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rfh1955.bsky.social
Royal Free 1955
@rfh1955.bsky.social
1.1K followers 840 following 2.4K posts
ME/CFS archive, especially RFH 1955. For education, not profit. Researched since 2011 by @continuitytweets.bsky.social & @ciaranj_farrell. No hugs, heart emojis, art because it doesn't work.

https://rfh1955.blogspot.com/
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Reposted by Royal Free 1955
atranscendedman.bsky.social
At Beth Israel Lahey Health, a study of 2,740 patients with immunodeficiency found that those who took nirmatrelvir/ritonavir after COVID-19 were 57% less likely to develop long COVID.

rupress.org/jhi/article/...
Nirmatrelvir/ritonavir use reduces risk for long COVID in patients with immunodeficiency
Our retrospective study highlights that acute use of nirmatrelvir/ritonavir significantly reduces the risk of post-acute sequelae of SARS-CoV-2 infection (
rupress.org
January 29, 2026 at 5:10 PM
Reposted by Royal Free 1955
cgatist.bsky.social
We will be mindful of this: “In designing a study, a goal of ME/CFS researchers should be to determine if a significant result can actually inform disease mechanisms, or if it is simply a reportable difference between patients and controls.” VanElzakker et al. www.frontiersin.org/journals/neu...
January 29, 2026 at 7:34 PM
Reposted by Royal Free 1955
cgatist.bsky.social
Your wish is our command! Next year, the PRIME network intends to organise a (hybrid) Symposium exactly on the topic of biomarkers and diagnostic tests. Who should we invite? #MEcfs
bionow.co.uk/news/prime-b...
PRIME – building infrastructure for Patients, Researchers and Industry for Myalgic Encephalomyelitis | Bionow
PRIME is a new MRC-funded project aimed at bringing together patients/patient groups, academic & clinical researchers and industry to make progress in the understanding and treatment of Myalgic Enceph...
bionow.co.uk
January 29, 2026 at 7:32 PM
Reposted by Royal Free 1955
thesicktimes.org
😷 A study found that a majority of people with Long COVID did not recover

💰 Some researchers in Australia are getting a small boost in Long COVID funding

💊 The biotech company Invivyd is advancing research of a COVID-19 monoclonal antibody

#LongCOVID research updates: bit.ly/49QCdNm
A photo of the Opera House in Sydney, Australia. The building, which resembles white sails, its lit by orange sunlight and contrasted with a blue sky. Two people in the distance take photos of the building. The text reads, “The Sick Times. Long COVID research updates. A large prospective cohort study found that a majority of people with Long COVID did not recover. Some researchers in Australia are getting a small boost in Long COVID funding. The biotech company Invivyd is advancing research of a COVID-19 monoclonal antibody called VYD2311.” T A large prospective cohort study published in Infectious Diseases found that a majority of people with Long COVID did not recover. Of the 3,590 individuals with Long COVID included in the U.K. study, only around 33% achieved “satisfactory recovery.” Still, the study did not account for reinfections, and other studies have found an even slimmer recovery rate of only 6–9% in the first 2–3 years. The authors concluded that people with Long COVID in their cohort had significant and prolonged functional impairment, and that a majority are “of working age.” Some researchers in Australia are getting a small boost in Long COVID funding. Three projects at the University of New South Wales won grants totalling $4.7 million AUD ($3.3 million USD) to study the disease and improve patient care. One of those projects is the SAGE Trial, which aims to educate primary care providers about Long COVID, while other funding will support diagnostic and clinical research. In addition, a professor at Melbourne’s La Trobe University received $1 million AUD ($697,000 USD) in funding for the CRISP Project to study biomarkers for the disease linked to “food and drink sensitivity.” The biotech company Invivyd is advancing research of a COVID-19 monoclonal antibody called VYD2311, designed to improve upon the currently-available Pemgarda. A phase three clinical trial testing the product’s ability to prevent acute COVID-19 is currently recruiting in 20 locations across 16 states. And the company announced last week that it has planned a phase two trial of the drug for treating Long COVID and Post-COVID Vaccine Syndrome, expected to start “by mid-2026.” Researchers previously discussed this potential trial at a National Institutes of Health workshop last fall, but it is proceeding without NIH funding.
January 29, 2026 at 4:24 PM
rfh1955.bsky.social
Might be of interest here...
theguardian.com The Guardian @theguardian.com · 4h
Police plans to stop recording lower-level hate incidents in England and Wales ‘a disaster for disabled people’, campaigners warn
Police plans to stop recording lower-level hate incidents in England and Wales ‘a disaster for disabled people’, campaigners warn
Shabana Mahmood confirmed earlier this week that the controversial category of non-crime hate incidents would be scrapped It would be “a disaster for disabled people” if police stop recording and investigating lower-level incidents of abuse that often lead to more serious hate crimes, according to researchers and campaigners. As part of wide-ranging changes to policing, the home secretary, Shabana Mahmood, confirmed this week that the controversial category of non-crime hate incidents would be scrapped in its current form in England and Wales. Continue reading...
www.theguardian.com
January 29, 2026 at 6:13 PM
rfh1955.bsky.social
Expert reaction to study using population whole genome sequencing data to find genetic determinants of persistent EBV DNA and associations with chronic conditions.

