NHS England - E-learning Modules on ME/CFS

obeat said:
Until we get rid of the perception that all we need is rehab, I think this document spelling out the practical care is necessary.
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In a way I agree but if it is presented in a way that makes the rehab friendly people raise an eyebrow and move on I see it as possibly counterproductive. I can imagine the members of my old department looking at this together and guffawing. "Multisystem disease, oh yeah!" One or two would keep silent but group think is what dominates and what needs addressing.

And then there is the irony that this is written by a rehabilitationist invited in to be medical adviser to a charity.
 
Trish said:
Of course I noticed the points hotblack rightly raises, but I don't think we should damn it altogether because it's not perfect. I would love my local health authority to act to insure the sort of provision described is available and all local doctors and hospitals are properly aware of our needs. That would be a huge step forward.
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Agree. I think there is a lot to welcome here and hope I made that clear in my posts. If this were tweaked and part of wider action it would be very welcome.
 
Jonathan Edwards said:
In a way I agree but if it is presented in a way that makes the rehab friendly people raise an eyebrow and move on I see it as possibly counterproductive. I can imagine the members of my old department looking at this together and guffawing. "Multisystem disease, oh yeah!" One or two would keep silent but group think is what dominates and what needs addressing.

And then there is the irony that this is written by a rehabilitationist invited in to be medical adviser to a charity.
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Why would they guffaw at it?

I find the whole setup of elearning modules with arrows to follow and pictures and multiple choice questions rather childish as a way of presenting information to experienced professionals. Why not a well reasoned article with a clear summary of key points?

But what exactly would get through to medical professionals, and to funders and managers who decide where the money will be spent?
 
Trish said:
Why would they guffaw at it?
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Because 'multisystem disease' for ME/CFS is not only drivel but quite clearly, to physicians who have been around in training for ten years or in practice for another twenty, drivel driven by patient advocacy groups and a research twitterati who have picked up the mantra because it fits with current politically correct ideas about humoring patients - to be honest.

It has been perfectly clear to me throughout my ten years of interest in ME/CFS that it is not a 'multisystem disease' in any meaningful sense (the term means a disease with pathology in multiple organs and in ME/CFS we haven't found any anywhere). The same will be perfectly clear to my colleagues. The ME/CFS community , with its advocacy groups and hanger on researchers, most of which have been pretty second rate until recently, has lived in this goldfish bowl of make-believe science. It is the continuation of what Wessely called the malign influence if the MEA.

The answer to the Alistair Miller's of the RCP and the BPS people is not to dress ME/CFS up in all this politically correct jargon about person centred treatment, pseudobiology and dodgy pharmacology. It is to present the problem in plain English in the way we have done in the Fact Sheets.

Trish said:
I find the whole setup of elearning modules with arrows to follow and pictures and multiple choice questions rather childish as a way of presenting information to experienced professionals. Why not a well reasoned article with a clear summary of key points?
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Absolutely agree. If the main intended audience are people with an educational age of 8 (which seems to be the rule for patient information for some reason) then it is time the NHS employed some people with a bit more nous. As far as doctors go it is just a joke. I don't know if other diseases have learning modules like this but I find it hard to believe nay doctor would take this stuff seriously. And of course for ME/CFS it is guaranteed that they won't. And that they will steer well clear of a career in the field.
 
Jonathan Edwards said:
Because 'multisystem disease' for ME/CFS is not only drivel but quite clearly, to physicians who have been around in training for ten years or in practice for another twenty, drivel driven by patient advocacy groups and a research twitterati who have picked up the mantra because it fits with current politically correct ideas about humoring patients - to be honest.
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So why can't we get the charities in the UK to understand this and get rid of multi system?

In a couple of letters I wrote recently I simply quoted from the DecodeME paper and acknowledged that. It encapsulated all I needed to say.
 
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Can we stop referring to it in medical terms?

“ME is a mysterious, intriguing phenomenon, too complex for even cutting edge medics to begin to understand, much less comprehend”
 
obeat said:
So why can't we get the charities in the UK to understand this?
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I don't know really. But one factor is that charities are there to do 'good works' and doing good works means being positive. What does doing good works mean? All together now.

Being positive.

Not questioning. Not rocking boats. And the ghost of Melvin Ramsay hangs in the air like Jacob Marley did, if more benignly.
 
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