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Alem Matthees

@alemmatthees.bsky.social
296 followers 21 following 69 posts

A dissident with severe ME/CFS who contributed to the PACE trial reanalysis. I was interested in the mind-body problem in philosophy and psyche-soma connection in medicine. I realised not all that glitters is gold and the emperors often have no clothes.

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Alem Matthees @alemmatthees.bsky.social · 5h
"The troubling paradox is that women experience more pain, yet their pain is also more likely to be dismissed, diagnosed late or undertreated ... This enormous study shows that the higher burden of pain in women is remarkably consistent across the body and in a remarkably diverse global population."
theguardian.com
Women suffer more pain than men across the whole body, major global study finds
Researchers looked at pain around the world and across the human lifespan, finding steepest rise happens before age 55
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Alem Matthees @alemmatthees.bsky.social · 18h
My best friend (paraphrased): "I caught COVID twice. I did not develop #LongCOVID, but I soon realised the acute infection was dangerous so I needed to rest and was able to. I can see how people get harmed by trying to push themselves during infection."
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Alem Matthees @alemmatthees.bsky.social · 18h
The approach to #LongCOVID has been ignore it until it goes away, preferring fantasy over reality. It has not gone away. This approach was applied to #MECFS for decades and it did not make anything go away except QoL, welfare/insurance costs, critical thinking, foresight to prevent trillions $ lost.
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Reposted by Alem Matthees
Karim Wafa-Al Hussaini @karimwafa.bsky.social · 02/10/2026
They say they hate “wokeness,” but what they really hate is empathy. Because once you start caring about other people’s experiences, inequalities become harder to ignore, and privilege becomes harder to defend.
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Alem Matthees @alemmatthees.bsky.social · 03/10/2026
(1/3) Perhaps what the GP wrote was lost in translation striving for balance? Of course exercise (beyond our capacity) is inherently dangerous, it is built into the definition of PEM. When improving, it is also far more useful to do hobbies or chores than a bland exercise in the name of exercise.
theguardian.com
Specialist services are vital to help people with ME/CFS | Letter
Letters: Readers respond to George Monbiot’s article about how those with myalgic encephalomyelitis, or chronic fatigue syndrome, have been failed by the health system
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Alem Matthees @alemmatthees.bsky.social · 03/10/2026
Unofficial motto of most tech bros in big business: MOVE FAST AND BREAK THINGS. Unofficial motto of New York City's mayor, Zohran Mamdani: MOVE FAST AND FIX THINGS.
en.wikipedia.org
Zohran Mamdani - Wikipedia
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Alem Matthees @alemmatthees.bsky.social · 02/10/2026
(1/3) @georgemonbiot.bsky.social is far more deserving of winning a prize for his journalism on the #MECFS scandal than whatever award was given to another journalist for literally just reporting a curated narrative handed to him by the Science Media Centre (UK) as part of their organised campaign.
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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Alem Matthees @alemmatthees.bsky.social · 30/09/2026
9+ years of very severe #MECFS has done great harm to my physical health. I know there is a belief that ME/CFS does not cause damage. But years of nutritional deficiency, medication effects, and deconditioning from unavoidable restrictions, *does* do harm that is not all necessarily reversible.
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Alem Matthees @alemmatthees.bsky.social · 30/09/2026
Those with #MECFS who do *not* "look" fine are often treated like garbage too, because more ill often means more to blame. Many doctors who believe ME/CFS exists only accept a certain degree of disability, beyond that is then assumed must be due to personal issues rather than the illness itself.
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Alem Matthees @alemmatthees.bsky.social · 29/09/2026
(1/3) As an outsider, it appears the US is approaching a crossroad on the edge of a precipice. What happens in November 2026 is going to determine the trajectory for a long time. The heart of the nation and the robustness of democracy is at stake with Project 2025 & Dark Enlightenment sympathisers.
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Aiwendil ⓥ @chronicallyfab.bsky.social · 28/09/2026
Does Star Trek want me on an episode as a cryogenic person and the episode is about how the governments treated ME/CFS and people with ME/CFS
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Alem Matthees @alemmatthees.bsky.social · 28/09/2026
(1/12) No. The painful truth about #LongCOVID is not the alleged suppression of brain retraining, but that the scale of the pandemic and aftermath were preventable. Systemic and collective failures emerged from a chain of poor decisions. Millions dead. Millions of lives ruined. Trillions $ lost.
wired.com
The Painful Truth About Long Covid
There might finally be a way forward for long Covid treatment—if only you were allowed to talk about it.
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Alem Matthees @alemmatthees.bsky.social · 27/09/2026
"Have you tried yoga?" Yes I have, and it looked something like this amusing image I found on Reddit. www.reddit.com/r/cfs/commen... Jokes aside, there are many forms of yoga, and one thing I noticed about #MECFS is how it renders useless the benefits of yoga and even makes them harmful.
Images depicting a person attempting yoga then moving into the sleeping position under a blanket and taking a nap.
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Call Me Cassandra @stitchingtwitcher.bsky.social · 26/09/2026
I would add a requirement of the simulation to be the self-gaslighting and demoralization that occurs from repeatedly attempting to get help, only to be “reassured” that nothing is wrong. And the unnecessary physical deterioration resulting from “pushing through” because we internalize the message.
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Alem Matthees @alemmatthees.bsky.social · 25/09/2026
The most insane thing about this #MECFS scandal, beyond all the suffering and neglect, is that it costs hundreds of times more in economic losses every year than it would to fund the research that could eventually decrease this burden. The degree of short-sightedness involved is astounding.
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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Alem Matthees @alemmatthees.bsky.social · 24/09/2026
(1/3) Worth remembering that the NHS clinics delivering CBT/GET generally failed to inform #MECFS patients about potential harms and typically did not record adverse events. (Aside: Patients often report there is resistance to recording harms, so we do not know the true extent of it.)
journals.sagepub.com
Sage Journals: Discover world-class research
Subscription and open access journals from Sage, the world's leading independent academic publisher.
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Alem Matthees @alemmatthees.bsky.social · 24/09/2026
(1/3) I would not repeat years of very severe #MECFS again for billions of dollars. Not just because of the ongoing difficulties, but also the risk of not surviving. Just one single day would wipe the smug and doubt off the faces of those who disbelieve. Just one single day, but there is a catch.
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sarah boothby @swastrosarah.bsky.social · 23/09/2026
theconversation.com/ignored-blam... 21 October 2024 The only change since then is the larger number of exiles. @johnthejack.bsky.social for your library
theconversation.com
Ignored, blamed, and sometimes left to die – a leading expert in ME explains the origins of a modern medical scandal
The co-lead of the world’s largest ever genetic study into ME calls for a radical change in how society deals with the disease.
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Tom Kindlon @tomkindlon.bsky.social · 23/09/2026
Ror Preston: Whilst we know the average quality of life for ME/CFS patients is amongst the very worst for chronic diseases, I think in advocacy the true disaster that is severe / very severe ME has been significantly underplayed. New @wecrunchme visual on this topic 💙 #SevereME #MEcfs #PwME 1/

