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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/
Posts Replies Media Videos
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
rfh1955.bsky.social
In reply: LP audit evidence strong but overlooked.

Registration required.

www.nzdoctor.co.nz/article/educ...
In reply: LP audit evidence strong but overlooked
Specialist GP Bruce Arroll responds to criticisms of an audit on the use of the Lightning Process for long COVID
www.nzdoctor.co.nz
January 28, 2026 at 1:36 PM
Reposted by Royal Free 1955
thecovidinfoguy.bsky.social
Study: A cross-continental comparative analysis of the neurological manifestations of Long COVID.

Note: The final, formatted version of the article will be published soon.

www.frontiersin.org/journals/hum...
Frontiers | A cross-continental comparative analysis of the neurological manifestations of Long COVID
Objective: To compare demographics, comorbidities, neurologic symptoms, quality of life, and cognitive outcomes among adult individuals with neurologic manif...
www.frontiersin.org
January 28, 2026 at 5:45 AM
rfh1955.bsky.social
The Edmonton Journal, Canada.
28th January 1995.

#mecfs #cfsme #myalgicencephalomyelitis #myalgice
January 28, 2026 at 8:24 AM
rfh1955.bsky.social
The Times, British Columbia, Canada.
28th January 1992.

#mecfs #cfsme #myalgicencephalomyelitis #myalgice
January 28, 2026 at 8:23 AM
rfh1955.bsky.social
The News Tribune, Washington, US.
28th January 1990.

#mecfs #cfsme #myalgicencephalomyelitis #myalgice
January 28, 2026 at 8:22 AM
rfh1955.bsky.social
The Indiana Gazette, US.
28th January 1996.

#cfsme #mecfs #myalgicencephalomyelitis #myalgice
January 28, 2026 at 8:19 AM
rfh1955.bsky.social
The Central Somerset Gazette, England.
28th January 1999.

"Is my health and well-being really secondary to my productivity in our society?"

#cfsme #myalgicencephalomyelitis #myalgice #mecfs
January 28, 2026 at 12:03 AM
rfh1955.bsky.social
The Evening Standard, London.
28th January 2003.

#mecfs #cfsme #myalgicencephalomyelitis #myalgice
January 28, 2026 at 12:02 AM
rfh1955.bsky.social
The Manchester Evening News, England.
28th January 1998.

#cfsme #mecfs #myalgicencephalomyelitis #myalgice
January 28, 2026 at 12:01 AM
Reposted by Royal Free 1955
thecovidinfoguy.bsky.social
Long COVID Linked to New-Onset Allergies

"Following SARS-CoV-2 infection, participants were 74% more likely to be diagnosed with chronic rhinosinusitis, 66% more likely to be diagnosed with asthma, and 37% more likely to be allergic rhinitis."

Source: archive.md/R5nVs
An image of a red, blotchy rash on a person's inner arm with a finger pointing to the affected area. The heading reads "New-Onset Allergies Another Woe for Patients With Long COVID." Below the image is the date "Medscape · 22h" and the author's name "By Lois Anzelowitz Levine, MA." The article discusses the challenges faced by Long COVID patients, including new allergies.
January 27, 2026 at 10:56 PM
Reposted by Royal Free 1955
betsyladyzhets.bsky.social
Today @thesicktimes.org: big story by @brittashoot.com examining the Metrodora Institute, a clinic for “neuroimmune disorders” like Long COVID and myalgic encephalomyelitis that made big promises to patients... then abruptly closed. thesicktimes.org/2026/01/27/m...
Metrodora promised comprehensive treatment. But within two years, it abruptly closed. - The Sick Times
The clinic sought to cure “neuroimmune disorders” like Long COVID and myalgic encephalomyelitis. Former patients feel betrayed.
thesicktimes.org
January 27, 2026 at 6:18 PM
Reposted by Royal Free 1955
medicalxpress.com.web.brid.gy
Leftover COVID spike fragments kill crucial immune cells but are less deadly in omicron
New research shows that after the body's defenses kill the virus behind COVID-19, leftover digested chunks of SARS-CoV-2 spike protein can target specific immune cells based on their shape. The revelations could explain why certain populations of cells that detect and fight infection are depleted in patients with severe COVID-19, and shed light on the omicron variant's milder symptoms.
medicalxpress.com
January 27, 2026 at 8:34 PM
Reposted by Royal Free 1955
trinity888.bsky.social
This bit
It just feels like nobody's learning. Some patients with ME are still being offered therapy and graded exercise.
January 27, 2026 at 7:34 PM
Reposted by Royal Free 1955
hib.bundestag.de
Mehr Forschung im Kampf gegen Long-Covid und ME/CFS
Die Bundesregierung verspricht sich von einer gezielten Forschung schnellere Erfolge im Kampf gegen Long-Covid und ME/CFS.
Mehr Forschung im Kampf gegen Long-Covid und ME/CFS
Die Bundesregierung verspricht sich von einer gezielten Forschung schnellere Erfolge im Kampf gegen Long-Covid und ME/CFS.
www.bundestag.de
January 27, 2026 at 5:25 PM
rfh1955.bsky.social
A former NHS employee "has been “let down immensely” by the NHS."

2026. This is completely unacceptable.

#myalgicencephalomyelitis #myalgice #mecfs

@ashleydaltonmp.bsky.social

www.pressreader.com/uk/the-couri...
PressReader.com - Digital Newspaper & Magazine Subscriptions
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www.pressreader.com
January 27, 2026 at 1:21 PM
rfh1955.bsky.social
The Boston Globe, US.
27th January 1991.

#mecfs #cfsme #myalgice #myalgicencephalomyelitis
January 27, 2026 at 8:21 AM