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cbme-mark.bsky.social

@cbme-mark

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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07.08.2024
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Latest posts by cbme-mark.bsky.social @cbme-mark

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?

04.10.2025 16:21 👍 1 🔁 0 💬 1 📌 0
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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-...

30.06.2025 09:37 👍 218 🔁 116 💬 12 📌 19
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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 […]

meassociation.org.uk/2025/06/the-...

27.06.2025 17:57 👍 1 🔁 0 💬 0 📌 0

John McDonnell is great.

20.06.2025 19:20 👍 0 🔁 0 💬 0 📌 0
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.

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.

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.

20.06.2025 10:17 👍 689 🔁 328 💬 47 📌 53

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.

20.06.2025 14:46 👍 7 🔁 2 💬 0 📌 0
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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...

www.ed.ac.uk/news/scale-o...

20.06.2025 15:02 👍 2 🔁 0 💬 0 📌 0
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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.

18.06.2025 08:28 👍 6 🔁 2 💬 2 📌 0
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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...

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...

18.06.2025 09:07 👍 0 🔁 0 💬 0 📌 0
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15.06.2025 09:13 👍 1 🔁 0 💬 0 📌 0
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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:

the.organise.network/surveys/stop...

18.05.2025 06:44 👍 0 🔁 0 💬 0 📌 0
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The risk of blaming patients for their lack of recovery

An excellent response to recent opinion in the BMJ that behavioural treatments address the right approach to ME/CFS. www.bmj.com/content/389/...

17.05.2025 15:42 👍 16 🔁 4 💬 1 📌 1

👏👏👏

16.05.2025 09:44 👍 9 🔁 2 💬 0 📌 0

#WorldMEDay #ThereForME

13.05.2025 11:05 👍 1 🔁 0 💬 0 📌 0

Me too - first generation Englishman

13.05.2025 10:11 👍 3 🔁 0 💬 0 📌 0

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

13.05.2025 09:02 👍 3446 🔁 760 💬 98 📌 26
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Ely Cathedral Octagon Tower illuminated in blue for Cambridge ME and Long Covid Support, on World ME Day

13.05.2025 10:09 👍 13 🔁 3 💬 2 📌 0

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.

10.05.2025 09:03 👍 0 🔁 0 💬 2 📌 0

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.

10.05.2025 09:03 👍 0 🔁 0 💬 1 📌 0
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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 ...

You can read more about it here:

psp-me.co.uk/campaign-str...

10.05.2025 08:46 👍 1 🔁 0 💬 0 📌 0
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A proposal for an ME/CFS, Long Covid and Post-Infectious Disease research platform Add your name:

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

10.05.2025 08:46 👍 4 🔁 2 💬 1 📌 0
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Text of an open letter by Disability organisations to our Cambridge MP Daniel Zeichner MP (Cambridge)

05.05.2025 11:01 👍 6 🔁 5 💬 0 📌 0
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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.

www.buffalo.edu/news/release...

01.05.2025 10:53 👍 5 🔁 3 💬 0 📌 0

For ME, they’re actually dangerous because they encourage sufferers to ignore PEM.

01.05.2025 10:42 👍 2 🔁 0 💬 2 📌 0

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./

01.05.2025 10:42 👍 2 🔁 0 💬 1 📌 0

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/

01.05.2025 10:42 👍 2 🔁 0 💬 1 📌 0

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.

01.05.2025 06:47 👍 5 🔁 1 💬 0 📌 0
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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/petitions/72...

30.04.2025 20:40 👍 2 🔁 1 💬 1 📌 0

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.

30.04.2025 18:51 👍 7 🔁 1 💬 2 📌 0
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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-...

30.04.2025 12:42 👍 198 🔁 70 💬 6 📌 3