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cbme-mark.bsky.social

@cbme-mark.bsky.social
956 followers 93 following 155 posts

Severe ME/CFS with added Long Covid. Running a support group in Cambridge, UK. Pronouns: depends how the day pans out

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cbme-mark.bsky.social @cbme-mark.bsky.social · 13/08/2026
We appreciate their courtesy in responding at presidential level. But they have answered none of the specific points we raised. Read our letter and the RCPsych response here: cambridgeme.org.uk/take-action/
cambridgeme.org.uk
Take action
ME is a very neglected illness. Many medical professionals know little about it beyond being aware of something called ‘chronic fatigue syndrome’. This was the name given to it by psych…
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cbme-mark.bsky.social @cbme-mark.bsky.social · 13/08/2026
The Royal College of Psychiatrists responded to our letter pointing out that the biopsychosocial emperor had no clothes and asking them to stop trying to cover up its nakedness.
cambridgeme.org.uk
Take action
ME is a very neglected illness. Many medical professionals know little about it beyond being aware of something called ‘chronic fatigue syndrome’. This was the name given to it by psych…
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cbme-mark.bsky.social @cbme-mark.bsky.social · 16/07/2026
Full letter: cambridgeme.org.uk/wp-content/u...
cambridgeme.org.uk
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cbme-mark.bsky.social @cbme-mark.bsky.social · 16/07/2026
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
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cbme-mark.bsky.social @cbme-mark.bsky.social · 13/07/2026
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...
crowdjustice.com
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.
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cbme-mark.bsky.social @cbme-mark.bsky.social · 08/07/2026
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.
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cbme-mark.bsky.social @cbme-mark.bsky.social · 24/05/2026
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...
cambridgeindependent.co.uk
Cambridge ME group organises GP trainees event in anniversary year
Chair Mark Harper features in BBC Lifeline appeal.
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cbme-mark.bsky.social @cbme-mark.bsky.social · 06/05/2026
His work has helped shift the dial and ME is now officially accepted as a” real “ organic illness. Please help if you can! Every last £ helps crowdfund.berkeley.edu/project/49720
crowdfund.berkeley.edu
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!
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cbme-mark.bsky.social @cbme-mark.bsky.social · 06/05/2026
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.
crowdfund.berkeley.edu
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!
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cbme-mark.bsky.social @cbme-mark.bsky.social · 04/10/2025
I’m fine - my old Victorian terrace house is leaky as hell! No danger of co2 buildup. I’m curious though - Co2 levels are a fraction of a % in the atmosphere, and it’s not directly toxic. Mildly Raised levels usually just make you breathe more. What leads you to suspect it might do that?
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Dr Steve Taylor @drstevetaylor.bsky.social · 30/06/2025
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-...
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cbme-mark.bsky.social @cbme-mark.bsky.social · 27/06/2025
meassociation.org.uk/2025/06/the-...
meassociation.org.uk
The Truth About the Government’s “Concessions”: They Don’t Go Far Enough - The ME Association
The government has agreed to protect existing disability benefit claimants […]
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cbme-mark.bsky.social @cbme-mark.bsky.social · 20/06/2025
John McDonnell is great.
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Frances Ryan @francesryan.bsky.social · 20/06/2025
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.
Nearly 4 million households will also receive an income boost with the main rate of Universal Credit set to increase above inflation every year for the next four years – estimated to be worth £725 by 2029/30 for a single household 25 or over. This is around £250 higher than an inflation only increases.

The Bill will also rebalance Universal Credit rates by reducing the health element for new UC claims to £50 from April 2026, fixing a system which encourages sickness by paying health element recipients more than double the standard amount.
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Peter White @mediumwhite.bsky.social · 20/06/2025
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.
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cbme-mark.bsky.social @cbme-mark.bsky.social · 20/06/2025
www.ed.ac.uk/news/scale-o...
ed.ac.uk
Scale of how ME/CFS affects blood revealed
People with ME/CFS have significant differences in their blood compared with healthy individuals, a new study reveals, suggesting a path towards more reliable diagnosis of the long-term debilitating i...
