NHS England now lists ME (not CFS) under neurological conditions but puts it in potentially unhelpful category

https://www.england.nhs.uk/ourwork/...ur-work-on-long-term-conditions/neurological/

I’m not sure if others will be pleased or exasperated. I’m bedridden 24/7 and identify with advanced , chronic, incapacitating neurological illness in terms of impact. My M.E. is neither intermittent or particularly unpredictable (in many ways it’s terribly predictable & quite uniform, it barely fluctuates in a way others would notice) and I don’t relate to the other temporary, intermittent illnesses they list - headache, epilepsy, even early MS.

I personally am not comfortable with ME being framed this way as I think it again downplays it. But then again, they’ve dumped the CFS and put it under a physical illness category which can be perceived as an upgrade (I personally agree with nacul /IOM that multi- system is better). I appreciate the difficulty of classification of an illness with diverse trajectory, outcome and severity and uncertain cause, and also that some might feel the category ok but I don’t personally feel satisfied with this and feel

It’s new though right? I’ve not seen nhs do this before ?

 

I can't say I've seen this before, but then I sometimes wonder if the left hand even knows the right hand exists ket alone what it gets up to with NHS England & NiCE etc.

They say:

I guess this is because they don't understand that, like an iceberg, what they see and understand about ME is only a very small and possibly transient part of the whole picture.

If this information is based on the clinical view - then what they fail to see is the vast majority of patients

- have contact with clinics when fairly newly diagnosed - thus missing the possibility of it being progressive for some

- drop out of the clinic because treatment is making them worse - thus not seeing treatments are inappropriate & therefore they're understanding of the disease is wrong

- drop out of the clinic because apart from basic pain & sleep meds and maybe a letter supporting your claim for the DWP there's nothing else they can do. So the fail to see people don't just recover they just go away.

- Where there is remission equate it with recovery - failing to close the feedback loop that demonstrates increased activity beyond a certain point, even when feeling relatively well exacerbates the condition.

Just complete failure really.

There's some pretty wording about complex care needs, care in the community that, to my mind, are the figurative equivalent of brushing dandruff from your shoulders. Let it become someone else's problem - the family, community, social services.

Plus ça change.

 

I read 'intermittent and unpredictable' as 'relapsing-remitting/fluctuating'.

Note that they list 'later stages of MS' under 'progressive' (i.e., primary and secondary progressive MS, as opposed to relapsing-remitting MS).

 

Yes, this is neurological conditions that are a subset of long term conditions and I read the category simply as implying fluctuating or hard to classify or predict severity at any given time.

 

That would be good and it's certainly something to quote but in my experience it's fairly arbitrary which piece of advice or information medics choose to believe.

Certainly no harm in having another reference to throw at them.

 

The other thing to bear in mind is that the MEA has been lobbying the DWP to recognise ME as a fluctuating condition for years. This is important for proving disability.

If the NHS now officially lists it this way, it helps in the long-run.

 

Ok but I think that having it universally called that is as harmful to the entrenched moderate and severe as it would be framing all MS as fluctuating and remitting because neither are. this website showed recognition and sensitivity to MS variation and we need to get the same for ME afaic. I and similar others not helped by people thinking We have good days and are up and down if we don’t and aren’t.

 

Yes, there booklet on applying for ESA gives good advice on explaining the fluctuating nature of the condition to the DWP. Without that I'm not sure I would have been able to get my case across & be awarded the benefit.

It would be wonderful to see the flip side of this - where the NHS start to appreciate that fluctuations where the condition seems to improve are likely to be transient and therefore the patient shouldn't necessarily be increasing their activities at this time. Certainly not by an arbitrary percentage regardless of symptoms.

Ditto @Action for M.E. with their "pacing up".

 

Agreed. Bad days and worse days is more accurate for many rather than good days and bad days.

Then at the very severe end of the scale there really isn't much by way of fluctuations.

 

Intermittent to me makes it sound like it comes and goes, rather than fluctuating and it most certainly never 'goes' its nice that M.E. got mentioned though i'm not sure about being compared to early stage MS.

I've known people who were full blown MS who couldnt believe how much worse my quality of life was.

 

I think we have to be aware that we're mixing terminology here. Stages =/= severity. Relapsing-remitting isn't the same thing as mild.

In ME we talk of mild to very severe, in MS they have RRMS (relapsing-remitting), PPMS (primary progressive) and SPMS (secondary progressive).

True, there may be progressive cohorts in ME, too, but there's no clear evidence regarding specific disease courses or 'stages' yet.

So when the NHS refers to 'early stages of MS' they don't mean 'mild MS' but 'relapsing-remitting MS'. By putting us together, they're not saying ME can't be severe.

 

That's how I read it – I don't think they're directly comparing the conditions to each other, just giving a list of examples.

Even severe ME is arguably unpredictable, in the sense that we don't know which patients will develop it or when. Some are very ill from the outset; some develop severe symptoms after a period of over-exertion or another additional challenge to their health; some moderately-affected people get worse without any obvious provocation, in a pattern that looks like progression.

I certainly think they need to look at how long-term conditions are managed, including the fact that there's a need for a nursing specialism in ME. My friend with MS has much more time to talk with the nurses than she does with her GP or consultant, and they know which specific symptoms should be discussed with a doctor because there might be treatment options, and which are best addressed with other types of support. Most of the adaptations, mobility assistance, and external carers that she's been offered have been accessed with the help of the nursing team.

 

I agree. Nurses would be invaluable.

 

They would - but only with the right training and expertise - which I am sure is what you're saying @adambeyoncelowe.

Members of my family attend assorted specialist clinics and the nurses are specialist nurses and a great help.

If the nurses were to be trained to current cfs clinic standards/expertise then, no. I think they could do more harm than good.

 

I think we all agree with that!

 

All of us here do. I just get twitchy....seen so many people demanding more care and treatment without specifying they mean they want treatments that actually help and not more of the same. Then being upset and annoyed when they get what they asked for.....

 

I don't know. Given the culture around ME/CFS in the UK, I suspect that they'd often be worse than nothing. The FINE trial relied on nurses and that had no benefit for patients (there's also the "bastards don't want to get better" quote in one of their papers on the nurses dealing with patients). Unless there's a really radical change, with people like Crawley & co getting fired, I think that any NHS medical care has a high risk of being actively unhelpful.

 

Do you think that there's much chance of nurses in the UK getting decent training without their being radical changes that would lead to the removal of people like Crawley? Crawley talks about it being a physical illness, the importance of PEM, and 'pacing' - that doesn't matter imo. Currently, things are so broken in the UK that Crawley is seen as the leading figure for children with CFS. I think that putting more staff into a system like that is a bad idea.