TamaraDNomad

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

No entiendo por qué

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

A lo mejor deberías tú leer más.

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

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

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

Inside My Illness: ME & Long Covid Q&A YouTube video by Vlad Vexler Chat

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...

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

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.

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

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."

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.

"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

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

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...

You are lovely 💓

Thank you for the support, the corrections, the additions and the love!!!

Thank you for your help! I just want it to be useful so I’m glad is helping you already 🫂

Oh I see thank you!!

If you guide me to the post I will definitely check it and include it. Thank you so much for new suggestions!!!

Thank you! Great suggestion!!

Thank you so much! Yes I thought it would be useful seeing it all in one very visual resource

Unsupported client – Canva Unsupported client – Canva

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...

That’s an amazing tip! I’m trying to do a guide with products that people recommend and I’ll definitely include that tip. And everyone should feel like this, why would I want my fellow ME patients to not be able to afford things even if I can’t? Happy for you Belasco

Thank you! You don’t need to justify yourself, even if you paid the half price everyone should be very happy that you could improve your quality of life through that ❤️‍🩹

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

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

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.

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...

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...

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

What “back to work” looks like for some of us severely disabled from long COVID ❤️

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

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