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I didn't get that either, i just thought i'm mentally fried so i'm just gonna ignore that part (we already know she is full of it). I wonder if she is carrying the British be polite and defer to authority and exploiting it so she doesn't even have to make sense

Indeed, higher ground means a few people defied the consensus that researching ME/CFS would ruin their careers in some cases because they are personally affected by it. The NIH has much to answer for, stealing money for many years appropriated to ME/CFS research for a start...

PEM does not always show up within 24 hours, till the last few years i was typically going a few days, once a whole week

Thanks Thats very strange, the text had the correct twitter link but the link goes to the article, its now fixed and i moved it to the bottom of the post instead of the top. I'm not sure how i managed to screw that up. When you live in igloos without running water or electricity you grow up...

Copied to a new thread here: https://www.s4me.info/threads/jen-brea-comments-on-time-for-unrest-why-patients-with-me-are-demanding-justice-image-heavy.1824/

@_NathalieWright's withering @Independent piece lays bear the gaps in how #mecfs is viewed on either side of the pond and the vested interests that have contributed to the disability and death of millions...

How didn't i realize its the trailer, can i blame cognitive dysfunction :ill:

Yup, its already immortalized, though the video is not, hopefully someone has a backup copy

@Nathalie Wright Very well written, one of the best articles on ME/CFS i can remember reading :) I don't think the internet archive is under the jurisdiction of the NHS :D

I look "forward" to the recommended treatment, antidepressants and other neuroleptics i will fathom...

The point was not to get accurate data, it was to "confirm" their belief that people with ME/CFS are mentally ill. The truth would present a problem to their worldview. Subjective data is easier to massage then precise data.

Revisionist history... Is it on the internet archive i wonder?

Hugs are irrelevant, resistance is futile :borg: (Who knew the Borg smilie would come in handy)

I voted "Drug treatments aimed at symptom relief" because this is what we all want, a treatment or cure. That said i don't understand how money spent on it will lead to them. What is their plan if this option is what they pursue (though it has a low number of votes).

This should be posted as a response article :)

I can't read all the above text and i know nothing about them but everything is discussed on social media by somebody, so whats to stop them exploiting this to avoid anything they don't want to investigate?

Laudable goal, not sure if it can be done but if no one tries then we can't succeed and more resources into research will definitely mean more progress.

I sincerely hope so

@ Wonko You do make a lot of sense, though it sounds like your seizures are a comorbid condition (as well as the TIAs) I do wish i could be connected during an episode but i'd rather never have one again (if that were an option)

I've never been hooked up to an EEG during an episode so no idea if its an actual seizure