I'm sorry, that's frustrating. Lots I can't do now too.

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.

I add phrazle and killer sudoku to your list.

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

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@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

@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

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.

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.

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 👇

2/2 See this S4ME thread.
Social media interest does not equate to good science.
www.s4me.info/threads/the-...

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..

Hi Nicola, I can't understand why you are promoting this quack protocol. Where is the evidence?

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…

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...

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.

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

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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.

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...

Where is the published clinical trial and scan evidence?

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...

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.

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...

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...

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.”

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...

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

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...

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...

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.

(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

Very good. Thank you Hilda.

Patients with severe ME/CFS deserve better than unproven theories

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

A slide showing boxes with multiple symptoms and traits commonly seen in post-viral conditions eg allergies, ADHD, sleep problems.

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.

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...

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.

🧵
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

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