Royal Free 1955
@RFH1955
ME/CFS vault. Research @CiaranJ_Farrell/@Needles_Toosay, curator @Needles_Toosay. Petitions/coffee mornings/emojis don't solve problems.
May I remind new followers that there's now approximately three years' worth of tweets in this account. Many of the tweets feature rarely seen or forgotten bits of 'M.E.' history for you to study so do go through the archive if you have the time.
"Boost in support for patients with chronic fatigue syndrome or ME". That's not for the @DHSCgovuk to say - that's for #myalgicencephalomyelitis patients to decide. Self promotion is not a recommendation.
😔Epitomising the inept handling & misunderstanding of ME the gov press release commits the faux pax of leading with 'chronic fatigue syndrome' The ME Delivery Plan "provides the foundations for significant improvements" But not the actual improvements gov.uk/government/new…
How many more deaths do you need before you stop accusing people of faking their illnesses? “I was accused of fabricating Maeve’s symptoms right up to the point in which she died.”
Clip Sarah Boothby on todays BBC Breakfast segment on the UK government's new #MECFS Delivery Plan “I was accused of fabricating Maeve’s symptoms right up to the point in which she died. Two days before she died, we were subject to safeguarding investigations.”
Today is not a victory. The @DHSCgovuk have, through their own inactions over decades, placed #myalgicencephalomyelitis patients up the creek without a paddle. The plan is a PR exercise. New ways of campaigning will have to be considered.
What is striking in the release of The ME Delivery Plan, is the strategic silence of @wesstreeting - no comment - no mention - no press - not even a tweet or RT Yet, it's under his watch, this echo in the void tells us much about the NHS's priority for ME.
I see a lot of people criticising the @MEAssociation for asking for artwork from people with #SevereME, but not criticising @MEActNet who have been doing the exact same thing for several years. Some very valid points have been made, but why the double standard? *confused*
Four Days Left to Submit Art for Severe ME Artists Project– deadline is July 24th! Details: meaction.net/2025/07/10/sev… We have had a wonderful response so far and can’t wait to see what comes in during these next few days! #SevereME #SevereMEDay #pwME #art
“Do you really think you know more about your condition than an actual doctor?” Yes, actually, and that’s a problem. I’m not saying I’m a genius. I’m saying that there are things that they do not know enough about yet still act like they know everything. It leads to negligence.
Somewhat rhetorical question but would a message on social media be noted in any investigation into her death?
She died of cardiac arrest 3 days later. When people are permanently disabled by Covid/viruses & there isn’t enough “proof” for medicine or loved ones, The Suffering are shunned by society and isolated, repeatedly told to try harder & suck it up, & then they die.
Paris researchers studied golden hamsters and found that SARS-CoV-2 can persist in the brainstem for 80 days, triggering gene changes linked to neurodegeneration and causing depression-like behavior, memory loss, and anxiety-like symptoms. nature.com/articles/s4146…
She's doing it again! x.com/_Lucibee/statu…
Anna Gregorowski (bacme.info/people/anna-gr…) seemed to imply that there were already specialist services available for severe ME. That simply isn't true. It also seems that NHSEngland is working with BACME on their "stocktake" audit of services.
🔥"Accelerated brain ageing correlates with reduced cognitive performance only in COVID-infected participants. Our study highlights the pandemic’s significant impact on brain health, beyond direct infection effects,"👇
The Covid pandemic accelerated brain aging as seen in @uk_biobank paired MRI, 2 cohorts nature.com/articles/s4146…
Infection-associated chronic conditions: Why aren’t we talking about these disorders? healio.com/news/rheumatol…
From Long Flu to Long COVID: A Brief History of Postviral Illness thinkglobalhealth.org/article/long-f…
And now there’s been a Ministerial Statement. Hopefully the Plan will be available soon(ish). 👇🏽 questions-statements.parliament.uk/written-statem…
June 30 + 22… 🥳 I’m hugely relieved that DHSC is apparently publishing the Final Delivery Plan today. But it’s contemptuous that it is only being released as the long Summer Recess starts, depriving MPs of the opportunity for proper scrutiny. tinyurl.com/5zf6h89p
The long wait for the Final ME Delivery Plan has continued…The Times and campaign groups published details of the Plan at midnight, but it wasn’t available to the rest of us at midday. 🙏🏽 to Minister Ashley Dalton for coming to reiterate this isn’t how it should be. Fresh start?
Advocate extraordinaire @tessamunt stands up in parliament just now demanding to know why the Delivery Plan has not been made public. @AshleyDalton_MP seemingly unaware - clear this is not how it should be and says she will take up with officials.
My daughter died from ME. This new plan fails her and others like her. thetimes.com/uk/healthcare/…
We're improving care for people living with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). This includes new training for NHS staff to help tackle the stigma of the condition. ME/CFS patients will also get care closer to home through our 10 Year Health Plan.
Please click the poll if you would be in for this study. If the PI can get evidence that patients are interested & enough are willing to participate this might actually happen! There aren't any continuous lactate monitors that are commercially available yet, so this would be…
#TheAcidTest2? People with Long COVID and ME/CFS, would you want to participate in a study using continuous lactate monitors? The monitor would be similar to the CGMs available now & would be provided free. It would require daily symptom tracking & wearing the sensor for 30…
Who is in charge of this place. They need a radical overhaul. Imagine in the days when AIDS patients were without treatment that their charity asked patients to send in paintings.