#ActionForME
LightNews LightNews
annakwood.bsky.social
Facebook reminding me this was four years ago!
And I've just made another donation to @actionforme taking the total raised to:

£873!
Screenshot of my 25 birds book
October 27, 2026 at 2:04 PM
vindeplume.bsky.social
Mrs Vin de Plume is raising money for a charity close to our hearts, #ActionForME, via a sponsored 25K walk in the Chilterns this Sept.

I’ll be Team Captain & Chief Navigator - or we’ll likely never see her again, such is her dire lack of navigational skills! 🥾🧭🤓

www.justgiving.com/page/beatrix...
Beatrix's fundraiser for Action for M.E.
Help Beatrix Clark raise money to support Action for M.E.
www.justgiving.com
August 21, 2026 at 8:11 AM
binitakane.bsky.social
A massive thank you to ActionForME and @longcovidsupport.bsky.social for inviting me to speak at today’s joint #LongCOVID and #ME All Party Parliament Group meeting, alongside Profs @daltmann.bsky.social @cgatist.bsky.social and David Strain.
May 14, 2025 at 9:07 PM
thereforme.bsky.social
We look forward to working with @actionforme over the next year to help spread the word about the APPG's work 💫

#PatientSafety #ThereForME
December 2, 2024 at 12:00 PM
solveme.bsky.social
Join us for a webinar this Wednesday with panelists from DecodeME and ActionForME to discuss their Catalyst Award-winning study on Sequence ME and Long Covid and how it could impact the search for #MECFS & #LongCovid biomarkers and subtypes.
https://ow.ly/x0fJ50YZ86w

Headshots of Prof. Chris Ponting, Sonya Chowdhury, Andy Devereux-Cooke, and Dr. Jessica Maya are featured in an ad for a webinar on ME/CFS and Long COVID biomarkers and subtypes scheduled for June 10.
June 9, 2026 at 4:56 PM
solveme.bsky.social
Join us for a webinar with panelists from DecodeME and ActionForME to discuss their Catalyst Award-winning study on Sequence ME and Long Covid and how it could impact the search for biomarkers and subtypes.
https://ow.ly/x0fJ50YZ86w
#MEAwarenessHour
Headshots of Prof. Chris Ponting, Sonya Chowdhury, Andy Devereux-Cooke, and Dr. Jessica Maya are featured in an ad for a webinar on ME/CFS and Long COVID biomarkers and subtypes scheduled for June 10.
May 27, 2026 at 7:05 PM
solveme.bsky.social
Join us for a webinar with panelists from DecodeME and ActionForME to discuss their Catalyst Award-winning study on Sequence ME and Long Covid and how it could impact the search for biomarkers and subtypes.
https://ow.ly/x0fJ50YZ86w
#MEAwarenessHour
Headshots of Prof. Chris Ponting, Sonya Chowdhury, Andy Devereux-Cooke, and Dr. Jessica Maya are featured in an ad for a webinar on ME/CFS and Long COVID biomarkers and subtypes scheduled for June 10.
May 20, 2026 at 7:05 PM
solveme.bsky.social
Join us for a webinar with panelists from DecodeME and ActionForME to discuss their Catalyst Award-winning study on Sequence ME and Long Covid and how it could impact the search for biomarkers and subtypes.
https://ow.ly/x0fJ50YZ86w
#MEAwarenessHour
Headshots of Prof. Chris Ponting, Sonya Chowdhury, Andy Devereux-Cooke, and Dr. Jessica Maya are featured in an ad for a webinar on ME/CFS and Long COVID biomarkers and subtypes scheduled for June 10.
May 13, 2026 at 7:05 PM
andrewgiffordphoto.bsky.social
My perception is potentially unfair. But I do feel I don't know what ActionForME is working towards on our behalf. I think the ME and LC community should know and inform/shape the agenda.
August 20, 2025 at 11:05 AM
andrewgiffordphoto.bsky.social
I do have concerns that ActionForME appears to be speaking for the ME & LC communities yet doesn't appear to be involving the ME or LC communities much at all. An occasional survey doesn't cut it in my book.
August 20, 2025 at 10:54 AM
meownersclub.bsky.social
#ThereForME
#ME #MEcfs #LC #PEM #ChronicIllness #ChronicIllnessMemes @WesStreeting
@theguardian.com
@davetuller1.bsky.social
#ActionForME
#Icaireland.bsky.social
#MEActionUK
#Disability
There is a drawing of a woman collapsed on the floor. The title says “it (literally) took all the strength I had” The caption says - #ME/cfs - DEFINITELY NOT ALL IN THE MIND!
May 20, 2025 at 9:20 AM
meownersclub.bsky.social
#ActionForME
#ThereForME
@WesStreeting
@theguardian.com
@davetuller1.bsky.social
@lcaireland.bsky.social
#MEActionUK
#25%MEgroup
May 19, 2025 at 2:36 PM
meownersclub.bsky.social
@pausedME @PaulRKeeble @swastrosarah @CraftyMissB @NoHealthNoFun
@c4newsteam @guardiannews @MEAdvocatesIre
@actionforme @MEFoggyDog @MEAssociation
#ChronicIllness #ChronicIllnessMemes #PEM
#ME #MEcfs #LC #POTS #MCAS #InvisibleIllness #Fibromyalgia #LymeDisease
#PostInfectiousIllness
A smart young woman with glasses and a book is talking to an exhausted woman in an armchair. The young woman is saying; “It says here that some psychiatrists believe you’re only ill because think you’re ill…” The exhausted woman is replying “If I was so powerful I could create PEM with my thoughts, I’d have thought those doctors dead and replaced them within a a research department years ago” The cartoon is by #FanningTheFlames
February 21, 2025 at 12:34 PM
meownersclub.bsky.social
A cartoon about Cochrane.

