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Elisabeth Klaar

@lammasleaves.bsky.social
104 followers 307 following 10 posts

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Reposted by Elisabeth Klaar
It's ME(Jaime) @exceedhergrasp1.bsky.social · 24/09/2026
This talk is about the association between endometriosis and mental illness. Note: 'phenotype' is whether the patient has been *diagnosed*. The diagnostic odyssey to which most people with endo are subjected means patients get dxed w/depression or anxiety regardless of symptomatic presentation.
SLIDE TITLE: How is endometriosis related to mental health?

DATA SOURCE:

UK Biobank individual level genotype and phenotype data
N=202,187 women

• Endometriosis cases: N=8,187
• Controls: N=194,000

MENTAL-HEALTH OUTCOME COUNTS:

• Depression: N=853 cases; N=39,745 controls
• Anxiety: N=495 cases; N=25,255 controls
• Eating disorders: N=33 cases; N=1,451 controls

ODDS RATIOS ASSOCIATED WITH ENDOMETRIOSIS:

• Anxiety: OR 2.70
• Eating disorders: OR 4.05
• Depression: OR 3.65

FACTORS SHOWN:

• Age
• BMI
• SES
• Menarche
• Length of cycle
• Pain
• Pain medication
• IBS

REFERENCE: JAMA Netw Open. 2023 Jan 3;6(1):e2251214

The upper-right corner contains the “From Mechanisms to Medicine 2026” logo.
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Reposted by Elisabeth Klaar
Tom Kindlon @tomkindlon.bsky.social · 19/09/2026
"On this page you will find ongoing ME/CFS clinical trials looking for participants" All currently look like they are in the US except the Open Medicine Foundation Study ME registry which is international ammes.org/clinical-tri... #MEcfs #PwME #CFS #LongCovid
Clinical Trials
On this page you will find ongoing ME/CFS clinical trials looking for participants. For more ongoing clinical trials as well as completed clinical trials go to Clinicaltrials.gov

You can read about the latest resources for investigating the causes and mechanisms of ME/CFS here: New resources for large-scale ME/CFS research

Be sure to check the Institute for Neuro-Immune Medicine for their ongoing trials.

See the Icahn School of Medicine at Mt Sinai for their ongoing trials.

See Solve’s list of clinical trials for ongoing trials.

Stanford University is recruiting for a number of ongoing research studies.

Also see this google document for a long list of ongoing Long Covid trials: https://drive.google.com/file/d/1A_KYwsDR6_vzF8hqZTMhFan56Vzw-Gno/view
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Reposted by Elisabeth Klaar
Lucibee @lucibee.bsky.social · 30/07/2026
Another issue I have found is that the modules are not easy to find on the elfh dashboard. They are only accessible if you search for them. Browser mode does not show them at all.
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Lucibee @lucibee.bsky.social · 30/07/2026
But more importantly, I don't think it should be up to patients or even the charities to be promoting these modules to healthcare staff. The Government promised that they would promote these modules. It is DHSC that should be urging Trusts to inform staff about them.
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Reposted by Elisabeth Klaar
Lucibee @lucibee.bsky.social · 30/07/2026
Thank you @meassociation.org.uk for talking about these data on their blog. meassociation.org.uk/2026/07/nhs-...
meassociation.org.uk
NHS England's ME/CFS e-Learning Modules FOI Results reveal lack of uptake - The ME Association
FOI results reveal low uptake of NHS England's ME/CFS e-learning modules. Read the findings and the ME Association's comments
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Prof. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 30/06/2026
Children w #MECFS suffer an impossible plight - from medical gaslighting to being falsely accused of child protection issues. This has to stop. Very grateful for the amazing work done by @privilegienschreck.bsky.social, @ffhambu.bsky.social and @buechnerronja.bsky.social, and to be part of the below
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Reposted by Elisabeth Klaar
Elke Hausmann @drelke.bsky.social · 15/06/2026
I'm a doctor joining the call for up-to-date scientific representation & meaningful patient engagement in Long Covid and ME. I'm proud to support the Open Letter to RCPsych, backed by 58 orgs & 1200 signatories. #HearOurVoices #RCPsychIC #LongCovid #ME
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Reposted by Elisabeth Klaar
Long Covid Advocacy @longcovidadvoc.com · 12/06/2026
🗞️ Stop Press: MON 15th - We are coordinating an outreach campaign to the Royal College of Psychiatrists Congress to ensure the community's concerns about the framing of Long Covid are heard. This is a powerful opportunity for them to #HearOurVoices Template post to C+P 👇️
Campaign infographic titled "#HearOurVoices" and "#RCPsychIC", demanding better ME and Long Covid framing from the Royal College of Psychiatrists. Left side shows a woman pushing a young woman in a wheelchair on a path. Below this, a dark block titled "1 Why?" states 58 orgs and 1200 people signed an Open Letter regarding concerns over Long Covid framing at the 2026 International Congress, noting "our concerns remain."

