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Trish Davis

@ozfish.bsky.social
1.1K followers 295 following 67 posts

Retired maths teacher. ME/CFS 35 years. Volunteer staff member on Science for ME international forum, www.s4me.info

PostsRepliesMedia
Reposted by Trish Davis
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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Trish Davis @ozfish.bsky.social · 24/09/2026
Thank you.
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Reposted by Trish Davis
Alem Matthees @alemmatthees.bsky.social · 23/09/2026
For the love of the universe and the sake of millions of people with #MECFS and #LongCOVID can some funding body please fund the rest of #SequenceME / LC already?! WGS is one of the greatest crowning achievements of science and has enormous potential for pointing the compass in the right direction.
actionforme.org.uk
Sequence ME & Long Covid
SequenceME & Long Covid is a major new whole-genome sequencing study to understand ME and Long Covid.
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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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Science for ME (S4ME) @s4me.info · 20/09/2026
Our latest News in Brief summary has headlines and links to further reading about ME/CFS, Long Covid, and related news for the week of Sept. 14 - 20. s4me.info/threads/news... #MEcfs #PwMe #LongCovid #PwLC
s4me.info
News in Brief - September 2026
This thread has a Science for ME 'News in Brief' post for each week in September 2026 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
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ME/CFS San Diego @mecfssd.bsky.social · 02/09/2026
Prime Research Project PEM Video: experts discuss what PEM is, what may cause it, & how it can be defined and explained, w/ perspectives from research, clinical & patient communities. July 2026 webinar Recording: www.youtube.com/watch?v=Ad2R...
youtube.com
PRIME Research Project 3rd Webinar - Post-extertional malaise (PEM)
YouTube video by Action For ME
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Reposted by Trish Davis
Anil van der Zee @anilvanderzee.bsky.social · 28/08/2026
So, I got royally knighted today. Woot!? Yes, I did. Adopted from Sri Lanka, knighted in the Netherlands. Who would've thought! The most important thing is that this award belongs to the whole community. Everything we do is teamwork. I'll write more after I recovered. #pwme #millionsmissing
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Anil van der Zee @anilvanderzee.bsky.social · 21/08/2026
"Not a Patient Advocate. Not Your Silver Lining Porn. Just Desperation." anilvanderzee.com/not-an-advoc... #pwme #myalgicE #millionsmissing #severeME
anilvanderzee.com
Not an Advocate. Not Your Silver Lining Porn. Just Desperation. - Anil van der Zee
I'm not a patient advocate. I'm not an activist. I'm just a patient that shares out of sheer desperation as much about my disease, or rather the whole shit show circus surrounding it, so I can hopeful...
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Reposted by Trish Davis
Science for ME (S4ME) @s4me.info · 14/08/2026
New Fact Sheet from the Science for ME (S4ME) Forum: "Management of severe and very severe ME/CFS" s4me.info/threads/fact... This is the fourth fact sheet published by the S4ME forum. I'll post links to the other three in the replies. 1/4 #MEcfs #SevereME #PwME #S4ME
s4me.info
Fact Sheet 4: Management of severe and very severe ME/CFS
Fact Sheet 4: Management of severe and very severe ME/CFS Published August 2026 Link to pdf: https://s4me.info/docs/Management of severe and very severe MECFS.pdf Discussion thread: Fact sheet #4 - M...
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Fred Rossi @darthfoo.bsky.social · 11/08/2026
“I am borrowing a horizon, because mine has been four walls and a ceiling for a long time, and a person needs somewhere to look.” #LongCOVID #MECFS #Disabled #Gaming #Reading #Tools #AI darthfoo.substack.com/p/twelve-per...
darthfoo.substack.com
Twelve Percent
A year with Breath of the Wild, and what it actually costs to play a video game
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Trish Davis @ozfish.bsky.social · 24/07/2026
It's a disgrace to Golddmiths university. It's blatant advertising for brain retraining with many participants making money out of sick people. They are not simply patients telling their story, they have a product to sell. I hope it will be withdrawn.
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Reposted by Trish Davis
Science for ME (S4ME) @s4me.info · 19/07/2026
Our latest News in Brief summary has headlines and links to further reading about ME/CFS, Long Covid, and related news for the week of July 13 - 19. s4me.info/threads/news... #MEcfs #PwME #LongCovid #PwLC
s4me.info
News in Brief - July 2026
This thread has a Science for ME 'News in Brief' post for each week in July 2026 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
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Reposted by Trish Davis
Science for ME (S4ME) @s4me.info · 24/05/2026
Our latest News in Brief summary has headlines and links to further reading about ME/CFS, Long Covid, and other news for the week of May 18 - 24. www.s4me.info/threads/news... #MEcfs #LongCovid
s4me.info
News in Brief - May 2026
This thread has a Science for ME 'News in Brief' post for each week in May 2026 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
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Trish Davis @ozfish.bsky.social · 01/05/2026
A brilliant film, so moving and so true. Thank you Anil.
