NHS England web pages on ME/CFS

The NHS page is awful, particularly the treatment of PEM. Is there hope of improving it? It's misleading enough to warrant being changed.
The mention and description of PEM is wrong and inadequate and does not even occur up top where the symptoms are. You have to scroll through. It should be brought into consistency with the new guideline.

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

Edit: are they allowed to use a different symptom list to that stated in the guideline?? I mean ? Have they just not bothered to change it properly yet or is this what they are planning on sticking with?

 

Can NICE get them to change it as it is misrepresenting the NICE guidelines and what hope do we have to change the perception of ME/CFS if this is what most people will look at.

@adambeyoncelowe @Jonathan Edwards

 

"As the symptoms of ME/CFS are similar to those of many common illnesses that usually get better on their own, a diagnosis of ME/CFS may be considered if you do not get better as quickly as expected." >>> ???

The NHS page describes an illness that has nothing to do with what is in the guideline published today. Why is post-exertional malaise not in the main list of symptoms at all? That is all that some people will look at.

NHS website:
"Common symptoms of ME/CFS include

• feeling extremely tired all the time – you may find it very hard to do daily activities
• still feeling tired after resting or sleeping
• taking a long time to recover after physical activity
• problems sleeping, such as waking up often during the night
• problems with thinking, memory and concentration

Some people with ME/CFS may also have other symptoms, including:

• muscle or joint pain
• headaches
• a sore throat
• flu-like symptoms
• feeling dizzy or sick
• fast or irregular heartbeats (heart palpitations)"

This is listed under "extreme tiredness (fatigue)" on the second page (my bolding):

"Exercising usually makes the symptoms worse. Sometimes the effect is delayed and you'll feel very tired a few hours after you've exercised, or even the next day."

There is an excessive focus on "tiredness" and it does not mirror the guideline published today. The phrasing is ridiculous and misleading. Who was responsible for drafting this?

 

Dr Shepherd posted this on the MEA Facebook page fairly recently:

 

The CBT wording on the NHS website is bad (just terrible, v misleading), but on balance there are other issues with it that are even worse such as the PEM issue and symptom descriptions. Sensory issues should be in the list; it is only in the severity descriptions.

The symptom list and description of the illness should mirror the NICE document. I really hope this is not intended to be the final "updated" version. At least the previous version had a warning on it that it was being updated!

Edit: incidentally, there seems to be a shift to "extreme tiredness" from "fatigue" - I really hope there can be a roughly accurate description of this illness I've had for so many years up there sometime soon. :/ Dear NHS, please try again.

 

https://www.nice.org.uk/guidance/ng203

https://www.nice.org.uk/guidance/ng9

https://www.nice.org.uk/guidance/ng17

https://www.nice.org.uk/guidance/cg142

and others all have the NICE accredited logo.

Some also have the NHS logo.


https://www.nice.org.uk/guidance/ng193

also has the NICE accredited logo, and also the RCP logo.

The presence of the RCP logo might be seen as endorsement. But they have put their name to today's joint statement.

 

ME Association on Facebook

Code:

https://www.facebook.com/meassociation/posts/4522166264507663

ME Association

NHS website updates its information on ME/CFS to link in with the new guideline
That was quick!
https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/
Not happy with the CBT wording and the link
This needs to explain that CBT is no longer recommended as a way of treating the underlying disease process in ME/CFS
But it may be help some people to cope with the physchological distress that may accompany ME/CFS
Dr Charles Shepherd - MEA

(...)

ME Association
Thanks for all these very helpful comments. Yes - this NHS information needs much more than a quick NICE update. It's on a very long list of 'to do' following publication of the new guideline... CS

 

how difficult would it be to put this on
"Myalgic encephalomyelitis, also called chronic fatigue syndrome or ME/CFS, is a long-term condition with a wide range of symptoms. The defining symptom is post-exertional malaise."

"Post-exertional malaise (PEM) is the worsening of symptoms following even minor physical or mental exertion, with symptoms typically worsening 12 to 48 hours after activity and lasting for days or even weeks. PEM can be mitigated by activity management (pacing)."

(the second sentence taken from the CDC website).

eta: even NHS scotlands (pre ne NICE GL) is better
"
Myalgic encephalomyelitis (ME) or chronic fatigue syndrome (CFS) is a long term condition that causes persistent fatigue (exhaustion) that doesn't go away with sleep or rest and affects everyday life. It most commonly affects the nervous and immune systems. Sometimes it is diagnosed as post viral fatigue syndrome (PVFS).

People with ME-CFS experience severe fatigue associated with post-exertional malaise (PEM). This is when the body is not able to recover after using even small amounts of energy, leading to a flare up in symptoms. This fatigue feels very different to ordinary tiredness and may take a day or two to kick in after physical, mental or emotional exertion."
https://www.nhsinform.scot/illnesse...-and-spinal-cord/chronic-fatigue-syndrome-cfs

 

Tremendously, apparently.

 

I may have lost my place in this or not seen the link but the NHS have changed their input on NHS and CBT under the heading of treating and goes against NICE with and looks very much like GET is on there too Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) - NHS (www.nhs.uk)

 

Looks like it's been written by someone who couldn't be bothered to read through all the new guideline but has just cherry picked parts of it and cut and pasted them into the old version. This is a very damaging approach to have taken.

 

See: https://www.s4me.info/threads/nhs-w...2021-nice-publication-date.23065/#post-386542

for ME Association's comments on MEA FB.

 

Moved post

Well NHS have not hung about,,,,
https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/
Page last reviewed: 29 October 2021
Next review due: 29 October 2024

Treating ME/CFS
Treatment for ME/CFS aims to relieve the symptoms. Your treatment will depend on how the condition is affecting you

While there is currently no cure for ME/CFS, there are treatments that may help you manage the condition.

Treatments include:

• cognitive behavioural therapy (CBT)
• energy management – where you're given advice about how to make best use of the energy you have without making your symptoms worse
• medicine to control symptoms such as pain and sleeping problems

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.

Find out more about treatments for ME/CFS

 

Is there any hope of getting the whole thing re-written and actually based on the new guideline? The website is extraordinarily bad.

 

thank you now going

 

I would say thins is intentional. They will now start their changing the guidelines through the channels afforded to them by NICE. That is why Leng like Baker is stepping down or were they pushed. I would also not be surprised if Carol Black was given the position of NICE

 

Needs to be a court challenge I would hope?

 

I think this is more of a case of the charities and other parties/organisations making a group effort. Although some of the phrasing seems deliberate, much of this is likely down to incompetence and laziness and could be changed. I think it's fairly likely this could be achieved.

But starting again entirely? Not so sure. I am not sure how it works and so I have no idea. I hope there is a big effort on this. The website is sadly the first port of call for many, and is likely viewed as authoritative or trustworthy by many due to its association with the NHS. Most people trust and feel very positive about the "NHS" and their feelings about it confer to the materials.

 

This is a highly misleading skew of what the new guideline says. It amounts to an untruthful statement from NHS.

• NICE explicitly says that GET is not to be offered to anyone with ME/CFS.
• The NHS wording makes it sound like it is OK to offer it to some ME/CFS sufferers. Not true.
• The NHS wording makes it sound like the new guideline does not preclude GET, but simply does not recommend it. Not true.
  
• The new guideline does explicitly preclude GET, and all other treatments based the deconditioning theory.

They really need to get this right.

I've not read the rest of it.