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/
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.
Thirty-six years ago today. The Observer, UK. 26th November 1989. #mecfs #cfsme #myalgicencephalomyelitis #myalgice
November 26, 2025 at 7:44 AM
Thirty-six years ago today. The Observer, UK. 26th November 1989. #mecfs #cfsme #myalgicencephalomyelitis #myalgice
Thirteen years ago today. The Daily Telegraph, UK. 26th November 2012. A feature on Dr. Charles Shepherd. #myalgicencephalomyelitis #cfsme #myalgice #mecfs.
November 26, 2025 at 7:42 AM
Thirteen years ago today. The Daily Telegraph, UK. 26th November 2012. A feature on Dr. Charles Shepherd. #myalgicencephalomyelitis #cfsme #myalgice #mecfs.
November 26, 2025 at 7:38 AM
November 26, 2025 at 7:35 AM
It doesn't specifically say 'Camelford' in the piece but it seems certain that it is the location. 9pm UK/Ireland time. May be of interest...
psycnet.apa.org/record/1995-...
psycnet.apa.org/record/1995-...
November 26, 2025 at 7:25 AM
It doesn't specifically say 'Camelford' in the piece but it seems certain that it is the location. 9pm UK/Ireland time. May be of interest...
psycnet.apa.org/record/1995-...
psycnet.apa.org/record/1995-...
'Thread'.
🧵#CLoCK Update
New paper released on #longcovid paediatric fatigue that demonstrates UK research culture has not made the vital steps needed to meet need or understand the disease.
Let's critically assess the issues:
/1
New paper released on #longcovid paediatric fatigue that demonstrates UK research culture has not made the vital steps needed to meet need or understand the disease.
Let's critically assess the issues:
/1
November 25, 2025 at 10:59 PM
'Thread'.
The Okmulgee Daily Times, Oklahoma, US. 25th November 1993. #mecfs #myalgice #cfsme #myalgicencephalomyelitis
November 25, 2025 at 8:28 PM
The Okmulgee Daily Times, Oklahoma, US. 25th November 1993. #mecfs #myalgice #cfsme #myalgicencephalomyelitis
The Bryan-College Station Eagle, Texas, US. 25th November 1990. #mecfs #cfsme #myalgicencephalomyelitis #myalgice
November 25, 2025 at 8:25 PM
The Bryan-College Station Eagle, Texas, US. 25th November 1990. #mecfs #cfsme #myalgicencephalomyelitis #myalgice
The Lincoln Journal Star, Nebraska, US. 25th November 1988. #mecfs #cfsme #myalgicencephalomyelitis #cfsme
November 25, 2025 at 8:22 PM
The Lincoln Journal Star, Nebraska, US. 25th November 1988. #mecfs #cfsme #myalgicencephalomyelitis #cfsme
Reposted by Royal Free 1955
ITV: 'Jersey's chronic illness benefits system set for radical government overhaul'
'Jersey's Social Security Minister has lodged proposals to radically overhaul the benefits system for islanders with long-term health conditions, such as arthritis, long Covid..'
www.itv.com/news/channel...
'Jersey's Social Security Minister has lodged proposals to radically overhaul the benefits system for islanders with long-term health conditions, such as arthritis, long Covid..'
www.itv.com/news/channel...
www.itv.com
November 24, 2025 at 7:53 PM
ITV: 'Jersey's chronic illness benefits system set for radical government overhaul'
'Jersey's Social Security Minister has lodged proposals to radically overhaul the benefits system for islanders with long-term health conditions, such as arthritis, long Covid..'
www.itv.com/news/channel...
'Jersey's Social Security Minister has lodged proposals to radically overhaul the benefits system for islanders with long-term health conditions, such as arthritis, long Covid..'
www.itv.com/news/channel...