iiinova — where your digital self keeps evolving

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Open Medicine Foundation (OMF) @openmedf.bsky.social · 26/02/2025

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’.

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Niko Suvisto @nikosuvisto.com · 24/02/2025

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.

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Tom Kindlon @tomkindlon.bsky.social · 24/02/2025

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."

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Neurologist Mom @neurologistmom.bsky.social · 25/02/2025

⚠️ 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.⬇️

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Danielle Beckman @daniellebeckman.bsky.social · 25/02/2025

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.

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Tom Parsons @tomparsons.bsky.social · 25/02/2025

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.

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Yann (ME/LC) @me-cfs.bsky.social · 25/02/2025

R.I.P.🕯️ An extraordinary advocate with V. Severe ME.

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Carole Bruce @cabruce.bsky.social · 25/02/2025

#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.

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Millions Missing France @millionsmissingfr.bsky.social · 25/02/2025

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/

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Katy B @katybrc.bsky.social · 25/02/2025

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

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Katharina 🦋🍋🍀 @katha1970.bsky.social · 24/02/2025

#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

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Julia MV @julialmv.bsky.social · 23/02/2025

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.

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Dr. Sabine Hermisson 🦋 @sabinehermisson.bsky.social · 24/02/2025

🖤🕯️ 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.

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Tom Kindlon @tomkindlon.bsky.social · 24/02/2025

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"

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 24/02/2025

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...

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Carmen Scheibenbogen @scheibenbogen.bsky.social · 23/02/2025

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...

events.mecfs-research.org

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.

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Tom Kindlon @tomkindlon.bsky.social · 22/02/2025

(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

emerge.org.au

Get Involved in Research – Emerge Australia

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lifeatthewindow.bsky.social @lifeatthewindow.bsky.social · 22/02/2025

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.

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Neurologist Mom @neurologistmom.bsky.social · 22/02/2025

“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

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Sten Helmfrid @stenhelmfrid.bsky.social · 22/02/2025

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...

virology.ws

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 ...

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Paul Keeble ME/LC @paulkeeble.co.uk · 22/02/2025

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.

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Fran H @franhaddock.bsky.social · 21/02/2025

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

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Karen Hargrave @karenlhargrave.bsky.social · 21/02/2025

Dear @wesstreeting.bsky.social & @ashleydaltonmp.bsky.social I’m a carer to my husband James who has very severe ME. He used to be a civil servant. Now he can’t get out of bed or have a conversation. The Delivery Plan for ME is an opportunity to invest in our future. #FundThePlan

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Helen Morgan MP @helenmorganlibdem.bsky.social · 19/02/2025

My piece in today's @thetimes.com. Here in North Shropshire alone many people are crying out for more support as they suffer from ME. The Government must do more.

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Nina Steinkopf @ninasteinkopf.bsky.social · 20/02/2025

Thank you, all 46, who signed this letter: «The amended exercise therapy review continues to pose a risk to people with ME/CFS, including those with Long COVID who meet diagnostic criteria. [6] It should be withdrawn.» virology.ws/2025/02/20/t...

virology.ws

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 ...

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 20/02/2025

Suppose I were to give a talk on what you'd find most interesting (that's within my interests/wheelhouse). What would you like to hear/learn about? #MECFS #LongCOVID #NEISvoid Please share, I'm curious!

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Neurologist Mom @neurologistmom.bsky.social · 21/02/2025

Thank you so much, @virusesimmunity.bsky.social for your insight on #LongCovidKids. Immunology is key—my daughter has developed multiple COVID-triggered autoimmune conditions, and the list keeps growing. It’s more debilitating than it seems.

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WE&ME Foundation @weandme.bsky.social · 21/02/2025

Die Premiere von CHRONISCH IGNORIERT war am 19.02.2025 – eine bewegende, informative Veranstaltung. Der Dokumentarfilm läuft am 25.02. um 22:35 Uhr auf Arte TV als Chronisch Krank - Chronisch Ignoriert und ist ab 24.02. online in der ARTE Mediathek. 💙 #MECFS

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C&EN (Chemical & Engineering News) @cenmag.bsky.social · 20/02/2025

Avindra Nath, a neurologist with the US National Institutes of Health (NIH), wants to use pembrolizumab to try to help improve the conditions of people with long COVID whose T cells may be exhausted. cen.acs.org/pharmaceutic... #chemsky #biosky #longcovid 🧪

cen.acs.org

Long COVID studies stymied by pharma’s lack of cooperation

Academic researchers want to repurpose drugs for the condition. Manufacturers aren’t supplying them

