iiinova — where your digital self keeps evolving

TamaraDNomad @tamaradnomad.bsky.social · 21/09/2026

I’ll send you an email in the afternoon. I plan to research this through this winter

TamaraDNomad @tamaradnomad.bsky.social · 21/09/2026

Is this just for UK or Worldwide? Because something really wrong is happening in Spain. Let me know if it would be interesting 🙏🏻 thank you for doing this

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TamaraDNomad @tamaradnomad.bsky.social · 03/09/2026

@uocuniversitat.bsky.social estoy intentando contactaros de todas las maneras posibles. No hay forma humana. ¿No tenéis un teléfono? Vuestro formulario de contacto me falla al confirmarlo por email, necesito hablar con alguien por teléfono.

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TamaraDNomad @tamaradnomad.bsky.social · 16/08/2026

Thank you for your research and for the unstoppable work for the science of ME. Could we know why the UK biobank has shut everyone out? Thank you and all your team

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Chris Ponting @cgatist.bsky.social · 06/08/2026

Meanwhile, we keep going sequencing the entire genomes of 6,000 #pwME in the #SequenceME and Long Covid project. www.actionforme.org.uk/research-cam... institute-genetics-cancer.ed.ac.uk/research/sup...

actionforme.org.uk

Sequence ME & Long Covid

SequenceME & Long Covid is a major new whole-genome sequencing study to understand ME and Long Covid.

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Chris Ponting @cgatist.bsky.social · 06/08/2026

ME/CFS - with Long Covid - should now be treated by Governments and society as a common and highly debilitating disease. The neglect, scorn and gaslighting must stop.

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Chris Ponting @cgatist.bsky.social · 06/08/2026

Looking back, the DecodeME project’s primary importance is its objective and statistically/technically robust evidence that ME/CFS is an organic disease. The alternative BPS hypothesis that it’s not a disease but an illness belief has, by contrast, no similarly strong evidence.

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Chris Ponting @cgatist.bsky.social · 06/08/2026

But, this year, as we were preparing an update, the UK Biobank analysis platform shut us & everyone out. It’s due to reopen in September but with limited functionality. So realistically the new update will now be in 2027.

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Chris Ponting @cgatist.bsky.social · 06/08/2026

An analyst found that ME/CFS genetic risk is especially concentrated in neuronal subsets trafalmadorian97.github.io/mecfs_bioinf...

trafalmadorian97.github.io

MAGMA HBA (DecodeME, ME/CFS) - ME/CFS Bioinformatics Home

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Chris Ponting @cgatist.bsky.social · 06/08/2026

Today is the 1-year anniversary of the #DecodeME genetics preprint. It was an emotional day for many including everyone in the team that delivered the project #pwME #MEcfs @actionforme.bsky.social institute-genetics-cancer.ed.ac.uk/sites/defaul...

institute-genetics-cancer.ed.ac.uk

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Chris Ponting @cgatist.bsky.social · 11/08/2026

What is the evidence that psychosocial factors are direct aetiological factors in chronic diseases? This question, asked by George Davey Smith in 2005, and a follow-up comment from Simon Wessely, snagged my attention. Blog via @simonmcg.bsky.social's site. mecfsresearchreview.me/2026/08/11/o...

mecfsresearchreview.me

On BPS & disease causation: George Davey Smith’s cautionary tale

by Professor Chris Ponting A guide to the Biopsychosocial model recently put out by Long Covid Advocacy ultimately brought me to a 2005 book chapter, written by Professor George Davey Smith, entitl…

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valebodi.bsky.social @valebodi.bsky.social · 05/08/2026

There is an urgent need for professionals to learn more about #ME/CFS and it is hoped that these videos will continue to play a significant educational role. Dialogues for a neglected illness @dialoguesmecfs.bsky.social #ICD-10G93.3 #ICD-10G93.32 #ICD-118E49

dialogues-mecfs.co.uk

Dialogues for a neglected illness - Dialogues

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valebodi.bsky.social @valebodi.bsky.social · 05/08/2026

Although our results do not establish causation between virus reactivation and clinical outcomes, we highlight the prevalence of chronic viral reactivation during acute COVID-19 and long COVID. Our findings challenge the prevailing view that chronic viral reactivation is primarily a consequence of

nature.com

Virus reactivation in acute and long COVID-19 - Nature

Chronic reactivation of distinct herpesviruses and anelloviruses occur during acute and long COVID-19, and track with disease severity, inflammation and outcomes, revealing immune signatures with prog...

