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Brian Fog

@uselesspriest.bsky.social
2.4K followers 376 following 84 posts

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

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Reposted by Brian Fog
The Guardian @theguardian.com · 24/09/2026
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
theguardian.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
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Carole Bruce @cabruce.bsky.social · 24/09/2026
@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.
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Natasha Devon @natashadevon.bsky.social · 24/09/2026
George will be coming on my show this weekend to discuss this very important article.
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sarah boothby @swastrosarah.bsky.social · 24/09/2026
"In other words, there has seldom been a stronger case for a public inquiry." What have they achieved for anyone else? We need a public apology, for the sake of public information. Another decade spent on legal definitions at the expense of patients is no good. www.theguardian.com/commentisfre...
theguardian.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
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George Monbiot @georgemonbiot.bsky.social · 24/09/2026
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...
theguardian.com
Abandoned, dismissed and gaslighted: there is no excuse for the way ME sufferers have been betrayed | George Monbiot
Changes in guidance and science seem to have little impact on millions of devastated lives. It’s a social crisis playing out behind closed doors, says Guardian columnist George Monbiot
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Leah McElrath @leahmcelrath.bsky.social · 22/09/2026
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.
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Alem Matthees @alemmatthees.bsky.social · 19/09/2026
A persuasive statement from Sarah Boothby @swastrosarah.bsky.social about the apparent necessity of legal action such as #JusticeForME to help overcome the decades of inaction/stonewalling and to 'keep the bastards honest' (a phrase used in Australian politics). www.crowdjustice.com/case/justice...
"Why we are no further on than before Maeve died makes me feel I have been lied to by everybody I thought I could respect. Unlike the many other families facing what we went through, I now have nothing left to lose. They do have everything to hope for but it is a matter of fact that legal action has been the only remedy for this extremely vulnerable group. Without it, the PACE trial would not have been exposed for the fraud it was [2] [3] [4]. Without their families insisting on the inquests into the deaths of Sophia Mirza [5] and Merryn Crofts[6], the fact that medical mismanagement of ME routinely kills young people would not be known. In the light of so much evidence, the time for crowdfunding legal action has come. Knowing how we tried everything else first, I fully endorse and support #JusticeForME."

[1] Care Act (2014); Mental Capacity Act (2005); Mental Health Act (1983); Equality Act (2010); Human Rights Act (1998)

[2] Wilshire, C., Kindlon, T., Matthees, A., & McGrath, S. (2016) https://doi.org/10.1080/21641846.2017.1259724

[3] Wilshire, C.E., Kindlon, T., Courtney, R., Matthees, A., Tuller, D., Geraghty, K., Levin, B. (2018). https://doi.org/10.1186/s40359-018-0218-3

[4] Valerie Eliot Smith (2015) https://valerieeliotsmith.com/2015/01/20/the-secret-files-unwrapped-part-i-the-importance-of-fair-and-accurate-records/

