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Royal Free 1955 @rfh1955.bsky.social · 10h

The Birmingham Post, England. 17th October 1998.

"Birmingham Children's Hospital declined to discuss the psychiatric treatment of ME...."We do not have a specialist ME clinic so it does not affect us"" - twenty-seven years ago today.

#myalgicencephalomyelitis #mecfs #cfsme

Reposted by Royal Free 1955

Billy Hanlon @bhanlon15.bsky.social · 11h

Boston Medical Center: ‘Everything Is Fair Game in Long COVID Land:’ A Look into BMC’s ReCOVer Long COVID Clinic, Four Years In"

“They have had no choice but to be very strong advocates for themselves in a world where most people don’t understand long COVID.”

healthcity.bmc.org/everything-i...

‘Everything Is Fair Game in Long COVID Land:’ A Look into BMC’s ReCOVer Long COVID Clinic, Four Years In

Boston Medical Center's ReCOVer Long COVID Clinic takes multidisciplinary approach towards understanding long COVID.

healthcity.bmc.org

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Royal Free 1955 @rfh1955.bsky.social · 14h

So on the same day it does a story about #longcovid, @rollingstone.com....

Tim Dickinson @timdickinson.bsky.social · 15h

2. Rolling Stone is owned by a large media conglomerate, which is ending remote work across its brands.

My home is Portland, Oregon, ~1,000 miles from the nearest office, so this marks the end of the line for me at RS.

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Reposted by Royal Free 1955

Orla Hegarty @orla-hegarty.bsky.social · 16h

#LongCovid needs to be part of a conversation about school absenteeism in Ireland, even if it is hard & uncomfortable

Children are still getting Long Covid, & it’s preventable

Rolling Stone @rollingstone.com · 21h

Long Covid Is Real — And It’s Changing an Entire Generation

Hundreds of thousands of kids in America are struggling with an illness that many doctors and schools refuse to recognize.e

Feature: www.rollingstone.com/culture/cult...

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Reposted by Royal Free 1955

Rolling Stone @rollingstone.com · 21h

It’s a slow-moving spiral: first their health, then their grades, then their future. Those for whom Covid looms very present are feeling forgotten, subject to pervasive skepticism and a kind of cultural fatigue when it comes to their illness.

🔗 www.rollingstone.com/culture/cult...

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Reposted by Royal Free 1955

Rolling Stone @rollingstone.com · 21h

Long Covid Is Real — And It’s Changing an Entire Generation

Hundreds of thousands of kids in America are struggling with an illness that many doctors and schools refuse to recognize.e

Feature: www.rollingstone.com/culture/cult...

26 480 960

Reposted by Royal Free 1955

@DrJoePajak CSci CChem FRSC @drjoepajak.bsky.social · 23h

Noted: 'Healthcare-associated infections (HCAI) include:
MRSA, MSSA, E. coli and Klebsiella species, P. aeruginosa and C. difficile. They also include all bloodstream infections associated with critical care.' @ukhsa.bsky.social

👉 They don't include COVID-19 HCAI.
🤷 Why?
www.gov.uk/government/c...

Healthcare-associated infections (HCAI) statistics

Healthcare-associated infections (HCAI) statistics are published monthly, quarterly and annually.

www.gov.uk

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Royal Free 1955 @rfh1955.bsky.social · 1d

The Birmingham Evening Mail, England. 16th October 1998. #mecfs #myalgicencephalomyelitis #myalgice #cfsme

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Royal Free 1955 @rfh1955.bsky.social · 1d

The Black Country Evening Mail, England. 16th October 1998. An editorial on a boy whose care was the subject of a legal battle in Solihull (England) in 1998. #cfsme #mecfs #myalgicencephalomyelitis #myalgice

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Royal Free 1955 @rfh1955.bsky.social · 1d

This day thirty-five years ago. The Cambridge Evening News, England. 16th October 1990.

"...a doctor from Addenbrooke's told the girl's worried father that if she ate a Mars Bar a day for a month, she would be fine".

#myalgicencephalomyelitis #myalgice #mecfs #cfsme

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Reposted by Royal Free 1955

Physios For ME @physiosforme.bsky.social · 1d

Further information on our newest paper can be found here:

physiosforme.com/hr-monitor-p...

(end)

HR Monitor Pilot | Physiosforme

physiosforme.com

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Reposted by Royal Free 1955

Physios For ME @physiosforme.bsky.social · 1d

We worked with a great team:
@sunsopeningband.bsky.social Harry Leeming and patient experts. Collaboration with the ME community has been central to all our research projects - we learn from the best!

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Reposted by Royal Free 1955

Physios For ME @physiosforme.bsky.social · 1d

89% were still using heart rate monitors after 8 weeks, and 66% after 6 months.

No significant drop in activity level after the introduction of heart rate monitors, which appears to contradict concerns that this method of pacing will cause people to become over cautious.

