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TamaraDNomad

@tamaradnomad.bsky.social
221 followers 135 following 172 posts

Disabled advocate - #Interiordesigner - #Anthropology student - Multi local - #SWYer - #Fibro + #MECFS - 1 of the #MillionsMissing + #Disabledguerrera linktr.ee/jailedtiger

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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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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
Since then, we & others have been working hard to better understand these results. With replicated results, @precisionlife.bsky.social found that ME/CFS is a complex genetics condition link.springer.com/article/10.1...
link.springer.com
Identification of novel reproducible combinatorial genetic risk factors for myalgic encephalomyelitis in the DecodeME patient cohort and commonalities with long COVID - Journal of Translational Medici...
Background Myalgic encephalomyelitis (also known as ME/CFS or simply ME) has severely impacted the lives of tens of millions of people globally, but the disease currently has no accurate diagnostic to...
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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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Chris Ponting @cgatist.bsky.social · 21/10/2024
A personal viewpoint on #MECFS. This is focused not on #pwME rather on why we - society - forsake them. Please read ⬇️ theconversation.com/ignored-blam...
theconversation.com
Ignored, blamed, and sometimes left to die – a leading expert in ME explains the origins of a modern medical ‘scandal’
The co-lead of the world’s largest ever genetic study into ME calls for a radical change in how society deals with the disease.
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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 · 09/02/2026
My friend Katiana, a #severeME patient from #Greece might have the chance to break free from her abusive household finally! She has the apartment but it is empty. Can you help or share? gogetfunding.com/support-kati... #MECFS #pwME #MillionsMissing #help
gogetfunding.com
Support Katiana’s medical expenses against Severe ME, Long Covid and co
‘Hello everyone, I’m Katiana, a 26-year-old former architecture student, and with the support of my dear friends, I’m reaching out to you with an urgent appeal. After contracting COVID-19 in December ...
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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 · 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 · 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
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 · 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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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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TamaraDNomad @tamaradnomad.bsky.social · 18/08/2025
I have compiled a humble guide with the product suggestions of #MECFS patients. It's the first draft, please feel free to correct, comment and add. #pwME #MillionsMissing #MyalgicEncephalomyelitis #MyalgicE www.canva.com/design/DAGwL...
canva.com
Unsupported client – Canva
Unsupported client – Canva
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TamaraDNomad @tamaradnomad.bsky.social · 16/08/2025
Which products have been life saving or made your living more comfortable (and please add where are you located to know where you bought them)? If you have links please share them if you have the capacity #MECFS #pwME #MillionsMissing #CanYouSeeMENow #MyalgicEncephalomyelitis #MyalgicE
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sarah boothby @swastrosarah.bsky.social · 31/07/2025
Isla's mother has been arrested under suspicion of causing her death from ME last year (heart failure). There was no inquest. Isla's younger sister (15), who also has ME, has been removed from the only people who understand how the disease must be managed. Imagine her fear. #MEKills #HumanRights
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Yann (ME/LC) @me-cfs.bsky.social · 31/07/2025
This is Isla at age 8. She died at age 18 with severe ME/CFS. Isla’s mum, who took care of Isla and tried to protect her from abusive medical professionals has been arrested. The state and medical system are trying to blame her for a death resulting from neglect and harmful medical practice.

More, more, more

You are meant to understand my illness but you all do is push, push, push. Nothing I do is ever good enough. I am proud and think you will be pleased with me as I have been going to school much more than before, but all you do is say I need to stay there longer, and if I feel ill I can’t [go] home early. I can’t get to sleep at night and you make me feel like it is my fault. You tell my parents to ignore me at night time, even when I am upset and feeling scared and lonely. Lucky for me they ignore you! I am so tired but you say I still have to get out of bed and walk even at the weekend after I have been at school all week. I don’t like coming to see you, it makes me worry what you are going to ask me to do next. My mum tells you I sometimes feel much worse but you tell us I just have to do more, more, more. You speak to my school and I worry they will be on your side and expect more of me too. I worry about what you are going to tell us to do next. I think you should care more about the children who come to see you and try to understand what they are going through.

