"If you are interested in organizing a protest, gathering in a park as a community or making art, please join one of our protest organizing meetings on Thursday, April 10"

Meeting 1: Thursday, 4/10, 12pm PT/3pm ET
https://us06web.zoom.us/meeting/register/EHwZzzubSpqIi31vM1VRNQ#/registration

Meeting 2: Thursday, 4/10, 3pm PT/6pm ET
https://us06web.zoom.us/meeting/register/2hriH4c1RU6VbSGbEBrjHA#/registration

Details:
https://www.meaction.net/2025/04/02/millionsmissing-2025-sending-out-an-sos/

@mecfs

Join Us for Millions Missing 2025

- (USA) Join the protest at the Capitol in Washington, D.C.
- Host your own #MillionsMissing protest or gathering
- Show up on social media on May 12th
- Get creative—create SOS art with messages directed at your government/elected officials
- Check out UK’s #MillionsMissing campaign—coming soon!

#MEcfs #PwME #LongCovid

**Tom Kindlon** @tomkindlon@disabled.social · 3d

Tom Kindlon @tomkindlon@disabled.social

Sympathetic article where 2 Australian researchers Chris Armstrong & Katherine Huang, funded by the Open Medicine Foundation @openmedf discuss their recent paper that used data from the UK biobank

https://pursuit.unimelb.edu.au/articles/We-dont-yet-know-what-causes-chronic-fatigue-syndrome,-but-were-improving-diagnosis

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Health & Medicine
Research
We don’t yet know what causes chronic fatigue syndrome, but we’re improving diagnosis
Using health factors and blood markers, researchers can now distinguish Chronic Fatigue Syndrome from other conditions for the first time – a giant step closer to formal diagnosis

Photos of Chris Armstrong & Dr Katherine Huang
Published 2 April 2025

**Anna** @halcionandon@aus.social · 3d *

3d *

Anna @halcionandon@aus.social

PLEASE HELP ME ESCAPE!

Please #boost and share to other platforms.I don’t have energy left (see below).

Seems I’m famous (and real!) and desperate enough to go to the media for help. Yes, the trapped woman in the articles below is me.

Last year:
https://www.thecanary.co/global/world-analysis/2024/05/03/me-cfs-anna-australia/

Now things are worse, I’m much sicker, being neglected and will die without a safe stable #home. Doctor’s words.

If not mentioned in the article, my father is a diagnosed #narcissist with #psychopathic & #antisocial tendencies by a #psychiatrist. He urged me get away from my father asap because he is not a ‘safe person’ & neither are the other family members who lured me back through the promise of help.They didn’t help they made me progressively worse to the point of almost incapacitation at stage of #illness.

A year later:
https://www.thecanary.co/global/world-analysis/2025/04/01/anna-severe-me-cfs/

I’ve tried every level of government, every service and they simply won’t help.

Are able help? Please ask people in real life if they have somewhere for me to go. Could they take me in (I can pay small rent)? A lot people have ‘big house, not enough money’ problem. I can help!

Is anybody an #advocate? I desperately need help.

I would be incredibly grateful for any help beyond words.

Please read articles for full information.

Thank you for reading.

Woman bed in a very dark room with ear defenders and light block glasses.

**Tom Kindlon** @tomkindlon@disabled.social · 6d

Tom Kindlon @tomkindlon@disabled.social

Registration for online participation in the International ME/CFS Conference 2025 on 12-13 May 2025 is now open

https://events.mecfs-research.org/en/events/conference_2025

Image is from the latest Science for ME weekly update

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#LongCovid #PASC #PwLC #postcovid #postcovid19 #LC #Covidlonghaulers #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC

Germany
Registration for online participation in the International ME/CFS Conference 2025 on 12-13 May 2025 is now open. The conference will be centred on the care, research, and treatment of ME/CFS and post-COVID syndrome. It is funded and organised by the German ME/CFS Research Foundation and will take place as an online livestream broadcast from the Harnack House of the Max Planck Society in Berlin.

Continued thread

**Tom Kindlon** @tomkindlon@disabled.social · Mar 21

Mar 21

Tom Kindlon @tomkindlon@disabled.social

“They see [in the research data] that very few of the patients were well enough to work again, even nine years after diagnosis. These are disappointing results, but unfortunately not particularly surprising.”