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Peter White @mediumwhite.bsky.social · 18/06/2025
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.
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cbme-mark.bsky.social @cbme-mark.bsky.social · 18/06/2025
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...
you.38degrees.org.uk
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...
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cbme-mark.bsky.social @cbme-mark.bsky.social · 15/06/2025
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cbme-mark.bsky.social @cbme-mark.bsky.social · 18/05/2025
the.organise.network/surveys/stop...
the.organise.network
Thanks for voting! Please can you answer a few questions to help stop the government cuts?
Please join me and take this quick survey to stop the government stripping cash payments from sick and disabled people:
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cbme-mark.bsky.social @cbme-mark.bsky.social · 17/05/2025
An excellent response to recent opinion in the BMJ that behavioural treatments address the right approach to ME/CFS. www.bmj.com/content/389/...
bmj.com
The risk of blaming patients for their lack of recovery
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Lucibee @lucibee.bsky.social · 16/05/2025
👏👏👏
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cbme-mark.bsky.social @cbme-mark.bsky.social · 13/05/2025
#WorldMEDay #ThereForME
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cbme-mark.bsky.social @cbme-mark.bsky.social · 13/05/2025
Me too - first generation Englishman
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Dan Snow @thehistoryguy.bsky.social · 13/05/2025
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
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cbme-mark.bsky.social @cbme-mark.bsky.social · 13/05/2025
Ely Cathedral Octagon Tower illuminated in blue for Cambridge ME and Long Covid Support, on World ME Day
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cbme-mark.bsky.social @cbme-mark.bsky.social · 10/05/2025
At the same time others have reported serious harm from some of them. PWME are left wandering in a morass of possibilities which may help or harm them. Properly controlled trials are desperately needed before any technique can be recommended for or against.
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cbme-mark.bsky.social @cbme-mark.bsky.social · 10/05/2025
I’m very glad to hear that you are recovering from this horrible disease. That’s life changing and to be celebrated. Others have reported recovery or improvement using gigantic doses of vitamin D, LDN, nimodipine, the lightning process, the Gupta technique and many other approaches.
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cbme-mark.bsky.social @cbme-mark.bsky.social · 10/05/2025
You can read more about it here: psp-me.co.uk/campaign-str...
psp-me.co.uk
A proposal for an ME/CFS, Long Covid, and Post-Infectious Disease research platform - ME/CFS Priority Setting Partnership
A new campaign has been launched today by Action for ME, ME Research UK and the ME Association based on the work of a group of academics, practitioners, clinicians, charity representatives and people ...
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cbme-mark.bsky.social @cbme-mark.bsky.social · 10/05/2025
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
organise.network
A proposal for an ME/CFS, Long Covid and Post-Infectious Disease research platform
Add your name:
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cbme-mark.bsky.social @cbme-mark.bsky.social · 05/05/2025
Text of an open letter by Disability organisations to our Cambridge MP Daniel Zeichner MP (Cambridge)
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cbme-mark.bsky.social @cbme-mark.bsky.social · 01/05/2025
www.buffalo.edu/news/release...
buffalo.edu
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.
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cbme-mark.bsky.social @cbme-mark.bsky.social · 01/05/2025
For ME, they’re actually dangerous because they encourage sufferers to ignore PEM.
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cbme-mark.bsky.social @cbme-mark.bsky.social · 01/05/2025
had hundreds of reports of further damage to health (including children). One of the problems we have is the conflation by health professionals of chronic fatigue with ME. The former may well be amenable to “change your mind”, “neuroplastic” approaches./
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cbme-mark.bsky.social @cbme-mark.bsky.social · 01/05/2025
If the proposed interventions are behavioural, the question is whether they work rather than which area of the brain we ascribe their effects to. Schubiner’s approach seems to be very close to CBT/GET and the Lightning Process, both of which have been shown not to work and have/
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cbme-mark.bsky.social @cbme-mark.bsky.social · 01/05/2025
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.
