TamaraDNomad
LightNews LightNews
banner
tamaradnomad.bsky.social
TamaraDNomad
@tamaradnomad.bsky.social
210 followers 130 following 160 posts
Disabled advocate - #Interiordesigner - #Anthropology student - Multi local - #SWYer - #Fibro + #MECFS - 1 of the #MillionsMissing + #Disabledguerrera

https://linktr.ee/jailedtiger
Posts Replies Media Videos
Pinned
tamaradnomad.bsky.social
TamaraDNomad @tamaradnomad.bsky.social · Aug 18
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...
Unsupported client – Canva
Unsupported client – Canva
www.canva.com
tamaradnomad.bsky.social
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
October 5, 2025 at 7:19 PM
Reposted by TamaraDNomad
vladvexler.bsky.social
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...
Inside My Illness: ME & Long Covid Q&A
YouTube video by Vlad Vexler Chat
www.youtube.com
October 5, 2025 at 4:23 PM
Reposted by TamaraDNomad
tomkindlon.bsky.social
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.
September 26, 2025 at 8:24 PM
Reposted by TamaraDNomad
exceedhergrasp1.bsky.social
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."
September 26, 2025 at 9:02 PM
Reposted by TamaraDNomad
tomkindlon.bsky.social
"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.
September 27, 2025 at 12:52 AM
tamaradnomad.bsky.social
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...
Firma la petición
Soy Discapacitada, No una Criminal: Nuestra Lucha por el Derecho a Examinarnos
www.change.org
September 22, 2025 at 4:33 PM
tamaradnomad.bsky.social
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...
Unsupported client – Canva
Unsupported client – Canva
www.canva.com
August 18, 2025 at 10:09 PM
tamaradnomad.bsky.social
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
August 16, 2025 at 5:56 PM
Reposted by TamaraDNomad
swastrosarah.bsky.social
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
July 31, 2025 at 6:45 AM
Reposted by TamaraDNomad
me-cfs.bsky.social
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
July 31, 2025 at 12:40 PM
Reposted by TamaraDNomad
isabelrb.bsky.social
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...
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...
tinyurl.com
June 30, 2025 at 11:47 AM
Reposted by TamaraDNomad
vashetc.bsky.social
What “back to work” looks like for some of us severely disabled from long COVID ❤️
Brown skin woman on iPad in bed. There’s an iv pole in the background Brown skin woman on iPad in bed. There’s an iv pole in the background and tubes connected to her arm
June 30, 2025 at 6:27 PM
Reposted by TamaraDNomad
tamaradnomad.bsky.social
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
June 30, 2025 at 8:07 PM
tamaradnomad.bsky.social
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
June 30, 2025 at 8:07 PM
tamaradnomad.bsky.social
Physically and emotionally destroyed. #MECFS is reducing me to ashes. Don’t feel able to do anything #pwME #MillionsMissing
May 20, 2025 at 6:21 PM
Reposted by TamaraDNomad
reichlinmelnick.bsky.social
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.
chrisgeidner.bsky.social Chris Geidner @chrisgeidner.bsky.social · May 19
BREAKING: SCOTUS allows DHS to reinstate Sec. Kristi Noem's order ending Temporary Protected Status for many Venezuelans, but notes the decision does not address challenges to actions "purport[ing] to invalidate" related legal status, work authorization documents, etc., previously granted under TPS.
ORDER IN PENDING CASE 24A1059 NOEM, SEC., DHS, ET AL. V. NAT. TPS ALLIANCE, ET AL. The application for stay presented to Justice Kagan and by her referred to the Court is granted. The March 31, 2025 order entered by the United States District Court for the Northern District of California, case No. 3:25-cv-1766, is stayed pending the disposition of the appeal in the United States Court of Appeals for the Ninth Circuit and disposition of a petition for a writ of certiorari, if such a writ is timely sought. Should certiorari be denied, this stay shall terminate automatically. In the event certiorari is granted, the stay shall terminate upon the sending down of the judgment of this Court. This order is without prejudice to any challenge to Secretary Noem's February 3, 2025 vacatur notice insofar as it purports to invalidate EADs, Forms I-797, Notices of Action, and Forms I-94 issued with October 2, 2026 expiration dates. See 8 U. S. C. §1254a(d)(3). Justice Jackson would deny the application.
May 19, 2025 at 5:02 PM
Reposted by TamaraDNomad
reichlinmelnick.bsky.social
🚨🚨🚨 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.
mjsdc.bsky.social Mark Joseph Stern @mjsdc.bsky.social · May 19
NEW: The Supreme Court allows the Trump administration to resume its termination of Temporary Protected Status for Venezuelan migrants, staying a lower court decision that had halted the process. Only Justice Jackson notes her dissent.
ORDER IN PENDING CASE 24A1059 NOEM, SEC., DHS, ET AL. V. NAT. TPS ALLIANCE, ET AL. The application for stay presented to Justice Kagan and by her referred to the Court is granted. The March 31, 2025 order entered by the United States District Court for the Northern District of California, case No. 3:25-cv-1766, is stayed pending the disposition of the appeal in the United States Court of Appeals for the Ninth Circuit and disposition of a petition for a writ of certiorari, if such a writ is timely sought. Should certiorari be denied, this stay shall terminate automatically. In the event certiorari is granted, the stay shall terminate upon the sending down of the judgment of this Court. This order is without prejudice to any challenge to Secretary Noem's February 3, 2025 vacatur notice insofar as it purports to invalidate EADs, Forms I-797, Notices of Action, and Forms I-94 issued with October 2, 2026 expiration dates. See 8 U. S. C. §1254a(d)(3). Justice Jackson would deny the application.
May 19, 2025 at 4:58 PM
Reposted by TamaraDNomad
privilegienschreck.bsky.social
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/
Biopsychosocial approaches to ME/CFS provide neither a cure nor hope
www.bmj.com
May 19, 2025 at 1:50 PM
Reposted by TamaraDNomad
exceedhergrasp1.bsky.social
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.
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."
www.todaysamericancatholic.org
May 20, 2025 at 1:43 AM
Reposted by TamaraDNomad
abrokenbattery.bsky.social
#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.
May 20, 2025 at 7:07 AM
Reposted by TamaraDNomad
bmhughes.bsky.social
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
bmj.com The BMJ @bmj.com · May 14
Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) affects around 250 000 people in the UK.

