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

NHS Personalised care (Personalised Care@Pers_Care
Personalised Care means people have more choice and control over their care. We’re part of
@NHSEngland)
retweeted

https://twitter.com/user/status/1456305375876206596


would someone on twitter like to tell them that the NHS England website pages are incorrect and do not reflect the new guidelines.

 

Furious, just Googled "what is ME" after a few hours spent with family who I haven't seen since diagnosis and who didn't ask anything about my situation, I wondered what they would find if they had Google my illness.

First result says "treatments for ME include talking therapies, exercise programmes and medicines".

It's some kind of reformulated text from the NHS website, perhaps that's the "SEO" text - not sure how it works.

 

It is what in Google world is called the "Knowledge Panel" here's the Googleverse explanation: https://support.google.com/knowledgepanel/answer/9163198 . At the bottom of the panel, outside the frame on the bottom right, is a feedback link. If any one is motivated maybe they could post a link to NICE and other sources that the Google robots can mangle into something more useful ? Sorry I'm excused for today

Reminds why I use Firefox.

 

Not sure how to do this exactly. If there are steps that can be taken to ameliorate this perhaps we could all do it and have a chance of the text improving?

 

posted about this here

https://www.s4me.info/threads/uk-ni...lication-discussion.22996/page-14#post-386790

 

Oops sorry for the duplication!

I gave rather angry feedback to google when I saw it, made sure to include the terms medical and misinformation.

 

When I looked at it just now it used the CDC description for M.E. and the NHS description for the question are you able to improve.

CDC bit:

Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling and complex illness. People with ME/CFS are often not able to do their usual activities. At times, ME/CFS may confine them to bed. People with ME/CFS have overwhelming fatigue that is not improved by rest.

NHS bit:

Can you recover from myalgic encephalomyelitis?

Most people with ME/CFS will improve over time, especially with treatment, although some people do not make a full recovery. It's also likely there will be periods when your symptoms get better or worse. Children and young people with ME/CFS are more likely to recover fully.

 

I love how the symptoms sound horrendous like a call sheet for any major virus and yet they use tiredness to describe pem and general state of function in the same page.

The mind boggles. Seriously though I think it's lack of education they haven't got a clue. I'm lucky to have such an excellent GP.

 

ME on its own still hidden away here
https://www.england.nhs.uk/ourwork/...ur-work-on-long-term-conditions/neurological/

should this not be ME/CFS now?

Haven't read this
Transformation Guide for Commissioners
The work has resulted in publication of a report to support commissioners to transform neurological care in line with the vision set out for long term conditions in the NHS Five Year Forward View

(from 2015 ?)

 

Posts moved from this thread:
https://www.s4me.info/threads/uk-pa...id-javid-12-may-2022.27591/page-8#post-421236

The NHS pages are regressive, trivialising, incoherent, push CBT, regressing to calling ME "tiredness" AND journalists are quoting them. I think some journalists realise they have to write about ME differently now but don't know what to say so turn to the NHS pages, sections of which hark back to 1980, calling ME 'Tired all the time' (TATT)

I posted about the NHS pages here
https://www.s4me.info/threads/me-awareness-day-week-month-may-2022.25346/#post-418022


There is no mention of the hallmark symptom PEM. Some of the details in the NHS pages are much better, but overall those pages need serious improvement.

These pages effectively state that some people with ME will improve over time with CBT.


NHS:

"The main symptom of myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS), is feeling extremely tired and generally unwell"




"Some people with ME/CFS will improve over time, especially with treatment."


"Specialist treatments

There are a number of specialist treatments for ME/CFS.

Cognitive behavioural therapy (CBT)

If you have mild or moderate ME/CFS, you should be offered cognitive behavioural therapy (CBT).

CBT is a talking treatment that can help you manage ME/CFS by changing the way you think and behave.

Your CBT therapist will ideally have experience of dealing with ME/CFS and treatment will be offered on a 1-to-1 basis.

Using CBT does not mean ME/CFS is considered to be a psychological condition. It's used to help people with a variety of long-term conditions.'

 

There are then all of the local NHS trust pages that take their information from various sources. I think all the ones I have seen reference psychological factors.

these pages then get used in local training for medical personnel.

should we have a new thread on “local nhs pages” and we could all try researching them and this could be passed on to the parliamentary group to illustrate why so much more help is needed?

 

Is there not a Thread on the UK 'ME' local Services Clinics and whether they have updated their online pages and changed their 'treatments'.

ME/CFS Services in the United Kingdom
https://www.s4me.info/threads/me-cfs-services-in-the-united-kingdom.5625/page-23

 

I bleieve the MEA have been asking for peopel to point oit bad nhs local pages for a while - i remember they recently challeneged the nottingham one & got it changed. dont know where i saw that if it was here on the s4 thread or if it was on MEAfb. here i think but dont have energy to traw back through/search thread.

So if a concerted effort s going to be made (rather than an ad hoc noticing of errors) it might be a good idea to liase with the,/find out how far they got/what their plans are, to avoid duplicating efforts

 

Moved posts

Meanwhile I completed a simple ‘contact us’ form about a page on the NHS website last week, which went to NHS Digital, only to be told that it should be referred to NHS England this week.

So I had to start all over again.
I only used what was available on their own website.
Still no response.



ETA: sorry I digressed from the topic, my apologies

 

I suspect the erroneous NHS E website on ME and CFS was in your sights? Never mind, the NHS one is equally bad!

 

https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/
Note date October 2021!!!
There is an email which can be used to make suggestions complaints!


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The above page in in the sights of others. Sally from ME Foggy Dog has been checking page amendments as they go and this ‘treatment’ of CBT for ME/CFS is high on her list.

https://twitter.com/user/status/1631563718373912576

 

Actually it is another page

https://www.england.nhs.uk/ourwork/clinical-policy/ltc/our-work-on-long-term-conditions/

My ‘roundabout’ journey requesting that the Neurological conditions hyperlink be mended - it goes to a Page Not Found (404) -remains ongoing.

This started 27 January and I chased the most recent of the NHS email addresses again, earlier this week.