PZ

Do you all think it’s inhumane to leave people rotting in bed (literally, not metaphorically)? Im talking about people who cannot tolerate light and sound, and maybe even touch. People who can’t drink or chew on their own. For decades.

If so then you should look up Myalgic Encephalomyelitis.

The key is "by themselves"...

You could just look it up instead of choosing to be ignorant

They Do Not Exist ⭐️⭐️⭐️⭐️ The Things You Kill ⭐️⭐️⭐️½ HappyEnd ⭐️⭐️⭐️⭐️ Manas ⭐️⭐️⭐️⭐️½

#LetterboxdFriday
#LastFourWatched 🎞

"Labour govt commissions report from (hench)man who will deliver desired outcome"

The truth of the matter is: anyone you know living with ME/CFS is one of the bravest mofos you know

Abusive assholes don't have the strength of character and heart to be able to endure an illness like this; they'd crumble within their first week of having it.

Still no response to people with ME who have reached out and asked you to revise the incorrect information in your piece...

Donate to Help Save Richard from Permanent Brain Damage, organized by Birgitta Abrahamsson Help Save Richard from Permanent Brain Damage My son Richard ha… Birgitta Abrahamsson needs your support for Help Save Richard from Permanent Brain Damage

I know I’m not really here much (I check messages/notifications though), but I wanted to share the gofundme of someone in the ME community.

This is urgent life or death. I don’t have much energy to promote this, but I hope you all will take up the cause:

gofund.me/8da0ebb46

Honestly sometimes I get why people have a hard time believing people with #MECFS.

The mechanics are so ridiculous.

“What do you mean the vibrations from a car ride can crash you?!?”

if you really knew what moderate--severe--very-severe ME/CFS was like, you would be screaming on our behalf. you would not stop screaming. there are no social supports and no medical treatments. the situation is so much more dire than you can possibly imagine

...controversy - and ME has plenty of it - but no one wants to go near it.

#MyalgicEncephalomyelitis
#pwME
#MillionsMissing
#GreatestMEdicalScandal

...career and now can't work anymore.

Nothing about why there are no treatments, how many are bedbound, how difficult it is to access insurance or benefits due to misleading guidelines, and most importantly, the historical reasons why we are in this situation.

Media usually love a scandal and...

...our medical institutions here (in Australia), who still recommend exercise therapy.

No interest. She wanted to do more personal interest stories. I opted out.

She ran the type of article we've all seen before - person in their dressing gown in their kitchen, describing how they had a great...

A couple of years ago I was in touch with a journalist and I tried to pitch to her the story of Alem Matthees, the work he had contributed to uncovering the PACE trial fraud and how he had become more devastatingly ill in the process.

I also said we needed someone asking the hard questions to...

People with mild ME/Long Covid & people who have recovered, please start advocating for the most severe instead of mildwashing the disease & using your story to sell your personal projects while feeding the media narrative of “individual overcoming” 🙏

You've said it so well.
We just keep being buried. Literally and figuratively.

Would there be actually any time at all deemed "right" to finally look at us? For media and medicine to say MYALGIC ENCEPHALOMYELITIS without bias, shame or minimisation?

#pwME
#GreatestMEdicalScandal

💯

And we know that in many cases, we are battling against a well resourced and organised lobby.

But other times we are just dealing with straight ignorance, laziness and a resistance to challenging one's own biases.

Whether it's using the term "Chronic Fatigue Syndrome", describing the illness as due to fatigue or tiredness, propagating wellness cures, or making passive aggressive swipes at the patient community - it is extremely rare to come across a mainstream media piece that gets it right.

It's 2025, 6 years into a pandemic that has caused an epidemic of new cases of #MECFS.

There have never been so many advocacy orgs and quality resources available to inform on MECFS.

And still, media pieces that mention #MyalgicEncephalomyelitis are misinformed and incorrect.

#pwME

I had taken a break from posting, and that Guardian article is a really good example of why.

I can't handle that the main avenue to connect with other pwME & researchers, and keep up to date on current affairs is via this little anger box in my hand.

Out of patience. 0 tolerance for ME misinfo.

⬇️
bsky.app/profile/notu...

The information on MECFS in this piece is incorrect.

To say "GET is challenged by some patient groups" without mentioning the reported harms by patients, the NICE guidelines, and the increasing evidence through research that pwME have abnormal response to exertion, is a great disservice to pwME.

1. That's not what I'm referring to.

2. I said what I said.

Incidence and Prevalence of Post-COVID-19 Myalgic Encephalomyelitis: A Report from the Observational RECOVER-Adult Study - Journal of General Internal Medicine Background Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) may occur after infection. How often people develop ME/CFS after SARS-CoV-2 infection is unknown. Objective To determine the incidence and prevalence of post-COVID-19 ME/CFS among adults enrolled in the Researching COVID to Enhance Recovery (RECOVER-Adult) study. Design, Setting, and Participants RECOVER-Adult is a longitudinal observational cohort study conducted across the U.S. We included participants who had a study visit at least 6 months after infection and had no pre-existing ME/CFS, grouped as (1) acute infected, enrolled within 30 days of infection or enrolled as uninfected who became infected (n=4515); (2) post-acute infected, enrolled greater than 30 days after infection (n=7270); and (3) uninfected (1439). Measurements Incidence rate and prevalence of post-COVID-19 ME/CFS based on the 2015 Institute of Medicine ME/CFS clinical diagnostic criteria. Results The incidence rate of ME/CFS in participants followed from time of SARS-CoV-2 infection was 2.66 (95% CI 2.63–2.70) per 100 person-years while the rate in matched uninfected participants was 0.93 (95% CI 0.91–10.95) per 100 person-years: a hazard ratio of 4.93 (95% CI 3.62–6.71). The proportion of all RECOVER-Adult participants that met criteria for ME/CFS following SARS-CoV-2 infection was 4.5% (531 of 11,785) compared to 0.6% (9 of 1439) in uninfected participants. Post-exertional malaise was the most common ME/CFS symptom in infected participants (24.0%, 2830 of 11,785). Most participants with post-COVID-19 ME/CFS also met RECOVER criteria for long COVID (88.7%, 471 of 531). Limitations The ME/CFS clinical diagnostic criteria uses self-reported symptoms. Symptoms can wax and wane. Conclusion ME/CFS is a diagnosable sequela that develops at an increased rate following SARS-CoV-2 infection. RECOVER provides an unprecedented opportunity to study post-COVID-19 ME/CFS.

...outcome of a C19 infection.

link.springer.com/article/10.1...

Your information on MECFS is incorrect and a real disservice to people living with the disease. Please seek out information from experts such as @batemanhornecenter.bsky.social @meactionuk.bsky.social @meactnet.bsky.social and revise those parts of your piece.

Further - MECFS is a potential...

Anyway, it's great to see one of the UK Long Covid charities sharing this quote without any correction... 🙃

Not just misinformation but the way it is inferred that MECFS is some sort of lesser diagnosis 🫠

The 2021 NICE guidelines state
"Do not offer people with ME/CFS:

- any therapy based on physical activity or exercise as a cure for ME/CFS

- generalised physical activity or exercise programmes"

(i.e. graded exercise therapy).