabha Melvin & Dr Amolak Bansal for agreeing to be interviewed for this interview in the Irish Independent today which resulted from the Irish ME/CFS Association press release. It is an extensive article (spread over 3 pages). #MEcfs #PwME

George Monbiot describes the treatment of #MECFS as “The Greatest Medical Scandal of the 21st century”. Repost of the introduction to my 27-minute explainer video for #MEAwarenessMonth — now optimised for phones.