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

What I see under the article is the entire set - or at least was far s it has got. Module 2 comes in after the introduction and stuff about causes etc. It focuses on management and manages to say nothing much while appearing to justify the involvement of a team of people doing nothing much. A number of suggestions are inappropriate, such as eating salt or giving fludrocortisone, or trying acupuncture etc.

The whole thing to me is typical of 'professions allied to medicine' teaching materials although much of the content can only really apply to GPs (diagnosis, referring, prescribing). It would drive me mad if I was a GP because there are no facts on which to judge what the recommendations will amount to in practice (e.g. 'early intervention' - earlier than what?).

 

Do we know who, if anyone, is still in a position to contribute to the audit of the modules? Do the working group still get drafts to see? It seems as if they do but are any members here involved - such as @adambeyoncelowe. It really needs a re-think. When we already have reasonably good guidance from NICE this seems to be entirely a backwards step.

 

A few more random observations on the module(s):

* I don't think the paragraphs on FM are adequately supported either, and as to the idea that "[m]any consider fibromyalgia and ME/CFS as different points on the same spectrum of disease" - even if many people did think so that does not make it true.

* Under the "stigma" section the phrase "[t]he inappropriate framing of ME/CFS as a disease of depressed menopausal women" is not a phrase I think should be in there. Certainly the effect of disbelief, denial and stigma could and should be explored, but more carefully than this.

* "Cognitive rehabilitation techniques"... "Acupuncture.. yoga, or meditation... [t]he common goal of all of these is to improve vagal (parasympathetic tone)"... "compromised immune responses" - all of this stuff needs to be cut.

* "The absence of universally accepted diagnostic criteria tailored to the paediatric population adds to the challenge" - that seems to undermine the NICE guideline.

 

I received the draft approx two weeks ago with 9am deadline today comments. I have not been involved in development of the modules.

I've detailed many inaccurate, unhelpful and misleading issues. Plus I do not think it is helpful for primary care. I think it will be confusing and will do little to improve attitudes towards pwME. Education likely minimal.

Minimal reference to NICE, PEM, exercise/activity etc. Linking to unhelpful advice re sleep, cognitive rehabilitation, pain etc. And so on. Long list. It doesn't read as though ME is understood well by the authors.

I shared my detaled comments with NHS England and Dr S. Also, MEA and AfME.

David's email BCCed in the recipients so I cannot see who received the draft to review. I presume it is the whole group of people involved in the working group for Attitudes and Education.

Needs a rethink.

 

Who is chairing the group, @Joan Crawford ?

 

Stephen Holgate and Nina Muirhead.
Dr Shaun Peter Qureshi and Peter Barry Co chaired meetings too for the Attitudes and Education meetings.

 

Do they not see that the project needs a fresh start?
The material is inappropriate. It is full of ungrounded statements and gives no clear evidence based advice on how to actually make decisions.

 

A question that occurs to me is why the modules are presented as if as lecture slides rather than normal text? Medical education is traditionally presented as prose text that allows one sentence to depend on another. I can understand why there might be question pages at the end of each section but I don't see why the material isn't ordinary prose.

 

I have forwarded my comments along with the slides to Stephen Holgate, Nina Muirhead, Shaun Qureshi, Peter Barry and Willy Weir (who was also in the Attitudes & Education ME/CFS DHSC meetings). I have suggested a reset/restart to the process.

I have a suspicion - and it's only that, that perhaps they are not in the loop as this is an NHS England initiative. And David sent out the slides for review by BCC so I was unable to see who else they went to.

 

Thanks, @Joan Crawford.
I also hope to talk to Sonya Chowdhury about it on Friday.

 

yep this seems pretty dated cliches. Can't have come from the 2021 guidelines which I'd have thought would have been the starter.

And to me some of these seem 'new' and possibly rather than 'debunking' are potentially going to put new myths out there by mentioning things that don't need to be brought up and putting ideas in people's heads by doing so that are perpetuating red herrings rather than aiding clarity.