The main text outlines a "Social Media Campaign" with three steps: 1) JOIN community outreach on June 15th, 2) POST your story for congress attendees, 3) AMPLIFY using tags #RCPsychIC and #HearOurVoices. It provides a post template supporting up-to-date scientific representation and meaningful patient engagement. Bottom right includes a pink QR code, a link to "longcovidadvoc.com", and the "LONG COVID ADVOCACY" logo. A bright pink footer reads: "International response raises concern about Congress framing of Long Covid."
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Reposted by Elisabeth Klaar
Bettina Grande @bettinagrande.bsky.social · 30/05/2026
Wie es mit Mutter und Kind weiterging? Nina Weber berichtete weiter. Leider wirkt dieser Fall rückblickend nicht wie eine Ausnahme, sondern wie ein Warnzeichen. Wenn #MECFS #PEM oder #PAIS bei Kindern unverstanden bleiben, können Schutzsysteme selbst zur Gefahr werden. #LearnAboutME
Screenshot eines SPIEGEL-Artikels. Überschrift: „Wenn ein unbewiesener Verdacht kleben bleibt“. Unterzeile: „Inobhutnahme eines Zehnjährigen“. Im Vorschaubild ist eine Person von hinten zu sehen. Der Artikel von Nina Weber beschreibt den Fall eines an ME/CFS erkrankten Kindes, dessen Familie mit dem Vorwurf des Münchhausen-by-proxy-Syndroms konfrontiert wurde.Ausschnitt aus dem SPIEGEL-Artikel. Der Text beschreibt Münchhausen-by-proxy als eine sehr seltene und schwerwiegende psychische Störung und betont, dass außergewöhnliche Behauptungen außergewöhnlich starke Beweise erfordern. Weiter wird erwähnt, dass sich in den vorliegenden Unterlagen kein Beleg für den erhobenen Verdacht fand und stattdessen eine psychotherapeutische Stellungnahme keinerlei Hinweise auf eine entsprechende psychische Störung sah.Ausschnitt aus dem abschließenden Teil des SPIEGEL-Artikels. Dort wird berichtet, dass der Junge nach einem Gerichtsbeschluss wieder nach Hause zurückkehren konnte. Mutter und Sohn waren zuvor mehr als ein halbes Jahr getrennt. Der Text thematisiert die Belastung dieser Trennung und die Frage, welche Folgen sie für das Kind gehabt haben könnte.
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Reposted by Elisabeth Klaar
Bettina Grande @bettinagrande.bsky.social · 30/05/2026
Statt medizinischer Unterstützung Münchhausen-by-Proxy Verdacht: Das Leid und Unrecht, das Eltern und ihren an #MECFS #PEM erkrankten Kindern durch Unkenntnis, Psychologisierung und sogar Inobhutnahme widerfährt, ist ungeheuerlich. @bmg-bund.bsky.social @dorobaer.bsky.social: Aufklärung jetzt!
Grafik auf hellblauem Hintergrund. In der Mitte befindet sich ein weiß umrandetes Schild mit schwarzer Schrift. Darauf steht: „Die Mutter tut dem Kind nicht gut!“ sowie der Untertitel: „Über die Psychopathologisierung von Müttern, deren Kinder an Post COVID oder an ME/CFS erkrankt sind“. Die Grafik führt in das Thema ein, wie Mütter schwer körperlich erkrankter Kinder durch medizinische und gesellschaftliche Fehlannahmen psychologisiert oder psychiatrisiert werden können. Unten rechts steht der Copyright-Hinweis „©BettinaGrande“.Grafik auf hellblauem Hintergrund mit der Überschrift: „Wie Symptome/ das Verhalten der Kinder und Jugendlichen fehlgedeutet wird“. Über die Fläche verteilt sind weiße Notizzettel angebracht, die typische Fehldeutungen von ME/CFS- und Post-COVID-Symptomen bei Kindern und Jugendlichen zeigen. Auf den Zetteln stehen Aussagen wie: „Bewegungsmuffel“, „Faul“, „Sie ist wohl depressiv!“, „Verweichlicht…“, „Mama-Kind!“, „Da stimmt doch was zuhause nicht!“, „Pandemie-verwöhnt!“, „Zu wenig Bewegung: Mehr Sport!“ und „War sie nicht schon immer psychisch labil?“. Die Grafik verdeutlicht, wie körperliche Krankheitssymptome als Charaktereigenschaften, Erziehungsprobleme oder psychische Störungen fehlinterpretiert werden können. Unten rechts befindet sich der Copyright-Hinweis „©BettinaGrande“.
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Reposted by Elisabeth Klaar
Tessa Munt MP 🔶 @tessamunt.bsky.social · 12/05/2026
I’m so aware that #WorldMEDay is painful for many, bringing home how tough it is to have #ME, and the seeming lack of progress. Please be reassured that many of us in Parliament do care, and are working at bringing about meaningful change. Change is inevitably slow, but I’m really encouraged.
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Reposted by Elisabeth Klaar
