NHS England Launches New E-learning Module on ME/CFS, 2024

Jonathan Edwards said:
The process for selection of those working in the three groups was fairly opaque. Something like fifty people I think were invited to join working groups, with the rheumatologist Ian Bruce having been made overall chair. I opted to join the research group rather than education. Maybe that was a mistake because we didn't get very far on the research side.

The basic problem is that if a government representative has to convene a working group or task force they go to the people who have been involved before. There are hardly any physicians involved now. This is why I cautioned Karen Hargrave about calling for a new tsk force - we have already had one and this is the result.
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The working group for the Attitudes and Education was pretty large.

The development of the three training modules has been done by David Strain alone and with no budget. It shows. I fed back a lot of issues with module 1. That could have been a lot better. A lot clearer, especially re PEM, wording etc.

I reviewed the draft of module 2 last weekend and I have multiple issues with it. It's with my colleagues for comments before I send over to David and DHSC shortly.

You get what you pay for. There was no funding available. And apart from asking the working group for feedback no involvement from the group in the development. How much time or resources David has to amend, improve etc I suspect limited.
 
It doesn't sound as though the modules should be allowed to stand. I don't think we need 'perfect', but something that does not explicitly state that people with PEM should not be told to exercise is not even 'good enough'.

I don't understand why David Strain was given the job, on his own. Why would you not have a panel of people, for example, a carer of someone with severe ME/CFS, a doctor with experience treating people with ME/CFS, an expert patient, an expert patient who is a doctor... How did this happen?

What can we do? Could contacting AfME be a way to improve the modules?

Joan Crawford said:
You get what you pay for. There was no funding available.
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Yes, although lots of us work for free, just because we want information to be accurate and helpful. There are good people who would have made a useful contribution to these training modules, and for free, if they had been asked.
 
Joan Crawford said:
You get what you pay for. There was no funding available.
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Like Hutan, I question the issue of funding. When I was an academic I spent many hours on a regular basis chairing education meetings on patient literature, refereeing grants and any number of other things free because they were part of my job to do free. If an academic physician takes on something like this there is no need to pay. And plenty of people are ready to sit on NICE guidelines committees without needing paying.

Hutan said:
Why would you not have a panel of people, for example, a carer of someone with severe ME/CFS, a doctor with experience treating people with ME/CFS, an expert patient, an expert patient who is a doctor...
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Maybe. But making all 'stakeholders' happy is maybe not the answer. I can think of doctors who have experience treating ME/CFS whose views would be very unhelpful. We don't want a section on micro clots. Expert patients often trot out the mantra their therapists have given them, and so on.

What it really boils down to is having something written by someone who really understands the problem, supported by others who understand who can point out ill-phrased or unbalanced text. What goes on here basically. And doesn't go on on committees and task forces.

I am not clear whether AfME has anything specific to do with this? Nevertheless, I am seeing Sonya next week and it was on my list.
 
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Jonathan Edwards said:
Like Hutan, I question the issue of funding. When I was an academic I spent many hours on a regular basis chairing education meetings on patient literature, refereeing grants and any number of other things free because they were part of my job to do free. If an academic physician takes on something like this there is need to pay. And plenty of people are ready to sit on NICE guidelines committees without needing paying.



Maybe. But making all 'stakeholders' happy is maybe not the answer. I can think of doctors who have experience treating ME/CFS whose views would be very unhelpful. We don't want a section on micro clots. Expert patients often trot out the mantra their therapists have given them, and so on.

What it really boils down to is having something written by someone who really understands the problem, supported by others who understand who can point out ill-phrased or unbalanced text. What goes on here basically. And doesn't go on on committees and task forces.

I am not clear whether AfME has anything specific to do with this? Nevertheless, I am seeing Sonya next week and it was on my list.
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Perhaps my comment re funding was unhelpful. I made it in the middle of the night.

"What it really boils down to is having something written by someone who really understands the problem, supported by others who understand who can point out ill-phrased or unbalanced text. What goes on here basically. And doesn't go on on committees and task forces."

This is the nub of the issue. I don't think David does understand. I and others have tsjen a lot of time giving feedback line by line. The more I reflect on it, once I receive by colleagues comments and sent back I will send back to David and DHSC. And also to Sonya/Charles S. This session really is not good enough.
 
Sorry of this is trite but it feels like the most useful training for now would simply be:

- Most of what you may have been taught or heard about ME is wrong
- Patients severity and symptoms will vary, trust them and what they tell you

It’s disheartening to hear how this process has been going but thank you to those trying to improve things.


Maybe I’d add a third point:
- There is no test or treatment for ME, you can’t make things better but you can make things worse
 
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hotblack said:
Sorry of this is trite but it feels like the most useful training for now would simply be:

- Most of what you may have been taught or heard about ME is wrong
- Patients severity and symptoms will vary, trust them and what they tell you

It’s disheartening to hear how this process has been going but thank you to those trying to improve things.


Maybe I’d add a third point:
- There is no test or treatment for ME, you can’t make things better but you can make things worse
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Hear, hear!
 
Jonathan Edwards said:
Maybe. But making all 'stakeholders' happy is maybe not the answer. I can think of doctors who have experience treating ME/CFS whose views would be very unhelpful. We don't want a section on micro clots. Expert patients often trot out the mantra their therapists have given them, and so on.
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Certainly, the answer is not making 'all stakeholders happy'. That was clear with the NICE ME/CFS guideline. But having people with a range of perspectives on the problem (including experience of severe ME/CFS) on a writing team goes some way to ensuring important things aren't missed. And/or listening carefully to wider feedback.

What happened as a result of your feedback on Module 1 @Joan Crawford?
 
Joan Crawford said:
I reviewed the draft of module 2 last weekend and I have multiple issues with it. It's with my colleagues for comments before I send over to David and DHSC shortly.
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Hi Joan,

Are you in the Education group? Katie Johnstone, one of the patient reps in this group, is now thinking of not providing any feedback to this Module 2 document, even though there are clear issues with it. She does not feel heard, and thus is not sure whether she'll actually provide feedback. This is not good.
 
InitialConditions said:
Hi Joan,

Are you in the Education group? Katie Johnstone, one of the patient reps in this group, is now thinking of not providing any feedback to this Module 2 document, even though there are clear issues with it. She does not feel heard, and thus is not sure whether she'll actually provide feedback. This is not good.
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Feedback is needed especially as she has clear concerns.
 
A general question: when enlisting patient reps, are there ground rules that'd make it difficult for the convener to invite S4ME to apply for a place?

It seems a wasted opportunity not to, but I do understand it's not always straightforward.
 
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