[5] Brighton Coroners Court, 13 June 2006

[6] Rochdale Coroners Court, 19 May 2018
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Brian Fog @uselesspriest.bsky.social · 21/09/2026
Training myself to regard negative results with the same importance as positive findings.
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Reposted by Brian Fog
George Monbiot @georgemonbiot.bsky.social · 21/09/2026
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.
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Alem Matthees @alemmatthees.bsky.social · 17/09/2026
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.
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Probably Prowerfox @prowerfox.bsky.social · 15/09/2026
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.
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Brian Fog @uselesspriest.bsky.social · 16/09/2026
This is a Rachel Fairbank appreciation tweet. Her POTS piece for National Geographic was amazing. She’s been relentlessly showing up for IACC folks for years with thoroughly well-researched articles. @sweetsciencewriter.bsky.social
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Brian Fog @uselesspriest.bsky.social · 14/07/2026
RIP Bridget O'Shea
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sarah boothby @swastrosarah.bsky.social · 13/07/2026
2018 250,000 #pwME 2026 1,000, 000 #pwME #LongCovidME apart from the rise in numbers and a review of NICE guidance, has anything else changed? hansard.parliament.uk/Commons/2018...
hansard.parliament.uk
PACE Trial: People with ME - Hansard - UK Parliament
Hansard record of the item : ' PACE Trial: People with ME' on Tuesday 20 February 2018.
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sarah boothby @swastrosarah.bsky.social · 03/06/2026
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
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Anil van der Zee @anilvanderzee.bsky.social · 01/06/2026
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.
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 30/05/2026
In addition, Medscape highlighted my most recent paper on Underuse of Pharmacological Therapies in #MECFS Before Specialist Evaluation. I'll cite it when the article uses the name of the disease :) For now, here's the paper: www.annfammed.org/content/earl...
annfammed.org
Underuse of Pharmacologic Therapies for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Before Specialist Evaluation
PURPOSE Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a multisystem neurologic disease characterized by profound fatigue and decreased functional capacity, postexertional malaise, and...
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sarah boothby @swastrosarah.bsky.social · 25/05/2026
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.
justice4me.uk
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.
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Brian Fog @uselesspriest.bsky.social · 14/04/2026
Disappointing myself and others is the most important skill to develop with ME.
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Chris Ponting @cgatist.bsky.social · 11/04/2026
Thank you so much to Hope4MEFibroNI for hosting this event in Newry last month. Talks now on YouTube: www.youtube.com/watch?v=KHxz... www.youtube.com/@hope4mefibr... #MEcfs @decodemestudy.bsky.social
youtube.com
"Collaboration for Change" - Newry March 2026 Professor Chris Ponting
YouTube video by Hope4MEFibroNI
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Anil van der Zee @anilvanderzee.bsky.social · 12/04/2026
TRAILER: Buried Alive with M.E. I’ve spent the last months making a film for M.E. Kills, an online exhibition by A Quiet Storm. People with ME die every week. Many more are left to rot in dark rooms without care, disbelieved and dismissed. It’s a living death. #pwme #millionsmissing #severeME 1/
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C.H. Romatowski @chromatowski.bsky.social · 28/03/2026
Some #LongCovid news—Rep. Valerie Foushee has introduced a resolution to recognize Long Covid Awareness Month! 🧵 on how you can support this resolution—and help pave the way for further action!