Lucibee @lucibee.bsky.social · 11/05/2026
This is why the UK Government *urgently* needs to put together a comprehensive plan for the treatment of people with severe/very severe ME in hospital. That means specialist centres of excellence that can disseminate knowledge to *all* hospitals in the UK. #MEAwarenessWeek #SevereMErgency
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Elisabeth Klaar @lammasleaves.bsky.social · 25/04/2026
#LongCovid protesters in France bring much-needed ACT-UP energy to the campaign for funds to be focused on biomedical research and not pseudoscience that claims #LC is psychosomatic! Bravo! youtu.be/WK0T6njZ67Q?...
youtu.be
Action conférence organisée par C. Lemogne et B. Ranque
YouTube video by Winslow Santé Publique
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Reposted by Elisabeth Klaar
Disability News Service @johnpring.bsky.social · 22/03/2026
The Department for Work and Pensions is now telling disabled people who need support through the Access to Work scheme that it could take 37 weeks to make a decision on their application, senior civil servants have told MPs. #AccessToWork #DWP www.disabilitynewsservice.com/new-access-t...
disabilitynewsservice.com
New Access to Work applicants being told they could have to wait 37 weeks for decision, MPs hear
The Department for Work and Pensions (DWP) is now telling disabled people who need support through the Access to Work scheme that it could take 37 weeks to make a decision on their application, sen…
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Reposted by Elisabeth Klaar
Lucibee @lucibee.bsky.social · 11/03/2026
Blog from @chronicliving123.bsky.social on the low take-up of NHS training on ME/CFS. #MEDeliveryPlan chroniclivingtherapy.com/empty-classe...
chroniclivingtherapy.com
Empty Classes? NHS Training on MECFS - Chronic Living Therapy
Freedom of Information Request by Lucy B shows up NHS and RCP failure to publicise and encourage update of vital MECFS training modules
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Nicky Proctor @nickyproctor.bsky.social · 04/03/2026
It is heartening to know that we have an ally in this role who understands the decades of neglect faced by the #ME community. I sincerely hope you can meet with @tessamunt.bsky.social very soon and that we will see a step change in government actions on #ME and Long Covid. #ThereForME
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Elke Hausmann @drelke.bsky.social · 25/02/2026
A very important article. Many people are aware that medical care for the physical symptoms of Long Covid is lacking. It is less well understood that people who have Long Covid and mental health needs are also often ill served by the therapists they approach. #LongCovid
"The therapist kept using microaggressions, clearly didn't understand disability, and could not see that living with Long COVID in a world that was denying, ignoring, and burying COVID was its own trauma," Fowler said.
"It wasn't until I was fortunate enough to find a therapist who also has Long COVID that I had all of my experiences validated, and I truly experienced what a difference this made."Because Long COVID continues to be downplayed and dismissed, increasing numbers of people of all ages are joining Long COVID support groups distraught and in disbelief that they're now chronically ill, Fowler said. Many people thought that they wouldn't get long-term symptoms because they were vaccinated, or had felt fine after earlier infections.
"I think therapists need to acknowledge this and sit in that uncertainty and grief with clients, and find ways to cultivate optimism within that space instead of trying to bypass it," she said.
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Elisabeth Klaar @lammasleaves.bsky.social · 25/02/2026
@anujdawar.bsky.social "Yes, it is absolutely bonkers that your uncle’s favourite Saturday jumper has suddenly become the breakout star of 2026. But that’s exactly why it’s so satisfying." www.theguardian.com/fashion/2026...
theguardian.com
Jess Cartner-Morley on fashion: the quarter-zip is the breakout star of 2026 – and I think I know why
It was once reserved for office workers and Rishi Sunak, but now pop stars and supermodels can’t get enough of the preppy look
