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

In terms of Vitamin supplementation not being helpful, for a Severe or Very Severe patient who is bedbound and laying in darkness, I would have thought that Vitamin D supplementation was essential. It certainly has been in my case, as I got down to dangerously low levels.

 

On the other hand I do wonder whether so much of the 'general hygiene/customer service' level advice has been BPS'ed that there would be some use in reminding people where 'true north' is on how to be empathetic, kind and normal and respectful is.

Maybe something that isn't completely ME/CFS specific but reminds people that 'because we've been so traumatised (someone please come up with another word that won't be misinterpreted and switch that in here ) by going somewhere ill and spoken to like we are mad' approaches, would people remember that it is inappropriate to use the following terms with us. Or these generic attitudes or motivational approaches that might now be used for lots of others will be triggering.

So here's what normal is/used to be and can now be your normal:

And probably not using any terms like mental health would be up there - particularly if someone just did something crappy to you, just phrase it as "the so and so, they shouldn't have done that crappy thing which is very damaging" and not "maybe its your coping strategy". Because when these things happen a heck of a lot more to you (bundled into that minimising term 'stigma') than others, and people pretend not, then just being reassured others don't sponsor it as OK, and see it as a deficiency/issue in the 'doer', is probably mostly what you need to know the world isn't mad.

But also as per BACME not terming 'neglect' or 'not being able to do' into 'self-neglect' - whatever some system is trying to protocol as that's OK. We all know that the distinction matters, otherwise those who trained everyone into it wouldn't have gone to all that effort for whatever real reason they had!

I admit the tone might need a bit more honing to target audience...

 

Haven’t the 3 basic models proposed for ME, & especially in the UK, been psychogenic (hysteria etc - dismiss it entirely) , biopsychosocial & deconditioning (CBT model, Wessely et al, research & care mainly via psychs & therapists) & biological/ biomedical (It’s physical/biological, needing scientific research and medical management approach) & our job is to affirm the latter, which was always clear to sufferers and people who cared for them, but is now irrefutable? This is different to saying we can explain ME much or fully Via these means .... The CDC website do this and the IOM report Did this also. By leaving it a blank& just Talking about pragmatic management a) it leaves the door too open b) it doesn’t move to the medical care & the research model that I want as someone severely affected

 

This exactly

 

"NHS educational module on ME/CFS"
"I give it 2.5 out of 5 stars."
https://mecfs.substack.com/p/nhs-educational-module-on-mecfs

 

I would love to be able to access this program but despite being a pharmacist, I don't qualify as I'm self-employed and not part of the UK (I'm Isle of Man which has a shared care agreement with the UK)

 

For those not on Twitter what does this say?

 

More detailed thread on Bluesky, starting with this post:

https://bsky.app/profile/kjohnstone.bsky.social/post/3l5jhemzsfy2b

 

For those who don't want to click through to any social media, what does it say?

 

Katie J. @kjohnstone.bsky.social 2h
1/ About to start working through the final draft second NHS educational module on ME/CFS. I've been avoiding this because, honestly, I don't have high expectations.
2/ It trots out the old chestnuts about ME/CFS being "poorly understood" and "a challenging diagnosis".
3/ Claims there is no diagnostic test. 2-day CPET would beg to differ!
4/ It claims ME/CFS is likely several different diseases with similar symptoms. Not an unreasonable hypothesis, but I don't think there's consensus that this is 'likely', and it's an odd thing to include in what's meant to be a basic primer for clinicians.
5/ It talks about energy management and activity plans. Activity plans?! No mention of pacing.
6/ It does say that ME/CFS is not FND, which is good.
7/ "Many consider fibromyalgia and ME/CFS as different points on the same spectrum of disease."
8/ It says that ME/CFS must be considered in children with apparent medically unexplained symptoms. GOOD!
9/ "A multidisciplinary team (MDT)... may include:
• GP
• physiotherapists: for tailored exercise and mobility programs
• occupational therapists: for energy conservation strategies and adaptations
• psychologists/psychiatrists: for mental health support
10/ There's supposed to be a "person-centered care and support plan".
11/ It talks about the impact of symptoms on psychological, emotional and social wellbeing. No mention of the impact on physical wellbeing!
12/ It does mention pacing. It seems to switch back and forth between the terms "pacing" and "activity management". Or perhaps those are considered to be different things?
13/ I got to the end. I feel sick. The module doesn't warn that exercise can be harmful. There is nothing in here that would stop a GP from telling a patient to exercise. There's nothing saying that even light exercise could be harmful. There's nothing saying it's dangerous to "push through".
14/ There is only this, buried at the bottom of one of the last slides where it's unlikely to be noticed: "Pacing rather than a regular exercise plan, is essential to managing ME/CFS because it helps avoid exacerbations of symptoms, especially post-exertional malaise."

 

Xitter

"I've gone through the final draft 2nd NHS educational module on ME/CFS. It has some good parts, but there's nothing in it that would tell doctors not to recommend exercise, and no warning that exercise can be harmful. I worry this module would make things worse, not better."

 

For me, anything that talks in terms of a multidisciplinary team or a patient-centred framework is entirely in the wrong ball park.

I see an inability to change mindset that worries me. I would hope that the charities who worked so hard for NICE GL206 can see this.

 

For what it's worth I don't agree with the Bluesky poster about the utility of a 2-day CPET as a diagnostic test - it's not close to being a diagnostic test, but even if it were validated in the future, a test that has the potential to result in significant worsening is not one that could be adopted in routine clinical practice.

Also notable is the lack of any physicians on this suggested MDT! GP with psychologists & physiotherapists. And maybe a psychiatrist.

The comment about fibromyalgia is also telling.

If this is the level of thought resulting from the DHSC effort, I'm worried. I wonder who authored this?

 

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.

 

Not warning about exercise is beyond daft. The system seems to be stuck in its own loop again and again. But people are asking a flawed system to right itself and it's beyond it's capability.

We've seen the damage multi-disciplinary teams do in 'fatigue' long covid and chronic pain clinics. Having an 'integrated' psychologist is going to risk leading into the BPS model - again.

 

For people who made this BS paradigm all about 'teaching' us to think differently, they sure seem unable to learn anything or think any other way than the same way that has never worked, which is pathological behavior. It's behavior that harms, and includes not even listening about harms, but they can't stop doing it, they have to do it the same way always and forever.

They see a pull door, but all they know to do is push. So they push. The door will never open from their actions. And it's written right on the door to pull. But they only ever push. If you tell them that it's a pull door and that pushing will not work, they will simply assert that they are the experts and that they've always pushed on this door. And they sure have. Never opened it, but they will keep on pushing.