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Royal Free 1955

@rfh1955.bsky.social
1.1K followers 853 following 2.6K posts

ME/CFS archive. For education, not profit. Researched since 2011 by @continuitytweets.bsky.social & @ciaranj_farrell. Reposts not necessarily endorsements. No art, emoji etc. rfh1955.blogspot.com

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Royal Free 1955 @rfh1955.bsky.social · 02/03/2025
The Daily Telegraph, UK. 2nd March 2006. #mecfs #cfsme #myalgice #myalgicencephalomyelitis
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Royal Free 1955 @rfh1955.bsky.social · 02/03/2025
The Black Country Evening Mail, England. 2nd March 1990. #mecfs #cfsme #myalgicencephalomyelitis #myalgice Psychiatrists and children again.
"Campaigners believe dozens of children are being wrongly diagnosed because the illness is largely ignored by the medical profession, which could lead to tragic consequences."

"Parents are being told their child is school phobic or just plain misbehaving and they are being treated for psychiatric disorders."
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Royal Free 1955 @rfh1955.bsky.social · 02/03/2025
The Irish Independent. 2nd March 1993. About 'TATT' but mentions #myalgicencephalomyelitis #cfsme #mecfs #myalgice
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Royal Free 1955 @rfh1955.bsky.social · 01/03/2026
Was ever the case with post/persistent illness patients.
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Richard Vallée @richardvallee.bsky.social · 01/03/2026
Medicine's ongoing failure to deal with Long Covid did not begin in 2020. It happened decades before that. Nothing has changed since, all of this has been and continues to be intentional. There is something deeply wrong with parts of this industry, in how they deal with their own failures.
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Royal Free 1955 @rfh1955.bsky.social · 01/03/2026
Video of presentation on #longcovid. She immediately rules out any discussion on the overlap between long Covid and #myalgicencephalomyelitis. The medical profession’s complete mishandling of ME is, in part, why there’s nothing available for long Covid. @crick.ac.uk
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Royal Free 1955 @rfh1955.bsky.social · 01/03/2025
Florida Today. 1st March 1991. #mecfs #cfsme #myalgicencephalomyelitis #myalgice
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Royal Free 1955 @rfh1955.bsky.social · 01/03/2025
Ten years ago today. The Plain Dealer, Ohio, US. 1st March 2015. #mecfs #cfsme #myalgicencephalomyelitis #myalgice
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Royal Free 1955 @rfh1955.bsky.social · 01/03/2025
The Leader-Post, Saskatchewan, Canada. 1st March 2021. #longcovid #cfsme #myalgicencephalomyelitis #myalgice #mecfs
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Royal Free 1955 @rfh1955.bsky.social · 01/03/2025
The Saginaw News, US. 1st March 1996. Not about #myalgicencephalomyelitis as such but it is mentioned. #lymedisease #chroniclyme #myalgice #mecfs #cfsme
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Royal Free 1955 @rfh1955.bsky.social · 01/03/2025
The Daily Republican-Register, Illinois, US. 1st March 1989. #mecfs #cfsme #myalgicencephalomyelitis #myalgice
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Royal Free 1955 @rfh1955.bsky.social · 01/03/2025
The Daily Herald, Utah, US. 1st March 1990. #cfsme #mecfs #myalgicencephalomyelitis #myalgice
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Royal Free 1955 @rfh1955.bsky.social · 01/03/2025