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Elke Hausmann @drelke.bsky.social · 25/02/2026
Because it needs saying, over and over again it seems: #LongCovid #ME
Post-exertional malaise or PEM is the hallmark physical symptom of ME and many patients with Long Covid experience it.
It is not related to trauma.
It is not some kind of reactivation of trauma or inability to deal with our emotions that makes us crash.
Many of us are not in the 'early phase of illness' anymore but still, any exercise or exertion, including shaking the body, makes us more ill.
I wish well-meaning people were more mindful of that.
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Reposted by Elisabeth Klaar
Phoebe @phoebsbo.bsky.social · 25/02/2026
“I was at the Baftas – and while hearing the N-word was unsettling, all anger should be aimed at the BBC. By failing to remove John Davidson’s tic from the broadcast, editors let down both black and disabled people.” Jason Okundaye #BAFTA #JohnDavidson www.theguardian.com/commentisfre...
theguardian.com
I was at the Baftas – and while hearing the N-word was unsettling, all anger should be aimed at the BBC | Jason Okundaye
By failing to remove John Davidson’s tic from the broadcast, editors let down both black and disabled people, says Guardian assistant Opinion editor Jason Okundaye
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Elke Hausmann @drelke.bsky.social · 24/02/2026
Brain retraining has done nothing for this woman‘s ME/CFS. How she could come to the conclusion that brain retraining is not nonsense, I don’t even understand from that article. What does she think it has done for her relapsing and remitting condition?? #ME www.theguardian.com/society/2026...
In other words, I haven't produced the triumphant recovery narrative I'd intended, but nor is this some bitter exposé of the charlatanism of brain retraining. Brain retraining wasn't miraculous, as I'd longed for it to be; and it also wasn't the nonsense that in my grief and disappointment I've wanted to denounce it as being. There would have been a kind of comfort in either conclusion.
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Adam @abrokenbattery.bsky.social · 24/02/2026
BBC Inside Health: James Gallagher speaks to Prof Chris Ponting, Prof Rosemary Boyton, and Sir Stephen Holgate about ME/CFS, Long COVID, and recent advances in research, alongside people living with ME/CFS (28 mins) youtu.be/mSga69kqUy4?...
youtu.be
BBC Inside Health - ME/CFS Research
YouTube video by Broken Battery
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Elke Hausmann @drelke.bsky.social · 24/02/2026
For anyone who wants to follow up on Joe Dispenza mentioned in this article, this podcast is a good place to start: podcasts.apple.com/gb/podcast/c...
podcasts.apple.com
98: Placebo Joe Dispenza
Podcast Episode · Conspirituality · 8 April 2022 · 1h 41m
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Michiel @murtoz.bsky.social · 24/02/2026
I find it appalling you would write such a piece and not even once mention that there are people currently being starved by the NHS, 5 years after Maeve died for those exact same reasons, and despite a coroners prevention of future deaths report demanding urgent action & safe hospital beds for us.
gofundme.com
Donate to #SevereMErgency:Save Savannah from dying inside NHS hospital, organized by Sam Pearce
Very Severe ME patient 23 year-old Savannah Victora-May is at … Sam Pearce needs your support for #SevereMErgency:Save Savannah from dying inside NHS hospital
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Brian Fog @uselesspriest.bsky.social · 24/02/2026
I find it fascinating how constant the flow of these articles is. It's interesting to note that they never make reference to people with severe ME or LC, such as the 21yo man in Austria who recently underwent assissted suicide due to unbearable symptoms.
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Didier @medidier.bsky.social · 24/02/2026
Want to read something good about #ME today? Read this from Brigitte's german magazine.
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Julia Métraux @juliametraux.bsky.social · 22/02/2026
Many disabled and chronically ill people are demonized for not working full-time jobs, when the truth is they can be forced out due to inaccessible policies. www.theguardian.com/world/2026/f...