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ME/CFS Science @mecfsscience.org · 23/03/2026
1) Two age peaks: a fascinating paper confirmed two peaks for when people get ME/CFS: around 16 years old and in the mid thirties. The early onset in adolescence was associated with severe ME/CFS, an infectious onset, and having relatives with the disease. A brief summary...
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Bloomberg News @bloomberg.com · 25/02/2026
How long do the effects of Covid really last? Researchers are still discovering new neurological issues.
bloom.bg
How Covid Quietly Rewires the Brain
Researchers keep discovering more about the long-term neurological effects of SARS-CoV-2.
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Brian Fog @uselesspriest.bsky.social · 13/03/2026
ℹ️ Controversy in NL as government-commissioned research into ME/CFS will not be allowed to used patented drugs. This does not apply to Long COVID (currently Sonlicromanol is being trialled)! Dr. Jeroen Den Dunnen has had to scrap a grant proposal because of this.
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Brian Fog @uselesspriest.bsky.social · 03/03/2026
“Lockdown over? Not for me.” The LC Association in the Netherlands is encouraging people to put posters up in their neighbourhood. Wonder if it’s inspired by @berlin-buyers-club.bsky.social 🙂
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Long Covid Kids @longcovidkids.bsky.social · 28/02/2026
Can you spare one minute to support children with Long Covid today? Use our template to write to your MP. longcovidkids.eaction.org.uk/awarenessday #LongCovidAwareness #ChildrensRights @lcawarenessint.bsky.social @longcovidsupport.bsky.social @longcovidphysio.bsky.social @longcovidsos.bsky.social
longcovidkids.eaction.org.uk
Email your MP about Long Covid Awareness Day
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Brian Fog @uselesspriest.bsky.social · 27/02/2026
Prof. Simon Carding has been awarded €7.5M through the EU Horizon grant for his work on ME/CFS.
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sarah boothby @swastrosarah.bsky.social · 24/02/2026
ME is not chronic fatigue. Medical neglect of ME kills. Your record on reporting this is so bad, I had to insist on being left out of it (with a complaint to the news desk). #MaeveInquest
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Michiel @murtoz.bsky.social · 24/02/2026
I find it appalling you would write such a piece and not even once mention that there are people currently being starved by the NHS, 5 years after Maeve died for those exact same reasons, and despite a coroners prevention of future deaths report demanding urgent action & safe hospital beds for us.
gofundme.com
Donate to #SevereMErgency:Save Savannah from dying inside NHS hospital, organized by Sam Pearce
Very Severe ME patient 23 year-old Savannah Victora-May is at … Sam Pearce needs your support for #SevereMErgency:Save Savannah from dying inside NHS hospital
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Brian Fog @uselesspriest.bsky.social · 24/02/2026
It wouldn't do to mention severe ME in articles like this. The conceit is that it's a Victorian-era "malaise" that puts a dampener on your life periodically. The reality for many is dark rooms, eye masks, feeding tubes and medically assisted death.
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sarah boothby @swastrosarah.bsky.social · 09/09/2025
#Savannah #vsME update. A good MDT which ran over to twice the length of time allocated. Dr Weir and I were both invited, spoke at length and were heard. The absence of NHS ME specialists _anywhere_ in the UK is the biggest probem for every ICB, including Lewisham and Greenwich.
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Lucibee @lucibee.bsky.social · 09/02/2026
About a month ago, I made a FOIA request to the NHS England Learning Hub about their new learning modules on ME/CFS... 🧵 1/n
Email sent to NHS elearning enquiries on 12 January 2026. 

