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

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.

 

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.

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.

 

Sorry, there was a 'no' missing in 'no need to pay'.

 

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.

 

Are AfME and MEA specifically involved @Joan Crawford ?

 

I shall take a look back to emails for the group meetings.

 

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

 

MEA involved. Not sure AfME.

 

Hear, hear!

 

Sorry to keep asking. I guess what I am really wondering is whether they are involved as 'stakeholders' or administrators. I suspect the former.

 

Stakeholders.

 

Got it !!
I will still talk to Sonya about it.

 

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.

 

Feedback is needed especially as she has clear concerns.

 

It's not really my place to tell Katie what to do. I don't know her, I just responded to her X thread the other day and we had a chat via DM. It would be helpful if one of the other patient reps reached out to her.

 

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.

 

There were at least three S4ME members in the working group but I don't remember who chose to join the education group. I also have no idea how the e-learning module subgroup was picked.