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

Of course, there is a difference between the forum being officially involved and a number of people being involved who happen to be forum members.

 

Yes, I sometimes wonder whether there are things that can be done to make S4ME a guaranteed invitee in the way that the main charities seem to be with these processes.

I note that Adam was involved and commented a while back. If Adam cannot persuade people to see sense there is little hope that anyone can I suspect.

I also note back at the beginning that the series was 'launched' at BACME. Surely, the government working party organisers should have been a bit better informed as to the reality of the situation with regards to BACME? No, forget that.

I think other routes need opening up.

 

BACME was involved in all three working groups, with 3 of them involved in the "Living with ME" group.

 

In my view the most important part of the NICE Section on Energy Management is this:


https://www.nice.org.uk/guidance/ng206/chapter/Recommendations#managing-mecfs



Energy Management

Incorporating physical activity and exercise


1.11.14
Do not offer people with ME/CFS:

• 
  
  
  • physical activity or exercise programmes that are based on deconditioning and exercise avoidance theories as perpetuating ME/CFS.

.

 

It would be good to have a bit more information on what the scope of this second modules - I don't even see a title so far? I am not that clear who it is intended for - maybe GPs or therapists?

Is it about management?

I sympathise with Katie Johnstone's concerns and I think they are right, although we have so little evidence about anything it is hard to be sure about adverse effects. For me, though, the whole framework is out of line with the post-Guideline approach. We should not be having multidisciplinary teams with GPs. There is nothing useful they can do and lots they may do wrong. It is a huge waste of money. As emphasised by Peter Barry and Ilora Finlay in the Times, it is time to set up a specialist service run by physicians with some idea what they are doing and of the evidence behind management.

 

I believe this module is general education and basic management stuff for primary care staff. I don't think David Strain should be writing this. Also, it doesn't look like there's been adequate co-production.

 

We have to fight the illness, the medical profession, the health care systems and far too often the few under-funded charities making blunder after blunder.

Damn this mess.

 

Completely agree, but the problem, I think, is that there is far too much scope within the NICE guideline for exactly this approach; unfortunately, "coordinated multidisciplinary" and "holistic" care is very heavily embedded throughout (e.g. all of s1.10) and the only mentions I can find re GPs/specialist physicians are these:

and:

An ME/CFS specialist team is defined as follows:

Section 1.10 almost makes it certain that therapists will be part of such "teams":

The Finlay/Barry letter doesn't give any different thoughts on the composition of a specialist service - I haven't read the web version but the one in the printed edition of the Times (attached) just says "[w]e made clear recommendations that patients with ME/CFS need specialist services that are empathic, focused on the individual's needs, and that research is needed into the diagnosis and management of ME/CFS and its complications".

 

Yes, I have realised that before. There is a point at which NG206 leaves the rail tracks of evidence grounding and wanders off into the byways of cosy tradition.

 

The Canary has a copy of the 2nd module. Story (includes the module itself):

https://www.thecanary.co/uk/news/2024/10/06/nhs-me-cfs-module/

 

There are some messages there I agree with and others not so much.

it is interesting that they point out that David Strain has said that he is not an ME/CFS expert.

 

The story isn't nearly as interesting as the module itself (which I managed to extract from the embedded Google Slides to a PDF). First thoughts after a quick skim through:

* The introduction should be brought into line with the NICE definition. "Poorly understood" and "challenging diagnosis" is not the best way to begin.

* There are numerous unsupportable statements throughout, including "complex, multi-system, chronic disease which can affects many systems of the body (such as the immune, central nervous and autonomic nervous system)"; "ME/CFS patients often exhibit immune system dysfunction, which can leave them more susceptible to infections"; "No one really knows why, but we do know that both conditions can include imbalances of serotonin, although in ME/CFS it's an imbalance in the brain, while with IBS it's in the gut". There are others.

* The diagnosis section should be brought completely into line with the NICE guideline. The references to MCAS should go. FND is framed wrongly & should be defined much more narrowly (as conditions previously defined as conversion mimicking neurological disease with specific examples) (ETA: or removed entirely).

* Some of the terms used in "sleep patterns and disturbances" are rarely used ("dysania") or wrong ("agogia"), and nocturnal myoclonus beyond occasional hypnic jerks should probably result in further evaluation.

* Not sure about the evidence base for presuming that the trajectory in children is more favourable?

* The "possible causes and triggers" and some of the contents of "what causes ME/CFS" is unsupportable and should go - no robust evidence for impaired immunoglobulins or microclots or microbiome stuff. And the reference to vagus nerve stimulators should also go.

* There are a few spelling and grammatical errors. The suggested blood tests look reasonable.

 

@Nightsong those sound like things that come up in the first module, which we saw on MEA?
I thought the second module was mostly about management? I had better have a closer look.

 

I'm looking at the slides below the Canary story. Did they upload the wrong document? Either way, whatever this is, it needs to be extensively reworked.

ETA: the terms "poorly understood" and "challenging diagnosis" also appear in the recent Bluesky thread by someone involved in the process, so I suspect this is the right document.

 

Why is "poorly understood" a problem? I would be more concerned by claims of it being understood.

We don't understand the cause or the mechanisms, know little about the illness trajectory or subgroups, have no treatments. If that doesn't deserve the label poorly understood, what does?

 

This seems totally unevidenced. Not the sort of thing that should be in a module like this.

Also, FND doesn't look like ME/CFS if you know anything about the two conditions. I don't think that should be in either.