Search results

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 desperate enough to contribute to the cost of tests. For example, I gather Prusty's suggested biomarker tests will be available shortly in one of the private...

Posts moved from UK: DecodeME recruitment open (online questionnaire, postal spit kit), 12pm 12th Sept 2022 I think they need to scale up the decode project and collect blood samples, then run a set of tests to look for as many as possible of the potential biomarkers different researchers have...

I really think we need to absolutely stop all fundraising for research into ME, stop participating, and stop spreading calls for donations and participation on social media UNLESS the research is focussed on properly checking out one of the already known potential biomarkers - whether it's...

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 gaslighting in a situation where the overwhelming biomedical evidence and near total lack of patient consent for psych approach are facts on the ground...

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 happier and healthier working, (ignoring the fact almost everyone wants to work) so in they went, made thousands of job applications, with the staff...

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 is usually seen a) as the derogatory name for the disease, so an inclusivity issue, b) at least in the UK it looks out if date and silly,and usually...

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 something psychiatric or the disease itself is seen as psychiatric. The CQC have ensuring the provision of adequate nutrition in the NHS in their...

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 or thoughts to some of these questions? For me the main issue is that biopsychosocial model is foisted on patients in clinical settings without our...

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 provide it for even a tiny number of those in the UK with ME and LC.

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 real not psychogenic, (and is re-issued via review appt every 2-3 yrs, as this is required by DWP), this letter with best and latest advice on how to...

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, is reduced automatically by two thirds of the time being given to absolute nonsense, either directed verbally at the patient or going on in the...

I have problems with several of these items. Find a stable baseline before trying to increase your activities. This is ambiguous. Is it suggesting that such a thing as a stable baseline can not only be found but that it stays stable, and that once found it's OK to start trying to increase -...

(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. I think this is dangerous and misleading because it completely fails to communicate that this is a safety issue.

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, so disregarded. I might try it again now they have done more work on it. I dont have an apple watch but would like to try one at some point. Ive found...

We need to keep using 'safety' language. We Pace for safety reasons. We prevent PEM for safety reasons. It needs directly addressing rather than everyone tiptoing around as though the issue doesn't matter.