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@actionforme.bsky.socialSep 18, 2026, 8:00 AM

⏰ Our AGM is next week!

Join us online on Tuesday 22nd Sept from 2pm–3pm to hear about Action for ME's work over the past year and our future priorities.

There's still time to register: us02web.zoom.us/webinar/regi...

#MECFS #pwME #MyalgicE #MyalgicEncephalomyelitis

Action for ME logo followed by stamp saying "Final reminder". Text below reads "Annual General Meeting. Last Chance to register. Hear about our organisation's activities and acheivements over the past year and look ahead with us to future priorities. Tuesday 22nd September 2026 2-3pm Online - Zoom.
@anilvanderzee.bsky.socialSep 17, 2026, 6:37 PM

Vanaf vandaag is deze hand-out mét stappenplan ter ondersteuning van patiënten met post-acuut infectieuze ziektes gratis te downloaden via:

www.devragendokter.nl/webshop/prod...

#pwme #myalgicE #millionsmissing #severeME #LongCovid #lyme #QVS #postsepsis #PAIZ #PAIS #IACC

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@actionforme.bsky.socialSep 16, 2026, 4:00 PM

We’re attending the NHS Scotland Event 2026 and ALLIANCE Connect networking next week to share Learn about ME free resources for healthcare professionals.

More info: www.actionforme.org.uk/learn-about-...

@alliancescot.bsky.social #LearnAboutME #NHSScotlandEvent #MyalgicE

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@anilvanderzee.bsky.socialSep 16, 2026, 1:07 PM

Ties en Siem (5 en 10) lopen voor hun zieke moeder met ME.

Steunen jullie deze helden en daarmee ook biomedisch onderzoek?

supporta.com/optw/1gjwl4v...

#pwme #myalgicE #severeME #MEcvs #PAIZ #PAIS #IACI #IACC #MillionsMissing

@anilvanderzee.bsky.socialSep 16, 2026, 10:55 AM

My illness is not part of my identity.

Some late‑night, off‑the‑cuff rambling about the notion that some people make their illness part of their identity.

This was partly in response to that Telegraph article.

#pwme #myalgicE #millionsmissing

youtu.be/zFwaPS5c6RI?...

@meassociation.org.ukSep 16, 2026, 9:30 AM

Last Friday, MEA Associate Trustee, Nicki Strong, attended a private viewing event at the Royal Opera House for the I Would Be There If I Could arts project.

Find out more about the event: https://meassociation.org.uk/bp30

#MECFS #pwME #MyalgicE #LongCovid #IWouldBeThereIfICould #Mirrorbox

IMAGE DESCRIPTION: Photo of Nicki Strong, MEA Associate Trustee, stood in front of the Mirrorbox in the Royal Opera House foyer. Heading: "I Would Be Here If I Could: ME Association Trustee attends The Mirrorbox Journey event at the Royal Opera House"
@meassociation.org.ukSep 15, 2026, 10:46 AM

Research: MedRXiv Preprint: Seven replicated genomic associations of ME/CFS

This genome wide association study involved 1268 people with ME/CFS and healthy controls who were obtained from the UK Biobank.

Read more: https://meassociation.org.uk/7a28

#MECFS #pwME #MyalgicE #Research

@tomkindlon.bsky.socialSep 14, 2026, 12:18 AM

The Hidden Hierarchy of Illness

journals.sagepub.com/doi/full/10....

Screenshot from September AMMES newsletter

#MEcfs #PwME #CFS #ME #MyalgicE

Photo of a man with his head in his hand with the following text The Hidden Hierarchy of Illness "As a rehabilitation physician working closely with patients with long-standing ME/CFS and functional disorders, I have repeatedly been struck by a paradox that is difficult to forget. Several patients whom I had followed for years, disabled by profound fatigue, cognitive dysfunction, and loss of function, were later found to have incidental MRI findings that supported a diagnosis of multiple sclerosis. Each time, I expected devastation. Instead, more than one patient told me that the day they were given the diagnosis of MS was ‘the best day of my life’. Not because their suffering had changed, but because, for the first time, it had become legitimate. They were no longer exhausted without cause, disabled without explanation, or ill without status. They had crossed an invisible threshold from a condition that required justification into one that commanded recognition." Read more here>>
@tomkindlon.bsky.socialSep 14, 2026, 12:13 AM

Trial By Error: Norway Disability Case Exposes Flaws in Draft Guideline for “Long-Term Fatigue–including ME/CFS”

virology.ws/2026/03/13/t...

Screenshot from September AMMES newsletter

#MEcfs #PwME #CFS #ME #MyalgicE

Image of somebody looking out over a long pier into an area of water Trial By Error: Norway Disability Case Exposes Flaws in Draft Guideline for “Long-Term Fatigue–including ME/CFS” The Norwegian ME Association recently posted an account by Schei of a hearing involving a young man’s effort to obtain disability benefits. The account makes for troubling reading. As Schei notes, “the case provided frightening perspectives on Nav’s view of ME”—specifically, that “the prognosis for ME was good, and that recovery from ME was about faith and hope and motivation.” Given that, any failure to get better can be interpreted as the patient’s fault. Read more here>>
@actionforme.bsky.socialSep 13, 2026, 8:00 AM

Good luck to all our fantastic Action for ME runners taking on the #GreatNorthRun this Sunday! 🏃

Every pound raised helps us support people with ME, campaign for change and bolster research.

