I hope enough shows up in the genetic data to justify very large future funding allocation for such next steps. I'm pretty sure pwME are...
Posts moved from UK: DecodeME recruitment open (online questionnaire, postal spit kit), 12pm 12th Sept 2022 I think they need to scale up the...
I really think we need to absolutely stop all fundraising for research into ME, stop participating, and stop spreading calls for donations and...
Possibly because in order for psychiatry to gain control of the patient and force GET, they need to change the diagnosis? Which is easily done -
. One of them seems to say that patients don't want a debate. Because entering into debate legitimises the continuing practice of medical...
They endlessly go round in circles don't they - a new initiative is supposed to 'get the message across' to disabled people they will be far...
Is it not obvious from all the other research to date that ME is far more complex than just inflammation?!
I managed to get the GMC to apologise last week for calling ME chronic fatigue syndrome in a document about medical education. I pointed out it...
There seems to be an ongoing problem of assisted nutrition being withheld in cases of Very Severe ME as the diagnosis is so often flipped into...
But we also need an acronym that we all consistently can use for biopsychosocial. What can we do on this forum? and does/can anyone add answers...
Sad that IVIG seems to be his suggested treatment, as it is impossibly expensive for almost everyone and I cannot imagine the NHS managing to...
I see from posts on fb a suggested action and care plan consisting of: diagnostic letter from a consultant which spells out that the disease is...
This comes down in part to our all being forced to accept biopsychosocial medical care without out consent. Every appt, brief as they already are,...
I have problems with several of these items. Find a stable baseline before trying to increase your activities. This is ambiguous. Is it...
(Just read it and would never pass it on to anyone) Whoever wrote this does not understand that anyone has ever deteriorated as a result of GET....
What happens if we write snail mail? Obviously slower but do they still reply?
Struck me as too vague and general to gather anything useful
Coming in three months after the last entry, I tried the Visible app in beta but it wasnt predicting anything for me, just recording some stuff,...
We need to keep using 'safety' language. We Pace for safety reasons. We prevent PEM for safety reasons. It needs directly addressing rather than...
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