About #gulfwarsyndrome #gws but mentions #myalgicencephalomyelitis #cfsme #mecfs #myalgice The Daily Post, Liverpool, England. 1st March 1999.
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Royal Free 1955 @rfh1955.bsky.social · 01/03/2025
The Evening Telegraph, Derby, England. 1st March 1997. #mecfs #myalgicencephalomyelitis #myalgice #cfsme
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Royal Free 1955 @rfh1955.bsky.social · 01/04/2025
The Daily Telegraph, UK. 1st April 1994. Rodney Silver (a.k.a. Anthony Daniels) gets a reply to his diatribe. #myalgicencephalomyelitis #cfsme #myalgice #mecfs
SIR - In common with most ME suf-terers, I spent two bewildering years of progressively debilitating illness and wildly contradictory diagnosis before my condition was eventually labelled myalgic encephalomyelitis.
As a busy, hard-travelling founding director of an international com-pany, I am furious at this interruption to my career.
Not surprisingly I, and I am sure many other sufferers, found the sneering article by Rodney Silver (March 30) patronising and offensive with its implication of malingering.
Believe me, ME is a draining, frequently painful, complex and as yet incurable condition. Articles such as this only add to the suffering and confusion of innocent sufferers.
Most of us do not care whether the cause is viral or psychological. We know that we are gravely ill and would simply like to be cured. Perhaps Dr Silver should address himself to that.
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Royal Free 1955 @rfh1955.bsky.social · 01/03/2025
The Hoddesdon and Broxbourne Mercury, England. 1st March 1996. #mecfs #cfsme #myalgicencephalomyelitis #myalgice
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Royal Free 1955 @rfh1955.bsky.social · 01/03/2025
Thirty years ago today. The Guardian, UK. 1st March 1995. #cfsme #mecfs #myalgice #myalgicencephalomyelitis
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Spencer Carter @microburin.bsky.social · 28/02/2026
Pension letter today, short because there aren't many numbers and they are small. I retired on 9-Feb-2026 age 59 (due to disability, the #LongCovid life-upside-down mess). Very strange feeling. Cash runs out in 7 years, state pension age in 2033, but hey ho for now. Housebound & fractured pelvis.
Spence in heather, out to pasture.
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sarah boothby @swastrosarah.bsky.social · 28/02/2026
@ashleydaltonmp.bsky.social one for you to ask your department. If you will.
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Wallflower 🌸 @princessofthedark.eurosky.social · 28/02/2026
www.nature.com/articles/s41...
nature.com
Deep phenotyping of post-infectious myalgic encephalomyelitis/chronic fatigue syndrome - Nature Communications
Post-infectious myalgic encephalomyelitis/chronic fatigue syndrome (PI-ME/CFS) is a disabling disorder, yet the clinical phenotype is poorly defined and the pathophysiology unknown. Here, the authors ...
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sarah boothby @swastrosarah.bsky.social · 28/02/2026
Do you have a link to the published paper? Is it a new analysis of the original NIH study describing PEM as "effort avoidance"? @davetuller1.bsky.social are you aware?
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Tove Harris @toveharris.bsky.social · 27/02/2026
International Long COVID Awareness im März International Long COVID Awareness Day am 15. März 2026 Thema 2026: Impacts of COVID & Long Covid on the cardiovascular system www.longcovidawareness.life #LongCOVID #COVID #COVID19
Ein Herz, daneben ein Pfeil, der zu einem Text zeigt.