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Anil van der Zee @anilvanderzee.bsky.social · 05/08/2026

"Unlike earlier studies, they didn’t detect a link between EBV and these signs of #LongCovid. [...] But the team did find an association between anellovirus reactivation and fatigue or other physical challenges." www.science.org/content/arti...

science.org

COVID-19 can wake up dormant viruses in the body, large study confirms

Virus reactivations by SARS-CoV-2 could worsen initial symptoms and increase risk of Long Covid

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C.H. Romatowski @chromatowski.bsky.social · 07/06/2026

I’m usually a pretty upbeat person but days on end of that garbage Wired article is starting to get to me. They’re doing material harm to the futures of millions, me included, and I can’t really pretend otherwise, even to myself.

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Billy Hanlon @bhanlon15.bsky.social · 04/06/2026

He certainly shifted the conversation. Away from the evidence, that is

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Vatnik Soup @vatniksoup.bsky.social · 04/06/2026

As a little dessert to this soup: Candace also claimed that Charlie Kirk was a “time traveler” from “X-Men school”, and did an eight-hour (!) podcast on Brigitte Macron’s gender, a pathetic attempt to help Russia undermine Emmanuel Macron’s presidency. No one cared, though.

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Vatnik Soup @vatniksoup.bsky.social · 04/06/2026

Russia spends $5 billion a year on propaganda to manufacture support for its invasions through troll farms, bots and fake narratives such as those pushed now by Candace Owens. Fact-based research to counter it takes time and effort — please support our work: vatniksoup.com/en/support-o...

vatniksoup.com

Fight Disinformation With Us: Support our Work | Vatnik Soup

Vatnik Soup: Your most comprehensive resource on pro-Kremlin disinformation and propaganda.

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Vatnik Soup @vatniksoup.bsky.social · 04/06/2026

In today’s Vatnik Soup, we’ll introduce an American conspiracy theorist, podcaster & antisemite, Candace Owens. She’s best known for spreading conspiracy theories, attacking Ukraine, promoting pro-Kremlin BS, and becoming a favorite of Russian state media. 1/21

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Long Covid Advocacy @longcovidadvoc.com · 04/06/2026

58 organisations. 1,200 individuals We're incredibly grateful to everyone who supported our open letter to the Royal College of Psychiatrists. This coalition brings us together from across the community. A powerful reminder of what solidarity can achieve. Update & full 💌👇🎙️

Open Letter update graphic featuring a black-and-white photograph of two hands gently clasped in support. Large white text reads: “Open Letter Update: Solidarity, Engagement, and Next Steps.” Smaller text below states: “58 orgs & 1200 individuals sign regarding the framing of Long Covid in the Royal College of Psychiatrists 2026 International Congress.” The website “LONGCOVIDADVOCACY.SUBSTACK.COM” appears at the bottom. The image conveys solidarity, collective action, patient advocacy, Long Covid awareness, disability rights, and community engagement.

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TamaraDNomad @tamaradnomad.bsky.social · 04/06/2026

Our friend Daryna is at risk of dying due to #medicalgaslighting during the war in #Dnipro #ukraine. She needs urgently to be moved to #Berlin for treatment, but without an accessible apartment she won’t have medical treatment & risk to be sent out of Berlin. Please #help #emergency #MECFS #pwME

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TamaraDNomad @tamaradnomad.bsky.social · 12/05/2026

#MEAwarenessDay @meinternational.bsky.social #METruthorDare I choose Truth. The truth is that most of us cannot believe that we feel this bad and we are yet alive. #ME #MECFS #pwME #MillionsMissing Want to play? Watch the video: youtu.be/s2ZcyDXQxME

youtu.be

Truth or Dare ME International

YouTube video by ME INTERNATIONAL

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TamaraDNomad @tamaradnomad.bsky.social · 12/05/2026

May 12 is International #MEAwarenessDay. We're launching #METruthorDare: patients and allies sharing the truth of life with Myalgic Encephalomyelitis, one post at a time. Choose TRUTH or DARE. Tag @meinternational.bsky.social. Let's make ME visible. #MECFS #ME #pwME #MillionsMissing

youtu.be

Truth or Dare ME International

YouTube video by ME INTERNATIONAL

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ME International @meinternational.bsky.social · 12/05/2026

May 12 is ME Awareness Day. People with ME face isolation and hardship with very little support. ME International — all volunteer-run — provides Zoom socials, equipment, hard times support, and advocacy. Donate or share, both help me-international.org/donate/ #ME #MECFS #MEAwarenessDay #pwME

