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So much ignorance and confusion in that thread. The bit that worries me most is the references to TPN. I'm in UK and listen to US patients with...
I think safe lists are incredibly important and this is where we need good local groups because they will be able to keep up with rapidly changing...
For me it is a matter of putting unequivocally on record that I absolutely Do NOT consent to any appointment, consult, treatment or anything else...
My thought there is that it makes a great deal of sense to argue for ME safety officers in every hospital, and also for docs to be aware of...
I love the idea of someone there to monitor safety, yes I completely agree, that should be looked at. But who where would it fit in the system?...
Someone has helpfully suggested an alert for notes consisting of a red stop sign and ‘M.E. Biomedical approach only’ maybe ‘consent limitation’...
agreed. But just because the NHS has fallen apart doesnt mean we dont attempt to get safe health care to as many ME patients as possible,I would...
Good point about notes - I think in the UK we have the right to have a copy, and can at least make complaints afterwards. Interesting that this...
The doctor is not refusing to treat. The patient is not consenting to be treated by a doctor who is not safe to treat someone with ME because they...
Well they had better suck it up because the matter of life or death, or risk of lasting deterioration may be meaningless to the tired paramedic...
Why? If you have very severe ME or even Severe ME then there is a risk to life - if you go in urgently with dehydration, malnutrition, bring seen...
There is a free downloadable template Limitation of Consent with Notes kindly provided by Valerie Eliot Smith on https://valerieeliotsmith.com. It...
but they are assuming distress might cause fibromyalgia, in fact a change in the brain for example caused by infection, could give rise to anxiety...
With the high level of misdiagnosis and lack of recognition of PEM no wonder they can argue some find GET helpful.
And surely we still dont have enough studies on the progression of ME generally, do we even know if there are remission relapse phases and gradual...
What do they mean by PEM? They are not on planet Earth here surely.
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