Anyone w questions about current British Psychological Society survey w ME Association & Action for M.E. & why it might be important to be doing this work I hope this thread below answers most commonly asked. It’s crucial for us to be engaging w people who live w ME/CFS many thanks to all who have!

AMMES What I find repeatedly when assessing pwME. PwME are psychologically resilient and are often unaware of just how huge their burden of symptoms are. Medics and society need to know. Stop the medical psychologisation of pwME.

Carol L. Binks ME Association There are several psychologists with ME involved in leading this project. It is not about promoting treating pwME with psychotherapy. That has zero evidence base. It is about ensuring psychologists know this and have information about ME to support them appropriately.

This show grapples with the realities of the last few yrs from my perspective as a CEV artist. If you can't get to London or it's not safe to come in person please do consider joining us online. There's visual & sonic stories to help explain what to expect Clinically Vulnerable Families 💙💜💗 Long Covid Kids - #LongCovidKids

A🧵where Jo Hunt (also blogging at @HealthHubris) shares her incredibly important work, academic papers & other writing on - #GreatestMEdicalScandal #ME #MEcfs #pwME #LongCovid #biopolitics #pycComplex #DisabilityDenial #PACETrial

Latest episode of Post-Exertional Mayonnaise is out now on YouTube and wherever you get podcasts! We chat with Catherine Hale who founded & ran the Chronic Illness Inclusion project in the UK. We discuss it's legacy & why our community needs disability representation.

Devastating news for the ME community today. We have lost another incredible human with #verysevereME. My friend and comrade Sammy Lincroft. Aged 25 and with a wealth of knowledge and wisdom around ME, social justice, mutual aid, interconnected struggles and so much more 💔

#mecfs24 Robert Wust talking about PEM. Exercise is NOT good medicine for ME. Muscle abnormalities in PEM. LC and ME groups. Not due to inactivity. Studies muscle biopsies.

Ron Davis’s Stanford Symposium

Can the ME Community help ME Foggy Dog get more signatures on this petition and get it trending during ME Awareness hour this evening? ow.ly/3yKp50TfbNS #MyalgicEncephalomyelitis #VerySevereME #SevereME

The new study from Edinburgh University, including Chris Ponting, found hundreds of biomarkers were different in people with #ME. The pattern was not seen in other illnesses – and not due to inactivity (so much for deconditioning as a cause). Chris Ponting meassociation.org.uk/2024/09/resear…

Climate deniers and COVID deniers follow the same playbook (the problem isn't nearly as bad as those fearmongers say or the problem is too big to solve anyways), but climate deniers are generally no longer accepted by the wider scientific community. COVID deniers still are. (1/8)

Epstein-Barr Virus (EBV) is associated with increased risk of developing: - Rheumatoid arthritis - Multiple sclerosis - Type 1 diabetes - Celiac disease - ME/CFS - Lupus A new EBV study in multiple sclerosis (MS) reveals an important clue that might explain this

#MEcfs patients, if able, this is being done by Joan Crawford and three colleagues and is totally a good thing and not another attempt at CBT-GET. British Psychological Society survey on their planned new guidance on ME/CFS, deadline 9th October 2024 forms.gle/TsQBGBYKxMGeb1…

Welcome to our first #MedEdMonday! We are excited to introduce the 1st video in a 4-part series focusing on post-exertional malaise & pacing created by Patient-Led Research Collaborative & #MEAction Network. Our 1st video features Dr. Brayden Yellman from Bateman Horne Center. youtu.be/cGQFGgb_PtA #pwME #pwLC

Our words, our lives - article for Ciadish magazine featuring writers Nasim Marie Jafry 🍉 Laura Elliott Henry Anderson JP Seabright 💜 Louise Kenward talking eloquently about writing with chronic illness #mecfs Emily Goss ciadish.wordpress.com/2024/09/10/our…

Thanks so much for heads-up, Katy. My article on #writing can be found at the beginning. #chronicillness

“Telling stories may be a basic human need, but the kind of stories we tell and how we tell them reveals something about who we are and how we experience the world. This may be especially true if our experience involves a body that has gone chronically wrong...

…Inhabiting the body can be a strange, unsettling thing. Chronic illness forces us to question things, to discover new modes of understanding and expression, although this isn’t to romanticize sickness or see it as ‘illuminating’.”

‘Every Story Matters’ is your opportunity to help the UK Covid-19 Inquiry understand your experience of the pandemic. This is your opportunity to share with the Inquiry the impact it has had on your life. Please visit: everystorymatters.co.uk to find out more. #PoTS #CovidInquiry