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Tom Kindlon @tomkindlon.bsky.social · 20/02/2025

UK: The Times newspaper is looking to hear from people with ME. The form can be filled in here: www.thetimes.com/article/0612... It's possible not everyone would be able to access it at this link #MyalgicEncephalomyelitis #ChronicFatigueSyndrome #MEcfs #CFS #PwME

Have you or anyone you know been treated for ME? Share your experience with us below.
Your name
Age
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The Real McCoy @rippermd41.bsky.social · 20/02/2025

One of the many reasons I HATE the name “Chronic Fatigue Syndrome” is it’s confusing. I’ll see people say “oh, my niece had chronic fatigue and exercise helped her.” You drill down and find out they only had the symptom of “chronic fatigue.” They don’t have #MECFS

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Neurologist Mom @neurologistmom.bsky.social · 20/02/2025

The abuser-victim relationship model easily applies to many chronic complex patients and the healthcare system. They reward you, maybe with a blood test or medication, then tease you. If you “behave,” the cycle repeats until you completely surrender.

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PolyBio Research Foundation @polybiorf.bsky.social · 18/02/2025

Dr. Amy Proal, Scientific Director of the CoRE Clinic at Mount Sinai, discusses viral persistence as a driver of ME/CFS with Dr.s Raven Baxter & David Putrino: “[research] finds the RNA backbone & protein of enteroviruses in ME/CFS gut tissue.” @coresinai.bsky.social

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Guus @guusontheinternet.bsky.social · 20/02/2025

Does anyone have a good overview of actions/campaigns for #LongCovidAwarenessDay? (:

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Putrino Lab @putrinolab.bsky.social · 20/02/2025

A tumultuous 24-ish hours since our preprint was released yesterday. I mentioned that this was a fraught issue and I genuinely do understand that people have mixed feelings about the work. I wanted to take some time to respond to some of the concerns and comments that have 1/

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Putrino Lab @putrinolab.bsky.social · 20/02/2025

arisen. First, and most importantly: #LongCOVID (LC) and post-vaccine syndrome (PVS) both exist. Anyone claiming that all LC or even *most* LC is actually PVS is unserious and is making up nonsense that is not supported by the consensus science. I cannot stress this strongly 2/

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Tom Kindlon @tomkindlon.bsky.social · 20/02/2025

UK research: "The data demonstrates little or no improvement over 16 weeks, while the frequency of contact throughout the study demonstrates the episodic and relapsing nature of long COVID" jogh.org/2025/jogh-15... Screenshot from latest Science for ME weekly update #LongCovid #PASC

Preprint: BioRxiv
Identification of a multi-omics factor predictive of long COVID in the IMPACC study — Gisela Gabernet et al.
"Notably, our list of top androgenic steroid metabolites has strong overlap with the androgenic steroid signature from an independent all-female cohort of healthy controls compared to myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) patients."

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Guus @guusontheinternet.bsky.social · 20/02/2025

rage against the dying of the light.

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A 😎 Long Covid and MECFS Billboards (DM for free merch!) @aaronca11.bsky.social · 18/02/2025

LCMEBillboards are back! Please spread the word and come along to this Space if you can. If you’re unable to join in for any reason feel free to comment or DM suggestions and we can raise them for you! Hoping to do another big campaign like last year! #LongCovid #MECFS x.com/lcmebillboar...

x.com

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Tom Kindlon @tomkindlon.bsky.social · 18/02/2025

"Most participants grieved for lost hobbies, abilities and opportunities and most participants spoke about inconsistent, fluctuating educational support for their ME/CFS needs" research.manchester.ac.uk/en/studentTh... Screenshot from latest Science for ME weekly update #MEcfs #PwME

Thesis: The University of Manchester
What is the psychological and educational impact of being an emerging adult living with ME/CFS? A qualitative interpretative phenomenological analysis — Emma Williams
"Feeling misunderstood was at the heart of many psychological and educational experiences." "All participants reported ME/CFS has restricted their lives, bodies or future. A detrimental tendency to push beyond energy capacity was exacerbated by pressure, frustration and/or denial. Most participants grieved for lost hobbies, abilities and opportunities and most participants spoke about inconsistent, fluctuating educational support for their ME/CFS needs."