www.sciencemediacentre.org/expert-react...
expert reaction to study using population whole genome sequencing data to find genetic determinants of persistent EBV DNA and associations with chronic conditions | Science Media Centre
www.sciencemediacentre.org
January 29, 2026 at 1:14 PM
rfh1955.bsky.social
The Burlington Free Press, US.
29th January 2001.

About #lymedisease #lyme but mentions #multiplesclerosis #ms #fibromyalgia #myalgicencephalomyelitis #cfsme #myalgice #mecfs
January 29, 2026 at 8:25 AM
rfh1955.bsky.social
About an anti-malaria drug. Mentions #myalgicencephalomyelitis #cfsme #mecfs #myalgice.

The Vancouver Sun, Canada.
29th January 2016.
January 29, 2026 at 8:23 AM
rfh1955.bsky.social
The Philadelphia Inquirer, US.
29th January 2016.

#cfsme #mecfs #myalgicencephalomyelitis #myalgice
January 29, 2026 at 8:22 AM
rfh1955.bsky.social
The Santa Fe New Mexican, US.
29th January 2001.

#cfsme #mecfs #myalgicencephalomyelitis #myalgice
January 29, 2026 at 8:21 AM
rfh1955.bsky.social
The Red Deer Advocate, Canada.
29th January 1997.

#cfsme #mecfs #myalgicencephalomyelitis #myalgice
January 29, 2026 at 8:20 AM
rfh1955.bsky.social
The Huddersfield Daily Examiner, England.
29th January 1998.

#cfsme #mecfs #myalgicencephalomyelitis #myalgice
January 29, 2026 at 8:18 AM
rfh1955.bsky.social
The Liverpool Echo, England.
29th January 1999.

About #gulfwarsyndrome #gws but mentions #cfsme #myalgicencephalomyelitis #myalgice #mecfs
January 29, 2026 at 8:17 AM
rfh1955.bsky.social
The Sunday Sun, Newcastle, England.
29th January 1995.

#cfsme #mecfs #myalgicencephalomyelitis #myalgice
January 29, 2026 at 8:16 AM
rfh1955.bsky.social
The Reading Evening Post, England.
29th January 1993.

#mecfs #cfsme #myalgicencephalomyelitis #myalgice
January 29, 2026 at 8:10 AM
rfh1955.bsky.social
Daily Telegraph, UK.
29th January 2009.

