ME Association: NHS England Launches New E-learning Module on ME/CFS!

Forward-ME were offered two places at last week's British Association of Clinicians in ME/CFS (BACME) conference and Russell Fleming from the ME Association was able to attend. At the conference, and as part of the Delivery Plan on ME/CFS, a new e-learning module from NHS England was launched. It is one of three continuing professional development (CPD) modules that will be produced

https://meassociation.org.uk/2024/05/nhs-england-launches-new-e-learning-module-on-me-cfs/

 

On an initial skim-through through it looks okay, though I haven't read it in detail. The first sentence is somewhat problematic (@Trish, hit the off button now!) but the rest is better.

Big thanks to Russell for the transcript, it must have been a lot of work.

 

Why is the section on activity management in the transcript accompanied by a cartoon of what appears to be someone doing star jumps?

 

As a very severe bedridden and mute person, this and the lack of acknowledgment of severity is suprising.

Also the treatment of diet as such a major management strategy really feels like another flavour of the “make deep breathing”. Both of these things are good but they are also good for healthy people, it’s not specific to us.

 

I would say that diet is relevant to us only in terms of appropriate support levels. Do we have the carer time available to us to have a choice to eat healthily or not? Someone very severe with out appropriate levels of support may have no choice but to eat cold food straight from the tin, regardless of any advice or desire to eat a balanced diet.

 

Re youngsters (CYP =children and young people)

"The chance of a partial or full recovery is better in children and young people with ME/CFS than in adults.
Therefore, it is important that the diagnosis is considered sooner rather than later. The sooner treatment is offered, the greater the chance of getting better."

I still don't think there is reliable evidence for the initial claim above. Even Bell found that many of the CYP he followed had adapted their lives to accommodate ME, rather than returned to pre-disease function.
The final statement of "The sooner treatment is offered, the greater the chance of getting better." would be very unlikely in the main paediatric clinics where they still push increasing exercise. These incluge Bath, UCLH, Kings and Liverpool.

Re Diet

• A healthy balanced diet with good fluid intake may lessen fatigue and improve exercise tolerance.
• The natural response of many people with ME/CFS when experiencing symptoms is to reach for high-energy, high-carbohydrate or caffeine-based supplements. These are known to cause peaks and troughs in energy levels and exacerbate symptoms.

Not sure re the accuracy of these 2 statements.

 

Just skimmed through this. There's a lot of good content in this, although I do have a few concerns.

I'm not sure why they've described it as "potentially serious". It does not routinely* lead to death or progressive deterioration, but in terms of the impact upon one's life it is very serious indeed.

This is absolutely false. It is a common myth (one that also appears in the recent BBC LP article). Whomever came up with this has no knowledge of the history of MS.

There's then a long digression into some of the various abnormalities that have been researched, but it indulges unproven theories a little too much for my liking. I'm not sure that the cortisol findings have been replicated, for instance (lower levels of cortisol could simply reflect our disturbed sleep - usually cortisol is measured at 9 AM when they are at their peak in patients with a normal sleep cycle). The document even mentions the "microclot" theory when it has always been quite obvious that these are probably artefactual. It does acknowledge the unproven nature of these claims but some of them really would have been better omitted.

Sections 2-4 go into detail about PEM, sleep disturbance and cognitive difficulties. These sections are quite good. It's good to see that the centrality of PEM to an ME/CFS diagnosis is acknowledged, that it can be delayed and that returning to baseline can be prolonged.

I'm not sure there's any evidence that ME/CFS and IBS "frequently coexist". It's certainly true that plenty of people with ME have gastro/digestive symptoms but how many of these meet IBS criteria?

and

Not only is there no methodologically robust evidence for these, the idea that there is a greater chance of recovery with "treatment" is just nonsense because, as the document itself acknowledges later (in Chapter 4), "there is no clinically-proven cure or treatment for ME/CFS".

(* edited to add the word "routinely" (see post below)).

 

I cant do the module
(you have to log in as an NHS worker with a 'qualifying NHS email address to do it -

But reading on the MEA page reproduction of it, then it seems quite reasonable. I mean i agree with @Trish about the listing of possible causes for which the evidence isnt good, but at least it mentions that there are possible biological causes - rather than the usual message of 'its likely psychosocial but it *might* be biomedical'.

I also agrre about the lack of proper focus of severe/very severe ME, which is troubling & it cant be used to aid very severe patients in hospital, which is a real shame.

However, what i was expecting to read in view of it being NHS ENGland was hugely worse than i'm reading from the MEA article page.

Good points also that it provides links to the dialogues for a neglected illness website & that it says progressive exercise programmes dont work for us.

I think its missing a lot of good stuff, but its also missing a whole load of horror that i was expecting! It doesnt appear to say 'tiredness' at all!