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Tom Kindlon @tomkindlon.bsky.social · 17/02/2025

Hilda Bastian @hildabast.bsky.social "I’m using this page to keep track of what I’m posting about the Cochrane Collaboration" [& its abandoned update of the review of exercise therapy for CFS] hildabastian.wordpress.com/cochrane-stu... Screenshot from latest Science for ME weekly update #MEcfs #CFS

Hilda Bastian, leader of the Independent Advisory Group appointed by Cochrane in 2020 to advise the group writing the now cancelled new review, has continued to take actions related to the cancellation. She has set up a page to record her public actions, including: "My open letter asking the Cochrane Board questions about transparency of governance and minutes."
Hilda's page | Thread

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Tom Kindlon @tomkindlon.bsky.social · 17/02/2025

Unveiling Sleep Dysregulation in Chronic Fatigue Syndrome with and without #Fibromyalgia Through Bayesian Networks www.medrxiv.org/content/10.1... "we identified the effects of CFS and CFS+FM on alteration sleep and its dynamics, supporting their clinical differentiation” #MEcfs #CFS

medrxiv.org

Unveiling Sleep Dysregulation in Chronic Fatigue Syndrome with and without Fibromyalgia Through Bayesian Networks

Chronic Fatigue Syndrome (CFS) and Fibromyalgia (FM) often co-occur as medically unexplained conditions linked to disrupted physiological regulation, including altered sleep. Building on the work of K...

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Tom Kindlon @tomkindlon.bsky.social · 17/02/2025

2/ The Dutch research team of Brent Appelman and Rob Wust have written a reply to the critique by Ranque et al., explaining that the abnormalities in the muscle tissue of Long Covid patients are unlikely due to deconditioning. www.nature.com/articles/s41... #LongCovid #PASC

nature.com

Reply: Muscle abnormalities in Long COVID - Nature Communications

Nature Communications - Reply: Muscle abnormalities in Long COVID

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Audrey Ryback @aryback.bsky.social · 17/02/2025

Pleased to share this research from my PhD in @graemecowan.bsky.social's lab! We replicated existing evidence of moderately increased IGHV3-30 usage in B cells of patients with mild/moderate, but not severe ME. www.frontiersin.org/journals/imm...

frontiersin.org

Frontiers | Deep sequencing of BCR heavy chain repertoires in myalgic encephalomyelitis/chronic fatigue syndrome

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Tom Kindlon @tomkindlon.bsky.social · 17/02/2025

Newly published UK research: Deep sequencing of BCR heavy chain repertoires in myalgic encephalomyelitis/chronic fatigue syndrome www.frontiersin.org/journals/imm... Discussion: www.s4me.info/threads/deep... #MEcfs #CFS

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a common and debilitating chronic illness of unknown aetiology. Chronic infection and autoimmune responses have been proposed as two mechanisms that potentially underlie the pathogenesis of ME/CFS. To explore these disease hypotheses, we characterised the antigen-specific receptors of B cells using adaptive immune receptor repertoire sequencing. We compared the B-cell receptor (BCR) repertoires of 25 patients with mild/moderate ME/CFS, 36 patients with severe ME/CFS, 21 healthy controls, and 28 patients with multiple sclerosis (MS) to identify signatures of infection or autoimmune responses. ME/CFS patients did not display increased clonality or differential somatic hypermutation compared to healthy controls and patients with MS. One of two immunoglobulin heavy variable (IGHV) genes, IGHV3-30, reported to be increased in ME/CFS patients in a previous study, was replicated in patients with mild/moderate disease in our cohort. However, there was no evidence of ongoing adaptive responses in IGHV3-30 repertoires from mild/moderate ME/CFS patients with increased IGHV3-30 usage. There were no detectable repertoire signatures associated with infection or autoimmunity in repertoires from ME/CFS patients, but we observed skewing of the ratio of IgM to IgG BCRs in patients with mild/moderate ME/CFS, a preliminary finding that presents an opportunity for follow-up work.

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Chris Ponting @cgatist.bsky.social · 17/02/2025

"There are currently no plans to allocate additional [DHSC] funding towards the myalgic encephalomyelitis / chronic fatigue (ME/CFS) final delivery plan" @ashleydaltonmp.bsky.social questions-statements.parliament.uk/written-ques...

questions-statements.parliament.uk

Written questions and answers - Written questions, answers and statements - UK Parliament

Information from UK Parliament on written questions & answers, written statements and daily reports.

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Daniel Missailidis, PhD @danielmissailidis.bsky.social · 11/02/2025

Looking for a handful of people with ME/CFS in VIC to round out a large study of immune and metabolic function and gut microorganisms. I do home visits where helpful and provide reimbursement to all participants. ❤️ If you’re interested please get in touch at D.Missailidis@latrobe.edu.au

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