NHS England web pages on ME/CFS

[DigitalDrifter]

Yes. It's downright offensive. We all try to be as 'optimistic' as possible, it's only natural to hope for the best, but within the realms of reality, not the realms of false hope.

They also offer: breathing techniques
I'm permanently damaged by trivial exercise, I don't need to be taught how to breath, I already figured it out when I was born.

 

[Sly Saint]

I can't see any mention of the term "post-exertional malaise" on the page for symptoms.

it looks as if they snuck in a few amendments when the site was reviewed in May 2024.

Symptoms of ME/CFS
The 4 main symptoms of ME/CFS are:

• feeling extremely tired all the time (fatigue), which can make daily activities like taking a shower, or going to work or school, difficult
• sleep problems, including insomnia, sleeping too much, feeling like you have not slept properly and feeling exhausted or stiff when you wake up
• problems with thinking, concentration and memory (brain fog)
• symptoms getting worse after physical or mental activity, and possibly taking weeks to get better (also called post-exertional malaise, or PEM)

Post-exertional malaise (PEM)
Symptoms of ME/CFS can get worse after activity (called post-exertional malaise, or PEM).

PEM can be triggered by physical or mental activity, such as socialising or studying

PEM can happen hours or days after the triggering activity, and it can take weeks to recover.

Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) - Symptoms - NHS (www.nhs.uk)

 

[rvallee]

Well this might make the weird, and false, argument from our biopsychosauruses that PEM constitutes a completely new and never-before-heard-of definition of ME/CFS a tad bit problematic.

Not that the substance of their argument is of any important but still.

They chose to ignore it in all their studies and trials because of how they chose to define their pseudoscience. Even though it basically makes no difference since their crap doesn't work any better without or without it. For anything. Literally symptoms cannot be improved using any of this psychobehavioral crap unless they are actually psychobehavioral, which is not even close to be the case here.

Feels too little too late but still, reality is slowly piercing the veil of willful ignorance one tiny bit at a time. Not that I can't see them quietly backtracking following a few chummy calls or text messages...

 

[chillier]

Moved posts

I think there was a thread about this but I can't find it so posting here. I think the NHS website for ME/CFS has been improved.

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

- PEM listed as a main symptom
- GET mentioned as unsuitable

Is this old news that I have missed? I'm sure it looked much worse than this when I last checked it.

 

[chillier]

I'm quite pleased to see these changes. I would still prefer if the link text itself referred to mecfs rather than cfs, but the most important thing is the addition of PEM.

 

[rvallee]

Still not NICE-compliant, though, as they list CBT as a treatment, when it's explicitly described as support in the guideline.

So as usual it's a compromise between reality and fiction.

 

[Ash]

Still not NICE-compliant, though, as they list CBT as a treatment, when it's explicitly described as support in the guideline.

So as usual it's a compromise between reality and fiction.

Also, energy management isn’t a treatment either.

 

[bobbler]

Also, energy management isn’t a treatment either.

It needs to be energy conservation as the main management strategy

then anything else isn’t even that - just add ins fir other things?

 

[rvallee]

Also, energy management isn’t a treatment either.

The same way as not spending money is not a treatment for poverty. This shouldn't be hard to understand. It's literally easy to understand. But lots of people struggle with both propositions, with plenty who even think that not helping poor people is the better option. It's the same underlying beliefs and deficit of perspective that fail.

 

[Sly Saint]

https://www.s4me.info/threads/after...sionals-website-changes-etc.23885/post-400744

I still can't see a link to the NICE guidelines(?)
As #MEAction have contacted the NHS about the website maybe they could also raise this.
Also, as they no longer (thankfully) have that awful MEA video maybe they could be persuaded to put one of the good short videos on PEM on the site?
As I mentioned on another thread about the NHS website recently, the NHS now only seem to link to the MEA for further info. Definitely not ideal.

 

[MEMarge]

It struck me the other day that the NICE "Box 2 Symptoms for suspecting ME/CFS" does not include the fact that

• the person's ability to engage in occupational, educational, social or personal activities is significantly reduced from pre‑illness levels

This is mentioned as one of the bullets above Box 2, but in the NHS info above they have merely very briefly summarised the 4 key symptoms, badly - once more reinforcing that extreme tiredness is the problem

• fatigue (extreme tiredness)
• sleep problems
• issues with thinking and concentration
• symptoms are made worse by physical or mental activity

The essence of ME is that a person's life is totally disrupted by ME.

Apologies for not expressing this very well.

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