NHS educational module on ME/CFS
I give it 2.5 out of 5 stars.
NHS England has released an educational module on ME/CFS.
You can access a copy of the module on the ME Association website .
You can also sign up as a patient/carer to do the proper NHS version of the module, but the sign-up process is unnecessarily complex and annoying.
The module is intended for anyone with an interest in ME/CFS, not just clinicians. I was involved in developing the module as a person with lived experience, but I don’t feel my input had much effect on the final product.
Is the module any good? The best thing about it is a short video in which a woman with ME describes struggling to live with the illness while being dismissed by doctors, who insisted there was nothing wrong with her. It’s a story many of us can relate to. I’m glad that now, hopefully, some doctors will hear it.
The module is short and light on detail. As some people mentioned on Twitter, it gets some things wrong. There is a bizarre, evidence-free suggestion that ME symptoms may be caused by a poor diet with caffeine and sugary drinks. I feel that the section on stigma does such a poor job of explaining and describing the stigma faced by people with ME that it amounts to misinformation; it would be better to say nothing about stigma, than to get it this wrong.
The module mentions PEM, but does not explain the dangers of over-exertion. This is a big, glaring, and dangerous omission.
There is no mention of the plight of people with very severe ME in hospital. It’s true that two more modules are planned, and severe ME/CFS will be covered in the third module. However, given that right now we know of several patients who are being subjected to horrific abuse by hospital staff who do not understand or recognise their needs, it is disappointing that this issue wasn’t put front and centre in the first module.
My overall verdict: given the current very low level of knowledge among clinicians and the general public, this module is an improvement. But it’s still a lot less than we deserve.
Thanks for your efforts to try to make this module worthwhile. Unfortunately it sounds like the final content was determined by people who have little to no understanding of the disease — as is almost always the case with ME 😔
I'd like to give a comparative beginner's (<20 years with ME) comments, compared to most of you experts, and I'm trying to *remind myself* that the baseline is "No NHS training available at all".
I think it is:
Good for: GPs, Healthcare Workers and assistants, carers, consultants and specialists whose specialist knowledge is NOT ME/CFS.
Not intended to educate: ME/CFS Specialists, and I would include many of us sufferers as unpaid specialists, who almost certainly know considerably more about our condition than their GPs.
It tries to address stigma, and acknowledges that patients have historically not been believed, or told that it is "all in their mind".
It includes an excellent audio recital from a real patient shows how current approaches leave patients feeling.
It states clearly that Graded Exercise Therapy has proven damaging, leading to PEM rather than improvement, that pacing is initial advice and strongly asserts that *only ME/CFS specialists are qualified and capable of choosing best course of action for any individual*.
It doesn't cover the life cycle and phases that patients go through, and severe case outcomes at all (but hear these may be coming later).
So on that basis, I think it's a big leap forward and first line in the sand. I WILL recommend it to my GP if she's not aware of it, or suggests anything that conflicts with its advice.
I'm hoping not to be scalded too much by viewing this as a basic "starting point" (and yes, I agree that it is 10 years too late), as I think I'm already heading for a crash today 🙄.