Carole Bruce

#ME is a violent, turbulent condition. Words like brain fog, tiredness, aching, mood disturbance, interrupted sleep patterns, do not begin to describe the turmoil of #MECFS bodies. It’s like being attacked by a malevolent being, often for decades and without help or understanding.

Most Drs, nurses and HCPs all cling to the psychosomatic diagnosis wherever possible. Unless the Royal Colleges step in and radically change their attitude, the SMC has different personnel and there is a loud, publicised collective mea culpa from certain powerful people. No change for #ME patients.

I get that the media is slow to catch up with things. I'm in the media, I am slow to catch up with things. But the week Reform's crowd looks like this, the BBC chooses _this week_ to go live to Farage's endless remarks on the budget; makes absolutely no sense

Of all the bbc presenters, Webb’s politics are the easiest to read - because he puts them in newspapers and doesn’t even try to hide them in broadcasts His politics are also mind numbingly predictable

The lessons from Brazil and Serbia? Don't concede one inch of ground to the far right. Don't appease. Don't triangulate. Don't grovel. Don't say they have "legitimate concerns". Mobilise your base, and fight them with all the democratic means at your disposal.

From Ali Barrett who lives with severe #ME We all want to actively protest against the wanton and chosen cruelty of all those in power who believe and act on their spurious belief that ME is psychosomatic. However they frame it, that is their core belief despite all the proof. 🤦‍♀️

Lula: "We had to overcome foreign interference through digital platforms, which we will have to regulate. A crime in the digital world must be treated the same as a crime in the real world. We cannot have monstrous companies earning millions... not paying taxes... wanting to steer elections."

Brazil and Serbia, defying rise the tide of autocracy. This is how we do it, everywhere. 🌈

‘Gilgamesh by Simon Armitage review – an ancient epic is brilliantly translated for our times’ www.theguardian.com/books/2026/o... #Gilgamesh #poetry

#ME

Such a good thread. Heartbreaking truth about #ME and the failure of all advocacy.

If we could drop the word ‘fatigue’ from being the leading definition of #ME it would make a huge difference to the whole perception of this illness. People don’t die or take their own lives because they are fatigued. The name CFS was a political decision, a very dark decision.

We're happy to share that we now have an MP briefing live (joint with @actionforme.bsky.social) which you can send to your MP to give them all the info they need to support Beth Dobbin in her campaign for increased ME research funding. The briefing and our template are linked below👇

Thank you so much @thereforme.bsky.social ànd @actionforme.bsky.social for producing this useful briefing so quickly - it’s very helpful to have this analysis. And Beth - thank you for promoting all this activity - we can see that you haven’t lost your sprinter’s instincts!

If your Dr, therapist, physiotherapist, social worker, friend, government spokesperson,or psychic knows you have ME or may have #ME and tells you to exercise in any way, sack them and name them for not being aware of the NICE guidelines and the danger of exercise for all #pwME

Very pleased that Beth Dobbin has written to the PM asking for more funding for ME/CFS research AND that the BBC is reporting it: www.bbc.co.uk/sport/athlet... Letter to Andy Burnham: www.instagram.com/p/DewbBEtCE1E/

Thank you to Beth Dobbin and BBC Sport for continuing to help #pwME by writing to the PM and publishing her letter. I hope she isn’t having horrible payback from this effort . www.bbc.co.uk/sport/athlet...

Anyone in the #ME community, patient, carer, HCP etc who might be upset about the ‘ push through and be positive’ approach that Miranda seems to be advocating for #pwME during her appearance on Celeb Traitors, might like to contact her for clarification. 👇 Her agent.

Beth Dobbin Olympic athlete who is now nearly totally confined to bed with severe #ME has written to Andy Burnham with some details about the illness and a suggestion as to how he might bring the welfare bill down.

Approving the Jackdaw gas field solves none of our problems, while contributing to the existential crisis of climate breakdown. The government has privileged special interests above the general interest. It's a shameful, cowardly decision.

This feels like a door being slammed in our faces yet again. No explanation, no excuses, just no. @tessamunt.bsky.social as chairman of the APPG for #ME works incredibly hard for us along with other MPs. What can be done? So shortsighted, if money was put into research and care so many could work.

Being ill is a full time job. With no commissioned services or specialists within the NHS for #ME patients have to search out anything that might alleviate the symptoms, fill in complicated forms despite brain fog, support others who are sinking and do PR for our illness. Work!

From Charles Shepherd on Facebook: Beth Dobbin and Dr Shepherd will be talking about Beth’s #ME.