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Reposted by Trish Davis
Anil van der Zee @anilvanderzee.bsky.social · 01/05/2026
‼️ BURIED ALIVE WITH M.E.‼️ For #MEAwarenessMonth I made a severe ME body‑bag “dance” film about death within the ME community. youtu.be/XhrAhGkrGuQ?... I also joined the online expo ME Kills by A Quiet Storm, which goes live on May 12th, 1/ #pwme #myalgicE #millionsmissing
youtu.be
Buried Alive with M.E. (with subtitles)
YouTube video by Anil about ME
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Trish Davis @ozfish.bsky.social · 20/04/2026
I'm sorry, that's frustrating. Lots I can't do now too.
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Trish Davis @ozfish.bsky.social · 20/04/2026
I've been doing them for years. Sounds like it's not your thing. I like upwords too. Play against the machine and a couple of friends.
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Trish Davis @ozfish.bsky.social · 19/04/2026
I add phrazle and killer sudoku to your list.
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Reposted by Trish Davis
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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Something Chronic @somethingchronic.bsky.social · 25/03/2026
@rthonwesstreeting.bsky.social Coroners’ prevention of future death notices should not be ignored #pwME should not starve to death or be wrongly institutionalised because no NHS specialist services exist for #severeME Successive governments have known for decades #JusticeForME #HumanRightsAbuse
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Michiel @murtoz.bsky.social · 18/02/2026
@tessamunt.bsky.social @ashleydaltonmp.bsky.social this open letter calls for exactly the right thing. We must stop unnecessary deaths by developing a safe (very) severe NHS hospital protocol. Also needs a specialist ward that's suitable for people with the severe sensory issues. #SaveSavannah
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Trish Davis @ozfish.bsky.social · 10/02/2026
Tessa can you please insist that the NHS make the Severe ME/CFS module open access? It's wrong that patients are not allowed to see what clinicians are told about our illness.
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ThereForME @thereforme.bsky.social · 10/02/2026
In this week's #ThereForME blog our co-founder @karenlhargrave.bsky.social writes about the challenges she and her husband James have faced accessing NHS Continuing Healthcare funding. She explains why CHC funding for very severe ME is an issue that deserves attention. 🔗 in next post 👇
A picture of a young woman and man together smiling (Karen and James). Overlaid on the picture: "When I first came across CHC funding it felt like the perfect fit [...] Their initial assessment concluded he was eligible. Yet, one year on both our CHC application and subsequent appeal have been rejected." Karen Hargrave. New #ThereForME Substack post.
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Trish Davis @ozfish.bsky.social · 20/01/2026
2/2 See this S4ME thread. Social media interest does not equate to good science. www.s4me.info/threads/the-...
s4me.info
The Born Free Protocol
There seems to be substantial, growing interest in this alt-med protocol among pwME if my Twitter is anything to go by—and not just among the people most into alt-med. So it seems worth being informed...
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Trish Davis @ozfish.bsky.social · 20/01/2026
I think this is a highly irresponsible approach from a respected clinician. The inventor is a fitness trainer, not a scientist or clinician, people have been harmed by his protocol, the 'science' is shaky, there is no clinical trial evidence, he makes outlandish claims and behaves unethically. 1/2..
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Trish Davis @ozfish.bsky.social · 20/01/2026
Hi Nicola, I can't understand why you are promoting this quack protocol. Where is the evidence?
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Adam @abrokenbattery.bsky.social · 19/01/2026
My #MECFS scandal explainer video has just passed 200,000 views. Given the level of interest, I’ve written a follow-up article covering key examples I didn’t include, as well as some developments since. medium.com/@abrokenbatt...
medium.com
ME/CFS Scandal Follow up
The ME/CFS scandal goes much deeper than my 27-minute explainer video. That was just an introduction — how for decades patients were told…
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Reposted by Trish Davis
Tom Kindlon @tomkindlon.bsky.social · 11/01/2026
5-page post-exertional malaise ( #PEM) fact sheet www.s4me.info/docs/PEM_Fac... Headings: -Characteristics of PEM -Symptoms of PEM -Exertion and other PEM triggers -Effects of exertion that are not PEM -Living with PEM -Examples of PEM -Research on PEM -References #MEcfs #CFS #pwME #LongCovid 1/
Post-exertional malaise (PEM) Key points  People with ME/CFS have
episodes when they are much more ill than usual following physical or
mental exertion. This is called post-exertional malaise, or PEM.  PEM
is a hallmark of ME/CFS and is important for diagnosis  Activities
like a short walk or reading a few pages may trigger PEM. For the most
severely ill, even chewing may trigger it. For many, light, sound and
other sensory stimuli also trigger PEM. Often it is the combined
effect of all activities and stimuli over a day or more that triggers
PEM.  PEM usually starts hours or a day or two after it is triggered
and can last for hours, days, weeks or longer. During this time, a
person cannot do as much as usual and needs to rest.  There is no
effective treatment for PEM.  PEM is not the same as the fatigue and
muscle soreness anyone can experience after more activity than usual.