#MEcfs #PwME #CFS
@mecfs

**Tom Kindlon** @tomkindlon@disabled.social · Mar 21

Mar 21

Tom Kindlon @tomkindlon@disabled.social

"Almost no ME/CFS patients return to work: "The help we have provided to patients through the welfare and healthcare systems has had little rehabilitative effect," says a researcher."

https://www.sciencenorway.no/chronic-fatigue-syndrome-diseases-me/almost-no-me/cfs-patients-return-to-work/2482762

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Almost no ME/CFS patients return to work
"The help we have provided to patients through the welfare and healthcare systems has had little rehabilitative effect," says a researcher.
The Norwegian Labour and Welfare Administration requires ME/CFS patients to go through work-oriented measures in order to be granted disability benefits, which is a challenge for many patients. (Photo: Gorm Kallestad / NTB)
Emilie Wee Journalist
Published 21 March 2025 - 00:01

Continued thread

**Tom Kindlon** @tomkindlon@disabled.social · Mar 20

Mar 20

Tom Kindlon @tomkindlon@disabled.social

“For people with complex chronic diseases such as long COVID, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), and dysautonomia, a clinician’s inadvertently hurtful language can compound suffering and derail effective communication.”

#Dysautonomia #PwME #mecfs #longcovid
@mecfs @longcovid @dysautonomia

**Tom Kindlon** @tomkindlon@disabled.social · Mar 20

Mar 20

Tom Kindlon @tomkindlon@disabled.social

From Medscape (widely read by health professionals):

"What Not to Say to People With Complex Chronic Illness"

https://www.medscape.com/viewarticle/what-not-say-people-complex-chronic-illness-2025a10006ft
(may require free registration)

Continued thread

**ahimsa** @ahimsa_pdx@disabled.social · Mar 15

Mar 15

ahimsa @ahimsa_pdx@disabled.social

For examples of scientific harm done to ME/CFS patients see this video by @brokenbattery

It lists many issues, including the CDC renaming the illness in 1988 and the PACE trial, a flawed research study that has not yet been retracted:

https://www.youtube.com/watch?v=RiwX9Y0NbiQ

"George Monbiot describes the treatment of Myalgic Encephalomyelitis as 'the greatest medical scandal of the 21st century' …'"

Transcript:

https://medium.com/@abrokenbattery/me-cfs-scandal-explainer-eb4c1bfb7464#0cda

@mecfs

YouTubeME/CFS Scandal Explainer (Myalgic Encephalomyelitis/Chronic Fatigue Syndrome)By Broken Battery

#MEcfs #PwME #PACEtrial

**Tom Kindlon** @tomkindlon@disabled.social · Mar 13

Mar 13

Tom Kindlon @tomkindlon@disabled.social

(Australia-wide survey)
Are you someone who is experiencing, treating or caring for someone with ME/CFS and/or #LongCovid ?

"The Australian e-Health Research Centre at CSIRO ... is conducting a survey to understand the research priorities of the community"

Link:
https://csiro.qualtrics.com/jfe/form/SV_50apVQ5MHXTReBw

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME @longcovid
#PASC #PwLC #postcovid #postcovid19 #LC #PostCovidSyndrome #longhaulers #COVIDBrain #NeuroPASC
@auscovid19 #auscovid19

Are you living with, caring for, or treating someone with Long COVID or Myalgic Encephalitis/Chronic Fatigue Syndrome (ME/CFS)?
We want to hear from you!
The Australian E-Health Research Centre (AEHRC) and Monash University have partnered with Emerge Australia to conduct a study seeking to understand the research priorities of people living with, caring for, or treating someone with Long COVID or ME/CFS. We also want to understand the major challenges they currently face in accessing quality care.
M=
The AEHRC, Monash University and Emerge Australia are currently recruiting participants aged 18 years or older to participate in an online survey which is expected to take around 15 minutes to complete. Participants will also have the option of participating in a further interview, should they choose, expected to take around 30 minutes. The interview can be undertaken over multiple sessions is needed or via email response.
Participation is voluntary and you do not have to take part if you don't want to. You can choose to participate in only the survey if you wish.
For additional information about the project please click the link below to view the Participant Information Sheet and access the survey.
Access the information sheet and survey here
Australian e-Health
CSIRO Research Centre
MONASH University
emerge
australia
Contact Person:
Dr Alana Delaforce, Australian E-Health Research Centre, alana.delaforce@csiro.au 296 Herston Road, Herston, Qld, 4029 P: 07 3253 3647

**Fatigatio e.V.** @FatigatioeV@mastodon.social · Mar 12

Mar 12

Fatigatio e.V. @FatigatioeV@mastodon.social

Eine Vertretung des Fatigatio e.V. war aktiv am #Partizipationsprozess (u.a. Workshops) beteiligt, um die Versorgung von Betroffenen zu verbessern. Ziel: Gemeinsame Lösungsfindung für eine bessere Versorgung von Kindern & Jugendlichen.

Fokus-Thema hier: Entwicklung spezialisierter #PAIS-Zentren für vernetzte, interdisziplinäre Behandlungen.

Insgesamt wurden 9 gemeinsam entwickelte Handlungsansätze kürzlich an das #BMG übergeben.

