Royal Free 1955
@rfh1955.bsky.social
ME/CFS archive, especially RFH 1955. For education, not profit. Relocated from Twitter. Researched since 2011 by @continuitytweets.bsky.social & @ciaranj_farrell. No petitions.
https://rfh1955.blogspot.com/
https://rfh1955.blogspot.com/
The Province, Canada. 27th November 2022. #longcovid #myalgicencephalomyelitis #myalgice #cfsme #mecfs
November 27, 2025 at 10:44 AM
The Province, Canada. 27th November 2022. #longcovid #myalgicencephalomyelitis #myalgice #cfsme #mecfs
The St. Louis Post-Dispatch, US. 27th November 2022. #longcovid #myalgicencephalomyelitis #myalgice #mecfs #cfsme
November 27, 2025 at 10:41 AM
The St. Louis Post-Dispatch, US. 27th November 2022. #longcovid #myalgicencephalomyelitis #myalgice #mecfs #cfsme
Thirty-six years ago today. The Spokane Chronicle, US. 27th November 1989. #mecfs #cfsme #myalgicencephalomyelitis #myalgice
November 27, 2025 at 10:35 AM
Thirty-six years ago today. The Spokane Chronicle, US. 27th November 1989. #mecfs #cfsme #myalgicencephalomyelitis #myalgice
November 27, 2025 at 10:33 AM
Thirty-eight years ago today. #myalgicencephalomyelitis #myalgice #mecfs
api.parliament.uk/historic-han...
api.parliament.uk/historic-han...
Myalgic Encephalomyelitis (Hansard, 27 November 1987)
Myalgic Encephalomyelitis (Hansard, 27 November 1987)
api.parliament.uk
November 27, 2025 at 7:07 AM
Thirty-eight years ago today. #myalgicencephalomyelitis #myalgice #mecfs
api.parliament.uk/historic-han...
api.parliament.uk/historic-han...
Thirty-five years ago today. The Sydney Morning Herald. 27th November 1990. #mecfs #cfsme #myalgicencephalomyelitis #myalgice
November 27, 2025 at 6:53 AM
Thirty-five years ago today. The Sydney Morning Herald. 27th November 1990. #mecfs #cfsme #myalgicencephalomyelitis #myalgice
The Sutton Coldfield News, England. 27th November 1998. #mecfs #cfsme #myalgicencephalomyelitis #myalgice
November 27, 2025 at 6:48 AM
The Sutton Coldfield News, England. 27th November 1998. #mecfs #cfsme #myalgicencephalomyelitis #myalgice
The Manchester Evening News, England. 27th November 1992.
#cfsme #mecfs #myalgicencephalomyelitis #myalgice
#cfsme #mecfs #myalgicencephalomyelitis #myalgice
November 27, 2025 at 6:46 AM
The Manchester Evening News, England. 27th November 1992.
#cfsme #mecfs #myalgicencephalomyelitis #myalgice
#cfsme #mecfs #myalgicencephalomyelitis #myalgice
"Although the Department of Health claims to recognise ME, no research has been funded".
The Accrington Observer, England. 27th November 1992.
#myalgicencephalomyelitis #cfsme #myalgice #mecfs
The Accrington Observer, England. 27th November 1992.
#myalgicencephalomyelitis #cfsme #myalgice #mecfs
November 27, 2025 at 6:44 AM
"Although the Department of Health claims to recognise ME, no research has been funded".
The Accrington Observer, England. 27th November 1992.
#myalgicencephalomyelitis #cfsme #myalgice #mecfs
The Accrington Observer, England. 27th November 1992.
#myalgicencephalomyelitis #cfsme #myalgice #mecfs
A week later in the same paper. The Sunday Telegraph, UK. 27th November 1994. #myalgicencephalomyelitis #myalgice #cfsme #mecfs
November 27, 2025 at 6:41 AM
A week later in the same paper. The Sunday Telegraph, UK. 27th November 1994. #myalgicencephalomyelitis #myalgice #cfsme #mecfs
The Isle of Wight County Press, UK. 27th November 2015.
A letter from someone complaining about children being sent to school when they are already ill. From ten years ago @bphillipsonmp.bsky.social.
#myalgicencephalomyelitis #cfsme #myalgice #mecfs
A letter from someone complaining about children being sent to school when they are already ill. From ten years ago @bphillipsonmp.bsky.social.
#myalgicencephalomyelitis #cfsme #myalgice #mecfs
November 27, 2025 at 6:32 AM
The Isle of Wight County Press, UK. 27th November 2015.