Subject - Request for information.

Dear NHSE elearning hub,

I am making a freedom of information request (FOIA 2000) for the following data.

In 2024/5, the NHS England elfh e-learning hub introduced 3 new modules on ME/CFS:

1. An introduction to ME/CFS (May 2024).
2. ME/CFS: guidance for community-based healthcare practitioners (January 2025).
3. Managing Severe ME/CFS (September 2025).

Please can you tell me how many people have completed each module to date (from date of introduction), and what the breakdown is for logins by NHS staff (nhs.uk), and those in government (gov.uk), academic (ac.uk), and social care sectors (if available). 

I am happy for your response to be sent to this email address.

Many thanks for your help,

Lucy B
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Tessa Munt MP 🔶 @tessamunt.bsky.social · 05/02/2026
Savannah Victora-May has been in hospital for 11 months with severe ME; a dearth of specialist treatment has contributed to her situation. The Govt’s Final Delivery Plan committed to exploring a specialised service for very severe ME. *What* is happening to prevent more cases such as Savannah’s?
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ME/CFS Science @mecfsscience.org · 18/01/2026
1) Reminder: the Horizon Europe work program for 2026-2027 includes a call on post-infection long-term conditions. It has a budget of 6-8 million per project and seems ideally suited for ME/CFS and Long Covid research. The opening date is 10 February 2026.
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Richard Vallée @richardvallee.bsky.social · 30/11/2025
If you know anything about the history of post-infectious illnesses, like Long Covid and ME/CFS, this happening in The Hague is hugely symbolic. A crisis of choice built on hubris and perpetuated by failed systems that refuse to learn from destroying millions of lives.
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ME Centraal @mecentraal.bsky.social · 30/11/2025
Guus Liebrand aan het woord...(foto: Lizzy Smits) Een woord van dank aan #NietHersteld en Guus die echt een wonder hebben verricht door zoveel mensen fysiek op de been te krijgen en online thuis mee te laten demonstreren. Diep buiging! Overige foto's: Yvonne Smits #PAISProtets #NietHersteld
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Brian Fog @uselesspriest.bsky.social · 30/11/2025
Some photos from the #PAISProtest now happening at the Malieveld in The Hague. Looks like a nice crowd has gathered.
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George Monbiot @georgemonbiot.bsky.social · 08/10/2025
ME/CFS is a devastating condition that has long been denied, dismissed, psychologised and underdiagnosed. Research is at last starting to catch up with it, with glimmers of hope for those who have been left untreated for so long. There's a huge BUT coming ...🧵 www.theguardian.com/society/2025...
theguardian.com
Scientists develop first ‘accurate blood test’ to detect chronic fatigue syndrome
Research could offer hope for ME patients – but some experts urge caution and say more studies needed
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sarah boothby @swastrosarah.bsky.social · 11/12/2024
#MaeveInquest update! All credit to NHS Devon for innovating the first step towards an ME specific NHS pathway. For planned and unplanned hospital admissions, details are now public and available here, www.royaldevon.nhs.uk/services/mya...
royaldevon.nhs.uk
NHS Royal Devon | Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS)
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Brian Hughes @bmhughes.bsky.social · 09/09/2025
The Irish health service has initiated a process to develop a clinical guideline for ME (#MyalgicEncephalomyelitis). I am honoured to be part of its Steering Group The process so far has been extremely progressive I am hugely optimistic that a world-leading guideline will be produced #pwME #MECFS
hse.ie
Myalgic Encephalomyelitis (ME) - HSE.ie
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Yann (ME/LC) @me-cfs.bsky.social · 20/03/2025
As a person with Very Severe ME, I hate how articles describe ME. “chronic fatigue, some people can’t exercise and work, often people have headaches and nausea”. I haven’t * left my bed in 2 years * spoke in 1.5 years * heard a human voice in 1.5 years And that’s how you describe my illness?
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Nele @nelehelena.bsky.social · 19/08/2025
A Dutch #pwME urgently needs TPN (Total Parenteral Nutrition) because she has gastroparesis and cannot tolerate food or any other form of tube feeding. But the hospital refuses, saying they don’t provide this to pw ME. Is there anyone in the international community who can help?
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Natasha Devon @natashadevon.bsky.social · 09/08/2025
Today (Sat 9th) from 6pm on LBC -Labour is trying to deter small boat crossings and neutralise Farage with scary videos. - Have ever been told your ME ‘isn’t real’? -Badenoch claims Black & white working class kids are discouraged from applying to Oxbridge & pushed to vocational quals by teachers.
Natasha in LBC studio
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Dave Vetter @davidrvetter.bsky.social · 08/08/2025
I am once again contemplating this banger.
A tweet from David East that reads: "starting to think that the rest of the world was actually fine in Children of Men and Britain just chose to be like that"
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sarah boothby @swastrosarah.bsky.social · 31/07/2025
Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear. #MEKills #HumanRights
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Katharine Cheston @kacheston.bsky.social · 16/05/2025
The BMJ has now published my rapid response to Miller et al's Opinion piece. www.bmj.com/content/389/...
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María Richardson @diatoma.bsky.social · 13/04/2025
Friends, please follow @meactnet.bsky.social and other #MyalgicEncephalomyelitis #MECFS #LongCovid #IACC orgs and join in #WorldMEDay #MillionsMissing actions in May and beyond ❤️. #GreatestMEdicalScandal #TeachMETreatME #pwME #SevereME #MEKills #DontLetMEDie #JohnVsJonVsME
On a light red background, text that reads: "When I talk about social abandonment in M.E., I don’t mean the loss of contact and support from many friends and relatives (though that is also a part of the story, as with perhaps all chronic illnesses and even acute ones.) 

I mean that Myalgic Encephalomyelitis is a devastating and neglected neuroimmune illness with no FDA-approved treatments for which almost nobody but the most affected advocate for progress in research and care. People with M.E. don’t die quickly, but M.E. destroys lives, destroys the possibility of engaging with the world, and eventually #MEkills. 

Will you join MEAction, World ME Alliance, and other M.E. and IACC orgs in their calls for action on 
May 12, World M.E. Day? 

The #MillionsMissing need healthy allies to recognize this is a global health and human rights scandal and join the fight for change."
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Hoa @nocaffeineplz.bsky.social · 04/04/2025
My friend @catofrederiks.bsky.social is launching a fundraiser for her spinal fusion. She has ME/CFS and has severe issues. Please share around, any 5€ is more than welcome 🙏🏻 🙏🏻
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George Monbiot @georgemonbiot.bsky.social · 29/01/2025
This is deeply shocking and disturbing, the opposite of scientific good practice. As I see it, a group of diehards promoting a discredited treatment (exercise "therapy" for ME/CFS patients) are seeking to stifle medical progress - to protect their reputations. And Cochrane has kowtowed to them. 🧵
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