This. Every day we try to be active.

Why do people with ME claim to know more about the medical aspects of their disease than their doctors? Bc the mechanisms that ensure doctors' knowledge fail in the case of ME, and sick people have created mechanisms of knowledge production and dissemination to pick up the slack

1/3 Too many shocking accounts of appalling treatment of patients with #ME continuing to emerge. Despite some advances in recent years, the patient community has yet to change an entire culture. Until that happens, there will be little substantive change in attitudes/treatment...

3/3 Revised view summary: Problems w public inquiries 1. Too many in recent years reducing impact 2. no enforcement provisions for inquiry recommendations 3. Scoping difficulties re. topic spanning several decades NB MUST be preceded by media campaign to address negative culture

2/3 I developed my ideas and wrote about this over several years. I have now revised my views a little but the basic thesis remains the same. I'm too ill to write more detail these days but this 2022 post sets out the general points: valerieeliotsmith.com/2022/0… .......

Kemi Badenoch, "It doesn't matter what you earn, we don't want you to be punished for working harder" My view: There is a pretty big assumption buried in that sentence: that earning more necessarily means you are working harder. It doesn’t. A care worker doing exhausting 12-hour shifts, a cleaner starting at 5am, a nurse working nights or someone juggling two minimum-wage jobs can work extraordinarily hard and still earn a fraction of someone sitting behind a desk on six figures. ONS earnings data shows enormous differences in pay between occupations; wages reflect things like skills, bargaining power, scarcity, sector, seniority and ownership of capital — not simply effort. In social care, for example, around 1.5 million people perform essential and often physically and emotionally demanding work, yet low pay and insecure employment remain widespread. There is nothing wrong with arguing that people should be able to progress and keep a reasonable share of what they earn. But politicians should be very careful about equating income with effort. Some of the hardest-working people in Britain are also among the lowest paid.

“Bb [Borrelia burgdorferi] rapidly disrupts the GI immune barrier in infected mice. ”Similar symptom-associated blood markers were found in acute Lyme disease patients, mostly resolving w/antibiotic treatment.

Fatigue is an unrelenting, deeply isolating symptom in ME/CFS. It cuts individuals off from family time, social activities, and hobbies, fundamentally fracturing their identity and how they view themselves. It leaves people grieving who they used to be. tinyurl.com/fatigueimpactME

Interesting news regarding the new #wheelchair - I was at the cafe today, and by pure chance the guy at the next table had exactly the same chair as I've ordered - pushrims, wheels and all. I asked him his opinion, he said he loved it! Got the chance to handle the Ellipse pushrims and they're perfect for my hands, particularly the right in which I'm losing dexterity. My Surge pushrims are knackered, hence the need for the Ellipse rims - it's painful on the thumbs to push any distance at present. There's exactly £142 to hit the target, so if you're able to give a like, a share, or even a donation, you'll have the deepest gratitude from me I can give. 4 weeks until final payment is due, and I'm sure it's doable! gofund.me/1abd5f442

SARS-CoV-2 Primary Care Surveillance in England Data from the RCGP Sentinel Surveillance system of around two thousand GP Practices. In Week 39, ending 27 September 2026, the RCGP national average COVID-19 incidence rate for England (all ages) increased… (RCGP data & chart)

Lead author of @cochranecollab review of Exercise for ME, worked with PACE triallists, and contacted my boss to complain when I praised ME patients for fighting bad science, linking to this article, on my private FB page. Unexpected & intimidating statnews.com/2016/09/21/chro…

Great talk between @davidtuller1 & George Monbiot - George mentions an interaction with Oxford Professor M Sharpe of PACE trial, this same Prof phoned up my Head of Centre to complain about me writing about ME/CFS and critiquing his model - This was bullying and I also asked for the evidence, because my papers were factual and reviewed the science. youtube.com/watch?v=MaaeQ7cr…

“I was just horrified… The most heartbreaking stories… Treatment is absolutely appalling for patients.” George Monbiot speaking to @davidtuller1 about the hundreds of messages he received from people around the world with #MECFS about their experiences of treatment.

Nosocomial Covid Infections in Wales 'Number of inpatient Covid-19 cases in hospital in Wales' On 27 September 2026, at least 71% of inpatient Covid cases in Wales were the result of hospital-acquired SARS-CoV-2 infection... (PHW data and table)

I put loads of effort into finding this information and processing it. It hardly feels worth it - it barely gets seen. But I just see it as my role to make it public. What other people do with it is up to them, I guess.

Ideas for shoes and insoles? Very painful soles esp my heels since M.E , (not plantar f). Been using Sketchers shoes, thick cushioned socks, old style foam insoles. (Carnation brand). Unable to use less, ever. Those insoles no longer available, gel don't help. Any alternatives?

And the numbers are striking. A study of 65M adults found POTS cases had increased SIGNIFICANTLY since the pandemic began. ▪️Pre-2020: Incidence Rate (IR) of POTS was 1.42/1M cases per person-year ▪️Post-2020: IR rose to 20.3/1M cases per person-year academic.oup.com/ehjqcco/art…

I wish I was free of M.E. and could walk for miles again in sunshine, mist or rain. #MEAWARENESSHOUR tonight at 8pm. All Welcome. #Justice4ME #MyalgicEncephalomyelitis #FreeMe

MEpedia is going strong-- we just received notice that MEpedia reached 20,000 clicks from Google search in the past 28 days alone! Your support helps important knowledge get in the right hands. Check us out at me-pedia.org! #pwME #MEpedia #MECFS

🚨 PETITION 🚨 Make #MECFS learning modules mandatory for NHS staff. Please sign and share! 💙 change.org/p/make-me-cfs-lea…

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