NHS England web pages on ME/CFS updated 29th October 2021 (NICE publication date)

I was looking at the MS page in the NHS website yesterday and noticed that it has a clear link to a guide for accessing care services at the bottom of the page.
https://www.nhs.uk/conditions/multiple-sclerosis/

I thought I would check the CFS/ME page.
https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/

Lo and behold, no mention of needing help.

“You may have to make some lifestyle changes”

and “ask family and friends for support”.

this despite them acknowledging that even cleaning teeth can be hard for severe sufferers.

obviously there is much else wrong with the page, which promotes GET and CBT and suggests that most recover.

I used the feedback facility on the site which was extremely long and mostly irrelevant to what I needed to say.

I assume this kind of thing is being considered in the NICE guideline review? I am sure there was a survey that showed how very few of us access social services for help. No wonder.

I do live with my partner but no medical professional has ever suggested I have an assessment. I am severely affected (very long term).

this is my first thread and I had no idea where to put it. It didn’t seem important enough to go into the NICE guidelines area!

 

I think it's almost certain that this won't change until the guidelines do, sadly, and the guidelines won't be published until the end of this year.

 

Don't forget, too, that we have a pediatric and severe patients section, with data from the focus groups done by Keith Geraghty and Oxford Brookes.

ETA: And three carers on the committee!

Infer from that what you will.

 

My only criticism of this post is that it fully deserves an orchestral dramatic intro

More seriously, thank you.

 

NICE is also supposed to cover social care these days. A member of our group has had a social care assessment, and gets some benefit to help pay for a carer. It is means-tested. Would you be eligible for PIP?

Also the APPG, chaired by Carol Monaghan MP, is looking into the two following areas

• Access to healthcare
• Access to financial support and welfare benefits

Hopefully this will help.

I totally agree that all NHS and similar narrative re ME, is DREADFUL, but as Andy suggests, they are all waiting for new NICE Guidelines before changing anything!!

 

I heard of one case where the person had been provided with a wheelchair and aids about her home, based on an assessment of her function & needs. It meant that she could be left alone and her husband could still work.

Then the powers that be noted the diagnosis of ME/CFS and with virtually no notice they removed all the aids from around her house. They were low income, couldn't afford to fit aids themselves and so her husband had to quit work to look after her.

I think there's been a history of ME patients being denied aids for their own good. The condition reduced to they believe they can't do things so they won't, therefore if we encourage them and push them we're doing them a favour. Sickening.

 

yes, I have heard stories of this attitude as well and I think it accounts for the seeming inconsistency of admitting we can be severe, but then not responding as if that were the case (and probably blaming us for not being better than we are).

 

yes I do get PIP and we are coping ok overall, but I just feel it’s wrong that no-one actually checked! How many GPs have I seen over the years, never mind the CFS services! They didn’t mention it, but we were all well enough to attend (though actually I wasn’t, as it turned out).

 

Thanks @adambeyoncelowe

Yes Andy it won’t change in the meantime, but it makes no sense even now. Not to me, anyway!
The attitude seems to be to punish us for daring to struggle, whereas if you struggle with MS, well, that’s now valid.

 

It's the ultimate Catch 22 -

If you say how ill you are and how much you struggle to even attempt the basics, then the perception is that you must be exaggerating. You must have a mental health issue because nobody can be that sick without actually being sick (according to current tests and diagnostic at GP level).

If you don't ask for help, you'll never get it and the problem remains hidden.

The benefits system social care system are back to front. They work on denying access to aids. They seem to spend a great deal.of money to save a fraction of the amount saved.

Without the burden of the additional time stress and resources taken up fighting for every little thing, I believe many people, & I'm not necessarily talking ME patients here, could contribute to their local communities albeit in a voluntary way. It could end up saving money as well as vastly improving quality of life for many.

 

Yes I agree. The (almost) constant benefits battles and resultant fallout have such an impact. To be free of that would quite probably lead to people feeling more able to socialise a little (helping others with loneliness etc) and who knows what. It’s such a waste of money (as you say, it’s costs more than it saves) and people’s energy and mental health. The ripple effect is currently downward... impacting not only us but those around us.

 

getting any kind of benefit these days requires jumping through arbitrarily created hoops . I had my fifth tribunal last month if I had been to unwell to attend I would have lost it since their decision was made based on my testimony and of course they could see how disabled this disease has made me . on the bright side my award was considerably greater than when I was getting dla their forcing people onto pip will not lead to the savings they are looking for .

 

so sorry you had to attend in person. I was so relieved not to have to get to that stage as it would be very difficult to do, as I am sure it was for you. We shouldn’t have to make ourselves worse to get money to live on! I also got more than on DLA, which gives me satisfaction. I wish it was an indefinite award like DLA though...

 

Moved from this thread:
UK NICE 2021 ME/CFS Guideline, published 29th October - post-publication discussion

Sorry to repeat this question, but does anyone know when we can expect the NHS "CFS/ME" webpage to change? Presumably this text needs to be written, and has probably not been written. Is that wrong? It could be a while (presumably before 2024 however, when the page is said to be up for review).

 

I think a little campaign for all the NHS websites to be updated in this respect would likely succeed. Something for the coming months.

 

I have emailed NHS Digital's Elaine Wooler CC: Lynn Bracewell (no longer works for NHS Digital) and Sheree Hemingway (shortly to cease working for NHS Digital) (NHS Digital Terminology and classifications) with this query.

Edit: If Ms Bracewell is unable to advise, I have asked that my query is forwarded to the correct office for a response.

 

well as the NHS says "The main symptom of CFS/ME is feeling extremely tired" its hardly surprising.
I wonder how soon before they update their website.

https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/

 

I've asked them.

 

It's really a problem that the NHS website is there. It's probably the first place people go for information - journalists (and Paul Chrisp, possibly?) - who are actually supposed to be discussing the changes. It seems quite urgent to me. The text to replace it is going to be extremely important and I'm worried given some of these comments that unless there is vigilance, the copy will not be great.

 

well it's been updated

from first view not a lot has changed.
the name yes but
"Myalgic encephalomyelitis, also called chronic fatigue syndrome or ME/CFS, is a long-term condition with a wide range of symptoms. The most common symptom is extreme tiredness."

https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/

not impressed
eta:
it gets worse