NHS England web pages on ME/CFS

JemPD said:
I'm utterly flabbergasted to read that the NHS website text was written by 2 PwME. I am thankful for their effofts and intentions, and i agree the bits about GET that were in the previous edition having been removed is a good thing. But... How anyone with ME could describe it as 'extreme tiredness' & 'still feeling tired after sleep or rest', is just beyond me. Unless they are at the very mild end of the spectrum of severity. Its astonishing. The fact that it was written for people who know nothing about it & in easy english just makes it worse. Even replacing the word with fatigue or exhaustion would have been better.

As it is, looking at the symptoms list, every adult with a child under 5 will think they are suffering from CFS! For goodness sake, how does it feel to be bedridden, tube fed & catheterised, in constant agony, and have your situation described as tiredness. Sorry to whomever the authors were, i appreciate you tried & its a difficult task, but really... 'tiredness'???!!!!

If it must be described as if you're talking to a 4 yr old, then at least add in (in the symptoms list) something to clarify that it can be much more severe than this.
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Seeing the word tiredness in association with this condition makes me very angry but I suspect the reason this word is used is because the NHS website in general (not just the ME/CFS entry) is written in childlike language. Other NHS disease descriptions also use trivialising language like "sore tummy" or "feeling sick (nausea)" as though they're aiming at 1st grade reading level. I'm not sure why this is. American websites use plain English without coming across as being written by an idiot.
 
Sid said:
Seeing the word tiredness in association with this condition makes me very angry but I suspect the reason this word is used is because the NHS website in general (not just the ME/CFS entry) is written in childlike language. Other NHS disease descriptions also use trivialising language like "sore tummy" or "feeling sick (nausea)" as though they're aiming at 1st grade reading level. I'm not sure why this is. American websites use plain English without coming across as being written by an idiot.
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Whilst initially tempted by this, reading the rest of it makes that a nonsense

Dx Revision Watch said: ↑
Some people with ME/CFS have found that exercise programmes can make their symptoms better. But some also found it made no difference or actually made symptoms worse.

If you think you would benefit from increased levels of exercise you should be offered a personalised plan with support from a health professional (such as a physiotherapist) with experience in working with people with ME/CFS.
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This would be worded very differently surely if all genuinely had to be at the same lowest common denominator. ANd if it isn't all on the same lowest common denominator then I don't think the excuse for inaccuracy holds for the first bit.

And the unevidenced nonsense on the bit that isn't even worded 'for the audience' certainly is unjustifiable?
 
Kitty said:
If it's delivered properly, it's not like that at all. It goes at the client's pace, and only as far and as deep as they want to go. It's someone listening to the things they've identified that they already know are negative or unhelpful, and suggesting another way to look at, deal with, and communicate them. The idea is not getting stuck in "I end up doing this because I'm guilty about not doing that, and then I'm so ill I can't do anything" grooves.

But that assumes a properly trained therapist, working one to one, who hasn't been told they have ten weeks to cover X, Y, and Z as if they're training department heads to deliver the working at height course.
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Potentially.

But another fundamental issue is that those who do end up e.g. not being able to pace are normally having to do so due to other people or being in a situation where commitments can't be changed e.g. needing to earn money.

It sounds great in theory for someone to say 'tackle the person suffering the consequences' but many of those people don't lack assertiveness, or even power or words to do it - they are stuck there because the old paradigm hasn't been followed up with the clear instruction that clinics must now 'make good' on the damage done by misinformation. ie be telling friends, family and employers how damaging or problematic x, y, z is.

And that the days of laughing at people when they say that, snarking or just ignoring them are not just gone but that is basically abuse.

Otherwise isn't it just being like telling someone in a relationship where 'my husband thinks/tells me I'm mad' is happening , and the strategies being taught are 'just ignore it' or 'laugh at it' which might work when someone isn't disabled but doesn't fix them assuming they can do all the housework/a full time job etc.

And what good is it for the mad person to say 'well I'm just not going to do it' when they look behind them, as any seriously ill person would, and there isn't even an HCP whistling - they just put up the old text years ago that incited this, never took it down and then disappeared for the clean-up.

And last line is rather the irony there isn't it. But my point is that, often with the hand of those individuals involved, a situation has been created that no amount of assertiveness or training in the individual can undo. Nevermind one who is debilitated. And a debilitated person is less able to 'just leave it' or 'fight for what is right in a divorce' or 'sell their worth to get adjustments in their role' or move to a different job 10 miles away, having interviewed in 5 different places (using their weekends and annual leave)

So for a lot of people it is selling fiction. Except for the few who it is only them putting pressure on themselves 'with no external cause'. It's amazing what a few 'cmmon mate up your game and give her a hand' can do when said by multiple friends and relatives to make someone who is around an ill person feel like they've got the wrong end of the stick too.

But I have a feeling that the way NHS is currently trying to bill CBT as 'treatment and management only involves the patient' directly undermines that. It isn't like they are billing it to others reading it as 'patients are encouraged to do CBT to become more assertive and robust in cutting down their exertion and saying no to others, as reducing their exertion is so important'. It says 'change behaviours'. And I suspect it is deliberate (even if they don't notice it) for a number of reasons
 
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The ME association today Dr Charles Shepherd:

The completely inappropriate term ‘extreme tiredness’ comes from the NHS website information on ME/CFS symptoms. The MEA, along with other charities, have been trying to get the website information consistent with the NICE guideline. I’m afraid that getting these sort of things changed by NHS bureaucracy is often a very frustrating business. An update of the NHS website is an action point in the DHSC Delivery Plan for March 2024 but this is now delayed. We will keep trying ! Dr CS MEA
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Edited. They have had since October 2021.
 
