Tessa

Immunological and Antigenic Signatures Associated with Chronic Illnesses after COVID-19 Vaccination COVID-19 vaccines have prevented millions of COVID-19 deaths. Yet, a small fraction of the population reports a chronic debilitating condition after COVID-19 vaccination, often referred to as post- va...

www.medrxiv.org/content/10.1...

Finally we are getting some recognition from scientists - vaccines can cause ME. Now we need to learn how to talk about this productively.

Leisk's Born Free gargantuan, barely intelligible, ever changing 'protocol' has made many people I know significantly worse for trying it. Please, please be wary of Born Free and the ego of its creator.

ME patients are some of the most vulnerable, sick people in the world due to total lack of treatment and proper diagnosis. Because we as a patient group as so desperate, and so extremely ill, we are very susceptible to being taken advantage of.

Leisk is not a doctor, nor as I understand it does he have any relevant qualifications as a scientific researcher. Why is he now dressing up as one?

NIH research paper in 2055: Shockingly, many people with Long Covid instigated ME have not miraculously recovered. More breaking news at 11.

Truly ground breaking research here from the NIH, just five years into the pandemic 💀

A screenshot of the article with the text: Katiana Mekka, a 26-year-old Long COVID patient from Greece, says education is especially needed outside the U.S. Last fall, she says, she was involuntarily committed to a psychiatric ward and held for three days, until she passed a thorough screening test for mental-health disorders. The ordeal worsened her already severe illness, leaving her virtually unable to eat, move, or talk for days after. "These illnesses are so mistreated and misdiagnosed," Mekka says, adding that so few doctors in Greece know about Long COVID that she has been forced to seek virtual support from specialists in other countries. "The patients that I know, we all have so much will to live and so many dreams. This is not a mental issue. We have severe symptoms."

Despite being severely unwell @katiamek.bsky.social spent her precious energy to speak out about this negligent treatment she’s been through in an effort to stop others experiencing the same. time.com/7206080/long...

I have friends in their 20s and 30s organising assisted dying for themselves this year. In what other chronic illness does this happen?

Those with Severe ME have no quality of life whatsoever. It is suffering beyond what a healthy person, or even someone with moderate ME can even begin to comprehend. Please, help us access experimental treatments. We cannot wait decades.

Severe ME is worse than a terminal illness. The prospect of existing in a state of 'living death' for decades is far worse than the prospect of dying prematurely.

This is excellent, we desperately need everything that is listed here. Ideally I would also like to see something implemented similar to the Right to Try in the US, allowing pw Severe ME to trial experimental drugs and therapies.

📢 Today @karenlhargrave.bsky.social and @binitakane.bsky.social will be representing #ThereForME on the Task & Finish group for the new delivery plan for ME.

Today's #ThereForME blog outlines six things they'll be looking out for as the delivery plan is finalised.

www.thereforme.uk/p/a-delivery...

using novel techniques and machine learning to identify individual disease patterns for personal use, as well as broader subtypes, with an ultimate aim being to find therapeutic targets for drug repurposing and development.

The testing comes at an expense which many of us will not be able to afford - but if you can afford to take part, please do consider it - this is the most comprehensive testing that has ever been carried out on ME blood -

31 Marker Panel - ME/CFS and Long COVID Medical testing at the cutting edge of science, accessible to all.

They aren't on bluesky yet but you can find them @amaticahealth over on Twitter or visit their website directly here:

amaticahealth.com/pages/31-mar...

Amatica Health in London are undertaking groundbreaking, patient-led research into ME blood (across a spectrum from mild to very severe), testing a huge range of 31 markers, in order to understand what drives different disease subtypes in ME and Long Covid.

As a person with ME I’m sick of the notion that I should just accept progress is slow.

We need radical and dynamic leadership from our charities and supporters. We need allies to fight for us relentlessly and work collaboratively to change the reality we live every day.

Sign the Petition ME Association Chair Neil Riley must step down

In PEM from advocacy last few weeks but just coming on to share this follow up letter and petition to ME Association calling for accountability and action.

www.change.org/p/me-associa...

my amazing friends ❤️ so lucky to have you

Next Monday, @tessapinto.bsky.social’s friends are watching Unrest to understand more about ME/CFS and raise awareness of the condition that’s left our friend unable to move, stand, or live without extreme pain for over a year. Please feel free to (virtually) join us - Unrest is free on YouTube

A pretend polaroid shows Dr William Weir posing for a photo holding a #ThereForME Christmas card. The design shows two presents, one labelled "patient safety", the other "research". The photo is labelled "1".

This second image displays Dr Weir's handwritten message. It reads “Best wishes for Christmas to everyone with ME or Long Covid. You all deserve excellent and appropriate treatment, with a full understanding of its causes. William Weir”

Dec 1: It's Dr William Weir, who has worked with and supported patients with ME for decades.

His message: “Best wishes for Christmas to everyone with ME or Long Covid. You all deserve excellent and appropriate treatment, with a full understanding of its causes. William Weir”

im so sorry ❤️ yes i'm similar. grateful to be in a position where i can stand for a very short period now with a frame, but the nerve damage is clearly pretty severe and i don't know how we fix that yet. i used to be an avid rock climber and runner so losing mobility like this is pretty brutal!

so thankful for drs like dr weir. the world would be a much, much better place if they were all like him. he helped save my life in 2023, i wish him the happiest christmas

Proud to be an ambassador for #ThereforME. This campaign was launched earlier in the year on BBC Breakfast. It brings together 14 main Long Covid and ME charities. The team are lobbying hard for change. Please support and follow;

youtu.be/7u40KIuz8Y4?...

im sorry. im in the same boat as you. i've been trying stand and walk a few steps after 1.5 yrs of bedbound. i have drop foot in both feet from nerve damage. my dream atm is to be able to stand and use a commode indendependently, but the nerve damage has really fucked me up

Maeve Boothby O’Neill died because of a discredited view of ME. How was this allowed to happen? | George Monbiot Chronic fatigue syndrome is as physiological as a broken leg. ​We must learn all we can from this tragic case, says Guardian columnist George Monbiot

This story is one of the most disturbing I've ever covered. It's about how the views of a deeply weird ideological sect affected science, medicine and the media, with devastating impacts on patients. Please read and pass on. This horror has to stop. www.theguardian.com/commentisfre...

I have to say as well - a big factor in deciding to end my own life would be impact that this would have on my partner, to allow him to live a normal life again. I love him so much that I don't want him to spend the rest of his life caring for me. And I think that is a valid feeling to have.

Questions of life and death are complex and messy. Let’s admit the assisted dying debate is too | Frances Ryan Campaigners on both sides dub the bill ‘a matter of conscience’ – but profound ethical issues can’t be reduced to right v wrong, says Guardian columnist Frances Ryan

We've seen in Canada that this can be a slippery slope, and in her latest column, Frances Ryan has warned of the dangers of coercion, an issue raised by more than 3400 healthcare workers: www.theguardian.com/commentisfre...

i completely agree frances, thank you for raising this issue and continuing to be such a voice of reason amidst all this