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 🙄.
Apologies - I may have misunderstood the term "Pacing" described as "energy conservation or pacing". I thought it was purely about understanding your energy envelope, and trying your hardest (is that even possible?) to stay within it. Is there alternative interpretation that implies any pushing of goals?
I'm so glad I found this post and your writing on M.E and this 'training module'. I was bitterly disappointed in it myself as a 'voice of lived experience' who also felt thus module largely ignored most of what we said. I am conducting MA research in 2025 to create an alternative module; one led exclusively by patients with lived experience of M.E, using a creative health approach to address the shortcomings of this training for medical students...if anyone is interested in joining the project, please get in touch! 😃
Thanks. Good points re over exertion and omission of severe ME.
I would still like to see abnormal muscle fatigue cognitive fatigue used (more specific than “fatigue”) plus inability to repeat an action or activity. Trying leads to PEM collapse etc.
I thought the focus on overactive stress response dangerous as this maybe misunderstood or deliberately misused.
Not a new or emerging disease, but a neglected one.
Small point - Raggedy Anne illness is not a name I had heard of. As aimed at Brits not Americans better to not have at top of list of names.
Muchas gracias por intentar arrojar luz sobre ME con tus aportaciones, y siento mucho que la empatía y el rigor no se hayan puesto en el documento formativo.
Esto es algo a lo que desgraciadamente estamos muy acostumbrados los pacientes #ME
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 🙄.
Apologies - I may have misunderstood the term "Pacing" described as "energy conservation or pacing". I thought it was purely about understanding your energy envelope, and trying your hardest (is that even possible?) to stay within it. Is there alternative interpretation that implies any pushing of goals?
It’s a shame they have not listened to patient input. I think you are being pretty restrained and generous with your comments and star rating!
I'm so glad I found this post and your writing on M.E and this 'training module'. I was bitterly disappointed in it myself as a 'voice of lived experience' who also felt thus module largely ignored most of what we said. I am conducting MA research in 2025 to create an alternative module; one led exclusively by patients with lived experience of M.E, using a creative health approach to address the shortcomings of this training for medical students...if anyone is interested in joining the project, please get in touch! 😃
Thanks. Good points re over exertion and omission of severe ME.
I would still like to see abnormal muscle fatigue cognitive fatigue used (more specific than “fatigue”) plus inability to repeat an action or activity. Trying leads to PEM collapse etc.
I thought the focus on overactive stress response dangerous as this maybe misunderstood or deliberately misused.
Not a new or emerging disease, but a neglected one.
Small point - Raggedy Anne illness is not a name I had heard of. As aimed at Brits not Americans better to not have at top of list of names.
Muchas gracias por intentar arrojar luz sobre ME con tus aportaciones, y siento mucho que la empatía y el rigor no se hayan puesto en el documento formativo.
Esto es algo a lo que desgraciadamente estamos muy acostumbrados los pacientes #ME