There are no commissioned services or specialists within the NHS. This means people diagnosed with #ME are forced to self-fund appointments with private ME specialist doctors, of which there are only a handful of in the country, all with incredibly long waiting times.

This from Beth Dobbin 👇 is why #ME patients avoid A&E, ringing the Dr, doing testimonial videos to raise awareness, talking to HCPs. We often can’t talk to our families or friends, our carers or helpers. Often a case of choosing between talking or eating. This is the reality 🤐

“Just having a conversation… can impact you afterwards. When I say impact you, you feel like you're dying basically.” Former Olympic sprinter Beth Dobbin describing post-exertional malaise the hallmark symptom of #ME.

"I think I saw four or five different specialists because the symptoms that I was having, they were across multiple [body] systems. All the specialists said 'this is ME' and we don't want it to be that because there's nothing out there for it." #MECFS #LongCovid www.bbc.com/sport/athlet...

“These are some of the sickest patients I’ve ever come across in my life.” Dr @binitakane.bsky.social talking about #MECFS and the lack of research, specialists and services on yesterday’s BBC Radio 5 Live.

From BethDobbin former Olympic athlete, now bedridden with #ME. Still classified as a psychiatric illness in some medical textbooks. Many people still choose to believe this to be the case until it hits family, friend or someone known to be mentally fit. Everyone is vulnerable. It wrecks your life.

What is ME? Former Olympic sprinter Beth Dobbin, 32, now in bed for 22 hours a day due to condition www.lbc.co.uk/article/beth...

The latest edition of Kumar and Clark’s Clinical Medicine (11th edition) was released 6/25 Sadly, though, #ME/CFS has been placed in the ‘General hospital psychiatry’ chapter, more specifically under ‘MUS’ (Medically Unexplained Symptoms) and ‘FND’ Hence the mistreatment 😡

Worth remembering that if she supported Patriotic Alternative instead she would be able to sell her books unimpeded because our government has its priorities straight.

I have never seen coverage of a live trial, one involving allegations of multiple sex attacks on multiple women, framed in a more distasteful way. It's not 'Fame under fire' it's a rape trial. And it involves actual women. And this from the *checks notes* BBC

In 2025, a coroner issued a Prevention of Future Deaths Report following the suicide of Sarah Lewis, who had severe ME, warning that more deaths could occur unless inadequate services, lack of research and poor understanding of ME among healthcare professionals were addressed.

Thanks to Minister Frith for a progress update on the Final Delivery Plan on ME. Good that in collaboration w/ ‘stakeholders’ important documents have been written. But there is far to go before systemic failings across government are addressed. I’m consulting before responding. Initial thoughts…/

Why oh why does everyone now assume that we all have working printers? Tickets, returning items all assume we have these printers or can run off to the post office and scan bar codes. Millions of us don’t or can’t. What a world!

NEW: Prime Minister Andy Burnham finally breaks a decade of UK govt silence…& reveals there was ‘clear’ Russian interference in the Brexit vote. 1/

Reform UK are apparently going to send out an 8 page flyer to 15 million homes. If you fancy sending it back so that they have to pay return postage here is the address. You may want to keep it though, for lighting fires, wrapping fish etc!

The march for Palestine has arrived at Downing Street now. Demanding that the government stop arming Israel 🇵🇸

Anne Carson new Nobel Laureate for Literature.

This looks like a crucial investigation to me, building on an essential body of work by @bylinetimes.bsky.social Please help to support it. subscribe.bylinetimes.com/lightuptheda...

Found this!

A century after Virginia Woolf asked why sickness had failed to become one of literature’s great subjects, writers are still struggling to put physical suffering into words. www.newyorker.com/magazine/202...

“Zionism is racism” is not a policy but a slogan. It compresses a complex history, going back millennia, and a very wide set of beliefs into one narrow meaning. The answer to genocide is not discrimination. We don't fight racism with racism. I’m gutted to see this motion adopted by the Green Party.

The "Zionism is racism" motion, to be debated at the Green Party conference tomorrow, will not advance the Palestinian cause one inch. But, if adopted, it would marginalise and discredit the party. There are powerful ways to confront the genocide. Toxic gesture politics isn't one of them.

Just totally fed up/broken hearted at the appallingly feeble efforts to help #ME patients over decades. Research, care, education. We are nowhere. 💔

"This is the opposite of how science ought to work." George Monbiot on those pushing "false and dangerous" cures for #MECFS, "entrenched" in their beliefs and doubling down rather than admit the "great harm" to the lives of thousands of people.