Cornelia ME/CFS
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corandmecfs.bsky.social
Cornelia ME/CFS
@corandmecfs.bsky.social
39 followers 95 following 15 posts
I used to be a person, now I’m a ghost, lingering on in the world of the living. ME/CFS since 2011, severe since 2021.
Posts Replies Media Videos
Reposted by Cornelia ME/CFS
openmedf.bsky.social
From the OMF-supported MERC at @batemanhornecenter.bsky.social

🌙 What is Unrefreshing Sleep?

Sleep disturbances affect 90% of #MECFS patients, with issues in sleep quality (light, restless, interrupted) & timing (delayed, irregular).

Dr. Bateman explains & offers tips: ow.ly/1kuM50V6G0r.
The graphic lists key points about unrefreshing sleep: 1. Dysregulated sleep: hard to fall asleep and/or stay asleep, 2. Wake up feeling tired or unwell, 3. Sleep that remains non-restorative. The source is ‘ME/CFS: Essentials of Diagnosis and Management, Mayo Clinic Proceedings’.
February 26, 2025 at 2:08 PM
Reposted by Cornelia ME/CFS
nikosuvisto.com
Good news arrived today! I am part of a class action lawsuit regarding the discrimination of #MECFS patients within #Finland social insurance system. This concerns the unlawful denial of sickness benefits and disability pensions, which is being done in a discriminatory manner against us patients.1/8
A black and white photograph of a man’s fist resting on a bed sheet. The sheets are wrinkled around the fist. The lightest part of the photo is the fist.
February 24, 2025 at 4:44 PM
Reposted by Cornelia ME/CFS
tomkindlon.bsky.social
Mitochondrial Dysfunction in #MyalgicEncephalomyelitis / #ChronicFatigueSyndrome

journals.physiology.org/doi/10.1152/...

The corresponding author is the NIH researcher Paul Hwang who did the interesting WASF3 study

www.pnas.org/doi/10.1073/...

Image from Science for ME weekly update
#MEcfs #CFS
Physiology Mitochondrial Dysfunction in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome — Abu Mohammad Syed et al. Review. "Exercise intolerance and slow recovery from fatigue after physical exertion are hallmark symptoms of ME/CFS. From a bioenergetic perspective, these exertional symptoms could be explained by the rapid depletion and slow regeneration of ATP, slow oxidative metabolism of fuel substrates, and increased oxidative stress in skeletal muscle, all secondary to impaired mitochondrial function."
February 24, 2025 at 11:35 PM
Reposted by Cornelia ME/CFS
neurologistmom.bsky.social
⚠️ Rapamycin Update for My Long COVID and ME/CFS Family

We started giving our daughter rapamycin at 0.5 mg per week, as instructed, a few weeks ago. After the second dose, her sleep problems worsened to the point where she was almost getting no sleep, staying awake for days.⬇️
February 25, 2025 at 1:56 AM
Reposted by Cornelia ME/CFS
daniellebeckman.bsky.social
My friends are dying. People are dying of #LongCovid and #MECFS while society keeps ignoring their existence. Rest in peace, Faraz. Sorry we failed you.
February 25, 2025 at 6:33 PM
Reposted by Cornelia ME/CFS
tomparsons.bsky.social
I'm Tom.

I used to be a writer and a musician.

Now I am 95% bedbound and struggle to compose a few paragraphs or strum a simple chord progression.

I used to have mild #ME/CFS, but my functioning became much worse after being told to exercise and keep pushing myself to do more by clinicians.
February 25, 2025 at 10:31 PM
Reposted by Cornelia ME/CFS
me-cfs.bsky.social
R.I.P.🕯️

An extraordinary advocate with V. Severe ME.
sabinehermisson.bsky.social Dr. Sabine Hermisson 🦋 @sabinehermisson.bsky.social · Feb 24
🖤🕯️ Faraz Fallahi

Mein Mitgefühl:

Mit Faraz' Familie und allen, die um ihn trauern.

Mit allen, die schwer krank sind und um ihr Leben kämpfen.

Mit allen, die unter dem dramatischen Mangel an medizinischer Versorgung, Forschung und Therapien zu #MECFS leiden.
RIP 24.02.2025 Faraz
February 25, 2025 at 12:28 PM
Reposted by Cornelia ME/CFS
cabruce.bsky.social
#FundThePlan and help millions of #ME sufferers worldwide to regain their lives. Superb care for my bouts of cancer. Nothing for 32 years of severe ME.
February 25, 2025 at 7:57 AM
Reposted by Cornelia ME/CFS
millionsmissingfr.bsky.social
Atteint d’EM depuis 2018 et en état sévère, Faraz Fallahi agissait depuis son lit pour la reconnaissance de l’EM. Il nous a quittés le 24 février 2025. Nous ne connaissons pas les circonstances de son décès.
Nous sommes de tout cœur avec ses proches et la communauté.
veto-mag.de/faraz-fallahi/
February 25, 2025 at 8:54 AM
Reposted by Cornelia ME/CFS
katybrc.bsky.social
I've had #ME for 38 years, nothing has changed in that time, no care, treatments or funding for biomedical research
It's an appalling record for everyone who's had a responsibly to implement change for #pwME over decades
#FundThePlan @ashleydaltonmp.bsky.social &
@rthonwesstreeting.bsky.social
February 25, 2025 at 2:24 PM
Reposted by Cornelia ME/CFS
katha1970.bsky.social
#RIPFaraz