(3)

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Reposted by Royal Free 1955

Physios For ME @physiosforme.bsky.social · 1d

As this is a feasibility study, no conclusions can be drawn about the data itself; the outcome is whether this protocol is feasible.

Key points found:

The protocol (using home-based testing) was feasible with no adverse events

(2)

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Reposted by Royal Free 1955

Physios For ME @physiosforme.bsky.social · 1d

We've had another study published 🥳

"Pacing with a heart rate monitor for people with myalgic encephalomyelitis/chronic fatigue syndrome and long COVID: a feasibility study"

Open access link here. Summary below (1)
www.tandfonline.com/doi/full/10....

Taylor & Francis Online: Peer-reviewed Journals

Search and explore the millions of quality, peer-reviewed journal articles published under the Taylor & Francis, Routledge and Dove Medical Press imprints.

tandfonline.com

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Royal Free 1955 @rfh1955.bsky.social · 2d

The Guardian, UK. 15th October 1998.

"The medical profession needs to settle its differences internally and not harass innocent families" - twenty-seven years ago today.

#mecfs #cfsme #myalgicencephalomyelitis #myalgice

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Reposted by Royal Free 1955

Harriet Carroll: Long Covid Scientific Consultancy @angryhacademic.bsky.social · 2d

NHS Scotland ME/CFS provision – NHS Orkney (FOI request)
www.meresearch.org.uk/nhs-scotland...

"NHS Orkney’s annual share is £14,716"

Theyd probs have more impact on ME spending that on widespread FFP3 use and air filtration, than a part time AHP or whatever who can offer nothing more than pacing

NHS Scotland ME/CFS provision – NHS Orkney

The inexactitude of how the Scottish Government's £4.5m allocation of annual funding for specialist services will enable NICE compliant provision for ME/CFS has led Rhoda Grant MSP (with assistance fr...

www.meresearch.org.uk

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Royal Free 1955 @rfh1955.bsky.social · 2d

New Chronic Fatigue Syndrome 'Blood Test' Raises Hope And Skepticism.

www.sciencealert.com/new-chronic-...

New Chronic Fatigue Syndrome 'Blood Test' Raises Hope And Skepticism

Scientists have discovered a unique signature of chronic fatigue syndrome, also known as myalgic encephalomyelitis (CFS/ME), in the blood of patients with severe symptoms.

www.sciencealert.com

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Royal Free 1955 @rfh1955.bsky.social · 3d

On this day thirty-eight years ago. The Daily Post, Wales. 13th October 1987. Although the term #myalgicencephalomyelitis is used, #postviralfatiguesyndrome is the predominant name in this article. #cfsme #myalgice #mecfs

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Royal Free 1955 @rfh1955.bsky.social · 5d

Thirty-seven years ago today...? #myalgicencephalomyelitis
rfh1955.blogspot.com/2023/11/the-...

The Mystery Meeting.

Sometime around 1st July 1988, the Department of Health and Social Security in London received a letter from the Ciba Foundation. It was sen...

rfh1955.blogspot.com

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Reposted by Royal Free 1955

@DrJoePajak CSci CChem FRSC @drjoepajak.bsky.social · 6d

Weekly England COVID-19 indicators produced independently since the first data in the spring of 2020 - not to compete with official sources, but to complement them, hopefully with clarity, transparency, and and a degree of humility. Every chart an invitation: to question, to understand, to engage.

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Reposted by Royal Free 1955

@DrJoePajak CSci CChem FRSC @drjoepajak.bsky.social · 7d

Latest England COVID-19 hospital bed occupancy up.
COVID-19 positive tests up.
COVID-19 deaths up.
COVID-19 cases up.
Data source @ukhsa.bsky.social
Why?
Limited vaccine eligibility, waning immunity, lower priority by leaders, mixing in poorly ventilated, cramped spaces. Scant use of face coverings.

Latest England COVID-19 hospital bed occupancy up.
COVID-19 deaths up.
COVID-19 positive tests up.
COVID-19 cases up.
Data source @ukhsa.bsky.social
Why?
Limited vaccine eligibility, waning immunity, lower priority by leaders, mixing in poorly ventilated, cramped spaces. Scant use of face coverings.

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Royal Free 1955 @rfh1955.bsky.social · 7d

The Evening Post, Bristol, England. 10th October 1992. #myalgice #myalgicencephalomyelitis #mecfs #cfsme

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Royal Free 1955 @rfh1955.bsky.social · 7d

10th October 2003. Two replies to the Cook/Wessely ‘Scotsman’ spat. #MyalgicEncephalomyelitis #chronicfatiguesyndrome #mecfs.

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Royal Free 1955 @rfh1955.bsky.social · 7d

On this date thirty-eight years ago. The Daily Illini, Illinois, US. 9th October 1987. #cfsme #mecfs #myalgicencephalomyelitis #myalgice

"Research spurred as awareness of 'yuppie flu' grows".

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