cbme-mark.bsky.social
@cbme-mark.bsky.social
Severe ME/CFS with added Long Covid. Running a support group in Cambridge, UK. Pronouns: depends how the day pans out
Three ME support groups have written an open letter to the Royal College of Psychiatrists challenging its defence of last month’s Congress session on ME and Long Covid. A vague “biopsychosocial” framework cannot rescue treatments the evidence has already rejected.
cambridgeme.org.uk
Isn’t it good to know that there are people fighting on our behalf? If you have severe or very severe ME, this is urgent. If you have moderate or mild ME, it’s about your future. www.crowdjustice.com/case/justice...
NHS care for ME now
Campaigning for ME (Myalgic Encephalomyelitis) to be medically managed safely, to protect families from permanent disability or death from neglect of the illness.
crowdjustice.com
Total welfare spending: ~10.6% of GDP — the same band it has occupied since the early 1980s. Official forecast: 10.9% → 11.2% by 2030. That’s not a “ballooning welfare budget”, @theguardian.com. It’s a flat line. Stop doing the Treasury’s copywriting for free.
Every one of our committee members is severely affected by ME and we are immensely grateful to the group members who have volunteered to help train GPs www.cambridgeindependent.co.uk/news/cambrid...
Cambridge ME group organises GP trainees event in anniversary year
Chair Mark Harper features in BBC Lifeline appeal.
cambridgeindependent.co.uk
TWO DAYS LEFT There are two days of David Tuller’s fundraiser to fund him to work for us for another year. So far 77% of the necessary amount has been donated. David has worked tirelessly to expose the fraud of the claims that ME (and now LC) are “all in your mind” for well over a decade.
Trial By Error: Reporting on ME and ME/CFS, Long COVID, etc
Help UC Berkeley raise $75,000 for the project: Trial By Error: Reporting on ME and ME/CFS, Long COVID, etc. Your gift will make a difference!
crowdfund.berkeley.edu
Benefits There has barely been any increase in the number of people claiming benefits if you take into account population growth, aging population, increase in morbidity & pension age rising so it include more people Not the narrative you hear in media obr.uk/wtr/welfare-...
I’ve been making my way through the Welfare Reform Bill and this paragraph on the gov.uk website is genuinely disgusting. Receiving a decent disability benefits rate “encourages sickness”, does it? Funny, I thought it just enabled severely ill and disabled people to eat.
If we want change, we need to fundraise for it. Around half of medical research is funded through the charity sector. Many people won't be able to donate, but for those who can, I cannot think of a more deserving cause than driving change for people with ME.
Action for ME@actionforme.bsky.social · last yr.1/2 Another Summer Appeal video in 📹 @mediumwhite.bsky.social has long-campaigned for people with ME, calling for an urgent increase in medical research funding. Thank you, Peter, for sharing and supporting our Appeal 🌻 ⬇️
Great presentation made by Prof Chris Ponting (@cgatist.bsky.social) to the UK APPGs on ME & Long Covid about the ongoing failure to fund research into ME. UKRI is failing #pwME and #LongCovid Time for Wes Streeting to step in: @tessamunt.bsky.social Please share. Pt2 in next post.
Awareness Month petition - final call If you haven't signed yet, please do - and just as importantly, share the link with everyone you know. You can do this from the petition web page. Thanks!! you.38degrees.org.uk/petitions/ri...
Ring-fence funds for research into ME/CFS
Hundreds of thousands of people were already living with the chronic post-viral illness ME/CFS before the covid pandemic. COVID turned out to be highly effective at producing chronic post-acute illnes...
you.38degrees.org.uk
An excellent response to recent opinion in the BMJ that behavioural treatments address the right approach to ME/CFS. www.bmj.com/content/389/...
The risk of blaming patients for their lack of recovery
bmj.com
My grandmas were immigrants, my mum & sisters in law are immigrants; my sister & nephews are migrants. My kids study maths, Shakespeare, dance, act & score tries alongside the kids of immigrants. My dad’s life was saved by immigrants. Immigrants have made us richer, wiser, stronger Win the fight
Ely Cathedral Octagon Tower illuminated in blue for Cambridge ME and Long Covid Support, on World ME Day
This proposal, backed by some of the major charities, is to establish a national-funded research consortium on ME. Please sign the open letter calling on public Funders to back it. A proposal for an ME/CFS, Long Covid and Post-Infectious Disease research platform organise.network/s/167c15ca80c0
A proposal for an ME/CFS, Long Covid and Post-Infectious Disease research platform
Add your name:
organise.network
Text of an open letter by Disability organisations to our Cambridge MP Daniel Zeichner MP (Cambridge)
www.buffalo.edu/news/release...
Doctors must learn to communicate better with their patients with complex chronic disorders
Complex disorders like long COVID and myalgic encephalomyelitis/chronic fatigue syndrome are often dismissed or misdiagnosed: better communication can help, say UB researchers.
buffalo.edu
The #MECFS community should be concerned about this. A right-wing bias is likely to play into the hands of powerful vested interests who betray ME/CFS as a psychological problem.
George Monbiot@georgemonbiot.bsky.social · last yr.The BBC is institutionally biased towards the right and the far right, and here's the proof: the results of an almost perfect before-and-after experiment. My column today. www.theguardian.com/commentisfre...
petition.parliament.uk/petitions/72...
Petition: Abandon DWP Pathways to Work Green Paper & create National Disability Strategy
The DWP Green Paper Pathways to Work proposes what we think are devastating cuts to disability benefits. We think the Government must drop these proposals and instead begin a process of co-production ...
petition.parliament.uk
If we really want to take on chronic diseases.... by @virusesimmunity.bsky.social and @hmkyale.bsky.social #LongCovid, post-infection syndromes, immune system assessment and intervention gift link www.wsj.com/opinion/how-...
New @science.org Exposomics. We're not doing nearly enough to understand and mitigate our toxic environmental exposures. A very insightful perspective www.science.org/doi/10.1126/...