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cbme-mark.bsky.social @cbme-mark.bsky.social · 30/04/2025
petition.parliament.uk/petitions/72...
petition.parliament.uk
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 ...
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cbme-mark.bsky.social @cbme-mark.bsky.social · 30/04/2025
ME and LC may well involve the brain and CNS but nothing based on changing people’s minds has achieved anything. The one big trial of the “biopsychosocial” approach - the PACE trial of 2011 - fell flat on its face.
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Eric Topol @erictopol.bsky.social · 30/04/2025
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-...
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cbme-mark.bsky.social @cbme-mark.bsky.social · 30/04/2025
Recent research shows a strong association between pesticide exposure and Parkinson’s disease(glyphosate, Paraquat, Rotenone). One wonders how many other disorders, mysteriously in the increase, might be connected to toxin exposure?
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Eric Topol @erictopol.bsky.social · 24/04/2025
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/...
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cbme-mark.bsky.social @cbme-mark.bsky.social · 30/04/2025
www.theguardian.com/society/2025...
theguardian.com
Over 150,000 more people in England have ME than previously thought, study finds
Research into myalgic encephalomyelitis or chronic fatigue syndrome also reveals diagnosis ‘postcode lottery’
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cbme-mark.bsky.social @cbme-mark.bsky.social · 30/04/2025
www.theguardian.com/society/2025...
theguardian.com
Labour’s benefit cuts will cost UK economy billions, charity says
Trussell report finds that higher levels of poverty mean Britain is losing out on £38bn a year of potential output
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cbme-mark.bsky.social @cbme-mark.bsky.social · 30/04/2025
the.organise.network/campaigns/ne...
the.organise.network
Our NHS is not for sale: keep it out of Trump's trade deal
Add your name:
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cbme-mark.bsky.social @cbme-mark.bsky.social · 24/04/2025
I’ve always had an uneasy feeling about this. We’re exposed to thousands of artificially produced chemicals. Most have been tested for toxicity individually, none in combination.
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cbme-mark.bsky.social @cbme-mark.bsky.social · 24/04/2025
It’s not that it’s impossible that a hypochondriac might find ME on Google and decide that’s what he’s got. It’s that you know that’s the only mention the disease will get.
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cbme-mark.bsky.social @cbme-mark.bsky.social · 24/04/2025
It’s so depressing. I watched the first episode of the Netflix drama House, about a misanthropic hospital consultant. And guess what, they make fun of a guy who reports symptoms of chronic fatigue syndrome and fibromyalgia.
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ME/CFS Science @mecfsscience.org · 19/04/2025
This looks like an interesting and much needed project. In Neunkirchen-Seelscheid in Germany, a housing project is being planned especially for severely ME/CFS sufferers with 24-hour assistance. sozialhummel.de/wohn...
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Long Covid Advocacy @longcovidadvoc.com · 19/04/2025
25-30% of people report Long Covid 6+ months after infection Rates are highest in lower-income countries & among Arab, N. African groups. Risk rises with age, reinfection & hospitalization Once again the most marginalized bear the heaviest burden 📝🖇️ tinyurl.com/msxbbshx
Alt text:
Dark-themed infographic showing a global map with glowing city lights and light-blue data arcs connecting different regions. Title reads: “Studies across 14 nations show 25% to 30% rate of long COVID.” Subtitle notes: “2 studies show devastating Long Covid prevalence. With poorer nations most affected.” Header label: “LONG COVID NEWS” by Stephanie Soucheray. Source: CIDRAP, 17 April, 2025. A stylized purple and blue hand icon appears in the top right corner.
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cbme-mark.bsky.social @cbme-mark.bsky.social · 19/04/2025
This is the petition that Cambridge ME and Long Covid Support’s ME Awareness Week poster will be pointing people to. If you haven’t already, please help us get off to a good start by signing, and asking friends, family and other groups to sign as well! you.38degrees.org.uk/petitions/ri...
you.38degrees.org.uk
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...
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