#MECFS #severeME #pwME

Alle Infos dazu: https://www.fatigatio.de/aktuelles/detail/bmg-initiative-partizipationsprozess-versorgung-kinder-und-jugendliche-long-covid-me-cfs

www.fatigatio.deBericht zu BMG-Initiative Long COVID bei Kindern und JugendlichenBericht des Fatigatio e.V. über den Beteiligungsprozess des Bundesgesundheitsministeriums zur Verbesserung der Versorgung von Kindern und Jugendlichen mit Long COVID, ME/CFS und ähnlichen Erkrankungen. Vorstellung der Workshops und der neun zentralen Handlungsansätzen.

**illmarks** @illmarks@www.illmarks.com · Mar 12 *

Mar 12 *

illmarks @illmarks@www.illmarks.com

Treatment: The ER’s Embrace

https://www.illmarks.com/treatment-the-ers-embrace/

the creme bookmark with an outline of a person has the figure drawn in dark teal ink, with varying line widths. Attached to the figure are light blue iridescent medical equipment: a blood pressure cuff, finger pulse oximeter, and five electrodes placed on the figure's chest. From each of these pieces of equipment flow dark purple cables, which wrap around the figure's limbs in flowing loops and curls. Each piece has two cables, a thick cable and a thin cable, which sometimes loop over each other. There's a sort of hyper-stylized aesthetic to the cables, where they feel more like comforting embracing ribbons rather than restrictive or claustrophobic.

#bodyHorror #bodyMapping #chronicIllness

**Deer Witch Nyx** @moss@kind.social · Mar 10 *

Mar 10 *

Deer Witch Nyx @moss@kind.social

Working on a few concepts for the upcoming long COVID gallery exhibit , and it’s really really nice to give my brain some design challenges.

That said, it’s really hard to make my brain stop ideating and problem solving when it’s time to rest. :/

Anyone with ME/CFS have tips on the latter? #longcovid #pwME #MECFS

**David Bridger** @DavidBridger@mastodon.social · Mar 10

Mar 10

David Bridger @DavidBridger@mastodon.social

There is a certain person who I wish would understand that I'm not hurting horribly because I don't move enough. It's the other way around - I can't move as much as I'd like because I'm hurting horribly. This is especially irritating because the person knows that before I got ill I was an endurance athlete. #pwME #ME #arthritis

Continued thread

**Tom Kindlon** @tomkindlon@disabled.social · Mar 8

Mar 8

Tom Kindlon @tomkindlon@disabled.social

“Despite its widespread impact, up to 90% of people with ME/CFS remain undiagnosed, often after years of searching for answers.”

#PwME #ChronicFatigueSyndrome
#mecfs @mecfs

**Tom Kindlon** @tomkindlon@disabled.social · Mar 8

Mar 8

Tom Kindlon @tomkindlon@disabled.social

"Far From Rare: A Common Disease Hidden in Plain Sight: Why ME/CFS Needs to be Recognized Now"

https://batemanhornecenter.org/a-common-disease-hidden-in-plain-sight/

Comment: While there is possibly nothing new here for many of us, I think it does summarise a lot of the important issues in the field

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Far From Rare: A Common Disease Hidden in Plain SightA busy city street filled with vibrant, detailed figures engaged in daily activities, while a few individuals appear semi-transparent or fading into the background. These ghostly figures symbolize the invisibility of people with ME/CFS

Why ME/CFS Needs to be Recognized Now

February often brings conversations about rare diseases—conditions affecting fewer than 200,000 people in the U.S. ME/CFS doesn’t fit that definition. Yet, we chose to highlight it during Rare Disease Month not because it is rare, but because it remains rarely acknowledged, underserved, and underfunded in both the medical and research communities.

With an estimated 5 to 9 million people affected in the U.S. alone—and many more meeting diagnostic criteria following COVID-19—ME/CFS is far from uncommon. The real challenge isn’t how many people have it, but how often it is misunderstood, overlooked, and left out of mainstream medical care.

Image of lots of people standing in a city street

**Tom Kindlon** @tomkindlon@disabled.social · Mar 8

Mar 8

Tom Kindlon @tomkindlon@disabled.social

Remembering ME activist (& my friend) Robert "Bob" Courtney, who passed away on March 7, 2018.

This is from the @MEAssociation magazine

One can read about some of the specifics of Bob's work here: http://me-pedia.org/wiki/Robert_Courtney

#MyalgicEncephalomyelitis #MEcfs #CFS #MyalgicE #PwME #ME @mecfs

Screenshot of ME Association article/obituary on Robert Courtney

**Tom Kindlon** @tomkindlon@disabled.social · Mar 7

Mar 7

Tom Kindlon @tomkindlon@disabled.social

Good, indepth reporting. If a centralised system to report harms from nonpharmalogical interventions could be brought in, it'd be great progress. Well done to @mefoggydog.bsky.social for continuing to campaign on this important issue.

https://www.thecanary.co/uk/analysis/2025/03/02/me-cfs-discredited-treatments/

Audio available

@mecfs
#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

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