Tom's ME/CFS and Chronic Illness Page

Irish Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) patient & (amateur) advocate. Posts on ME/CFS and chronic illness/spoonie*/invisible illness.*A spoonie is somebody with a chronic illness who can relate to this analogy https://bit.ly/3MuHKLR 

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Somebody shared the following today saying: "I found this video on tiktok and it explains m.e so well" and "I saw it and thought to myself I relate so much" Here's the TikTok link: https://www.tiktok.com/@jeremyandrewdavis/video/7135061608316833070

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While views aren’t the only metric to assess the value of social media output, sometimes it’s useful to reach a significant number of people.

So I’m pleased that the extra time/energy I have been putting into my FB page is yielding results.

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News Release 8-Jul-2026 Eye problems after COVID-19 can now be explained https://www.eurekalert.org/news-releases/1134768

"Impaired pupil function was furthermore linked to headaches, difficulty reading text & in focusing the eyes"

It'd be interesting to know how many had general fatigue, PEM, etc.

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Fair: Media Won't Stop Psychologizing Long Covid

Media Won’t Stop Psychologizing Long Covid 

Media outlets that trumpet their journalistic integrity have used their prestige to launder an unproven, anti-science conspiracy theory abou

Screenshot from latest Science for ME weekly update

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NPC = Non-Player Character

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I have just watched this and thought it was good.

Emerge Australia:

Recognising #PEM early in your patients is critical for safe and ME/CFS informed care.

PEM can be hidden - patients may appear well during appointments but experience significant deterioration afterwards.

You can learn more about PEM and pacing - https://zurl.co/nnY1W

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New: "UK Long COVID and ME Doctors and Clinics"

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🧵 Another excellent blog by Fred Rossi who is well worth following

"The Patient Who Isn’t Supposed to Exist"

The Patient Who Isn’t Supposed to Exist

I taught Cognitive Behavioral Therapy (CBT) before Long COVID made me a patient. WIRED got the story exactly backward.

Nominally on the recent, controversial WIRED article but the points are pretty general.

"So the community is not a mob protecting a story. It is a population that watched a treatment paradigm hurt its own members and now flinches when the same machinery rolls out under a new name. That flinch is learned, and it was learned the hard way."

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Safer Hospital Care for Severe ME

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From @MayaLongCovid on X / @mayabee24 on IG

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From @MayaLongCovid on X / @mayabee24 on IG

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Credit to themsbloke. A high-energy video that might require pacing! He has multiple sclerosis himself rather than ME/CFS.

Note that the F word is used.

[standfortheangels]

Transcripted version below, for anyone who'd rather read than watch:

(Themsbloke plays two characters in the video, so I've just labelled them A and B, for simplicity's sake)

A: Oh my fucking god. I've just realised something incredible. If you want to erase an illness, you don't deny it exists. You rename it.

I'll take a devastating neurological illness, one that collapses immune systems, starves muscles of oxygen, scrambles blood flow to the brain, and I'll give it a name that sounds like being a bit knackered.

B: You mean...

A: Chronic Fatigue Syndrome.

B: That's unforgivable.

A: Perfect, isn't it? Because now, when people lose the ability to stand, to speak clearly, to tolerate light, sound, touch, everyone will think they just need an early fucking night!

B: What does it actually do to them?

A: It destroys them. It turns effort into poison. It makes thinking feel like lifting concrete. It makes bodies crash so hard people can't feed themselves, they can't wash, they can't remember words! Some will lie in dark rooms for years.

B: Years?

A: Decades. Children will get it. Teenagers will lose their education. Adults will lose careers, independence, homes. I'll make exertion Actively dangerous, where one walk, one conversation, one shower can cause a multi-day systemic collapse.

B: That's sadistic.

A: I'll erase it from medical textbooks. I'll defund research. I'll tell patients to Exercise, even when exercise physically harms them!

B: So, this isn't fatigue?

A: ... What did you just fucking say to me?

B: ... This isn't fatigue?

A: No. Fatigue is a warning light. This is systemic collapse. Hmm? This is the body failing to recover from efforts! This is energy that does not replenish! Huh? This is a disease where Trying makes you Worse!!

B: Why hasn't this been taken seriously?

A: Because of the name. Because once you call it 'Fatigue', you give people permission to dismiss it. Doctors stop listening, government stop funding, friends stop believing, and patients stop trusting their own reality.

B: So the label matters.

A: The label is everything. Because when you misname suffering, you mistreat it, you mismanage it, you abandon the people inside it, and ME/CFS patients have been abandoned for generations.

B: So what are they fighting for now?

A: To be believed, to be studied, and to be named fucking correctly. Because ME/CFS is not tiredness, laziness, nor a fear of effort; It's a brutal, disabling, life-altering disease. And people are still disappearing, unheard, into dark rooms because we chose a comforting lie over an accurate truth.

B: So what should we call it?

A: Myalgic Encephalomyelitis. Say it properly.

B: *fumbles, not even getting past the first M*

A: Myalgic

B: Myalgic

A: En-ceph-a-lo...

B: Encephalo

A: My-e-li-tis

B: Myelitis.

A: Myalgic Encephalomyelitis.

B: Myalgic Encephalomyelitis.

A: Good. Right! Time to invent Brain Fog!

*end credits jingle from Looney Toons plays, complete with the "That's all, folks!" written on the screen*

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Credit to themsbloke. A high-energy video that might require pacing! He has multiple sclerosis himself rather than ME/CFS.

Note that the F word is used.

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ME Respite:

"May 12th is ME Awareness Day and we take the month of May to concentrate on raising awareness around this debilitating illness."

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"Media Baffled by Wheelchair ‘Miracles’ Because They Don’t Understand Disability"

Media Baffled by Wheelchair ‘Miracles’ Because They Don’t Understand Disability

The Wall Street Journal noted that many people who use wheelchairs to board planes are “miraculously” able to walk once exiting the plane.

(Originally from earlier in the year but I thought it was worth highlighting again)

-- "Studies estimate that from 10% to 30% of people who have had Covid experience Long Covid, or chronic conditions after infection. Of these, about half have been shown to have myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), an increasingly common energy-limiting condition that leaves individuals unable to exert without impairing baseline functioning. The distance from the entrance to the gate at larger airports is about a mile, an impossible distance for many with ME/CFS. The Journal article cites how ambulatory wheelchair users have no excuse at smaller airports, given the shorter distances to the gate, but people with severe ME/CFS often struggle to climb a flight of stairs.

Additionally, up to 79% of people with Long Covid have been shown to have postural orthostatic tachycardia syndrome (POTS), a circulatory condition. POTS primarily manifests in an inability to stand upright for any substantial period of time without symptoms such as nausea and fainting, due to blood pooling and significant heart rate increases. For people with conditions like POTS, being transported through the security gate to avoid standing in a long line is not the “VIP experience” but a necessity." ---

Science for ME update summary:

“Article about ambulatory wheelchair users, a response to a Wall Street Journal article that claimed people are pretending to need wheelchairs.

Mentions Long Covid, ME CFS, & several other medical conditions as possible reasons for needing a wheelchair”

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Jordyn Blagg (@jordyn.blagg) on Threads

Remember this when you are passing any sort of judgment. Things like grocery delivery/pick up, food delivery, mail order pharmacies, etc…are