Joined November 2011
- Tweets 90,325
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- Followers 3,005
- Likes 135,894
3,281 Photos and videos
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1 Aug 2019
I‘m incredibly proud of what a small but determined group of people can do. If you’ve ever contributed then you’ve helped fund actual biomedical research into #myalgicE #positiveresearch £900k We did it for ourselves. @LetsDoIt4ME Jo Jan Paul 💙Amazing
ldifme.org/2019/07/31/8-year…
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Hockney will be buried in Yorkshire after refusing Westminster Abbey honour telegraph.co.uk/news/2026/06…
Refused a knighthood and burial at Westminster
Hockney a giant of the world of art and painting” and “a Yorkshireman through and through”
@CarolynFahm @Johnnypapa64
🙏
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#youngcarers ♥️
Can’t imagine how difficult it is to be diagnosed so young, whilst your family are still young.
Lewis and Euan’s mum, Sarah, was diagnosed with young onset frontotemporal dementia when Lewis was 19 and Euan was nine. 💙
This #MenHealthWeek, they talk openly and honestly about how #dementia changed their lives, and how they are navigating grief.
Watch Lewis and Euan’s full conversation: youtu.be/tYzMCJJ5r5E
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Endometriosis and Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: A Systematic Review and Meta-Analysis
pmc.ncbi.nlm.nih.gov/article…
Endometriosis patients have a nearly 3 x higher risk of ME, whilst ME patients have ~2.5 x higher risk of endometriosis
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Wenn man sich die Antworten zu diesem hervorragenden Post auf Instagram von evamariaburger durchliest, weiss man sofort, dass viele vieles haben. ME kommt selten allein. Lege ich jedem ans Herz, nicht nur den Post zu lesen, sondern auch in den Antworten. Soviel CCI, FQAD, POTS, MCAS, SmallFiber, hEDS, EDS usw. Alles von der Wissenschaft, Ärzteschaft, auch von einigen Patientenorganisationen chronisch ignoriert! Vollumfängliche Aufklärung braucht es dringender denn je, verdammte Hacke und entsprechende Forschung und Anlaufstellen, damit das labyrinthische Gesuche aufhört.
Jun 14
Eva Maria Burger hat auf Instagram eine gute Zusammenfassung von Klaus Wirths letztem Preprint verfasst.
instagram.com/p/DZj5grGDdnx/…
Und hier noch einmal der Link zum Preprint: preprints.org/frontend/manus…
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Call for Participants! 📢
Researchers at York University are exploring the frequency and nature of dissociative & maladaptive daydreaming experiences in neurodivergent adults.
They are looking for English-speaking adults who identify as neurodivergent (i.e., autistic and/or having ADHD -professional diagnosis is not required) to participate in survey research.
If you are interested in taking part, scan the QR code or sign up using this link: yorku.questionpro.ca/t/AB3ur…
This study has been fully reviewed and approved by our institution's Office of Research Ethics (Human Participants Review Sub-Committee).
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I'm 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
tinyurl.com/46enh82n
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#RCPsychic reaction to the open letter signed by > 1,000 many orgs was proprietorial,along the lines of 'piss off, we decide the conference speakers'.
But I'd say 'when will they ever learn?' if they don't illuminate the myth about Long Covid being a mind problem #HearOurVoices
People with Long Covid and ME deserve excellent supportive mental health care. That is why we are reaching out to #RCPsychIC to include current patient expertise in future policy. What can be done to move forward?
Why did 58 charities & orgs sign an open letter with concerns?👇️
#HearOurVoices 🔄
ALT An open letter in double open letter from Long Covid Advocacy to the Royal College of Psychiatrists regarding ME and Long Covid medical frameworks, signed by 58 supporting organizations.
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Greetings and good morning it’s the Mo day farm rush hour with Rodney & Del the emus
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I can’t remember if I asked here or not. Is anyone here particularly Horsey?
We lost my auntie in feb who was fanatical about horses so we have a box of old trophies and a trunk of rosettes as well as her old riding gear.
Anyone have any suggestions what we could do with them?
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Interesting, I often think about this case and how it was such a pure act of psychopathy. I hope theyve got the right man and he goes down for it, its surely attempted murder.
dailymail.com/news/article-1…
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💙Long Covid Advocacy in Liverpool on an outreach mission at the International Congress of The Royal College of Psychiatrists. #RCPsychIC
As always, our aim was to engage politely and openly with those present. It was a resounding success... 👇️ 🧵
ALT A photograph taken outdoors showing a hand holding a printed pamphlet in the foreground, with a large digital sign and a modern building in the background. The blurred pamphlet in the lower frame displays the heading "Open Letter" in a bold serif font, accompanied by the text "58 orgs 1200 signed" and "#HearOurVoices". In the center background stands a tall, purple digital monolith sign under the branding "LIVERPOOL EXPERIENCE CAMPUS". The screen displays a colorful, abstract circular mosaic logo above the text "ROYAL COLLEGE OF PSYCHIATRISTS International Congress". Behind the sign is the glass facade of a modern convention centre reflecting the blue sky and nearby buildings, with an entrance on the right where people are walking through.
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Dogs going to see their grandparents…
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Brilliant as always @paulwellerHQ here at the #PieceHall Halifax
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People with Long Covid and ME deserve excellent supportive mental health care. That is why we are reaching out to #RCPsychIC to include current patient expertise in future policy. What can be done to move forward?
Why did 58 charities & orgs sign an open letter with concerns?👇️
#HearOurVoices 🔄
ALT An open letter in double open letter from Long Covid Advocacy to the Royal College of Psychiatrists regarding ME and Long Covid medical frameworks, signed by 58 supporting organizations.
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We are joining the call for up-to-date scientific representation & meaningful patient engagement in Long Covid and ME. We are proud to support the Open Letter to RCPsych, backed by 58 orgs (including us) & 1200 signatories. #HearOurVoices #RCPsychIC
People with Long Covid and ME deserve excellent supportive mental health care. That is why we are reaching out to #RCPsychIC to include current patient expertise in future policy. What can be done to move forward?
Why did 58 charities & orgs sign an open letter with concerns?👇️
#HearOurVoices 🔄
ALT An open letter in double open letter from Long Covid Advocacy to the Royal College of Psychiatrists regarding ME and Long Covid medical frameworks, signed by 58 supporting organizations.
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1) In 2007-2010, the Netherlands experienced one of the biggest Q-fever epidemics ever recorded.
This new study shows that more than 10 years later, the quality of life of people with Q-fever fatigue syndrome remains consistently reduced.
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This is the most idiocracy shit I’ve ever seen in my life!
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This stage of a pup where they figure things out is the best
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Happy birthday to Noddy Holder. 80 today!
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I’d really like to encourage anyone with #LongCovid or #MECFS to try support the @LCMEBillboards campaign.
It’s very impossible and affordable to have this billboard up (in vicinity of the NIHR) on a full time basis.
The artwork could update to reflect how many years
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