Meraki_mmy

‘The withholding of lifesaving care is not a theoretical concern: it is a documented, devastating outcome of misapplying psychosomatic models to a serious, organic illness.’ BMJ opinion piece on treatment of #ME patients. Too many die Too many suffer for decades. #MEAwarenessDay

One of James Strazza’s final poems. released today for #MEAwarenessWeek by his mother Gale Warden. James, a musician and poet, died last week, he had suffered from severe #ME since 2019.

“The bad news is that it’s been a battle every inch of the way, and continues to be every single day. Savannah’s safety is still far from guaranteed and we are struggling to hold the ground we have gained in the face of hostility and disbelief.” gofundme.com/f/severemergen…

What is #MECFS? A brief overview of symptoms, diagnosis and management based on the 2021 NICE guideline. It’s not being tired all the time, patients have an energy impairment that dramatically limits their activity.

Short German TV clip. #MECFS cases have doubled since 2020, many linked to #LongCovid. Patients describe lives wiped out overnight, years housebound or bedridden, and having to choose between showering or playing with their child.

An explanation of “it is systemic” = PEM affects body systems that weren’t even used during the exertion. It is NOT delayed onset muscle soreness. We can use our brains too much one day and suffer whole body PEM for days, with muscle pains or joint pains on top of whole…

“Having earned my living as an inventor and a thinker, having limits on my thinking is pretty awful.” Mark, a retired technologist, developed #MECFS after catching chickenpox in the mid-80s and gradually became more disabled. From BBC Lifeline: Action for ME

“They’ve grown up with me always being ill and I feel that I’ve let them down because of that.” Andrea has lived with severe #MECFS for 33 years and is confined to bed nearly 24 hours a day. From BBC Lifeline: Action for ME

Olympian Montell Douglas presenting BBC Lifeline for Action for ME “For years, I’ve had chronic pain due to a medical condition and know how difficult it can be to live with. And those with ME also have to deal with social stigma and a lack of support.” #MECFS

Wendy Duffy was a healthy 56-year-old woman. Yesterday, she was alive. Today, she is dead by suicide. 💔 And today, Parliament was debating whether the NHS should be allowed to help people like her end their lives. Thank God we have not yet crossed that line. But Wendy was still failed. Not because the state refused to kill her. Because nobody managed to save her. This is the lie at the heart of “assisted dying”: it dresses despair up as dignity and abandonment up as compassion. A civilised country does not respond to suicidal people by making suicide easier. It surrounds them with love, care, protection and hope. Rest in peace, Wendy.

I don’t think people talk enough about the grief that comes with living in a body that you can’t control. Being disabled is such a huge toll mentally where you want to do something so badly but your body just literally won’t let you. The grief with that is absolutely unreal.

Many Drs & HCPs still believe that the advice that Emma was given, which made her #ME so much worse, is the correct advice They're supported in many cases by the Royal Colleges, who refuse to support the '21 @NICEComms g'lines for #ME Healthcare is still unsafe for #pwME

Powerful testimony on #MECFS by Emma Shorter in the Scottish Parliament from 2018 “It turns fit and active people into ghosts… I know teachers who can’t teach, children who can’t play, and parents who can no longer hold their children.”

British journalist and television presenter, Ranvir Singh opens up the real truth while discussing the Mandelson scandal: “I’m afraid it taps into that very deep feeling, that the people we vote for are not the people who are running the country. The people we vote for are the front face, a shop window, but there are these unknown, unelected, highly paid, very influential people who are more powerful than the prime minister. We see the tip of the iceberg. We think we’ve got a democracy that’s open and fair. We don’t.” Well said. 🎯

Was this GP struck off just because he asked a Muslim woman to remove her veil? How likely does that sound? 🤷‍♀️ Did he actually ask her to remove her veil 'because he was struggling to understand her?' Let's take a look at what really happened based on the tribunal reports... 🧵 1/25

I have NEVER – EVER – had to encourage someone with ME to do more. I always – ALWAYS – have to persuade them to do LESS. To stop a favourite activity. To adjust a task to lessen the effort.

My #MECFS scandal explainer video has just passed 200,000 views. Given the level of interest, I’ve written a follow-up article covering key examples I didn’t include, as well as some developments since. @abrokenbattery/me-cfs-scandal-follow-up-4bb776e9d459" target="_blank" rel="nofollow noopener">medium.com/@abrokenbatter…

This is my video that recently went viral. I cover the euthanasia situation in the Netherlands. For people under 30, it mostly targets autistic people (75%) and women (74%).

Professor Chris Ponting on the 116 blood molecule differences his team found in people with #MECFS “This is not a psychological disease” people did not alter their blood molecules just to “spook the psychiatrists”. Clip from @hope4mefibroni 2026

Dr William Weir on how the influence of Simon Wessely and his colleagues created an overriding tendency among doctors to insist that #MECFS is a psychological disorder. Clip from @hope4mefibroni Collaboration for Change 2026