theguardian.com
Decline in remote jobs risks shutting disabled people out of work, study finds
Research project warns fall in homeworking roles could undermine efforts to reduce unemployment
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Nuzie @nuzie.bsky.social · 16/02/2026
Thank goodness for William Dalrymple 🙏🏼 @willdalrymple.bsky.social
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Elisabeth Klaar @lammasleaves.bsky.social · 12/02/2026
Pretty sure this was an #Oatly advert I saw in the Tube in London in November 2018... As someone who breastfed two humans I found it obnoxious even then. Fine with me if they get chucked out the dairy aisle in supermarkets.
Poster on wall of tube/underground/metro in London UK, blurred communters in foreground. White background and black text on poster saying: 'It's like milk but made for humans'
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valebodi.bsky.social @valebodi.bsky.social · 04/02/2026
#ME/CFS and Long Covid. They can then apply this knowledge to any treatment plan. For example, we know there is an energy production dysfunction in this patient group: any treatment needs to take this into account.” Natalie Hilliard @chronicliving123.bsky.social @physiosforme.bsky.social
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valebodi.bsky.social @valebodi.bsky.social · 04/02/2026
How does working with patients who have Long Covid or M.E. differ from working with other patients? “Fundamentally, the usual ‘reconditioning’ model of Physiotherapy does not work for this patient group. It is therefore imperative that Physiotherapists understand the evolving pathophysiology of
chroniclivingtherapy.com
Natalie Hilliard Physiotherapist (Part 1) - Chronic Living Therapy
Natalie Hilliard shares insights from physiotherapy, of particular use to therapists and counsellors. Eg understanding post-exertional malaise, challenges pacing properly, impact of emotional exertion...
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George Monbiot @georgemonbiot.bsky.social · 04/02/2026
Every complaint I had against Chomsky concerned the same problem: the way he excused or dismissed atrocities committed by his team: ie regimes and forces opposed to Western hegemonic power. As his friend, Epstein was given the same pass. In other words, it's not an anomaly. It's the same story.
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Katy B @katybrc.bsky.social · 01/02/2026
@tessamunt.bsky.social @joplatt.bsky.social @georgemonbiot.bsky.social I'm sure you're all aware of this case of yet another #pwME being seriously harmed while under @england.nhs.uk care. It also makes it very clear that there are very serious problems with BACME being involved in care of #pwME
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Cambridge Independent @cambridgeindy.bsky.social · 01/02/2026
Greater #Cambridge is bucking the trend on house-building - with the lag between planning approval and spades in the ground much shorter than average www.cambridgeindependent.co.uk/news/greater...
cambridgeindependent.co.uk
Greater Cambridge bucks trend on house-building rates
Lag between planning approval and construction is much lower.
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Chronic Living Therapy (a directory) @chronicliving123.bsky.social · 31/01/2026
Did an article on how to access it in English for anyone who might struggle to work out Google translate: chroniclivingtherapy.com/brigitte-spe... Includes links to specific articles with a synopsis so you can choose which to read.
chroniclivingtherapy.com
'Brigitte' Special Edition - MECFS - Chronic Living Therapy
Brigitte, a mainstream magazine with a large circulation in German-speaking countries, published an excellent special edition about ME/CFS.
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Tom Kindlon @tomkindlon.bsky.social · 31/01/2026
Brigitte, a mainstream German women's magazine, has published a special edition about #MECFS drvjdg.clicks.mlsend.com/ty/cl/eyJ2Ij... Google translation www-brigitte-de.translate.goog/gesund/mecfs... Screenshot from @chronicliving123.bsky.social newsletter #CFS #PwME @lammasleaves.bsky.social
'Brigitte' Magazine (German)
German women's magazine, Brigitte, a mainstream publication with a large circulation, has published a special edition about ME/CFS. 