A letter from someone complaining about children being sent to school when they are already ill. From ten years ago @bphillipsonmp.bsky.social.
#myalgicencephalomyelitis #cfsme #myalgice #mecfs
A letter from someone complaining about children being sent to school when they are already ill. From ten years ago @bphillipsonmp.bsky.social.
#myalgicencephalomyelitis #cfsme #myalgice #mecfs
Reposted by Royal Free 1955
Our recap of last week's Long COVID International Conference is up now at @thesicktimes.org! Featuring summaries of talks that we found most notable (and a few hints about interesting results that aren't public yet). thesicktimes.org/2025/11/25/i...
International Long COVID conference spotlights biomarker and mechanism research - The Sick Times
The event, now in its third year, also revealed updates about clinical trials and healthcare for the disease.
thesicktimes.org
November 25, 2025 at 6:04 PM
Our recap of last week's Long COVID International Conference is up now at @thesicktimes.org! Featuring summaries of talks that we found most notable (and a few hints about interesting results that aren't public yet). thesicktimes.org/2025/11/25/i...
Reposted by Royal Free 1955
"...[broadcast interruption]... very, very supportive... Thank you."
I'm hoping this important reflection was also in his witness statement.
@longcovidsupport.bsky.social
I'm hoping this important reflection was also in his witness statement.
@longcovidsupport.bsky.social
November 26, 2025 at 6:29 PM
"...[broadcast interruption]... very, very supportive... Thank you."
I'm hoping this important reflection was also in his witness statement.
@longcovidsupport.bsky.social
I'm hoping this important reflection was also in his witness statement.
@longcovidsupport.bsky.social
Reposted by Royal Free 1955
"We remember the people that we know who are living with Long Covid, and in far too many cases, we are just *existing* with Long Covid... [broadcast interruption]...
[the?] first Long Covid advocate I came across in my own journey and she contributed to me starting advocating for Long Covid...
[the?] first Long Covid advocate I came across in my own journey and she contributed to me starting advocating for Long Covid...
November 26, 2025 at 6:27 PM
"We remember the people that we know who are living with Long Covid, and in far too many cases, we are just *existing* with Long Covid... [broadcast interruption]...
[the?] first Long Covid advocate I came across in my own journey and she contributed to me starting advocating for Long Covid...
[the?] first Long Covid advocate I came across in my own journey and she contributed to me starting advocating for Long Covid...
Reposted by Royal Free 1955
"...their basic needs, such as food, housing and heating.
We remember... sorry, this is where I get very emotional... we remember the people that we knew who have died, either directly from COVID-19, from long-term complications or with Long Covid."
We remember... sorry, this is where I get very emotional... we remember the people that we knew who have died, either directly from COVID-19, from long-term complications or with Long Covid."
November 26, 2025 at 6:22 PM
"...their basic needs, such as food, housing and heating.
We remember... sorry, this is where I get very emotional... we remember the people that we knew who have died, either directly from COVID-19, from long-term complications or with Long Covid."
We remember... sorry, this is where I get very emotional... we remember the people that we knew who have died, either directly from COVID-19, from long-term complications or with Long Covid."
Reposted by Royal Free 1955
"...which drives things like long-term financial insecurity and poverty. Their children's future lives have been changed, because of disruptions to their education, because of the illness of their parents, and also because of the impacts of the insecurity of their parents not being able to meet...
November 26, 2025 at 6:20 PM
"...which drives things like long-term financial insecurity and poverty. Their children's future lives have been changed, because of disruptions to their education, because of the illness of their parents, and also because of the impacts of the insecurity of their parents not being able to meet...
Reposted by Royal Free 1955
This is what I caught:
"The reality for people with Long Covid is that many of us have become newly disabled; our lives have been radically altered; many of us can't work; we've lost jobs; had to reduce hours; and in many cases people have had to move to less demanding jobs."
"The reality for people with Long Covid is that many of us have become newly disabled; our lives have been radically altered; many of us can't work; we've lost jobs; had to reduce hours; and in many cases people have had to move to less demanding jobs."
November 26, 2025 at 6:16 PM
This is what I caught:
"The reality for people with Long Covid is that many of us have become newly disabled; our lives have been radically altered; many of us can't work; we've lost jobs; had to reduce hours; and in many cases people have had to move to less demanding jobs."
"The reality for people with Long Covid is that many of us have become newly disabled; our lives have been radically altered; many of us can't work; we've lost jobs; had to reduce hours; and in many cases people have had to move to less demanding jobs."
Reposted by Royal Free 1955
Annoying, the Inquiry lost the feed to Mike Ormerod during his final words (bits were cut out), and the video feed on the live link was cut at various points too.