 

I have been reading Amolok Bansal's 2016 paper for GPs: https://bmcprimcare.biomedcentral.com/articles/10.1186/s12875-016-0493-0
and wonder if it is a direct or indirect source for some of the e-learning module.

 

"NHS England launches the Second E-learning Module on ME/CFS"

https://meassociation.org.uk/2025/01/nhs-england-launches-the-second-e-learning-module-on-me-cfs/

 

I've just looked through the final version of the second module - it's available at:

https://learninghub.nhs.uk/Resource/60400/Item

if you prefer to look at the original rather than the MEA-reformatted version. A few brief comments:

We don't know that. It may simply occur at a higher rate in northern European populations, or even have a geographically distinct distribution - both are factors in MS. I would not attribute the differing rates of diagnosis to under-diagnosis without significantly greater information.

The "Tom" case study is... highly atypical. Incontinence, chronic hiccups?

Sigh. I was hoping "microclots", at least, wouldn't make it through. The severity level descriptions are adapted from NICE - good.

Unevidenced. Why not just say there are reports of ME setbacks following intercurrent infections?

From an advocacy perspective as well as something aimed at NHS professionals this is very useful to have in an official NHS publication.

Doesn't really get to the nub of the problem, which is that the services are providing non-evidence-based and potentially harmful interventions. But I guess that wouldn't clear the legal department.

This is important. Also the diagnostic criteria section is adapted from NICE & looks quite good to me.

I don't really like the content in the "Aligned and overlapping diagnostic conditions" section (the three "aligned and overlapping" conditions are fibromyalgia, MCAS and FND) for the same reasons I gave when the earlier version of this was posted by the Canary.

The section encouraging clinicians to involve themselves in research is a welcome addition.

Don't think we know that for CMV or HHV6A. Also there's a typo there.

Wrong - this may make people believe that pwME are immunocompromised in the classical sense. (We are not neutropenic, we do not have known clinically significant defects with cell-mediated immunity, immunoglobulins or the complement system, and we are not predisposed to opportunistic bacterial or fungal infections so there is really no basis for this claim.) Again, why not just say there are reports of ME setbacks following infections?

Welcome that there is acknowledgement of the difficulties we face in accessing healthcare & that we may be averse to doing so due to prior negative experiences.

 

@Trish Wrote:


"I really don't want to have to see a multidisciplinary team to explore my psychological, emotional and social wellbeing in order to get a care plan - they are none of their business.

That's not the sort of care plan I would want. My care plan would be about practical help with daily living and medication for symptoms, and a statement of my functional limitations and care needs for benefits.'


THIS

.

 

And I don’t want people with the BACME beliefs about us and requisite disrespect due to their misunderstanding abd ignorance near me or speaking for me and about me to others

after so much harm still caused by it that’s the bare minimum I should expect to change ?

such a tired plan from the same people who don’t want to drop their false beliefs that we are deluded or stressed shouldn’t be given the dangerous powers implicit in such things irrelevantly being in such a care plan and such hands - which ps are not implicit in their professional qualifications, knowledge or the little experience that wasn’t based on a harmful wrong paradigm

No one expects to go to a biomedical clinic gif a diagnosis and risk a physio writing a mental health narrative about then that wrecks their access to future care and other dangers as the end result. It’s just not professional or acceptable

snd this, the power difference it would give to such staff inappropriately, the false beliefs not being solidly deprogrammed and not accepted from old staff equating to disrespect gif both patients and real truth and fact of experience vs their preferred untruth creates a situation that makes patients obvious sitting ducks to coercion and it’s as unsafe and inappropriate for being abused or misunderstandings due to inappropriate belief systems and plain dislike of how the old guideline was debunked being taken out on or ‘aimed to be disproven’ on new vulnerable patients’ surely without enough staff change the old guard who have such a conflict are outnumbered by new with more respect and a different mindset /belief system?