NHS England - E-learning Modules on ME/CFS

[Jonathan Edwards]

Until we get rid of the perception that all we need is rehab, I think this document spelling out the practical care is necessary.

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.

 

[hotblack]

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.

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.

 

[Trish]

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.

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?

 

[hotblack]

News of the module has been posted by AfME who say “We’ve heard some early feedback that this is a positive improvement on previous versions. We are currently reviewing the updated module in detail and will continue to share any feedback or concerns.” https://www.actionforme.org.uk/nhs-updated-severe-me-module/

 

[Jonathan Edwards]

Why would they guffaw at it?

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.

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?

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.

 

[hotblack]

As far as doctors go it is just a joke. I don't know if other diseases have learning modules like this

What format do you think would be best for getting to as many healthcare professionals as possible?

 

[obeat]

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.

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.

 

[MrMagoo]

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”

 

[Jonathan Edwards]

So why can't we get the charities in the UK to understand this?

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.

 

[Jonathan Edwards]

The real irony is that while AfME has been spectacularly successful in putting its weight behind DecodeME it is also joining forces with an organisation that deals in make-believe called the Overlapping Illness Alliance.

 

[Kitty]

If they don't want to get behind them, it would be interesting to know what the charities think is wrong with the factsheets...

 

[Jonathan Edwards]

If they don't want to get behind them, it would be interesting to know what the charities think is wrong with the factsheets...

They are too 'negative'.

 

[Trish]

i think charities like to produce their own information materials, not use other people's. There may be smaller charities, like local ME/CFS groups who would be glad to use them. But, as Jonathan Edwards says, many want something more upbeat and hopeful sounding.

My local clinic's materials are headed with stuff about focus on recovery, and the local patient group seem to be in lock step with them. I'm sure I should try to do something about that, but I'm going to have to leave it to others. I have no energy for another fruitless battle.

 

[Utsikt]

I don’t get the focus on positivity. ME/CFS is horrible. We’re being treated horribly. There are no treatments, and we don’t know anything about the pathology.

Even the cancer associations embrace «fuck cancer» and how there’s still so much to learn, even though they’ve started to move away from the «fighting cancer» narrative.

 

[Felis Catus]

There are no treatments, and we don’t know anything about the pathology.

Yeah but AfME provides a private healthcare service

 

[hotblack]

Agree it’s mad. We all have hope. We wouldn’t do all this if we didn’t. What we don’t have is much tolerance for false hope or just lying to people.

I didn’t see the e-learning module as particularly upbeat!