Text:

LONG COVID:

EVERY HEARTBEAT COUNTS

FIBROSIS

NECROSIS

PERICARDITIS

MYOCARDITIS

HYPERTENSION

HEART FAILURE

FIBRILLATION

HEART ATTACK

THROMBOSIS

VESSEL DAMAGE

ARRHYΤΗΜΙΑ

And more...

Every COVID infection can cause damage.

High quality masks can help protect you.

#LongCovid

#Long CovidHeartbeats

#LongCovidAwareness
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Royal Free 1955 @rfh1955.bsky.social · 28/02/2026
Llewellyn King again and a passing mention of #myalgicencephalomyelitis. www.davisenterprise.com/forum/commen...
davisenterprise.com
Commentary: How loneliness became a pandemic
You don’t have to be sitting by yourself on an island to be lonely. Loneliness is everywhere.
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Royal Free 1955 @rfh1955.bsky.social · 28/02/2026
From Chronic Fatigue to 90 Minutes of Daily Yoga. indonesiakini.id/2026/02/28/f...
indonesiakini.id
From Chronic Fatigue to 90 Minutes of Daily Yoga - indonesiakini
From Debilitation to Deep Healing: A Journey Through Chronic Fatigue and the Power of Movement For over two decades, Caroline Ings-Chambers has dedicated her career to guiding others through the trans...
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Royal Free 1955 @rfh1955.bsky.social · 28/02/2026
New Study Uncovers "Exhausted" Immune System in ME/CFS, Offering Hope for Diagnostics and Treatment. ekhbary.com/news/new-stu...
ekhbary.com
New Study Uncovers "Exhausted" Immune System in ME/CFS, Offering Hope for Diagnostics and Treatment
A groundbreaking study from the National Institutes of Health (NIH) has revealed critical insights into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/C
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COVID Chronicles @covidchronicles.bsky.social · 28/02/2026
"…pharmaceutical firms want to await a concrete biomarker that could serve as a clinical trial end point before putting any resources toward long COVID studies, but it’s not possible to find such a metric without more studies." They need proof. We need hope. #Medsky #LongCOVID
cen.acs.org
Long COVID studies stymied by pharma’s lack of cooperation
Academic researchers want to repurpose drugs for the condition. Manufacturers aren’t supplying them
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Prof Nisreen Alwan @nisreenalwan.bsky.social · 27/02/2026
Our paper on Symptom Patterns, Recovery, and Impact of #LongCovid is now published. This is follow up data over 1 yr. Note how the pattern of symptoms changes over time with most starting out as fluctuating pattern and more ending up with a constant symptom pattern. academic.oup.com/ofid/article...
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Royal Free 1955 @rfh1955.bsky.social · 28/02/2025
The Times, Shreveport, US. 28th February 2024. #longcovid #cfsme #myalgicencephalomyelitis #myalgice
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Royal Free 1955 @rfh1955.bsky.social · 28/02/2025
The Chronicle, Crewe, England. 28th February 1996. #cfsme #mecfs #myalgicencephalomyelitis #myalgice
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Royal Free 1955 @rfh1955.bsky.social · 28/02/2025
The Daily Post, Wales. 28th February 1995 - thirty years ago today. About #gulfwarsyndrome #gws but mentions #cfsme #myalgicencephalomyelitis #myalgice #mecfs
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Royal Free 1955 @rfh1955.bsky.social · 28/02/2025
A decade ago today. The Independent, UK. 28th February 2015. #mecfs #cfsme #myalgicencephalomyelitis #myalgice
Now researchers at Columbia University in New York say they have singled out a group of molecules involved in the body's immune response to infections, which were present at higher levels in blood samples of ME/CFS patients when compared with people without the condition.
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Binita Kane @binitakane.bsky.social · 27/02/2026
Really well. Unfortunately they cannot mandate training for physicians (this should never have been stated in the plan). We have discussed a multi pronged approach to increase education and awareness. Watch this space!
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Lucibee @lucibee.bsky.social · 27/02/2026
Anyone know how the meeting on Wednesday between DrCS and @binitakane.bsky.social and the RCP reps went? #MEDeliveryPlan
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Sammie McFarland @sammiemc.bsky.social · 27/02/2026
I’m sharing this not just as someone involved in campaigning, but as a mum. At the start of the pandemic, I was told COVID wouldn’t affect children.My child developed #LongCovid. That experience changes how you see everything, especially conversations about prevention. @departmentforedu.bsky.social
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Irish Examiner @irishexaminer.bsky.social · 27/02/2026
dlvr.it
Taoiseach commits to meeting long covid survivors over pay issue
Some 159 frontline healthcare workers lost access to the special leave with pay scheme on December 31 following several extentions
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Rachel K. (Tala) @talaattanagra.bsky.social · 27/02/2026
Potentially related to The fact that women are more affected by autoimmune & inflammatory conditions. (To read more later.) #MEcfs
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Royal Free 1955 @rfh1955.bsky.social · 27/02/2026