Erst Judith, jetzt Faraz. Mein Herz ist schwer. Ruhe in Frieden, lieber Faraz! Mögest Du nun endlich frei von Schmerzen und in Frieden sein. Den Angehörigen meine tief empfundene Anteilnahme! #MEcfs

🖤🕯️🕊️

x.com/derhorizonta...
Blaue Rose als Symbol für den Tod eines an #MECFS erkrankten Menschen
February 24, 2025 at 5:50 PM
Reposted by Cornelia ME/CFS
julialmv.bsky.social
I've been thinking about how to explain the challenge of living with ME/CFS and created this cartoon visualization.

Imagine the life of someone without ME is a rainbow of activities that each take a certain amount of energy.

ME limits your energy, and thereby the vibrancy of your life.
A stacked bar chart (oriented horizontally) labeled: Living with ME (myalgic encephalomyelitis / chronic fatigue syndrome) Each horizontal bar is a disease status: Pre-ME, Mild ME, Moderate ME, Severe ME, Very Severe ME. The width of each bar represents how much energy is available in each status (100, 50, 25, 12.5, and 6.25 respectively). Each bar is divided into sections for how one might allocate their energy: hygiene & nutrition (gray); caregiving, cleaning errands (red); work (orange); exercise (yellow); friends (green); hobbies (blue); fun (purple). With worsening ME, the hygiene & nutrition takes up a larger proportion of total available energy and the amount of energy available for all other parts of life shrinks. Mild ME has most things cut in half, with exercise cut smaller. Moderate ME removes exercise altogether, and everything else shrinks. Severe ME has only tiny slivers of red, orange, green, blue and purple. Very Severe ME has only a tiny sliver of green.
February 23, 2025 at 7:35 PM
Reposted by Cornelia ME/CFS
sabinehermisson.bsky.social
🖤🕯️ Faraz Fallahi

Mein Mitgefühl:

Mit Faraz' Familie und allen, die um ihn trauern.

Mit allen, die schwer krank sind und um ihr Leben kämpfen.

Mit allen, die unter dem dramatischen Mangel an medizinischer Versorgung, Forschung und Therapien zu #MECFS leiden.
RIP 24.02.2025 Faraz
February 24, 2025 at 7:30 PM
Reposted by Cornelia ME/CFS
sabinehermisson.bsky.social
www.spiegel.de/gesundheit/m...
(S+) Leben mit ME/CFS: Er hatte sich aufs Sterben eingestellt. Dann meldete sich eine Ärztin
Jahrelang vegetiert er unter Schmerzen in einem dunklen Raum, mit der Krankheit ME/CFS findet Faraz Fallahi keinen Arzt. Er rechnet mit dem Tod – als plötzlich Hoffnung naht. Die einzigartige Geschich...
www.spiegel.de
February 24, 2025 at 7:40 PM
Reposted by Cornelia ME/CFS
tomkindlon.bsky.social
2/

Deep sequencing of BCR heavy chain repertoires in myalgic encephalomyelitis/chronic fatigue syndrome — Ryback and Cowan

www.frontiersin.org/journals/imm...

Images from latest Science for ME weekly update

#MEcfs #CFS
Frontiers in Immunology Deep sequencing of BCR heavy chain repertoires in myalgic encephalomyelitis/chronic fatigue syndrome — Ryback and Cowan "the repertoires of ME/CFS patients did not display features relating to somatic hypermutation that would suggest defects in central tolerance, clonal selection or affinity maturation, or chronic antigen stimulation." "An increased ratio of IgM to IgG in [mild-moderate] patients is an exploratory result and would need to be replicated"
February 24, 2025 at 10:43 PM
Reposted by Cornelia ME/CFS
exceedhergrasp1.bsky.social
Reminder that #MEAction is holding a Town Hall tomorrow! I will be one of the staff speaking, along with Ben HsuBorger.

