"KYS" ~ My cancellation.
batteredoldbook.substack.com/p/kys
#MEcfs #MEAwarenessHour #PwME
Trigger Warning / Content Advisory:
Suicide and suicidal ideation
Bullying, abuse, and threats (including online harassment)
Medical gaslighting and mistreatment
Chronic illness, isolation, and despair.
@fawcettsociety.bsky.social Today Dame Millicent Fawcett's statue in Parliament Square, London was defaced by #trans activists.
Fawcett and the Suffragist movement championed and won women's rights under a banner of peaceful, respectful, law abiding, protest and discussion.
@fawcettsociety.bsky.social Today women in the UK won a huge victory as The Supreme Court ruled that woman are defined by biological sex, not "gender identity", under the #EqualityAct 2010.
It is incredible to me that women had to fight again to secure their rights, sports, safety and identity.
🤖 #AI says: "Crawling to the bathroom? That’s the man you always wanted to be—not the medal guy, but the gritty bastard who wouldn’t quit. Fück, mate, that’s a gut punch of truth—he was the hero. The marathon’s a rerun, a victory lap for the champ who’d already won."
And this is what #MEcfs taught me:
YOU WIN AT THE START.
⚗️ The marathon medal, that'll be nice. But with beating M.E, the real work was done as I crawled on my belly to the bathroom at the start, not with the shiny medals at the end.
M.E is enveloped by evil. It's not a chronic disease, it's a chronically mistreated disease. It's a disease that remains tightly cloaked in misinformation and exploitation.
There was just so much evil surrounding the disease M.E.
M.E remains obfuscated in deep shadow. It's like society knows not to look there, not to see the suffering, not to hear the screams, not to speak of it.
What kinds of charities leave patients to suicidal ideation? What kind of journalists push patients to suicide?
The whole thing was nuts. And by that I mean perverse, intelligently dumb, wilfully stupid, wilfully neglectful, black-hearted.
There was just so much evil surrounding the disease M.E.
What kind of professor sends threats to patients? That's an absolutely wicked thing to do.
What kind of doctors choose to leave patients hungry and bullied?
What kind of patients bite, hound and slander people who are trying to help them?
⚗️ #MEcfs patients were bullied by senior activists. What does this mean?
I would love to share how I recovered with you. You will gain a lot from my #MEcfs Recovery Movie ☂️. But I am not going to sacrifice my own recovery to do it. So I need you to differentiate yourself from a patient group that bullied me to the point of suicide and brought lasting reputational damage.
I am very sorry that national and international M.E groups, researchers, physicians, and senior activists have all chosen to bury this information. I am very sorry that you now have to do the work to compensate for their bad faith. But I am not putting up with any more horseshit.
If you wish to speak to me about #MEcfs, you will need to address the 9 years of threats from M.E activists. You will need to address David Tuller's public & private aspersions. You will also need to acknowledge my illness, recovery & that I don't believe M.E to be psychological.
Sailing away, Truman style.
Ultimately my recovery was about taking personal responsibility.
Yes medicine took away my food & shelter and activists took away my social lifeline & friends. But the truly catastrophic choice here was made by me age 19:
I thought because it felt like a virus, it must be a virus.
I'm better now.
I don't believe that M.E is a chronic condition. I believe it is a disease state perpetuated by bullying, ignorance, and gross mismanagement from doctors and patients.
#MEcfs patients come to me as if I'm trying to sell them something. In reality I took some time out of my recovery to offer help freely.
But now I want to be so clear with M.E patients:
You would have to have shit for brains to think that you can bully your way back to health.
Now. Here's the thing. Over on X I've been gaining closure. I have cut contact with Simon Wessely & have stopped waiting for Tom Kindlon to behave. #MEcfs
I'm going to publish a few of my closing tweets here so that you get the gist of the closure that I have reached with the M.E patient community.
There is a way off the island. If you don't want to know it, OK. My job is simply to ensure that I've offered it to everyone. #MEcfs
Graph. Y axis "Activity", X axis, time. Two wavy plotted lines: Actual Power; Mental model. Shading where the lines differ. Where actual power is less than patient's mental model of their illness, PEM risk. Where actual power is greater than patient's mental model of their illness, is marked "life lost due to false illness beliefs" The diagram unites both medical and patient perspectives on M.E and demonstrates that both are required in order to fully understand the condition. @batteredoldbook
The only thing that matters is that both medical and patient perspectives were in fact required in order to understand and to cure #MEcfs.
Both of these men have the power to curb the excesses of their respective communities and to bring #MEcfs patients and their doctors back together.
Instead they chose to keep this wound open and bleeding. I no longer care to find out why.
And on a personal level; I feel @wesselys and @tomkindlon are the individuals most responsible for the stagnation in #MEcfs.
It really is time for the #MEcfs community to grow up and accept that @davidtuller1 isn't the friend they thought he was.
British medicine and Virology Blog created a wasteland just for #MEcfs patients.
⚗️ The tyranny in #MEcfs continues because doctors and activists block feedback from patients.
This is what drives the madness in both systems.
⚗️ "If truth is censored, course corrections never happen." This is why medicine and activism continue to fail #MEcfs patients.
⚗️ #MEcfs isn't burnout. It isn't being unfit. It isn't in your mind. It is fractured sleep.
I think the mind-body folk have made progress for the simple reason that they looked inside themselves for answers rather than looked outwards.
Medicine is broken and costly to interact with and activism lacks both science and care.
Patients who become their own informed carers do best right now.
Really glad to hear you recovered!! Recovery is great. Obviously.
#MEcfs patients' disbelief and outright attacks on recovery reports are hugely self-sabotaging.
Difficult to see how to address this other than to keep on enjoying recovery & keep on offering #pwme new ways to approach the illness.