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Trish Davis @ozfish.bsky.social · 05/01/2026
I doubt any of them are really following NICE. The BACME documents are not NICE compliant, as they recommend pacing up and claim it leads to improvement.
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Science for ME (S4ME) @s4me.info · 04/01/2026
Our latest News in Brief summary has headlines and links to further reading for #MECFS, #LongCovid, and related news for the week of Dec. 29 - Jan. 4. Topics: News, advocacy and articles Coming events Research news and commentary & Published research www.s4me.info/threads/news...
s4me.info
News in Brief - January 2026
This thread has a Science for ME 'News in Brief' post for each week in January 2026 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
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Trish Davis @ozfish.bsky.social · 09/12/2025
Where is the published clinical trial and scan evidence?
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Science for ME (S4ME) @s4me.info · 24/11/2025
Our latest News in Brief summary has headlines and links to further reading for #MECFS, #LongCovid, and related news for the week of Nov. 17 - 23. Topics: News, advocacy and articles Coming events Research news and commentary & Published research www.s4me.info/threads/news...
s4me.info
News in Brief - November 2025
This thread has a Science for ME 'News in Brief' post for each week in November 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
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Dr Farbod @emergencybod.medsky.social · 15/11/2025
I came to this country as a child refugee. No English, no certainty, no idea what my life could become. Britain gave me refuge. Not on a timer, not with conditions attached, but with a chance to grow roots. A thread 🧵 1/8 www.bbc.co.uk/news/article...
bbc.co.uk
UK set to limit refugees to temporary stays
Shabana Mahmood is expected to say the era of permanent protection for refugees is over, in major changes to the UK's asylum and immigration system.
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Science for ME (S4ME) @s4me.info · 09/11/2025
Our latest News in Brief summary has headlines and links to further reading for #MECFS, #LongCovid, and related news for the week of Nov. 3 - 9. Topics: News, advocacy and articles Coming events Research news and commentary & Published research www.s4me.info/threads/news...
s4me.info
News in Brief - November 2025
This thread has a Science for ME 'News in Brief' post for each week in November 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
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Nicky Proctor @nickyproctor.bsky.social · 02/11/2025
From people who did LP: “Then they tell you that it’s your own fault for having ME, because you’re doing ME. I became physically exhausted and unwell, and felt guilty because you would have to be pretty stupid when you’re making yourself ill.”
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Science for ME (S4ME) @s4me.info · 26/10/2025
Our latest News in Brief post has headlines and links to further reading for #MECFS and #LongCovid news, advocacy and research for the week of Oct. 20 - 26. Topics: News, advocacy and articles Coming events Research news and commentary & Published research www.s4me.info/threads/news...
s4me.info
News in Brief - October 2025
This thread has a Science for ME 'News in Brief' post for each week in October 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
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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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Science for ME (S4ME) @s4me.info · 14/09/2025
Our latest News in Brief post has headlines and links to further reading for #MECFS and #LongCovid news, advocacy and research for the week of Sep 8-14. Topics: News, advocacy and articles Coming events Research news and commentary & Published research www.s4me.info/threads/news...
s4me.info
News in Brief - September 2025
This thread has a Science for ME 'News in Brief' post for each week in September 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
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DecodeME @decodemestudy.bsky.social · 06/08/2025
(1/2) Key genetic differences found in people with ME/CFS > Swipe to find out more. These findings reflect the lived experience of thousands of #pwME. Thanks to all our participants & supporters who made this possible! Read a summary of our results: shorturl.at/pgsjk
Graphic 1 of 4. DecodeME: The Results graphic. At the top in bold lettering, it says ‘Main Findings’. Beneath this it says ‘Your genes contribute to your chances of developing ME/CFS. Other key findings are on the following slides.Graphic 2 of 4. DecodeME: The Results graphic. The slide says ‘People with an ME/CFS diagnosis have significant genetic differences in their DNA compared to the general population’. Beneath this is an image of a DNA helix and a magnifying glass.Graphic 3 of 4. DecodeME: The Results graphic. The slide says ‘These lie in many places across the genome, and do not impact just one gene’. Beneath this is an image of a DNA helix and graphs.Graphic 4 of 4. DecodeME: The Results graphic. The slide says ‘Eight genetic signals have been identified. As DNA doesn’t change with ME/CFS onset, these findings reflect causes rather than effects of ME/CFS’. Beneath this is a blue magnifying glass with a DNA helix.
