(1/3) Today, about one week into October, marks one year since slowly regaining the ability to read after several years of being unable to read at all. In the months leading up to that, I had been forming characters out of silicone putty for carers to write words on cards that I collected.

The #PACEtrial recovery song by the late Graham McPhee uploaded to Youtube around 2014, which along with his more serious videos on the same channel, was used to argue that he was part of an organised campaign of harassment when he submitted a FOIA request for the fitness data from the PACE trial.

6: ME Recovery Song

YouTube video by MEAnalysis

youtube.com

Scary facts in #DecodeME presentation (Ponting): Stigmatised illness. Symptoms not always believed. 75% of people with #ME/CFS say they have little or no access to healthcare. One in four patients are housebound or bedbound. Across Europe, it takes nearly seven years on average to get a diagnosis.

Decoding ME: ME/CFS genetics and biomarker studies with Professor Chris Ponting, 24 September, 2026

YouTube video by ME Support

youtube.com

"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."

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

theguardian.com

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."

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.

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.

(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.

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

theguardian.com

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.

Zohran Mamdani - Wikipedia

en.wikipedia.org

(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.

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

theguardian.com

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.

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.

Kat Smith@felineforger.bsky.social · last wk.

One of the things that's most frustrating about having an "invisible" disability like ME/CFS is the judgment I get from others. I "look" fine, but you can't see I'm masking my pain and fatigue. You can't see the despair of being unable to do the simple things I used to. I "look" fine, but I'm not.

(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.

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

(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.

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.

wired.com

"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.

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.

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.

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

theguardian.com

(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.)

Sage Journals: Discover world-class research

Subscription and open access journals from Sage, the world's leading independent academic publisher.

journals.sagepub.com

(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.

theconversation.com/ignored-blam... 21 October 2024 The only change since then is the larger number of exiles. @johnthejack.bsky.social for your library

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.

theconversation.com

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/

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.

Sequence ME & Long Covid

SequenceME & Long Covid is a major new whole-genome sequencing study to understand ME and Long Covid.

actionforme.org.uk

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. 😟

(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...

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).

Just a wee gif I made back in the day...

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...

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.

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. 🧵👇