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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 ME/POTS/MCAS/EDS etc and they do seem to have far, far more tests and treatments going on than anything anyone can access in the UK. I've been quite...

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 locums and gps who do very part time hours. I think it is very important that doctors become familiar with the reality that patients can, and may...

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 involving a doctor, nurse, OT, carer etc etc who regards ME as psychological. I only consent to a biomedical approach to ME. If I am in a consult with...

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 limitations of consent / biomedical approach only flags on ME patients records. My concern is that it could work well in Cornwall where there is a...

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? This is a safety issue, but there has not yet, to my understanding been a successful court case establishing damages for harm done by unsafe ME doctors...

Someone has helpfully suggested an alert for notes consisting of a red stop sign and ‘M.E. Biomedical approach only’ maybe ‘consent limitation’ beneath, or something similar.

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 suggest it makes it more urgent, not less urgent.

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 has been interpreted as ‘making demands’ about which clinicians will treat them. Not the case I think, as they are willing to see anyone complying...

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 need to ensure they dont get made much worse! This is absolutely the patient’s right to decide, to give informed consent. There is no reason in an...

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 but it matters a great deal to the patient in question. And in a collapsed NHS the need to save wasted trips to hospitals becomes very much MORE urgent...

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 by an unsafe doctor starts the cascade of misdiagnosis and PEM triggering that can lead to death, thats a pretty good reason to my mind to not risk...

There is a free downloadable template Limitation of Consent with Notes kindly provided by Valerie Eliot Smith on https://valerieeliotsmith.com. It has been used as well by people with Long Covid, and has been adapted slightly here and there according to individual needs and preferences, but the...

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 and unrelated later pain/inflammation, in which case addressing the distress will not change the outcome

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 deterioration later on as often happens in MS?

What do they mean by PEM? They are not on planet Earth here surely.