From Isla aged 8
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Isabel Ramirez-Burnett @isabelrb.bsky.social · 30/06/2025
My birthday is in 2 days. Help me celebrate by helping me do the work to advance research and care of MECFS and Long Covid at @renegaderesearch.bsky.social Donate to my birthday fundraiser if you are able. Any amount helps tinyurl.com/Renegage-Res...
tinyurl.com
Isabel Ramírez-Burnett
Remission Biome is a community science, patient and caregiver-led project of the non-profit, decentralized research organization, Renegade Research. We work in collaboration with researchers and clini...
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TamaraDNomad @tamaradnomad.bsky.social · 30/06/2025
Hi! Looking for an ME specialist for a severe USA patient, someone that does virtual appointments as she can’t move. Any recommendations? #help #MECFS #MillionsMissing #pwME #severeME
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TamaraDNomad @tamaradnomad.bsky.social · 30/06/2025
Hi! Looking for an ME specialist for a severe USA patient, someone that does virtual appointments as she can’t move. Any recommendations? #help #MECFS #MillionsMissing #pwME #severeME
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TamaraDNomad @tamaradnomad.bsky.social · 20/05/2025
Physically and emotionally destroyed. #MECFS is reducing me to ashes. Don’t feel able to do anything #pwME #MillionsMissing
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Aaron Reichlin-Melnick @reichlinmelnick.bsky.social · 19/05/2025
Today's action is the single largest mass-illegalization event in US history. 350,000 people woke up this morning with legal status, living and working here with official permission. They'll go to bed as undocumented immigrants facing deportation.
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Aaron Reichlin-Melnick @reichlinmelnick.bsky.social · 19/05/2025
🚨🚨🚨 The Supreme Court has just allowed Trump to strip as many as 350,000 people of legal status, effectively IMMEDIATELY. Every Venezuelan granted TPS through the July 31, 2023 designation has been rendered undocumented as of now, significantly increasing the undocumented population.
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Mirja Nicolas @privilegienschreck.bsky.social · 19/05/2025
The BMJ has published our response to the opinion piece by Miller et al.. “The solution that Miller et al. propose—the interpretation of ME/CFS as "biopsychosocial"—is in fact itself a major burden for ME/CFS sufferers.“ Biopsychosocial approaches to ME/CFS provide neither a cure nor hope. 1/
bmj.com
Biopsychosocial approaches to ME/CFS provide neither a cure nor hope
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It's ME(Jaime) @exceedhergrasp1.bsky.social · 20/05/2025
I am so sorry to say that Walker Storz, a person with severe ME, has passed away. Walker was an essayist, a poet, a musician, and someone I chatted with many times via email. A beautiful essay he wrote in 2022: www.todaysamericancatholic.org/2022/05/mere... May his memory be a blessing.
todaysamericancatholic.org
Mere Survival: Notes on an Enduring Illness by Walker Storz - Today's American Catholic
"It is unnerving to realize how quickly one can adapt to this, to accept sleepwalking rapidly through highlight reels of weeks, then months, then years."
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Adam @abrokenbattery.bsky.social · 20/05/2025
#MECFSAwarenessMonth – Day 20 2018: Emma Shorter tells the Scottish Parliament how Graded Exercise Therapy left her needing a wheelchair. Prof. Jonathan Edwards submits evidence saying patients were vilified but they were right — the science was poor quality.
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Brian Hughes @bmhughes.bsky.social · 14/05/2025
It is sad to see @bmj.com platforming quack therapies in 2025 The mind-over-matter approach to #MECFS has been debunked for years, but a cadre of psych devotees in the UK persist in peddling evidence-free miracle cures Pure and utter pseudoscience #pwME #LongCovid @georgemonbiot.bsky.social
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