I've not read it all yet, but by all accounts it's well-informed about the history of, and biomedical research into, the condition. Interviews and feature articles with patients, carers, doctors and researchers explain the condition and the impact it can have. 

Most interesting to therapists is an in-depth interview with renowned ME advocate and psychotherapist, Dr Bettina Grande, who explains how therapy can (and how it can't) help people with ME/CFS.

*** You have to allow adverts to read the magazine for free. You may be able to have your browser translate the text. Alternatively, you could copy and paste it into 'google translate' or similar, to read it in your own language.
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Tom Kindlon @tomkindlon.bsky.social · 31/01/2026
British Association for Counselling and Psychotherapy 'Letter to the Ed' chroniclivingtherapy.com/wp-content/u... Screenshot from Chronic Living Therapy @chronicliving123.bsky.social newsletter #MEcfs #CFS #PwME #MyalgicEncephalomyelitis #ChronicFatigueSyndrome @lammasleaves.bsky.social
BACP 'Letter to the Ed'
A former therapist, Emma Hampson, has had a letter published in the BACP members' magazine, Therapy Today. 

Emma's letter was sent in response to the article on therapy and chronic ill health we have written about before. Here's a flavour of her letter:

"It confused me to see what had begun as an article showing concern about the psychologisation of chronic illness to then switch to an interest in the psychologisation of ME.

My confusion compounded when the piece warns therapists that 'unconscious ableist beliefs often due to a lack of education, can harm clients even when subtly expressed'.

I was experiencing the very thing the article was warning against happening to me (as I read). The article interviewed two people who recovered from ME but none who hadn't, even though the recovery rate is 5%-10%."


Read complete letter from Emma Hampson (pdf)
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Prof. dr. Vivienne Matthies-Boon @vmatthiesboon.bsky.social · 26/01/2026
Vielleicht sollte ich das klarer formulieren: Das #biopsychosoziale Modell ist kein wissenschaftliches Modell. Es versäumt es nicht nur, die Konzepte richtig zu definieren, sondern unterscheidet auch nicht zwischen kausalen, korrelativen und falschen Korrelationsbeziehungen. 1/4
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Dr Nicola Clague-Baker @claguenjc36.bsky.social · 17/01/2026
Thank you to all #hcps with #LC and #ME who completed the survey. It is now closed. We had 170 people complete the survey and we are just finishing nearly 30 interviews. As always we are v grateful to all participants using their valuable energy to take part @physiosforme.bsky.social
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Tom Kindlon @tomkindlon.bsky.social · 30/11/2025
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...
www-kleinezeitung-at.translate.goog
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.
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Adam @abrokenbattery.bsky.social · 06/11/2025
‘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.
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 04/11/2025
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 🧪
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Adam @abrokenbattery.bsky.social · 23/10/2025
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...
twitter-thread.com
🧵Dr Clare Gerada has been appointed a crossbench peer in the House of Lords and is now a Baroness. She is married to psychiatrist Sir Simon Wessely, the main architect of the now-discredited psycholog...
🧵Dr Clare Gerada has been appointed a crossbench peer in the House of Lords and is now a Baroness. She is married to psychiatrist Sir Simon Wessely, the main architect of the now-discredited psycholog...
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Danilo Buonsenso @buonsenso.bsky.social · 19/10/2025
“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...
danilobuonsenso.substack.com
“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.
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Tom Kindlon @tomkindlon.bsky.social · 18/10/2025
October International Research and Advocacy Roundup emerge.org.au/news/october... #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME #LongCovid
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
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sarah boothby @swastrosarah.bsky.social · 18/10/2025
This was submitted February 2024! www.nature.com/articles/s41...
nature.com
Altered effort and deconditioning are not valid explanations of myalgic encephalomyelitis/chronic fatigue syndrome
Nature Communications - Altered effort and deconditioning are not valid explanations of myalgic encephalomyelitis/chronic fatigue syndrome
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Tom Kindlon @tomkindlon.bsky.social · 09/10/2025
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
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Jennie Jacques @jenniejacques1.bsky.social · 09/10/2025
Thank you 🙏 @georgemonbiot.bsky.social Here’s an interview with George and @davetuller1.bsky.social to learn more…! m.youtube.com/watch?v=SpLM...
m.youtube.com
George Monbiot David Tuller Jennie Jacques talking ME/CFS LONG COVID CANCER HIV/AIDS
YouTube video by The Monster In ME
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Tom Kindlon @tomkindlon.bsky.social · 03/10/2025
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
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
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The Sick Times @thesicktimes.org · 27/09/2025
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/
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.
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