Elisabeth Klaar | Oak Tree Studio

Patientin hat geklagt: Gericht prangert ME/CFS-Gutachter an und hebt Urteil auf Eine ME/CFS-Patientin hat gegen den Entzug des Rehageldes geklagt – und vom Oberlandesgericht Wien Recht bekommen. Im OLG-Beschluss wird die Arbeitsweise von Gutachtern massiv kritisiert.

An Austrian ME/CFS patient sued against the withdrawal of her allowance. Vienna Higher Regional Court has ruled in her favour,criticizing the methods of experts who reviewed the case & dismissed the D-A-CH consensus statement on #MECFS

Translation
www-kleinezeitung-at.translate.goog/lebensart/ge...

An employer who doesn't know the absolute basics of how disability is defined in employment and discrimination law. Massive surprise... 🙄

‘If you’re disabled, you’re not ill.’
Sir Charlie Mayfield (author of the Keep Britain Working review)

This is who’s shaping UK disability employment policy. Shocking, he doesn’t even understand the basics.

I’m disabled because I’m chronically ill with #MECFS.

At the #ICanCME2025 conference today!

Sabrina Poirier & Maeghan Taverner's intros blew me away.

~Acknowledging labor from people with lived experience
~Setting out expectations
~Moment of silence for those we've lost

This is what a conference designed by people with lived experience looks like 🧪

Dr Clare Gerada has been appointed a crossbench peer in the House of Lords and is now a baroness — I’ve put together a short thread about her involvement in #MECFS.

twitter-thread.com/t/1981309222...

“We Can’t Do This Alone”: A Doctor’s Plea for Support in Caring for Long COVID and ME/CFS Patients As a pediatrician and infectious disease specialist, my days are full.

“We Can’t Do This Alone”: A Doctor’s Plea for Support in Caring for Long COVID and ME/CFS Patients

danilobuonsenso.substack.com/p/we-cant-do...

October International Research and Advocacy Roundup Our International Roundup provides a brief snapshot of some of the ME/CFS and long COVID research funding, clinical care and advocacy actions around the world. In the last few months topics include; UK National Institute for Health and Care Research (NIHR) is seeking applications for research to accelerate the treatment and management of long COVID and ME/CFS. The grant of up to £200,000 will fund the development of a Phase 2 platform trial that can test multiple repurposed medications. The Netherlands Organisation for Health Research and Development (ZonMw) has funded 7 new ME/CFS research projects in the second round of its funding grants. A requirement for the funding is that the projects involve collaboration and are focussed on biomedical aspects of the condition. The World ME Alliance has published a very brief guide: Supporting People with Severe and Very Severe ME/CFS: A Resource Guide for Clinicians. The guide was developed in partnership with the Severe ME Advocacy group and is available in both English and French. #MEAction published a gallery of art produced by people living with severe ME/CFS for Severe ME Day. The Severe ME Artists Project included over 100 submissions in a wide range of mediums, including painting, digital art, video, and writing. FULL OCTOBER INTERNATIONAL ROUNDUP

October International Research and Advocacy Roundup

emerge.org.au/news/october...

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid

This was submitted February 2024! www.nature.com/articles/s41...

Just dealing with an ME enquiry: a lot of people understandably want to know what they can do to help improve their health. But people also need to try to avoid making themselves worse. Pretty obvious for long-term patients, but can be an awkward topic to bring up.

#MEcfs #PwME #CFS

Thank you 🙏 @georgemonbiot.bsky.social

Here’s an interview with George and @davetuller1.bsky.social to learn more…!

m.youtube.com/watch?v=SpLM...

Open Letter to the BACP magazine Therapy Today is the flagship members' publication of the British Association of Counselling and Psychotherapy. Getting a long, in depth article in there is a big deal and reaches a lot of therapists. The September issue included a long article about chronic illness, and much of it was good. The section on ME/CFS was, however, really disappointing. It platformed outdated and unscientific 'mind body' solutions, 'trauma' as an underlying cause, etc. A group of therapists and others came together with Chronic Living Therapy and wrote an Open Letter to the Editor. We've not yet had an acknowledgement, but it's published on our website. You can read it and drop me a line to be added if you wish to sign: Open Letter to the Editor, Therapy Today

From the September 2025 Chronic Living @chronicliving123.bsky.social Therapy newsletter

Open Letter to the British Association of Counselling & Psychotherapy (BACP) magazine by @lammasleaves.bsky.social et al

chroniclivingtherapy.com/open-letter-...

#MyalgicEncephalomyelitis #MEcfs #CFS #PwME

A purple background reads, “The Sick Times newsletter. Reporting on the Long COVID crisis. Long COVID research updates. COVID-19 trends. Personal essays from disabled writers. Health and science expert Q&As. thesicktimes.org/newsletter.” At the top is an illustration of a Caladrius delivering some mail. On the right is a black and white photo of a woman browsing the internet on her laptop.

It can feel lonely navigating the #LongCOVID crisis. We report on this common, life-changing disease that affects over 400 million people worldwide.

Sign up for our newsletter and join others who want fact-based news without COVID-19 denial, minimizing, or gaslighting. thesicktimes.org/newsletter/

Sounds promising. (So long as they don’t go the graded exercise /psychology route)

@cambridgeindy.bsky.social is pretty good...

