NHS England web pages on ME/CFS

Dx Revision Watch said:
I can't see any mention of the term "post-exertional malaise" on the page for symptoms.
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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)
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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.
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Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) - Symptoms - NHS (www.nhs.uk)
 
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...
 
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.
 
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Ash said:
Also, energy management isn’t a treatment either.
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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.
 

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.
 
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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Not sure if this has been discussed before but a current reddit thread noticed the following statements on the NHS Treatment page on ME/CFS:
It's likely you'll need to rest during the day, and your doctor should advise you about the best way to do this. For example, they may suggest limiting each rest period to 30 minutes and teach you relaxation techniques, such as breathing exercises.
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There's limited or no evidence to recommend:
  • resting completely – there's no evidence this helps
  • complementary medicine – there's not enough evidence that it's helpful for ME/CFS
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From the reddit post:
I was reading the NHS website overview about ME/CFS and noticed an odd reoccurring theme of something I've never really heard about before, the idea you shouldn't "rest completely" and instead try and limit your rest.

Do you think this holds any water/is widely applicable? One thing I really struggle with lately is determining when I'm really ready to go again and when I'm just using adrenaline/willpower to continue myself I've had enough rest. I'm wondering if resting completely can really be unhelpful or even counterproductive
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Chandelier said:
Not sure if this has been discussed before but a current reddit thread noticed the following statements on the NHS Treatment page on ME/CFS:



From the reddit post:
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Do you see this bs on eg MS descriptions? (where they see it as both an illness and a disability that has limits but includes ‘fatigue’ in the description so sadly the backwards gravy train seems to be taking much sane thinking backwards due to the disability ideology from reframing exhaustion as ‘not disability’ by pretending it’s ’mental health’ by pretending the physical disability is attitude and ‘having the tools to overcome’ callously whilst choosing not to check it works and doesn’t harm)

This crap is everywhere (the bs I see on social media claiming if an old person is in bed for a day their muscles age ten years - literally I saw that posted with no citation) so im genuinely intrigued to see how far the bs has seeped into pretending it’s real advice not spreading bigotry under that pretext - the people who say it sadly end up thinking they are qualified in something for saying it.
 
I guess it is fair to say there is no evidence for complete rest. But in the wider context the tone seems standard NHS ‘assume the patient is lazy’ stuff which completely ignores the reality of severe me/cfs and lack of any specialist services for severe patients it signposts. Fine for keeping the myths and misconceptions alive but little else.

These patient facing pages are often understandably light but they’re normally backed by appropriate direct medical support. Here we have none. Linking to the NHS England training materials would perhaps give better context and visibility, for both patients and medical staff. But we really need a proper national campaign of education for people working in the NHS.
 
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hotblack said:
I guess it is fair to say there is no evidence for complete rest. But in the wider context the tone seems standard NHS ‘assume the patient is lazy’ stuff which completely ignores the reality of severe me/cfs and lack of any specialist services for severe patients it signposts. Fine for keeping the myths and misconceptions alive but little else.

These patient facing pages are often understandably light but they’re normally backed by appropriate direct medical support. Here we have none. Linking to the NHS England training materials would perhaps give better context and visibility, for both patients and medical staff. But we really need a proper national campaign of education for people working in the NHS.
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It’s the classic claiming because it won’t cure a very severe patient (in 6-8 weeks) then not allowing them to be in bed is harming them propaganda switch and bait.

They sure aren’t saying ‘but there’s also no evidence it doesn’t help if the patient needs it either, and ps there are hugely different severities and differences between patients’

An unfixed broken leg doesn’t have evidence that rest cures it but you don’t use that to infer there shouldn’t be support for them not running around on it when they say it seems to be making the break worse. And slyly write something suggesting not being off their feet for more than 30mins might not be helpful.

They’ll say the words these people that they’ve heard they’ve been told what they do ‘doesn’t treat the illness’ but they firmly don’t intend to let that change a smidgeon of what they think or do regarding what that is supposed to cascade down to. So they do not get at all that they aren’t ‘fixing’ or ‘managing’ ‘the illness’ and therefore shouldn’t be saying phrases old school that clearly are there to suggest the patient saying ‘they need to stay in bed all day’ is not medically needed and I’m pretty damn sure we all know the person writing it will pretend to deny but absolutely believes tosh like ‘those very severe ended up like that cos if you rest for more than 30mins it becomes a slippery slope’ and fir tosh bigoted belief reasons (addicted to/fear of/made up crap claiming 1hr lying down decknditions)

And the stupidity that a serious illness they wanted to be believed when they say ‘I think it’s real’ with their fingers crossed behind their back some and in delusion how what they’ve been taught doesn’t add the two up in others isn’t ’best Managed’ the same way as depression or their feeling a bit motivated days or their end of a busy week ‘fatigue’ or children
 
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