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I’ve shared this before but I think it is relevant in this thread https://www.politico.com/newsletters/politico-pulse/2024/04/29/shooting-for-the-moon-is-getting-harder-00154868 “Shooting for the moon is getting harder - Politico US” 29 April 2024 CONGRESS PULLS BACK $$ — President Joe Biden’s...

Thanks for the really interesting and well-thought reponses Kitty and Jonathan. As for that quote you literally made me laugh out loud even though I’ve been non-verbal for months. Thanks for that I needed it :)

I often hear the claim that the reason ME/CFS is neglected psychologised etc. is that we don’t have a biomarker for the disease. In my opinion, it is a possibility that we have a biomarker within the next decade, even though it might only be usable in specialist laboratories. How do you think...

Republicans blocking major sources of funding to “Cancer Moonshot” https://www.politico.com/news/2024/04/29/congress-is-killing-bidens-cancer-moonshot-00154718

Atleast in my personal illness experience, when completely bedridden, no sound or light input, only liquid food etc. No confounding factors. Sometimes simply thinking about a stressful thought, or thinking about something that takes a lotta energy (like solving a math problem in my head) could...

I think any model that explains cognitive PEM could explain sensory hypersensitivity through that same framework.

Yes, criteria for a plausible model becomes a whole lot more difficult if you consider the fact ME/CFS could be a collection of similar or related diseases, with differing or semi-related mechanisms. It seems that current evidence suggests that the immune abnormalities present differently in...

Another thing is the model needs to be able to explain how some people within the same disease category, can live a near normal life, while others are bedridden, unable to speak, unable to move etc.

I love the idea. Just as a thought, would a theory be false if it assumed we needed a trigger that encompasses immune activation from viral/bacterial/fungal trigger? A portion of ME/CFS patients report to get the illness from psychological or physical stress. However, could we hypothesise that...

I wonder if trying to get Nath and Walitt to attend these kind of things would help them “get it” or if it is already a “lost cause”.

Is it a reply to criticisms they have faced which they judge as “unfair”, or are they brainwashed by the narrative that ME organisations are militant and trying to “pacify” them?

have they ever seen/read about someone with very severe ME. This just makes me sad :(

Hi, I couldn’t find a general thread to post this so I’m making a new thread. A small but in my opinion cool way to increase advoacy, an initiative from my girlfriend: My girlfriend is the best. Organising a screening of Unrest at the university I had to drop out of due to severe ME.

I know they took it from a patient’s quote but the “life back” headline bothers me a little, atleast seems to me to make the assumption people with long covid don’t have a life. Of course I’m typing this while bedridden and socially isolated, but I would find it insulting if I was told I “didn’t...

Edit: Full title of trial, led by Leicester University, UK: A phase IIa double blind, randomised placebo-controlled trial of Tocilizumab to investigate the effect on health-related quality of life in adults with Long COVID and persistent inflammation (PHOSP-I) _____________ UK BBC: Long Covid...

That is really cool I hope it goes well :) This is probably not what you’re looking for but I read someone’s testimony on pheonix rising a month or so ago who went through the lightning process. In case it is of any use to you...

I remember reading quite a few “Functional Somatic Syndrome” studies funded by the DOD which included ME/CFS. Happy they are now funding the biomedical route.

I can’t find anything about a phase 1 trial? Can they go straight to phase 2, is that a thing?

This project is supported by The Assistant Secretary of Defense for Health Affairs endorsed by the Department of Defense, in the amount of $499,200 for the planning phase with an option to execute the $12,6 million clinical trial after the planning phase has concluded, through the Peer Reviewed...

Yeah this place here is really my safespace. Thank you all for all the effort you make in moderating and keeping it so :)