Research into ME/CFS to be discussed at event in Winchester. www.hampshirechronicle.co.uk/news/2587967...
hampshirechronicle.co.uk
New research into ME and chronic fatigue syndrome to be discussed at symposium
THE next steps in research into ME will be discussed at a gathering in Winchester.
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Royal Free 1955 @rfh1955.bsky.social · 27/02/2026
There’s seven figures worth of people out there in the UK with post/persistent infection illnesses. They have been ignored. Regardless of the colour of the government this must become a political issue to the point where parties do not treat these people as expendable. @ashleydaltonmp.bsky.social
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Royal Free 1955 @rfh1955.bsky.social · 27/02/2025
The Daily Gleaner, New Brunswick, Canada. 27th February 2004. #myalgicencephalomyelitis #cfsme #myalgice #mecfs
A new check list to help diagnosis chronic fatigue syndrome has been developed by a group of Canadian doc-tors, says the organization that lobbies on behalf of those with the mysterious ailment.
But the disease remains controversial in the medical community and the Canadian Medical Society has rejected a request to circulate the new check list amongst its members, says Philipa Corning, vice-president of the National Myalgic Encephalomyelitis Action Network.
Corning, a Fredericton resident, said she remains frustrated by the response of the medical community to chronic fatigue syndrome.
"When I was ill I would go home and scream a lot," she said, in a recent interview. "What we have now is a Canadian check list that GPs (general practitioners) can follow."
Chronic fatigue syndrome (CFS), which is sometimes called myalgic encephalomyelitis, is characterized by an extreme lack of energy not related to exertion and can include a wide range of other symptoms such a cognitive dysfunction and sleep disorders. It can range in severity from annoying to completely debilitating.
Various studies have shown the rate of CFS in the Canadian population to range from 75 cases per 100,000 to 2,600 cases per 100,000.
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Royal Free 1955 @rfh1955.bsky.social · 27/02/2025
The Muskegon Chronicle, US. 27th February 1990. #mecfs #cfsme #myalgicencephalomyelitis #myalgice
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Royal Free 1955 @rfh1955.bsky.social · 27/02/2025
The Niagara Falls Review, Canada. 27th February 1988. #epsteinbarr #ebv #myalgicencephalomyelitis #myalgice #cfsme #mecfs
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Royal Free 1955 @rfh1955.bsky.social · 27/02/2025
The Guardian, UK. 27th February 1996. Two familiar people (to UK followers) mentioned here. #myalgice #cfsme ##myalgicencephalomyelitis #mecfs
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Royal Free 1955 @rfh1955.bsky.social · 27/02/2025
Thirty years ago today. The Leicester Mercury, England. 27th February 1995. Dr. Martin Vaughan "suggested that medical students should receive training in how to recognise and treat ME and be sympathetic to sufferers". #cfsme #myalgicencephalomyelitis #myalgice #mecfs
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Billy Hanlon @bhanlon15.bsky.social · 26/02/2026
Stanford Medicine: Patients Find Peace and Answers at Stanford’s Long Covid Clinic "Because of the sheer scale of the pandemic..we’re talking about millions & millions of people at the same time experiencing these mysterious symptoms" – Linda Geng, MD domannualreports.stanford.edu/patients-fin...
domannualreports.stanford.edu
Patients Find Peace and Answers at Stanford’s Long Covid Clinic | DoM Annual Reports
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Royal Free 1955 @rfh1955.bsky.social · 26/02/2026
Likewise the useless UK government. Nothing personal @ashleydaltonmp.bsky.social but the government that you’re in must do something substantial - now. This current situation is absolutely unacceptable.
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ArgyllanderⓋ🏴󠁧󠁢󠁳󠁣󠁴󠁿🇪🇺😷 @argyllander.bsky.social · 26/02/2026
Well what do you know, #covid casually makes an appearance in this heart health article. #longcovid #covidisnotover #covid19
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ME Association @meassociation.org.uk · 26/02/2026
News Medical: Study identifies antiviral protein IFN-γ as a potential biomarker for Long COVID fatigue  Read more: meassociation.org.uk/vpow #LongCovid #LongCovidResearch #PostCovidSyndrome
meassociation.org.uk
News Medical: Study identifies antiviral protein IFN-γ as a potential biomarker for Long COVID fatigue - The ME Association
A study, led by The University of Cambridge, has identified […]
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Verena Hackl @verhac.bsky.social · 26/02/2026
#MECFS
Printversion des Artikels „Wir brauchen keine Durchhalteparolen“ zu ME/CFS aus dem Originalpost
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Royal Free 1955 @rfh1955.bsky.social · 26/02/2026
Telford student told she'd never walk again set to tread catwalk as beauty queen. www.shropshirestar.com/news/local-h...
shropshirestar.com
Telford student told she'd never walk again set to tread catwalk as beauty queen
Watch Shropshire student Elspeth explain how she wants to show you can have mobility aids and “look beautiful and succeed and be noticed”.
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