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.

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

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.

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 -

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...

my amazing friends ❤️ so lucky to have you

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