Feeling inspired? Join our 2027 team 👇
www.actionforme.org.uk/great-north-...
#Fundraising #MyalgicE

A participant in an Action for ME running vest takes part in a large road race surrounded by other runners. The Action for ME logo appears in the top corner. Overlaid text reads: “Wishing the best of luck to our fundraisers taking part in the Great North Run on Sunday!” A participant wearing an Action for ME running vest takes part in a road race with other runners in the background. Text reads: “Join Team Action for ME to fundraise for us at the 2027 Great North Run. Applications close Friday 26th Feb 2027. Raise funds for Action for ME..."
@anilvanderzee.bsky.socialSep 12, 2026, 5:58 PM

Mijn reactie op een uit de duim gezogen stressmodel voor "CVS" in Medisch Contact.

www.linkedin.com/posts/anilva...

#pwme #myalgicE #millionsmissing #severeME #MEcvs

@madelinenerd.bsky.socialSep 12, 2026, 12:20 AM

New podcast ep: Grace
open.spotify.com/episode/4u4m...

This ep instigated by Rewatching a doc about #GanderNewfoundland on 9/11 on top of the fact I was already musing about Grace and I grew up in #Newfoundland

#disability #myalgicE #LONGCOVID #Canada #bcpoli #canpoli

@anilvanderzee.bsky.socialSep 10, 2026, 2:41 PM

For World Suicide Prevention Day. Adult patients affected by ME are at an increased risk of death by suicide, but as a health care professional you can help instead of harm.

#pwme #myalgicE #millionsmissing #severeME #suicidepreventionday

www.mdpi.com/2227-9032/9/...

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@tomkindlon.bsky.socialSep 8, 2026, 4:06 PM

10/
What cognitive dysfunction (brain fog) in ME/CFS feels like

#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME

COGNITIVE DYSFUNCTION (BRAIN FOG) IN ME/CFS "It is like my IQ dropped 40 points. I used to be intelligent, but now I don't understand simple things anymore. I feel so stupid and insecure because of this. I have to check everything I do to see if it is correct." R ElidU CH SCO36942 INFORM. INFLUENCE. INVEST.
@tomkindlon.bsky.socialSep 8, 2026, 2:39 PM

9/
What cognitive dysfunction (brain fog) in ME/CFS feels like

#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME

COGNITIVE DYSFUNCTION (BRAIN FOG) IN ME/CFS "I lose words - just can't find them. I also lose the ability to form sentences and speak properly when I've "overdone' it. Overdoing it is always something very small - like talking too long with friends or standing up too long washing-up etc...." Lith RESLEJAIICH SCO36942 INFORM. INFLUENCE. INVEST.
@tomkindlon.bsky.socialSep 8, 2026, 1:27 PM

9/
Impact of cognitive dysfunction in ME/CFS from ME Research UK

Careers are impacted, cherished hobbies become exhausting, and relationships grow strained.

www.meresearch.org.uk/the-experien...

#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
#MyalgicE #CFSME

Impact of cognitive dysfunction (brain fog) in ME/CFS "My PhD and academic career are on long term hiatus because of ME/CFS, and one of the biggest factors is the brain fog. I cannot properly concentrate on anything that requires actual brain input for more than 20 minutes before both my mind and body shut down and I am useless for hours following..." Response from ME Research UK Symptom Saturday Cognitive Dysfunction Survey aldrA RESEARCH UK SCO36942 INFORM. INFLUENCE. INVEST.
@tomkindlon.bsky.socialSep 8, 2026, 10:01 AM

8/
What cognitive dysfunction (brain fog) in ME/CFS feels like

#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME

COGNITIVE DYSFUNCTION (BRAIN FOG) IN ME/CFS R6IESOArH SCO36942 "Head full of cotton wool." INFORM. INFLUENCE. INVEST.
@tomkindlon.bsky.socialSep 7, 2026, 10:37 PM

8/
Impact of cognitive dysfunction in ME/CFS from ME Research UK

Careers are impacted, cherished hobbies become exhausting, and relationships grow strained.

www.meresearch.org.uk/the-experien...

#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
#MyalgicE #CFSME

Impact of cognitive dysfunction (brain fog) in ME/CFS "My family are used to it, after 20 years. They just help me as much as possible. I am very grateful for them. If I am out, it is more obvious that I struggle. When I talk to people, and can't find words, or say something wrong, I get looks of pity, or confusion. I really don't like the looks of pity." Response from ME Research UK Symptom Saturday Cognitive Dysfunction Survey tri RESEARCH UK SCO36942 INFORM. INFLUENCE. INVEST.
@tomkindlon.bsky.socialSep 7, 2026, 8:35 PM

7/
What cognitive dysfunction (brain fog) in ME/CFS feels like

#BrainFog #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #MyalgicE #CFSME

COGNITIVE DYSFUNCTION (BRAIN FOG) IN ME/CFS "Sometimes it's like an invisible pause button has been pressed in my brain, and I just can't think anymore. Other times it's like a sense of static in my brain, and I can't think clearly until I sit or lie down to recover. If I don't rest my brain, it leads to me stuttering and or increased stilted speech..." 611% R ES,EjAik C H SCO36942 INFORM. INFLUENCE. INVEST.
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