Thanks to any PwME/charities for their work on it, and to @Russell Fleming for copying it and making available & efforts on trasncript etc,

 

err, my ME has been progressively deteriorating for the last 10yrs. Lots of people report progressive deterioration, albeit not the commonest presentation, & people do die as a result of complications of ME - ME on death certificate.

So if one were to split hairs i suppose it could be said that people have starved to death because they didnt get feeding support, the ME was the reason they were unable to eat/take in nutrition, for whatever reason. But then what about Sophia Mirza? I dont think her death was nutrition related was it?
So i do think its good that it opens with that. Especially since most HCPs consider ME/CFS to be entirely trivial.

Totally agree, i missed that

 

I did the reaching for sugar & caffeine one - when i was mild and still working - anything that would get me through the day till i could collapse at night

 

You're right, I should've been more careful in how I worded that (especially as someone who has personally experienced the gastroparesis-like symptoms and the associated weight loss and feeding difficulties). What I meant to imply was that it's not a disease process that usually poses a high mortality risk, or routinely results in, say, progressive organ failure and death. In most cases - the very severe patients with feeding difficulties aside - it's "serious" not because it (in most cases) represents an imminent risk to life and limb but because of its devastating effects on our quality of life. My point was that rather than describe it as "potentially serious" they should've emphasised just how impairing it can be, as the thrust of the document seems geared towards managing mild-moderate patients than housebound & bedridden ones.

 

I also used caffeine and sugar to self medicate when still working, but I agree that it is wrong to say ‘many people with ME/CFS’ as we don’t really know numbers or percentages, all we can say is ‘some people’. (I now need to avoid both.)

 

I disagree partly, whilst for diagnosis I think that there is requirement for life to be significantly limited, as people improve, as some do, they can be improving right up to the 99% of functioning but they still are not free of symptoms entirely or the risks of deterioration. There are people who have improved significantly after initial illness, and are working full-time, travelling and even socialising etc too. They might not be able to do hard sport anymore & need to be careful but I think that those cases & Level of illness would be considered as “mild” in terms of impact on function and quality of life.

 

I think there is a problem with the situation where the definition on ME/CFS requires impairment of 50% or more of ‘normal’ functioning in two situations:

• gradual onset where any impairment emerges slowly, does this mean that the person does not have ME/CFS up to the point of 50% impairment, or are we when at the 50% level then willing to infer backwards that they had ME/CFS all along the previous ‘milder’ symptoms reflecting a single ongoing disease process.
• improvement to less than 50% impairment but with some ongoing symptoms, presumably technically once some one has returned to less than 50% impairment they no longer meet the diagnostic criteria for ME/CFS so in that sense they no longer have it, however I assume most people go along with a more common sense interpretation that the same underlying disease process is continuing therefor regarding them as still having ME/CFS. Indeed even if an individual returns to virtually 100% of ‘normal’ functioning there is still the open question of whether that is full recovery or a period of remission of unknown duration.

These issues can only be definitively addressed once we have a diagnostic biomarker or defining combination of biomarkers getting us out of the 50% rule of thumb dilemma.

However I would agree that we can only under present conditions use the full diagnosis of CFS/ME until the 50% level is realised/passed, but then that, as @Cinders66 suggests, it is pragmatic to generalise the label backwards to any period of gradual onset and forwards into periods of remission, assuming the same underlying disease process is present regardless of where the individual is in relation to the 50% level. I would argue also in gradual onset that a putative diagnosis of ‘possible’ or ‘suspected’ ME/CFS might be useful even if the 50% has not yet been reached

 

I'm inclined to agree, but only because of the level of expertise among clinicians. If the knowledge base was where it should be, cases of mild ME or ME in remission would be recognisable, at least over the course of a number of consultations.

I've been in that place more than once, but I was still diagnosable. I was young, resilient, and I had an uncomplicated school-leaver job, so I managed to get by, but I had PEM, early muscle fatiguability, orthostatic intolerance, gastroparesis, disordered sleep, and pain. It was just that my PEM threshold was higher than it is now.

It wasn't recognised because no one asked the right questions. That's not at all surprising—I suspect most GPs hadn't heard of it 50 years ago, let alone knew how to diagnose it—but what's really concerning is how little things have improved since.

 

On this issue:

See my post on 11 April 2024:

UK House of Lords/ House of Commons Questions

 

ah yes i see what ypu mean - I completely agree with you

 

I wonder who dreamt this up?

The scientific stuff is all complete nonsense. It is embarrassingly disappointing that a medical education package should be as poor as this. Medical education used to stick to established facts pretty well. This reads a bit like a 1970s textbook of 'Physiology for Nurses' that nearly always got things back to front.

Roll on some decent science.