The image is a graphic depiction of an airport terminal clouded in a pink gas with people coughing. The title says - ‘If it looks like CS gas... and smells like CS gas...’ The caption says ‘...it must be Mass Hysteria!’ At the bottom Wise Cat us saying “As science expands you'd think that educated people would know better than to fill any gaps in their knowledge with psychobabble!’ The cartoon maker is #FanningTheFlames

20 people were injured at Heathrow airport on Monday+the Usual Suspects suggested the event may have been a Mass Hysteria/Mass Psychogenic Event as people caught ‘THE IDEA OF ILLNESS’ from each other

People with #ME #LC will be familiar with this nonsense

The REAL cause turned out to be CS gas 🤦‍♀️

This blog post looks at how the medical condition M.E. is portrayed in photographs and illustrations that accompany newspaper, magazine and website articles about it. There are suggestions for how to find realistic images, and links to curated collections of images that may be useful. We also share some tips for photographers wishing to contribute relevant images to popular online photo libraries. Finally we take a quick look at resources for visualising data, in the context of M.E. This post contains the following sections (click to jump down the page to the section you are interested in): Issues with inaccurate images of M.E. in the media Reality of life with M.E. What alternatives are available to journalists, picture editors, bloggers and charities? Pictures that realistically portray M.E. (includes links to collections/albums of examples) Licensing info for Unsplash and Istockphoto Adding images to Unsplash and Istockphoto – links/info about how to contribute your own images Image request list! The start of a wish list of images I’d like to see more of… Adding the right words to your image when adding it to image libraries Using graphics / visualising data about M.E. – featuring CrunchME Issues with images of M.E. in the media

Useful new blog post by @lammasleaves.bsky.social :
"Picturing M.E."

oaktreestudio.co.uk/2025/09/04/p...

Includes photos and images "that realistically portray M.E. (includes links to collections/albums of examples)"

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

M.E., ME/CFS photos A collection of photos that could reasonably be used to illustrate articles about M.E. (Myalgic Encephalomyelitis), sometimes known as MECFS, and (outdated term) Chronic Fatigue Syndrome. Please connect if you'd like to suggest images for inclusion. Go to EMK KME's profile EMK KME 93 images

New resource:

"A collection of photos that could reasonably be used to illustrate articles about M.E. ( #MyalgicEncephalomyelitis), sometimes known as MECFS, & (outdated term) #ChronicFatigueSyndrome" from @lammasleaves.bsky.social

unsplash.com/collections/...

#MEcfs #CFS #PwME

*cut first for
Please @bsky.app could you give us an edit button? I hate my typos

I understand gaps will be filled and corrections made in due course to allow #pwME to avoid #PEM by living at a less breakneck speed than legal deadlines permit. This is the type of reasonable adjustment needed to include patients & family carers in any activity for intended for their benefit.
2/2

I am proud to endorse this initiative, with thanks to the very many people made unwell by medical neglect of #ME who never give up, no matter how difficult it is to continue.
This fundraiser goes live 7pm BST 29 August 2025. #Justice4ME www.crowdjustice.com/case/justice... 1/2

On behalf of all MECFS sufferers - here and gone - thank you to whoever is taking this action.

Donate if you can 💙🕊️

Holding What Has No Meaning Almost two years ago, on the winter solstice, I was given the most terrible honor of my life: My dear friend Beth Mazur chose to end her life while visiting me.

Almost two years ago, our beloved, brilliant #bethmazur ended her life while visiting me. The grief has softened with time, but the impact has reshaped me. I've written about it here: jrehmeyer.substack.com/p/holding-wh...

This is why pwME get so upset when newcomers to the field don’t engage existing experts. We have lost so, so much time, and critical information, to people who refuse to build on existing knowledge.

Covid accelerates vascular aging
An 18-country, 38-center study of ~2,000 participants
—Effect predominantly in women, adding 5 years of aging
—Seen with non-hospitalized and mild-moderate Covid
—Reversible in some at 1-year; vaccination link to protection
apps.crossref.org/pendingpub/p...

Photo of Sian Leary, from DecodeME patient and public involvement, next to the quote: "Having been on the Patient and Public Involvement Steering Group for the past 5 years, I want to celebrate this moment, but also to acknowledge the intense suffering pwME continue to endure. This study gives each of us validation that too often has been missing from healthcare professionals and close ones. We are a significant step closer to identifying the causes of ME, and to finding treatments."

“I am proud that this study was run differently, with lived experience at its heart. Proud that our community stepped up en masse to participate, and proud that we are at the forefront of scientific research into this debilitating illness.” - Sian Leary, DecodeME PPI

Thank you to the thousands of people with Severe ME who have taken the time and energy to participate in DecodeME #SevereMEDay

Today is #SevereMEDay - a day to recognise and honour the people living with the most devastating forms of Myalgic Encephalomyelitis (ME).

We are deeply grateful to those with Severe ME who took part in the DecodeME study. Your contribution is vital.

YouTube video by Make Visible Podcast #18 Leading research, delivering hope: The Open Medicine Foundation’s mission with Linda Tannenbaum

As shite as it is having ME/CFS in the UK and knowing our NHS is still actively harming our severely ill community members, it's helpful to hold a little hope and appreciation for the good people advancing ME/LC science and research.

www.youtube.com/watch?v=UFJP...

Thanks Linda T and all at OMF!

@meactionuk.bsky.social @meactnet.bsky.social please boost on other platforms. We are scrambling for lawyers to get the sister out as the top priority. I am speaking with national print media this morning.