Jessika
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Jessika
@jessikafe.bsky.social
270 followers 860 following 60 posts
ME sufferer from Sweden. Interested in everything that can make us/our situation better. #ME #ME/CFS
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Reposted by Jessika
tomkindlon.bsky.social
🧵
New US News Release

Study Reveals Details of Overactive Immune System in Patients with Chronic Fatigue Syndrome (ME/CFS)

www.eurekalert.org/news-release...

"Patients with [ME/CFS] have heightened innate immune responses to bacteria, viruses & fungi"

#ChronicFatigueSyndrome #MEcfs #CFS #PwME
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News Release 1-Sep-2025 Study Reveals Details of Overactive Immune System in Patients with Chronic Fatigue Syndrome (ME/CFS) Peer-Reviewed Publication Columbia University's Mailman School of Public Health Patients with chronic fatigue syndrome/myalgic encephalomyelitis (ME/CFS) have heightened innate immune responses to bacteria, viruses and fungi. While these responses are essential to fight infection, they can cause damage when unchecked. Led by researchers at the Center for Infection and Immunity (CII) at Columbia University Mailman School of Public Health with a multicenter team of leading ME/CFS researchers, the new study reveals molecular-level details into the syndrome’s lasting effects on inflammation and immune response that could inform the development of targeted therapeutic interventions to reduce symptoms of ME/CFS and other postinfectious syndromes such as post-treatment Lyme disease and Long COVID. Study findings are published in the journal npj Metabolic Health and Disease.
September 1, 2025 at 1:43 PM
Reposted by Jessika
bhanlon15.bsky.social
Columbia University: 'Study Reveals Details of Overactive Immune System in Patients with Chronic Fatigue Syndrome (ME/CFS)'

“These results suggest that specific intracellular pathways correlate with symptoms,” adds Amit Ranjan, PhD, co-first author

www.eurekalert.org/news-release...
Study Reveals Details of Overactive Immune System in Patients with Chronic Fatigue Syndrome (ME/CFS)
Led by researchers at the Center for Infection and Immunity (CII) at Columbia University Mailman School of Public Health with a multicenter team of leading ME/CFS researchers, the new study reveals mo...
www.eurekalert.org
September 1, 2025 at 1:47 PM
Reposted by Jessika
thecovidinfoguy.bsky.social
Long COVID could hold key to ME/CFS, MS.

"Long COVID could provide vital clues to uncover the cause of other life-limiting post-viral infections such as Myalgic Encephalomyelitis/Chronic Fatigue Syndrome and Multiple Sclerosis at a new research centre to be established at La Trobe University"
Long COVID could hold key to ME/CFS, MS
La Trobe to research post-viral infections with $3m in NHMRC funding.
www.latrobe.edu.au
September 4, 2025 at 5:03 AM
Reposted by Jessika
valebodi.bsky.social
Distinct white matter alteration patterns in post-infectious and gradual onset #ME/CFS revealed by diffusion MRI

These findings align with the diverse symptomatology of ME/CFS, including motor disturbances. Several studies have also reported the exclusively increased AD in other neurological
Distinct white matter alteration patterns in post-infectious and gradual onset chronic fatigue syndrome revealed by diffusion MRI - Scientific Reports
Scientific Reports - Distinct white matter alteration patterns in post-infectious and gradual onset chronic fatigue syndrome revealed by diffusion MRI
www.nature.com
September 3, 2025 at 1:25 PM
Debattartikel om ME i @altingetse.bsky.social idag. Tack!

www.altinget.se/vard/artikel...
Sluta ignorera ME-sjuka - Altinget
Uppskattningsvis lever minst 40 000 personer i Sverige med ME. Ändå finns det ingen nationell struktur för långsiktig vård och stöd. Det skriver Lollo Romlin, vice ordförande Riksförbundet för ME-pati...
www.altinget.se
August 28, 2025 at 8:00 AM
Reposted by Jessika
s4me.med-mastodon.com.ap.brid.gy
Our latest News in Brief post has headlines and links to further reading for #mecfs, #LongCovid, and related news, advocacy and research for the week of July 28 - Aug 3.

Topics:
News, advocacy and articles
Coming events
Research news and commentary
& Published research […]
Original post on med-mastodon.com
med-mastodon.com
August 3, 2025 at 10:41 PM
Reposted by Jessika
stenhelmfrid.bsky.social
Beentjes et al., comparison of traits for people with #MECFS and controls in UK Biobank data. Hundreds of traits differed between cases and controls, but single traits couldn’t distinguish case from control. The results cannot be explained by inactivity. www.embopress.org/doi/full/10....
Replicated blood-based biomarkers for myalgic encephalomyelitis not explicable by inactivity | EMBO Molecular Medicine
imageimageThere are no cellular or molecular biomarkers diagnostic of myalgic encephalomyelitis (also known as chronic fatigue syndrome [ME/CFS]). We find hundreds of blood-based traits are different,...
www.embopress.org
July 9, 2025 at 6:17 AM
Reposted by Jessika
openmedf.bsky.social
Update: Patient-Reported Treatment Outcomes in #MECFS and #LongCOVID

After undergoing the peer-review process, the manuscript was today published in PNAS. Read the full publication 👉 ow.ly/3EQm50WmwCw.