Hope the transcript catches his words. @longcovidsupport.bsky.social
Hope the transcript catches his words. @longcovidsupport.bsky.social
November 26, 2025 at 3:29 PM
Annoying, the Inquiry lost the feed to Mike Ormerod during his final words (bits were cut out), and the video feed on the live link was cut at various points too.
Hope the transcript catches his words. @longcovidsupport.bsky.social
Hope the transcript catches his words. @longcovidsupport.bsky.social
Reposted by Royal Free 1955
He ends with "If you don't measure it, you can't manage it."
He stresses the need for more data to be collected on Long Covid so that it can be effectively managed, treated, researched, etc.
He stresses the need for more data to be collected on Long Covid so that it can be effectively managed, treated, researched, etc.
November 26, 2025 at 3:21 PM
He ends with "If you don't measure it, you can't manage it."
He stresses the need for more data to be collected on Long Covid so that it can be effectively managed, treated, researched, etc.
He stresses the need for more data to be collected on Long Covid so that it can be effectively managed, treated, researched, etc.
Reposted by Royal Free 1955
Much of the emphasis is on the unsuitability of statutory sick pay's definition of "illness as usual", which does not account for chronic, fluctuating diseases like Long Covid, ME, and fibromyalgia.
#UKCovidInquiry
#UKCovidInquiry
November 26, 2025 at 3:11 PM
Much of the emphasis is on the unsuitability of statutory sick pay's definition of "illness as usual", which does not account for chronic, fluctuating diseases like Long Covid, ME, and fibromyalgia.
#UKCovidInquiry
#UKCovidInquiry
Reposted by Royal Free 1955
![At March 2023, across the UK, for just the 381,000 [people with] Long Covid whose daily activities are "limited a lot":
- 16.7% were no longer in paid work and had no work income.
- 11.5% were no longer in paid work but were receiving work income such as sick pay or permanent health insurance.
- 23.5% had reduced paid work hours.
- £5.7 billion lost income from infection to Feb 2023 - cumulative total.
- £4.8 billion cost of informal caregiving from infection to Feb 2023 - cumulative total.](https://cdn.bsky.app/img/feed_thumbnail/plain/did:plc:idf6m3amxguxiftesf7y24hd/bafkreih3n57mpfkbpr332twugipcy6s3ejicmrwtyd7ypgwuiygkt2waau@jpeg)
November 26, 2025 at 3:04 PM
Reposted by Royal Free 1955
Mike Ormerod describes the effort it took for him and Natalie Rogers to prepare their witness statement for the #UKCovidInquiry, and the impact it had on their health as a result of the PEM/PESE it caused.
November 26, 2025 at 3:00 PM
Mike Ormerod describes the effort it took for him and Natalie Rogers to prepare their witness statement for the #UKCovidInquiry, and the impact it had on their health as a result of the PEM/PESE it caused.
Reposted by Royal Free 1955
#UKCovidInquiry is dealing with the economic impact of the pandemic in the current module.
They are currently interviewing Mike Ormerod from @longcovidsupport.bsky.social #LongCovid
www.youtube.com/watch?v=xosP...
They are currently interviewing Mike Ormerod from @longcovidsupport.bsky.social #LongCovid
www.youtube.com/watch?v=xosP...
UK Covid-19 Inquiry Live Stream
YouTube video by UK Covid-19 Inquiry
www.youtube.com
November 26, 2025 at 2:50 PM
#UKCovidInquiry is dealing with the economic impact of the pandemic in the current module.
They are currently interviewing Mike Ormerod from @longcovidsupport.bsky.social #LongCovid
www.youtube.com/watch?v=xosP...
They are currently interviewing Mike Ormerod from @longcovidsupport.bsky.social #LongCovid
www.youtube.com/watch?v=xosP...
An epidemic of overbreathing among schoolgirls. | The BMJ. 26th November 1966. Colin McEvedy.
www.bmj.com/content/2/55...
www.bmj.com/content/2/55...
An epidemic of overbreathing among schoolgirls.
www.bmj.com
November 26, 2025 at 7:50 AM
An epidemic of overbreathing among schoolgirls. | The BMJ. 26th November 1966. Colin McEvedy.
www.bmj.com/content/2/55...
www.bmj.com/content/2/55...
The South Wales Evening Post from today, twenty-six years ago - 26th November 1999. Includes a reference to Mansel Aylward.
November 26, 2025 at 7:48 AM
The South Wales Evening Post from today, twenty-six years ago - 26th November 1999. Includes a reference to Mansel Aylward.