@pausedME @PaulRKeeble @swastrosarah @CraftyMissB @NoHealthNoFun
@c4newsteam @guardiannews @MEAdvocatesIre
@actionforme @MEFoggyDog @MEAssociation
#ME #MEcfs #LC #PEM #PostInfectiousIllness #ChronicIllness
#ChronicIllnessMemes
Two smug Victorian gentlemen are discussing something. The one on the left is saying “would anyone stop us if we recommended hard Labour for people with #ME? The man on the right is saying “Probably not, we’re disabling and killing patients by recommending GET anyway. The caption is a mock-up of the Cochrane symbol and it says “Cochrane-Overriding Science with BPS Compliance. The cartoon is by #FanningTheFlames
February 5, 2025 at 9:59 AM
meownersclub.bsky.social
#FanningTheFlames
@pausedME @PaulRKeeble @swastrosarah @CraftyMissB
@MEAdvocatesIre
@actionforme @MEFoggyDog @MEAssociation
#ChronicIllness #ChronicIllnessMemes #PEM
#ME #MEcfs #LC #POTS #MCAS #InvisibleIllness #Fibromyalgia #LymeDisease
#PostInfectiousIllness
There is a picture of a man with glasses, an elaborate beard, a bow tie and a pipe The heading says “WARNING SIGNS of BPSM disease in doctors” The caption says - “this doctor is unlikely to be helpful” USEFUL RESPONSE - “I see you prefer bow ties to science”
February 4, 2025 at 12:40 PM
meownersclub.bsky.social
@pausedME @PaulRKeeble @swastrosarah @CraftyMissB @NoHealthNoFun
@c4newsteam @guardiannews @MEAdvocatesIre
@actionforme @MEFoggyDog @MEAssociation

#ChronicIllness #ChronicIllnessMemes #PEM
#ME #MEcfs #LC #POTS #MCAS #InvisibleIllness #Fibromyalgia #LymeDisease
#PostInfectiousIllness
The image is of a fake notice from Cochrane Library. The heading says ‘Cochrane Library - Our Ignorance/Your Death The main message says - Cochrane Library has today endorsed the reintroduction of lobotomy for any behaviour that annoys doctors, opium cordial for childhood coughs, chloroform for asthma, and lying inside a dead whale as a cure for rheumatoid arthritis When asked: about the dubious science, The BMJ responded "We'll wait 40 years before commenting in case they're right" The cartoon is by #FanningTheFlames
January 28, 2025 at 12:41 PM
meownersclub.bsky.social
#ME #PEM ##ChronicIllness
@pausedME @PaulRKeeble @swastrosarah @FranceyME @elle_carnitine @CraftyMissB @KatyBruce108 @WWLadyMdo @NoHealthNoFun @rhymeswithvery
@ishbelfrazer @c4newsteam @guardiannews @MEAdvocatesIre
@actionforme @MEFoggyDog @MEAssociation @marilyngavrano1 @silas33
There is a pen and ink drawing a rabbit is talking to the Mad Hatter - the mad hatter has the name Cochrane on his hat band. The rabbit is looking worried and saying ‘are you ever going to produce a Cochrane Review of GET?’ The Mad Hatter is waving a hand around dismissively and has a superior look on his face. He’s saying “my dear chap, we don’t need to read the science, NICE guidelines, or the WHO a report because everyone knows that exercise is medicine” At the bottom the caption says “Has Cochrane crossed the line between laziness and murder? The cartoon creator is #FanningTheFlames
January 28, 2025 at 5:15 AM
meownersclub.bsky.social
#IYKYK
#ChronicIllness #ChronicIllnessMemes #WheelchairUsers #PEM
#ME #MEcfs #LC #POTS #MCAS #InvisibleIllness #Fibromyalgia #LymeDisease
#PostInfectiousIllness