Reframing beliefs about illness, along with specialist rehabilitation, can help recovery in people with severe ME/CFS, @paulgarnerwoof.bsky.social and colleagues
www.bmj.com/content/389/...
May 14, 2025 at 4:32 PM
Reposted by TamaraDNomad
chromatowski.bsky.social
Friends, please spread the word that e. is offering to match donations to MEAction, OMF or any c3 org that works on ME/CFS—and then her employer will also match that!

The employer match has a limit but hers does not 👀
eha.sh e. hashman @eha.sh · May 3
I've launched fundraisers, but I will also match donations to other ME-supporting 501(c)3's if you send me your donation receipts. I will *double-match* donations with my own donation + employer match.

#MEAction: meaction.funraise.org/fundraiser/e...
OMF: openmedicinefoundation.crowdchange.co/50084
General Campaign
meaction.funraise.org
May 14, 2025 at 5:45 PM
Reposted by TamaraDNomad
johnvsjonvsme.bsky.social
Hey 👋 @johncusack.bsky.social You’re a Jo(h)n on our radar 👀 thesicktimes.org/2025/03/31/t...
Will you look into #GreatestMEdicalScandal & help us bring #MillionsMissing back to safety (and life)?🙏🛟Learn more at johnvsjon.com #JohnVsJonVsME #MyalgicEncephalomyelitis #MEAwarenessMonth
A lifeguard safety MEme. At the top, “We need a whole team of lifeguards to sound the alarm” in black text. Below the top, “#GreatestMEdicalScandal #MillionsMissing #DisabilitySOS” in red text. On right side, “I nominate John Cusack for this” in red text. On left side, an image of John Cusack as a lifeguard holding a red and white safety floatation ring. The background is a photograph of an enormous ocean wave crashing near the shoreline. At the bottom, “#JohnVsJonVsME” in black text.
May 14, 2025 at 9:53 PM
Reposted by TamaraDNomad
diatoma.bsky.social
I’m sending out a @johnvsjonvsme.bsky.social #MillionsMissing #DisabilitySOS to health justice leaders #EndTB - doctors, authors, and advocates whose work I appreciate immensely: @joiamukherjee.bsky.social @mariasmilios.bsky.social @johngreensbluesky.bsky.social @vidyakrishnan.bsky.social (1/8)
Alt. Text: A lifeguard safety MEme. At the top, “We need a whole team of lifeguards to sound the alarm” in black text.  Below the top, “#GreatestMEdicalScandal #MillionsMissing #DisabilitySOS” in red text.  On right side, “I nominate Vidya Krishnan for this” in red text. On left side, an image of Vidya Krishnan as a lifeguard holding a red and white safety floatation ring.  The background is a photograph of an enormous ocean wave crashing near the shoreline.  At the bottom, “#JohnVsJonVsME” in black text. Alt. Text: A lifeguard safety MEme. At the top, “We need a whole team of lifeguards to sound the alarm” in black text.  Below the top, “#GreatestMEdicalScandal #MillionsMissing #DisabilitySOS” in red text.  On right side, “I nominate Joia Mukherjee for this” in red text. On left side, an image of Joia Mukherjee as a lifeguard holding a red and white safety floatation ring.  The background is a photograph of an enormous ocean wave crashing near the shoreline.  At the bottom, “#JohnVsJonVsME” in black text. Alt. Text: A lifeguard safety MEme. At the top, “We need a whole team of lifeguards to sound the alarm” in black text.  Below the top, “#GreatestMEdicalScandal #MillionsMissing #DisabilitySOS” in red text.  On right side, “I nominate John Green for this” in red text. On left side, an image of John Green as a lifeguard holding a red and white safety floatation ring.  The background is a photograph of an enormous ocean wave crashing near the shoreline.  At the bottom, “#JohnVsJonVsME” in black text. Alt. Text: A lifeguard safety MEme. At the top, “We need a whole team of lifeguards to sound the alarm” in black text.  Below the top, “#GreatestMEdicalScandal #MillionsMissing #DisabilitySOS” in red text.  On right side, “I nominate Maria Smilios for this” in red text. On left side, an image of Maria Smilios as a lifeguard holding a red and white safety floatation ring.  The background is a photograph of an enormous ocean wave crashing near the shoreline.  At the bottom, “#JohnVsJonVsME” in black text.
May 14, 2025 at 10:10 PM
Reposted by TamaraDNomad
putrinolab.bsky.social
Quite disheartening to return from 10 days working with some of the most important and relevant #MECFS and #LongCOVID researchers in the world and to read this drivel being allowed through from @bmj_latest. Let's be unambiguous about this: BMJ has

www.bmj.com/content/389/...

1/
Patients with severe ME/CFS need hope and expert multidisciplinary care
Reframing beliefs about illness, along with specialist rehabilitation, can help recovery in people with severe ME/CFS, write Alastair Miller, Fiona Symington, Paul Garner, and Maria Pedersen Myalgic...
www.bmj.com
May 15, 2025 at 8:34 AM