bsky.app/profile/meac...
meactnet.bsky.social #MEAction Network @meactnet.bsky.social · Feb 20
#MEAction’s Town Hall is February 25th at 2pm PST/5pm EST. Speakers include #MEAction staff members, volunteers, and Omar Wasow (MEAction board), Kehsi Iman Wilson (MEAction Board & NDS), AJ Link (New Disabled South), and Rabbi Elliot Kukla.
RSVP: ow.ly/NNYn50V3OZR
square image with a pink/brownish marble background. There is a pinkish box at the top with RSVP. Then a red/brown box in the center with the words: #MEACTION TOWN HALL -SPEAKERS- Omar Wasow #MEAction Board Co-Chair Kehsi Iman Wilson #MEAction Board Co-Chair & New Disabled South AJ Link New Disabled South Rabbi Elliot Kukla. #MEAction Staff & Volunteers TUESDAY, FEBRUARY 25TH2PM PST/5PM EST -Virtual-. The #MEACTION logo is the bottom right hand corner.
February 24, 2025 at 2:21 PM
Reposted by Cornelia ME/CFS
scheibenbogen.bsky.social
Am 12./13.5. findet die 3. internationale Charité MECFS Konferenz statt zu den Themen Versorgung, Krankheitsmechanismen und Therapiestudien u.a. mit David Putrino, Rob Wüst, Neurostingl, JdenDunnen, MichaelPeluso, Oystein Fluge.
events.mecfs-research.org/de/events/co...
ME/CFS Research Foundation
ME/CFS Research Foundation is a non-profit organization dedicated to advancing research and understanding of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome.
events.mecfs-research.org
February 23, 2025 at 9:13 AM
Reposted by Cornelia ME/CFS
tomkindlon.bsky.social
(Australia)
Opportunities to take part in ME/CFS or Long Covid research.

Some studies look for healthy controls

www.emerge.org.au/get-involved...

#MEcfs #LongCovid
Get Involved in Research – Emerge Australia
www.emerge.org.au
February 22, 2025 at 10:25 PM
Reposted by Cornelia ME/CFS
lifeatthewindow.bsky.social
I wrote my first poem since March last year!

About dissociating in my bedroom whilst the visiting nurse was taking 15 vials of blood from my arm.

About how nothing is the same as it was, and how life before seems like a mere mirage.

I’m normally shy about sharing, but I’m so happy!

#pwME
A poem which reads as follows: Dissolution I draw a frame around this room, gilt-edged, petal crust. A new frame, for this hollowed theatre once for Whispers and sighs and eyes meeting. The bed cradles twelve vials of blood. The nurse calls me ‘honey’ and speaks of a bravery I do not know. A Lie to tell to one another. I stare at drooping flowers on the sill, dust-laden, Still. The body turns to stardust, walking through Night once again, bones of toes in the sand, shift. Molecules of bare air gather in Sinew, corrode, erode the humanity of what once was a Sleek-limbed tarpan, hungrily eyeing the Open fields as laid across the palm of an Honourable, outstretched hand.
February 22, 2025 at 8:56 PM
Reposted by Cornelia ME/CFS
neurologistmom.bsky.social
“We want to help… but let us know when you have a biomarker.” #longcovid

Currently: Silos. Every lab works separately, mostly on the same thing, without coordination. Michael Peluso, M.D., Science Translational Medicine Webinar, Feb 21
February 22, 2025 at 10:29 PM
Reposted by Cornelia ME/CFS
stenhelmfrid.bsky.social
Trial by Error: Researchers and clinicians write to Cochrane about the exercise review on #MECFS: “The amended exercise therapy review continues to pose a risk to people with ME/CFS, including those with Long COVID who meet diagnostic criteria.”
virology.ws/2025/02/20/t...
Trial By Error: A Letter to Cochrane's Editor-in-Chief | Virology Blog
By David Tuller, DrPH This morning, I e-mailed the following letter to Dr Karla Soares-Weiser, Cochrane’s editor-in-chief, about the decision to abandon a p ...
virology.ws
February 22, 2025 at 6:51 AM
Reposted by Cornelia ME/CFS
paulkeeble.co.uk
Its time for the many decades long violation of ME/CFS patient human rights to end. For that to happen government must #FundThePlan and build an NHS that is #ThereForME.
February 21, 2025 at 7:11 PM
Reposted by Cornelia ME/CFS
franhaddock.bsky.social
A few days ago we heard the UK’s government delivery plan for ME will contain NO additional funding. How will this make a meaningful difference to #pwME?

So @wesstreeting.bsky.social and @ashleydaltonmp.bsky.social , please listen our lived experiences, and #FundThePlan

@thereforme.bsky.social
February 21, 2025 at 2:51 PM
Reposted by Cornelia ME/CFS
nickbenton.bsky.social
Dear @rthonwesstreeting.bsky.social & @ashleydaltonmp.bsky.social

My name is Nick and I have ME

I used to work, play football and take countryside walks. Now I cannot do any of those

The Delivery Plan for ME is an opportunity to invest in our future

Please #FundThePlan
@thereforme.bsky.social
February 21, 2025 at 3:58 PM