🔗 Summary: ow.ly/Vmx850WmwCr.
Wenzhong Xiao, PhD, with short black hair wearing a light blue collared shirt, smiling slightly against a dark background. Above his image is a teal-blue box with the word “UPDATE” in white capital letters. At the bottom of the image, a dark blue banner reads: “Patient-Reported Treatment Outcomes in ME/CFS and Long COVID.”
July 8, 2025 at 6:30 PM
Reposted by Jessika
tomkindlon.bsky.social
From @meresearchuk.bsky.social

Researchers in America have found that including people with lived experience of #MECFS, #longCOVID, or other post-acute infection syndromes (PAIS) in an education program for health professionals generally improved the care patients received.Read more: bit.ly/3ZZkZrD
"Many of us ... have had a tremendous amount of loss after we get our diagnosis... o, A loss of identity, A loss of the skills that we © had, (POW The brain we used, Our communications style, ODThe relationships that ywe've had, The ability to do work..., 8 e' ' 8 To do volunteer work..., To have a child, ,_,C7 t--='' To have a pet. These things have a serious impact" -.4km Weaver et al. Frontiers in Health Services. (2025) RESEARCH UK INFORM. INFLUENCE. INVEST. SCO36942
July 3, 2025 at 8:51 PM
Reposted by Jessika
mecfsskeptic.bsky.social
1) A new genetic study from Australia.

Although it had only 77 patients, they found significant associations between ME/CF and genes that belong to the Neuroblastoma Breakpoint Family encoding Olduvai (DUF1220) domains (NBPF1, NBPF10, NBPF16).
June 18, 2025 at 1:33 PM
Reposted by Jessika
tomkindlon.bsky.social
On US/Swedish research:

"Immune Markers Help Identify Subgroups of ME/CFS Patients: Proteins involved in neuroinflammation found in the cerebrospinal fluid could help researchers better diagnose and treat chronic fatigue syndrome"

www.the-scientist.com/profiling-im...

#MEcfs #CFS #PwME
News Immune Markers Help Identify Subgroups of ME/CFS Patients Proteins involved in neuroinflammation found in the cerebrospinal fluid could help researchers better diagnose and treat chronic fatigue syndrome. Written byShelby Bradford, PhD Jul 2, 2025 | 4 min read Photo of a woman with straight dark hair looking fatigued lying in bed with a grey blanket covering her. People with ME/CFS experience extreme fatigue and concentration difficulties. However, researchers suspect the underlying causes could be distinct. Image credit:©iStock, PeopleImages
July 3, 2025 at 2:13 PM
Reposted by Jessika
tomkindlon.bsky.social
News release:
"People with ME/CFS have significant differences in their blood compared with healthy individuals, a new study reveals, suggesting a path towards more reliable diagnosis of the long-term debilitating illness"

www.ed.ac.uk/news/scale-o...

#MEcfs #CFS #PwME
Home The University of Edinburgh News Scale of how ME/CFS affects blood revealed Scale of how ME/CFS affects blood revealed People with ME/CFS have significant differences in their blood compared with healthy individuals, a new study reveals, suggesting a path towards more reliable diagnosis of the long-term debilitating illness. White male lying in a bed looking tired The largest ever biological study of ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) has identified consistent blood differences associated with chronic inflammation, insulin resistance, and liver disease. Significantly, the results were mostly unaffected by patients’ activity levels, as low activity levels can sometimes hide the biological signs of illness, experts say.
June 20, 2025 at 1:01 PM
Reposted by Jessika
tomkindlon.bsky.social
New:
Unwilling or unable? Interpreting effort task performance in myalgic encephalomyelitis/chronic fatigue syndrome

www.frontiersin.org/journals/psy...

#MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME
Screenshot of list of authors, their affiliations and the introduction section
June 13, 2025 at 12:29 PM
Reposted by Jessika
stenhelmfrid.bsky.social
Dr. David Tuller. Chronic Denial: “The psychosomatic interpretation of Long Covid recycles a discredited framework, one that has repeatedly failed patients with #MECFS.”
www.openmindmag.org/articles/goi...
Chronic Denial
A debunked theory about chronic fatigue syndrome is being recycled to explain Long Covid—with troubling results.
www.openmindmag.org
May 28, 2025 at 8:33 AM
We do not need false hope.

www.bmj.com/content/389/...
Patients with severe ME/CFS need hope in the form of evidence-based interventions, not opinions.
www.bmj.com
May 22, 2025 at 4:11 PM
The costs of ME and longcovid. A report from Germany of the costs associated with the two illnesses.

mecfs-research.org/en/costrepor...
Rising Cost of Long COVID and ME/CFS
Die steigenden Kosten von Long COVID und ME/CFS in DeutschlandEin neuer Bericht von Risklayer und der ME/CFS Research Foundation modelliert e
mecfs-research.org
May 22, 2025 at 1:15 PM
Reposted by Jessika
cabruce.bsky.social
A rapid response from Michiel Tack to the BMJ on their recent Opinion piece on #ME from Miller et al.
The risk of blaming patients for their lack of recovery
www.bmj.com
May 19, 2025 at 7:52 AM
Reposted by Jessika
patientled.bsky.social
New PLRC-funded work out from Rob Wust & team!

