Brian Fog

@uselesspriest.bsky.social

Long COVID, mild, since Apr 2022 ME / Long COVID diagnosed May 2024

Thank you Beth Dobbin for giving your energy to sharing your story of Olympics to #ME - a powerful reminder ahead of next week’s budget that we are all poorer through losing the contributions of so many #pwME. Time for #DHSC to seriously step up investment in research to bring an end to this tragedy

Billy Hanlon@bhanlon15.bsky.social · last wk.

BBC: 'Olympian Dobbin writes to Prime Minister over ME funding' 'Former British sprinter Beth Dobbin has called on Prime Minister Andy Burnham to fund more research into the "life-decimating" condition that has resulted in her spending 22 hours a day in bed' www.bbc.com/sport/athlet...

“…with severity ranging from people able to work or study to those requiring round-the-clock tube feeding.” Don’t think I’ve ever seen this in print before. I’m stunned. 18 words. Simple. Game-changing.

@mrjamesob.bsky.social Would it be possible for you to open up a discussion based on this article. Many of us have been totally abandoned, often abused and belittled for decades. Friends have died or have taken their own lives as it’s unbearable. 400,000 of us would be very grateful.

George Monbiot@georgemonbiot.bsky.social · last mo.

Here's today's column on the astonishing, ongoing mistreatment of people with #ME/CFS. Please spread it far and wide: the only thing which can break the media's wall of indifference is seeing an article about the issue go viral. Thank you. 1/2 www.theguardian.com/commentisfre...

I’ve lived with MECFS for over two decades. It has destroyed my relationships and my ability to provide for myself. Despite the isolation resulting from the former, it is the latter that makes me contemplate ending my life. The feeling is NOT depression: I *want* to live, but there are not supports.

George Monbiot@georgemonbiot.bsky.social · last mo.

Sorry not to be reply to everyone who responded to my info request about #ME/CFS treatment y'day. Totally overwhelmed by utterly horrific stories. Now busy pulling it all together. And starting to see that there's a whole other story to be written (one day) about capital and chronic conditions. 1/2

Intending to write another column about the treatment of #ME/CFS patients this week, pegged to new research findings on the biological basis. My question for sufferers: Are any of you still being offered inappropriate (psych/GET etc) "treatments"? Please email george at monbiot dot info. Thanks.

I am going to have a go at social media. I do not know if it will be successful or if anyone will be interested. I would rather avoid the topic of #MECFS and focus on other interests, but it continues to destroy my life and if I can help raise awareness then perhaps the suffering is not for nothing.

Yesterday I lost my dad, and as you can imagine, I'm going through a bit of grief. It pains me that I have to "budget" my grief and other emotions because of #MECFS. I have family support but even then, pacing myself is important unless I want to add to my family's burden right now.

Tom Kindlon@tomkindlon.bsky.social · last mo.

🧵 I thought this 7-page introductory piece written by a medical doctor was very good "Understanding ME/CFS An Introduction to a Complex Illness" (August 2026) by @drmichaelabauer.bsky.social storage.e.jimdo.com/file/1caec72... #MEcfs #PwME #CFS #MyalgicEncephalomyelitis #ChronicFatigueSyndrome 1/

"Understanding ME/CFS An Introduction to a Complex Illness"
Dr. med. Michaela Bauer · August 2026

Image of a female reading a book entitled "ME/CFS Myalgic Encephalomyelitis/Chronic Fatigue Syndrome"
with 5 thought bubbles showing what she is thinking about

Watching this was so moving because I never saw anyone nurse Maeve like this. It was all left to me, alone, round the clock for seven months - including during hospital admissions. I couldn't do it all. We needed help. There was no help. Getting her out of hospital was the best help, but without a

Anil van der Zee@anilvanderzee.bsky.social · 5mo ago

1) This video shows a unique care unit in Norway called Røysumtunet for people with #severeME & very severe ME. It is one of the only places where the sickest patients can receive specialised care. We need this everywhere!! #pwme #myalgicE #millionsmissing #severeME

1) This paper provides the a structured, transdisciplinary care guide for people with #severeME in home settings. The guide fills a major gap in professional knowledge and supports both family caregivers and health professionals in delivering safe, stabilizing care for people with severe ME.

Bild

justice4me.uk update coming soon . . . my understanding is: Government wants to fight people with the poorest quality of life of all chronic illnesses and their family carers.

NHS care for ME now

Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness.

justice4me.uk

Adam@abrokenbattery.bsky.social · 5mo ago

“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”.