Health-related quality of life declines
sharply at higher levels of ME/CFS disability
Health-related quality of life (EQ-5D-5L) for general population vs. ME/CFS by disability severity
Mean health-related quality of life (EQ-5D-5L)
1.00
0.80
0.60
0.40
0.20
0.89
ME/CFS disability severity →
0.69
95% confidence interval
O represents a health state valued as equivalent to death, with below- O representing health states considered worse than death
0.44
0.02
0.00
General Population Benchmark
Mild (n=40)
Moderate
(n=137)
Data source: Orji et al. (2024) ‘Assessing health state utilities for people with ME/CFS in Australia using the EQ-5D-5L, AQOL-8D and EQ-5D-5L-psychosocial instrument'
Severe
Notes: Disability severity levels were derived from the DePaul Symptom Questionnaire - Short Form (DSQ-SF). The study did not define a separate 'very severe' category; participants above the highest severity threshold were classified as 'severe'.
(n=19)
M
CrunchME
CC BY 4.0
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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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Alem Matthees @alemmatthees.bsky.social · 23/09/2026
Hundreds of people die everyday due to preventable deaths and medical malpractice in general. Does this contribute to compassion fatigue for the stream of people who die from complications arising from #MECFS? We are held in contempt for being ill and uninterested busy doctors prefer we disappear. 😟
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Alem Matthees @alemmatthees.bsky.social · 21/09/2026
(1/3) Whitney Dafoe's #MECFS severity scale as published by Jahanbani et al. (2024), an article inspired by Dafoe's insights into extreme ME/CFS. Creative Commons Attribution License (CC-BY). pmc.ncbi.nlm.nih.gov/articles/PMC...
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Alem Matthees @alemmatthees.bsky.social · 21/09/2026
A useful illustration by Redditor [hazelemons] from the sub-Reddit r/cfs which has received praise for its general accuracy and range of disability. (www.reddit.com/r/cfs/commen...) But very severe ME/CFS needs a graph of its own (see next post).
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Lucibee @lucibee.bsky.social · 17/09/2026
Just a wee gif I made back in the day...
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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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Alem Matthees @alemmatthees.bsky.social · 19/09/2026
Thanks everyone! Apologies for not following everyone, replying, or clicking like on everything, it has been difficult keeping up. I have spent months slowly catching up, drafting articles, creating a video, constructing illustrations. Hopefully I can post them in due course.
Happy face: Me in late 2025 when first being able to use the internet again after ~9 years of being offline due to severe chronic illness.

Doom face: Me after spending almost 12 months slowly catching up on what happened during 2017-2025.
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Alem Matthees @alemmatthees.bsky.social · 17/09/2026
Bluesky is not properly showing me all my replies I posted to @tomkindlon.bsky.social about #Pacing for #MECFS so I am creating a new thread and tagging him here. 🧵👇
bsky.app
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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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