Skeletal muscles in #LongCovid and ME *differ* from skeletal muscles induced by bedrest.

LC and ME is not deconditioning! 1/
www.medrxiv.org/content/10.1...
Skeletal muscle properties in long COVID and ME/CFS differ from those induced by bed rest
Patients with long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) suffer from a reduced exercise capacity, skeletal muscle abnormalities and post-exertional malaise (PEM), where...
www.medrxiv.org
May 7, 2025 at 2:46 AM
Today is the international ME day.

Please spread knowledge so that we can get health care, care, research and support.

We do not want to suffer any more!
irishmecfsassoc.bsky.social Irish ME/CFS Association @irishmecfsassoc.bsky.social · May 1
🧵
May is Myalgic Encephalomyelitis (M.E.) Awareness Month.

You can help by reposting and/or liking this image.

Day 1

#MEcfs #CFS #PwME
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Bone-crushing exhaustion Pain Insomnia Muscle weakness Cognitive problems Dozens of other disabling symptoms 24 hours a day 7 days a week 365 days a year Possibly for the rest of my life (unless a cure or effective treatment is found) Myalgic Encephalomyelitis (ME) is a painful and disabling disease, especially in its severe forms (ME is also known as Chronic Fatigue Syndrome in some countries) Click 'Like' and 'Share' to help me become visible and give me hope for a cure! MEAwarenessPics
May 12, 2025 at 12:03 PM
Reposted by Jessika
stenhelmfrid.bsky.social
#MECFS is a debilitating, neurological illness. Severe cases are like torture around the clock: pain, malaise, insomnia, sensitivity to sound, touch, and light. Some believe it’s just fatigue, but that doesn't even come close to describing the reality of ME/CFS. #MEAwarenessHour
April 23, 2025 at 8:57 PM
Reposted by Jessika
stenhelmfrid.bsky.social
People should know about ME/CFS, just as MS, Parkinson’s, and diabetes are common knowledge. When ME patients disclose their illness, they are often met with comments such as “I’m also tired”. Patients shouldn’t have to face such ignorance—it’s a severe illness. #MEAwarenessHour
April 30, 2025 at 7:49 PM
Reposted by Jessika
tomkindlon.bsky.social
Sadly very true. Happened to me and 30 years later I’m still suffering and much worse than I was initially (I was undiagnosed for 5 years).

#MEcfs #SevereME
May 10, 2025 at 11:40 AM
Reposted by Jessika
tomkindlon.bsky.social
Thousands demand withdrawal of review article recommending exercise therapy for chronic fatigue syndrome

Links in image:
www.cochranelibrary.com/cdsr/doi/10....

retractionwatch.com/2025/01/23/t...

Screenshot from the AMMES May email newsletter

#MEcfs #CFS
Image of a woman running Thousands demand withdrawal of review article recommending exercise therapy for chronic fatigue syndrome The decision to abandon a process to re-evaluate a review recommending exercise therapy for chronic fatigue syndrome (ME/CFS) has reignited calls for the article to be withdrawn. The 2019 version of the Cochrane Library review, “Exercise therapy for chronic fatigue syndrome,” has accumulated 67 citations, according to Clarivate’s Web of Science.
May 4, 2025 at 12:50 AM
Reposted by Jessika
tmprowell.bsky.social
#MedSky
Invasive cardiopulm exercise testing (iCPET) at Brigham & Women’s finds people w/ #MECFS & #longCovid have symptomatic ⬇️ aerobic capacity at peak exercise due to preload insufficiency & impaired systemic O2 extraction, latter c/w peripheral L➡️R shunt &/or limb skel muscle dysfunction. /1
May 4, 2025 at 7:34 PM
Reposted by Jessika
putrinolab.bsky.social
Again for those in the back:
👏🏼 PEM 👏🏼 is 👏🏼 NOT 👏🏼 deconditioning

Symptoms associated with effort expenditure in #LongCOVID, #MECFS and other energy limiting illnesses are physiological, not “preferential”

Thanks to @RobWust for this incredible work.

www.medrxiv.org/content/10.1...
Skeletal muscle properties in long COVID and ME/CFS differ from those induced by bed rest
Patients with long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) suffer from a reduced exercise capacity, skeletal muscle abnormalities and post-exertional malaise (PEM), where...
www.medrxiv.org
May 7, 2025 at 7:30 AM