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TamaraDNomad @tamaradnomad.bsky.social · 20/04/2026

She has severe M.E., survived two strokes, and has been bedbound since 2022 — alone in Portugal with no income, no family nearby, and no safety net. Please help or share. gofund.me/5e08a095e #MEAwareness #ChronicIllness #Fibromyalgia #DisabilityRights #GoFundMe #ChronicPain #InvisibleIllness

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TamaraDNomad @tamaradnomad.bsky.social · 17/01/2026

Absolutamente de acuerdo. También me preocupa haber votado a un partido que ha vetado la votación de la guardia revolucionaria iraní como terrorista en Europa. ¿Los manifestantes iranís no son tan importantes como los palestinos?

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Anil van der Zee @anilvanderzee.bsky.social · 15/01/2026

„Papa, I can't live like this, please kill me.“ archive.ph/6K1AQ #kidswithME #LongCovidkids #pwme #myalgicE #LongCovid #severeME

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TamaraDNomad @tamaradnomad.bsky.social · 12/01/2026

Pues que se lo digan a los miles de pacientes con #EMSFC que no son tratados igual depende de la comunidad. Por cierto Mónica García nos tiene absolutamente abandonadas, especialmente a las pacientes severas y muy severas

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TamaraDNomad @tamaradnomad.bsky.social · 07/01/2026

Meanwhile I’m #severeME warm in my bedroom and with my mom’s help, Daryna in #Ukraine also severe with #MECFS has endured a night with over 40 bombs & will have weeks of water & electricity shortage. Please help us help her. We need a #probono #lawyer in #Germany. We need her safe #pwME #War

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TamaraDNomad @tamaradnomad.bsky.social · 07/01/2026

You don’t need to speak German. Sometimes is basic tasks as make lists or search for information. We communicate through a very slow Telegram group.

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TamaraDNomad @tamaradnomad.bsky.social · 06/01/2026

A group of #severeME patients are trying to save Daryna, a young woman from #Ukraine with severe #MECFS, from the bombs & negligence. We want to take her as #refugee to #Germany. We find no help from anyone, including associations & NGO. Would you volunteer to help? Contact me. #pwME

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TamaraDNomad @tamaradnomad.bsky.social · 06/01/2026

Please share and comment for visibility

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TamaraDNomad @tamaradnomad.bsky.social · 06/01/2026

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TamaraDNomad @tamaradnomad.bsky.social · 08/10/2025

Ya pero yo en muchas cosas no concuerdo con Podemos (especialmente Belarra que nos jodió a las personas con discapacidad), con Yolanda con mensajes genocidas etc. Y ahora no podré votar a PSOE. Me veo votando a PACMA

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TamaraDNomad @tamaradnomad.bsky.social · 06/10/2025

El CERMI hace muchas cosas pero deja tiradas a alumnas de la UNED con discapacidad. Y no hay respuesta de ninguna manera

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TamaraDNomad @tamaradnomad.bsky.social · 05/10/2025

A lo mejor deberías tú leer más.

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TamaraDNomad @tamaradnomad.bsky.social · 05/10/2025

Y tú quién eres para saber lo que leí o no leí?

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TamaraDNomad @tamaradnomad.bsky.social · 05/10/2025

I feel you. I also could process better my body not working than my mind 😭 Hugs 🫂

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TamaraDNomad @tamaradnomad.bsky.social · 05/10/2025

My brain fog is so huge these days. I managed to improve my sleep a little but the fog is hard. I can barely pay attention, read or remember stuff. I hate cognitive impairment on top of my body not working #MECFS #pwME #brainfog #MillionsMissing

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Vlad Vexler @vladvexler.bsky.social · 05/10/2025

Health allowing, I’ll go live later - from a more horizontal position than usual. I’ll take any Qs about my illness - ME, Long Covid - and how it shapes my work and limits. You can also bring Qs about your chronic illness journey. We’ll explore together. www.youtube.com/live/dQuJPpH...

youtube.com

Inside My Illness: ME & Long Covid Q&A

YouTube video by Vlad Vexler Chat

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TamaraDNomad @tamaradnomad.bsky.social · 05/10/2025

Pedro Sánchez prácticamente no ha mencionado a los rehenes de Hamas ni al grupo terrorista. Como votante vuestra estoy absolutamente decepcionada con los dobles estándares. Y como hay q decirlo, sí es genocidio y sí Netanyahu es un criminal. Una cosa no quita la otra