I’m afraid that getting these sort of things changed by NHS bureaucracy is often a very frustrating business.

Especially when one the main figures in the disaster is currently an NHS commissioner hell bent on preventing appropriate change.
 
Just read the Daily Mail article on the NIH study latest results. Proof chronic fatigue syndrome IS real: Researchers probing poorly-understood illness find subtle differences in brains and immune systems of patients for the first time | Daily Mail Online

The description was as follows of the illness, which seems as simple English as the NHS website stuff does. Food for thought?#

"Symptoms of CFS vary per patient and over time.

The most common include an extreme physical and mental tiredness that doesn't go away with rest as well as problems sleeping and with thinking, memory and concentration.

Other symptoms include muscle or joint pain, a sore throat, headaches, flu-like symptoms, dizziness and nausea as well as a fast or irregular heartbeat.

At its mildest, CFS sufferers can perform everyday activities with difficulty but may have to give up hobbies and social activities to rest.

The most severe CFS patients are essentially bed-bound and may full-time care unable to feed or wash themselves or even go to the toilet unassisted.

One of the greatest challenges with CFS is getting a diagnosis due to a lack of a tests that can show a patient has it.

With no such test currently available, patients are forced to undergo diagnosis by process of elimination, with medics progressively ruling out other conditions until CFS is the only one remaining.

There is currently no cure for CFS. Treatment instead revolves around therapy, lifestyle changes and the use of some medications to alleviate symptoms."
 
Apart from the use of CFS, I think it's rather good. I'd change "extreme physical and mental tiredness" to "mental and physical exhaustion" and "treatment" to "management", but I could live with the rest.

(The Daily Mail ties me up in knots. I'm often infuriated by the political stances they take, yet their writing—and sometimes their whole journalistic approach to a particular topic—is often better than I see elsewhere. :laugh:)
 
bobbler said:
Just read the Daily Mail article on the NIH study latest results. Proof chronic fatigue syndrome IS real: Researchers probing poorly-understood illness find subtle differences in brains and immune systems of patients for the first time | Daily Mail Online

The description was as follows of the illness, which seems as simple English as the NHS website stuff does. Food for thought?#

"Symptoms of CFS vary per patient and over time.

The most common include an extreme physical and mental tiredness that doesn't go away with rest as well as problems sleeping and with thinking, memory and concentration.

Other symptoms include muscle or joint pain, a sore throat, headaches, flu-like symptoms, dizziness and nausea as well as a fast or irregular heartbeat.

At its mildest, CFS sufferers can perform everyday activities with difficulty but may have to give up hobbies and social activities to rest.

The most severe CFS patients are essentially bed-bound and may full-time care unable to feed or wash themselves or even go to the toilet unassisted.

One of the greatest challenges with CFS is getting a diagnosis due to a lack of a tests that can show a patient has it.

With no such test currently available, patients are forced to undergo diagnosis by process of elimination, with medics progressively ruling out other conditions until CFS is the only one remaining.

There is currently no cure for CFS. Treatment instead revolves around therapy, lifestyle changes and the use of some medications to alleviate symptoms."
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Not bad, needs to convey PEM & risk of harm at any exertion. It was probably written in less than five minutes too.
 
DigitalDrifter said:
Anybody else angry at this?

https://www.nhs.uk/conditions/chronic-fatigue-syndrome-cfs/treatment/
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Someone’s really trying to earn that slap* they have coming with that one aren’t they?

*metaphorical.
Also mods please note; yes I had to phrase it that way. It’s the gold standard to set it all out in plain English.

Sadly they simply don’t understand nuance or complexity in verbal or written language. The BPS friendly NHS staff are bit limited that way you see. It’s the training they re making shit up, acronyms and such, at such astonishingly high rates of productivity that all the other words and phrases fall out the back of their heads. Simply fall to ground, no time to stop and put them back in. Their ‘ Software’ won’t let them slow down long enough. Sad.



:rolleyes:
 
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V.R.T. said:
False hope did far more damage to me than my natural inclination to pessimism.
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Reads to me like they took what they offered other serious conditions removed all the parts where they offer treatment, support, adjustments, expecting anything that would mean you would recover and then were too lazy to even adapt the bit where staff ‘teach you to be positive about your recovery’ to something that fit ie wasn’t therefore deluded

Of course sadly we know where it’s really from: the lady doesn’t want to have to start from scratch and do what would be a different job altogether to the deluded 2007 guidelines that caused harm

and because they are from the ‘positive spinning isn’t harmful’ mis-psychology they think it’s all ok and not immoral. Positivity doesn’t help the patient just those without compassion around them who want them to shut up mentioning their illness until they are so ill they can’t bother them with their faces being in the street .

This sort of thing is, in terms of proper psychology, an aggression . That they sell it as if they think it’s help and expect others to play along is laughable
 
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