The announcement of death and funeral service of Lynn Gilderdale.
January 29, 2026 at 8:07 AM
Reposted by Royal Free 1955
griffith.edu.au
People with ME/CFS and Long COVID experience a disruption to their brain connectivity during a mentally demanding task.
Altered brain connection found in people with ME/CFS and Long COVID - Griffith News
People with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Long COVID experience a disruption to their brain connectivity during a
news.griffith.edu.au
January 28, 2026 at 12:15 AM
Reposted by Royal Free 1955
longcovidadvoc.com
🧪New research from Marshall-Gradisnik and team in Australia that shows altered brain connectivity in Long Covid and ME patients. Subjects were scanned using Tesla-7 MRI whilst doing mental tasks.
An educational graphic from Long Covid Advocacy titled "LATEST RESEARCH: LONG COVID - DISRUPTED BRAIN CONNECTIVITY." The image features a blue, translucent digital silhouette of a human head overlaid with glowing neural network lines and a complex frequency waveform. Below the image, text states: "People with ME and Long Covid show disrupted brain connectivity during cognitive fatigue, unlike healthy controls who increase network coordination. Altered subcortical and hippocampal connections correlate with cognitive symptoms, motivation and illness duration." The source is cited as Inderyas et al, 2026, Trans Med.
January 28, 2026 at 9:10 PM
Reposted by Royal Free 1955
tomkindlon.bsky.social
In an international survey (n=1534) www.mdpi.com/2075-4418/9/..., 67% of those with ME/CFS reported they never recovered from a crash (that caused postexertional malaise).

Patients & professionals should be informed of this risk.

Exertion has ruined some people's health

#MEcfs #CFS #PwME #PEM
Table 6. Duration of PEM, illness course, and functioning (N = 1534). Items %(n) Length of prolonged, unpredictable recovery period 95.2 (1460) Within 24 h Between 1 and 2 days Between 3 and 6 days Between 1 week and 1 month Between 1 and 6 months Between 6 months and 1 year Between 1 and 2 years Over 2 years Crash that has never resolved 14.1 (216) 38.9 (596) 58.0 (890) 46.7 (717) 30.3 (465) 13.6 (209) 9.8 (151) 12.3 (189) 67.1 (1029)
January 28, 2026 at 9:12 PM
Reposted by Royal Free 1955
langzeitc.bsky.social
"Ohne ihn [Freund] und meine Freundinnen wäre ich vermutlich nicht mehr am Leben." Margarete Stockowski @marga_owski gibt berührende Einblicke in ein Leben mit #MECFS. Niemand von uns hat vorher gewusst, dass man so schwer erkranken kann. Tragt konsequent Maske!! 😷
www.brigitte.de/gesund/gesun...
Margarete Stokowski: "Ohne meinen Partner und meine Freundinnen wäre ich vermutlich nicht mehr am Leben"
Viele kennen Margarete Stokowski (39) aus ihren Kolumnen oder von Bestseller-Büchern wie "Untenrum frei". Seit einer Covid-Infektion verbringt die Journalistin einen großen Teil des Tages liegend. Den...
www.brigitte.de
January 28, 2026 at 7:17 PM
Reposted by Royal Free 1955
mimi139.bsky.social
Ich wurde im Rahmen eines ME/CFS Specials von der Brigitte interviewt.

www.brigitte.de/gesund/gesun...
"Mein Privileg ist, dass ich als Medizinerin mit ME/CFS wenigstens ernst genommen wurde"
Sie hat nur vier Stunden am Tag, die sie nicht im Bett liegend verbringen muss. Eine dieser kostbaren Stunden schenkt uns die an ME/CFS erkrankte Ärztin Mirja, um ihre Geschichte zu erzählen.
www.brigitte.de
January 28, 2026 at 7:06 PM
rfh1955.bsky.social
ME/CFS-Erkrankte erstatteten Anzeige gegen Gutachter – Behörde leitet kein Verfahren ein.

www.derstandard.at/story/300000...
January 28, 2026 at 7:52 PM
rfh1955.bsky.social
ME/CFS sufferers filed a complaint against the expert – the authority does not initiate any proceedings.

lnginnorthernbc.ca/2026/01/27/m...
ME/CFS sufferers filed a complaint against the expert - the authority does not initiate any proceedings - News Room USA | LNG in Northern BC
Nine people who unsuccessfully applied for an occupational disability pension from the Pension Insurance Agency (PVA) are making allegations against the PVA and its experts. These are people who are m...
lnginnorthernbc.ca
January 28, 2026 at 1:39 PM
rfh1955.bsky.social
www.nzdoctor.co.nz/article/educ...
January 28, 2026 at 1:37 PM