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Tom Kindlon @tomkindlon.bsky.social · 26/09/2025

Important new international #fibromyalgia study: "The genetic architecture of fibromyalgia across 2.5 million individuals" www.medrxiv.org/content/10.1... Someone on an ME/CFS forum has said: "I see some familiar genes from DecodeME*: RABGAP1L, OLFM4, DCC" *Similar ME/CFS study #Fibro #FMS #FM

Fibromyalgia is a common and debilitating chronic pain syndrome of poorly understood etiology. Here,
we conduct a multi-ancestry genome-wide association study meta-analysis across 2,563,755 individuals
(54,629 cases and 2,509,126 controls) from 11 cohorts, identifying the first 26 risk loci for fibromyalgia.
The strongest association was with a coding variant in HTT, the causal gene for Huntington’s disease.
Gene prioritization implicated the HTT regulator GPR52, as well as diverse genes with neural roles,
including CAMKV, DCC, DRD2/NCAM1, MDGA2, and CELF4. Fibromyalgia heritability was
exclusively enriched within brain tissues and neural cell types. Fibromyalgia showed strong, positive
genetic correlation with a wide range of chronic pain, psychiatric, and somatic disorders, including
genetic correlations above 0.7 with low back pain, post-traumatic stress disorder and irritable bowel
syndrome. Despite large sex differences in fibromyalgia prevalence, the genetic architecture of
fibromyalgia was nearly identical between males and females. This work provides the first robust genetic
evidence defining fibromyalgia as a central nervous system disorder, thereby establishing a biological
framework for its complex pathophysiology and extensive clinical comorbidities.

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It's ME(Jaime) @exceedhergrasp1.bsky.social · 26/09/2025

This is extremely bad. In the past, the Congo would have leaned heavily on USAID. That's no longer possible. "...Just 1,740 people in three health zones of Kasai province have been vaccinated as of Sept. 21. The Bulape zone alone has a population of more than 212,000."

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Tom Kindlon @tomkindlon.bsky.social · 27/09/2025

"Never-Words for Patients With Invisible Illnesses – Liza Di Leo Thomas, MD" From: When We Don’t Have All the Answers: #LongCOVID and the Need for Humility in Medicine www.ochsnerjournal.org/content/25/3... #invisibleillness #LongCovid #chronicillness #hiddenillness #ChronicIllnesses

Table 2. Never-WordsforPatientsWithInvisibleIllnesses– Liza Di LeoThomas,MD Di Leo Thomas, L Never-WordPhrase Alternative Explanation “But you look fine.” “At least you don’t look sick.” “Great news! All your tests are negative!” “You can’t believe everything you see online. Let’s not diagnose you based on a TikTok influencer.” “At least you’re not bedbound, wheelchair bound, don’t have cancer, et cetera, et cetera, et cetera….” “Wedon’t knowmuchaboutthisillness. There’s nothing I can do for you.” “It must be frustrating to feel so awful.” “The goodnewsiswehaveruledout (A, B, C) by doing these tests. But I believe there is something wrong, and I will work with you to figure it out.” “Thank you for taking such an interest in your illness and advocating for yourself. Let’s talk about what you saw online.” “It sounds like you are suffering with this quite a bit. Can you explain how it has affected your quality of life?” “I realize the research on Long COVID is slow to come, andIcan’t imagine how frustrating that is for you. Let’s see whatwecandorightnowtotreat someofyoursymptomsandimprove your quality of life.” Telling patients they look fine may make themfeel like you are doubting their illness, even if you are not. Somepatients maynotfeel like it is great newsthat test after test is negative whentheyknowsomethingis absolutely wrong with them. Online communities have become ahuge source of support for patients with LongCOVIDandotherinvisible illnesses. Hearing someone else describe the same symptomscanbe incredibly validating. Avoid dismissing these sources outright. Avoid starting with “at least,”which can sound dismissive or invalidating. Instead, explore how the illness impacts the patient’s life. Even without definitive treatments, providers can offer symptom managementandhope. Acknowledging the patient’s frustration while focusing on what can bedoneisempowering.

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TamaraDNomad @tamaradnomad.bsky.social · 22/09/2025

I’m so excited. Someone named “Jennifer Brea” signed my petition. I hope it was the Jennifer Brea. Thank you! If she can do it you can do it too. I’m aiming for 15.000 signatures #MECFS #pwME www.change.org/p/soy-discap...

change.org

Firma la petición

Soy Discapacitada, No una Criminal: Nuestra Lucha por el Derecho a Examinarnos

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