@pausedME @PaulRKeeble @swastrosarah @CraftyMissB @c4newsteam @guardiannews @MEAdvocatesIre
@actionforme @MEFoggyDog @MEAssociation
There is an image of a young woman on the floor. She is being crushed by the letters P.E.M. and she is saying “Ooof” The caption above says “Today is a day for horizontal bad-assery…” The caption below says “…the BPS model of #ME is an elaborate web of utter bullshit”” The cartoon is made by #FanningTheFlames
January 15, 2025 at 11:19 PM
abrokenbattery.bsky.social
Clip from January 2022, @mark_bonnar appeared on Celebrity Catchphrase supporting @actionforme. He explained that he backs the charity because #MECFS is very misunderstood, very underfunded and affects several people he knows personally.
November 16, 2025 at 11:29 AM
stevefifield.bsky.social
“Thank you for writing to Munira Wilson MP regarding APPG on ME on 17th December.

Munira hopes to attend, but this will be dependent on parliamentary business and diary commitments on the day.
 
OFFICE OF MUNIRA WILSON MP 
MP for Twickenham”

@ThereForME_UK
@actionforme

#pwME
December 10, 2024 at 11:27 PM
albadocherty.bsky.social
The Monetization, and Monopolization, of Chronic Illness Health Data

Visible @visible_health is an invasive app positioning itself between 100,000+ chronically ill patients' biometric and health+ data, and those who can purchase it for way less than well-defined purposes.
Meet the experts Our scientific advisory board includes world-leading researchers and clinicians in complex chronic illnesses. Michael A Osborne Professor of Machine Learning at the University of Oxford David Putrino Professor of Rehabilitation and Human Performance at Mount Sinai, USA. Todd Davenport, DPT Scientific Advisor at Workwell Foundation, USA Suzanne Vernon, PhD Research Director at Bateman Horne Center, USA David Strain, MD Medical Advisor at ActionForME, UK Resia Pretorius Professor in Physiological Sciences, Stellenbosch University,
December 7, 2025 at 1:04 AM
ben-no.bsky.social
Weitere Möglichkeiten sind zb
Dysautonomy
⁃The Cornell Center for Enervating NeuroImmune Disease (Maureen Hansons lab)
⁃SolveME
⁃Yale center for infection and immunity (Iwasaky)
⁃Simmaron Research
⁃ME Association
⁃ActionforME
December 15, 2023 at 9:09 PM
katybrc.bsky.social
I tweeted this on X earlier

#ME orgs, charities, advocates & allies
A huge number of #pwME & #LongCovid are decamping from X to Bl🦋e Sky
In order to remain connected & relevant to those who you represent, please ensure you have accounts there
@MEAssociation @actionforme @MEActNetUK ++
#MEcfs 🦋
November 11, 2024 at 1:42 PM
apresj20.bsky.social
Les fausses accusations : un outil dangereux
70 % des signalements liés à des maladies chroniques (#CovidLong, #EM) sont abandonnés, selon @ActionforME. Pourtant, ces procédures causent des traumatismes dévastateurs pour les familles, fragilisées par le manque de reconnaissance médicale et sociale.
January 20, 2025 at 10:06 AM
swastrosarah.bsky.social
It's his position with @ActionforME that disturbs me. They almost turned the ship after Crawley 'resigned' but then, to replace Holgate, they chose him. How? Why? What is he doing there, authoring NHS e-learning modules when Dr Muirhead should be author & in a league of her own on understanding #ME
August 20, 2025 at 10:39 AM