MrMagoo
Senior Member (Voting Rights)
That boilerplate is on everything thesedays.
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United Kingdom: Action for ME (AfME) news
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Nightsong
Senior Member (Voting Rights)
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Jonathan Edwards
Senior Member (Voting Rights)
I am wary about the idea of a charity like AfME developing 'healthcare services'. We do not know what healthcare to provide. It seems they do not know what to provide because any professional will do. It is all very well being dynamic but if you have no understanding of the evidence base for various modalities (i.e. mostly zero) the outcome seems pretty uncertain.
BrightCandle
Senior Member (Voting Rights)
If they limit to diagnosis and correct information on the disease and how to manage with pacing they will drastically increase the quality of healthcare available to patients. This is really the value of these roles at the moment. Much of the country is a desert for basic diagnosis and correct services, most patients are surrounded by harm and having to hide from healthcare of all types completely unable to even get the code in their records or ever have their own thoughts on the likely cause validated in anyway.
Jonathan Edwards
Senior Member (Voting Rights)
But what guarantee is there of any of that?
If diagnosis is wanted then you want a physician, and probably not a GP with an interest wantng a bit of cash on the side. And even the choice of physicians in the past by some charities has been less than ideal.
The correct information about the disease is pretty scanty and can be covered by a simple fact sheet. If you want to impart more nuance and perspective then you need a physicina with a good grasp of evidence quality. Not so many of those around it seems.
And I suspect that all we know about pacing is what can be put in an information sheet. Physios almost inevitably seem to convert that to pacing up.
Is it helpful to have a code in records - i don't know.
Should people's own thoughts on cause be validated? We don't know the cause so that seems unlikely.
Sly Saint
Senior Member (Voting Rights)
and the patient and physician 'information' literature provided also. There is also a strong chance of someone who is affiliated to BACME or 'informed' by their previous 'teachings' being appointed.
MrMagoo
Senior Member (Voting Rights)
This 100%
I got a diagnosis in a well-written report by a GP via AfME years faster than the NHS could manage, very useful in getting benefits.
Beyond that I’m not sure what they should offer.
I mean actually years, I was on the waiting list to be seen by NHS ME/CFS for 3 years, to get a “comparable” letter with diagnosis was 5 years.
Felis Catus
Senior Member (Voting Rights)
I was also diagnosed by a GP via AfME and got a good letter which served me well for what I needed it for.
My local service doesn't have a doctor in the team and they send you a 10 pages long form to fill in if you want to get their therapy-based support. I don't know what kind of letters they write and how are those perceived. I didn't have much luck with getting letters or good letters from the NHS.
My local service doesn't have a doctor in the team and they send you a 10 pages long form to fill in if you want to get their therapy-based support. I don't know what kind of letters they write and how are those perceived. I didn't have much luck with getting letters or good letters from the NHS.