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Trish Davis @ozfish.bsky.social · 26/07/2025
Very good. Thank you Hilda.
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Hilda Bastian @hildabast.bsky.social · 25/07/2025
My rapid response at BMJ is online now. I joined the chorus of protest about an opinion piece claiming people with severe ME/CFS can recover by "reframing their beliefs" &c. People with ME/CFS deserve so much better than that: www.bmj.com/content/389/... #MECFS
bmj.com
Patients with severe ME/CFS deserve better than unproven theories
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Binita Kane @binitakane.bsky.social · 15/07/2025
I did my safeguarding level 3 mandatory training this week on FII (Fabricated or induced illness - seen as a form of child abuse) and PP (perplexing presentations) i.e. symptoms that don’t make sense to paediatricians. Look at the symptoms that these ‘abusive’ parents may report.
A slide showing boxes with multiple symptoms and traits commonly seen in post-viral conditions eg allergies, ADHD, sleep problems.
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Science for ME (S4ME) @s4me.info · 15/06/2025
Our latest News in Brief post has headlines and links to further reading for #MECFS, #LongCovid, and related news, advocacy and research for the week of June 9 - 15. Topics: News, advocacy and articles Coming events Research news and commentary & Published research www.s4me.info/threads/news...
s4me.info
News in Brief - June 2025
This thread has a Science for ME 'News in Brief' post for each week in June 2025 by a team including @Trish, @Kalliope, @ahimsa and @SNT Gatchaman. Scroll down to see this week's news.
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Tom Kindlon @tomkindlon.bsky.social · 13/06/2025
🧵 I thought this was good (as I'd expect from @oonaghcousins.bsky.social & @thereforme.bsky.social team): "The importance of understanding rest: How my experience of rest as an athlete clashed with my experience of rest as a patient" www.thereforme.uk/p/the-import... #MEcfs #LongCovid 1/
The importance of understanding rest
How my experience of rest as an athlete clashed with my experience of rest as a patient
Oonagh Cousins
Jun 10, 2025

Today’s post is from our very own Oonagh Cousins, a member of the #ThereForME HQ team. Oonagh is a former professional athlete with the British Rowing team and was pre-selected for the Tokyo Olympics before her career was cut short by Long Covid, which she contracted in March 2020. After nearly three years of attempting to recover and return to elite sport, she made the decision to retire at the end of 2022. Since then, she has focused her efforts in the Long Covid and ME space – working at the charity Long Covid Support, as part of a social science research team at the University of Oxford, and in the #ThereForME team.
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David Tuller @davetuller1.bsky.social · 25/05/2025
The BMJ has a long history of publishing stuff promoting the "biopsychosocial" approach to ME and ME/CFS: virology.ws/2025/05/24/t...
virology.ws
Trial By Error: More on the BMJ Opinion Piece from the Psychobabblers | Virology Blog
By David Tuller, DrPH When it comes to ME and ME/CFS, The BMJ—formerly called The British Medical Journal but now, like the food franchise once known as Ken ...
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Carole Bruce @cabruce.bsky.social · 18/05/2025
The BMJ have published Dom Salisbury’s rapid response to Miller et al’s Opinion piece. He mentions PEM as the definitive symptom. #ME
bmj.com
Ignorance about post-exertional malaise and continued conflation of ME/CFS with chronic fatigue harms patients and stymies research progress
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Science for ME (S4ME) @s4me.info · 13/05/2025
The Science for ME forum has published a fact sheet on PEM, post-exertional malaise. This fact sheet may be copied and used freely by individuals and organizations. Forum version: www.s4me.info/threads/scie... PDF version: www.s4me.info/docs/PEM_Fac... #MEcfs #PwME
s4me.info
Science for ME Fact Sheets
The Science for ME committee and members are running a project to develop fact sheets about aspects of ME/CFS. These are being developed in...
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Brian Hughes @bmhughes.bsky.social · 14/05/2025
It is sad to see @bmj.com platforming quack therapies in 2025 The mind-over-matter approach to #MECFS has been debunked for years, but a cadre of psych devotees in the UK persist in peddling evidence-free miracle cures Pure and utter pseudoscience #pwME #LongCovid @georgemonbiot.bsky.social
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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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