Trish Davis
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ozfish.bsky.social
Trish Davis
@ozfish.bsky.social
1.1K followers 290 following 66 posts
Retired maths teacher. ME/CFS 35 years. Volunteer staff member on Science for ME international forum, www.s4me.info
Posts Replies Media Videos
Reposted by Trish Davis
mecfssd.bsky.social
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...
PRIME Research Project 3rd Webinar - Post-extertional malaise (PEM)
YouTube video by Action For ME
www.youtube.com
September 2, 2026 at 10:58 PM
Reposted by Trish Davis
anilvanderzee.bsky.social
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
August 28, 2026 at 7:38 PM
Reposted by Trish Davis
anilvanderzee.bsky.social
"Not a Patient Advocate. Not Your Silver Lining Porn. Just Desperation."

anilvanderzee.com/not-an-advoc...

#pwme #myalgicE #millionsmissing #severeME
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...
anilvanderzee.com
August 21, 2026 at 1:46 PM
Reposted by Trish Davis
s4me.info
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
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...
s4me.info
August 14, 2026 at 5:28 PM
Reposted by Trish Davis
darthfoo.bsky.social
“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...
Twelve Percent
A year with Breath of the Wild, and what it actually costs to play a video game
darthfoo.substack.com
August 11, 2026 at 3:47 AM
Reposted by Trish Davis
s4me.info
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
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.
s4me.info
July 19, 2026 at 9:26 PM
Reposted by Trish Davis
s4me.info
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
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.
www.s4me.info
May 24, 2026 at 8:08 PM
Reposted by Trish Davis
anilvanderzee.bsky.social
‼️ 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
Buried Alive with M.E. (with subtitles)
YouTube video by Anil about ME
https://youtu.be/XhrAhGkrGuQ?is…
May 1, 2026 at 11:39 AM
Reposted by Trish Davis
anilvanderzee.bsky.social
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/
April 12, 2026 at 10:37 AM
Reposted by Trish Davis
somethingchronic.bsky.social
@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
meactionuk.bsky.social MEAction UK @meactionuk.bsky.social · Mar 25
The DHSC paused action on commissioning a specialised service for very severe ME/CFS until April 2027 at earliest. This isn’t acceptable @rthonwesstreeting.bsky.social!
Sign up for our mailing list meaction.org.uk/sign-up for more news.
#MyalgicEncephalomyelitis #VerySevereME
March 25, 2026 at 10:29 PM
Reposted by Trish Davis
murtoz.bsky.social
@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
roberthmcmullen.bsky.social Robert Saunders (aka McMullen) @roberthmcmullen.bsky.social · Feb 18
An Open Letter to British Association for Clinicians in ME/CFS (BACME) in Response to the Document ‘Guide to Therapy’, 2025.

www.s4me.info/threads/an-o...

Letter authors:

Jonathan Edwards (professor of connective tissue)
Michelle Bull (physiotherapist)
Joan Crawford (psychologist):
Summary The document represents a failure to move forward to an evidence-based approach to an illness that is recognised as being long term for many people and, at present, of unknown mechanism. It appears to serve interests of BACME members rather than patients and from our perspective involves a deception that can only perpetuate the lack of trust ME/CFS patients have in the healthcare system. Until now policy has been unclear. This document makes it plain that nothing with any evidence base is on offer and that there is no justification for continuing to commission services based on the proposed model. With limited resources, we believe the focus must be on medical care of severe and very severe cases, including nutrition and other life support, to reduce unnecessary deaths. The lack of a specialist medical 'home' with a research base has halted progress in knowledge and care in ME/CFS. This neglect cannot continue to be tolerated. Continuing current provision without medical leadership will not result in improved outcomes for patients. Filling the vacuum with well-intentioned, but ineffective 'therapies' is a poor use of resources and therapists’ time.
February 18, 2026 at 8:22 PM
Reposted by Trish Davis
thereforme.bsky.social
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.
February 10, 2026 at 9:19 AM
Reposted by Trish Davis
abrokenbattery.bsky.social
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...
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…
medium.com
January 19, 2026 at 7:53 AM
Reposted by Trish Davis
tomkindlon.bsky.social
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.
January 11, 2026 at 12:40 PM
Reposted by Trish Davis
s4me.info
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...
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.
www.s4me.info
January 4, 2026 at 10:36 PM
Reposted by Trish Davis
s4me.info
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...
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.
www.s4me.info
November 24, 2025 at 12:02 AM
Reposted by Trish Davis
emergencybod.medsky.social
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...
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.
www.bbc.co.uk
November 15, 2025 at 10:29 AM
Reposted by Trish Davis
s4me.info
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...
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.
www.s4me.info
November 9, 2025 at 7:59 PM
Reposted by Trish Davis
nickyproctor.bsky.social
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.”
ninasteinkopf.bsky.social Nina Steinkopf @ninasteinkopf.bsky.social · Nov 2
More than 40 ME patients share their experience with the Lightning Process: lp-fortellinger.no/en/lp-stories/
November 2, 2025 at 10:54 AM
Reposted by Trish Davis
s4me.info
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...
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.
www.s4me.info
October 26, 2025 at 9:03 PM
Reposted by Trish Davis
georgemonbiot.bsky.social
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...
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
www.theguardian.com
October 8, 2025 at 6:09 AM
Reposted by Trish Davis
s4me.info
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...
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.
www.s4me.info
September 14, 2025 at 9:12 PM
Reposted by Trish Davis
decodemestudy.bsky.social
(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.
August 6, 2025 at 7:03 PM
Reposted by Trish Davis
hildabast.bsky.social
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
Patients with severe ME/CFS deserve better than unproven theories
www.bmj.com
July 25, 2025 at 1:03 PM
Reposted by Trish Davis
binitakane.bsky.social
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.
July 15, 2025 at 8:13 AM