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

I wonder whether, if there is a supposed 'one day we will look back' that comes, this will actually be the case?

I know that for many years 'pre-ME' and 'when it was almost certainly ME' and 'after diagnosis, definitely ME' those who are around me would describe it as 'get really ill just from e.g. a trip, evening out, hard work thing' and so on' that others didn't end up getting ill from, just tired

When people go pale and seem to have something that looks like tonsilitis or flu and can't lift their arms is it really fatigue. And if we can't use the term 'PEM' than would it really be less appropriate to use the term 'ill' rather than 'fatigue'?

And I only of recent years thought it was ME/CFS I had because the daily symptoms from the rolling PEM where rheumatic, along with exhaustion - you can imagine which conditions along the lines of I was never investigated in but seemed far more close fits purely by actual symptoms.

Apart from the PEM-pattern. And that was 'not waking up', not in a can't get out of bed, or brainfog (in layman's assumptions) but literal can't wake and literal couldn't move nevermind get out of bed from x day's work (or indeed, to prove it wasn't stress-related, 'day out' when travelling).


As an awkward side issue whilst I'm remembering it:
The only thing that might overcome that strong PEM is adrenaline when basically metaphorically 'attacked' by unkind others (or sometimes you have to force yourself through due to committments and learn how to set 25 alarms and spend 5hrs dredging yourself to try and do it). I mention this because of the irony of these rhetoric-driven luddites who it was therefore unsafe to be around when in PEM, but were the ones who believed that by making it so they proved it didn't exist, and by doing such dangerous things also proved that whilst you are in PEM but standing and in fear of them it is 'something else' because you can't talk back to them as well as you might and they are being illogical so how can you respond anyway without also sounding so. ie your personality isn't 'the same'.

I think this phenomena of how those in serious PEM 'look' when being abused/under attack/treated inappropriately in certain conditions is perhaps what BPS has been 'toying with' as a game when they game up with their various ideas somewhat. You aren't going to be in a great state in this situation. And I imagine most people in a hospital situation and maybe many appts (due to not sleeping well because of your alarm clock the next day, travel and wait) will be in PEM due to the bright lights, noise and so on.

I wouldn't want to mention it, but many will either be in or come across such unkind and inappropriate situations and so one day (perhaps not in these descriptions) this does need to be elucidated as it is a phenemenon well-explained (ie its not just rational, it is caused by inappropriate behaviour of others to people who are ill) by the situation, but that has been twisted and used as if it is a 'symptom' pointing to something else entirely (the classic pretending what is elicited by inappropriate behaviour of others is actually a 'manifestation' by pretending 'I don't get it/see it') that 'primes' others. SO maybe one day it kind of needs to be tackled as pre-bunk/warning. Particularly given certain 'differential diagnoses' that might lurk. And put into terms like if you had a serious acute case of x, you wouldn't expect good functioning if someone came at you shouting at you and trying to force you to do y - whatever other illnesses that happened to be.

And then of course if done repeatedly eventually it leads to even the adrenaline not working.

It is so tricky when you imagine the various different dimensions of audience and the ways they might 'test' things or choose to perceive stuff. And the when in PEM and rolling PEM is tricky that way. It's going to relate to the situation and 'stimuli' too.

 

Copied post

This Mail article is a bit of a mash up from previous reports:


https://www.dailymail.co.uk/news/ar...unded-claims-ear-seeds-aided-recovery-ME.html

BBC Dragons Den under new pressure as advertising watchdog prepares to bring case over unfounded claims that seeds fix ME

• Read more: Dragons Den entrepreneur says producers recruited her for show

By CHRIS MATTHEWS

PUBLISHED: 00:54, 1 February 2024 | UPDATED: 18:28, 1 February 2024


Dragons Den is mired in more hot water as it emerged the BBC show is facing a probe from the advertising watchdog.

The show was previously hit by nearly 500 Ofcom complaints over entrepreneur Giselle Boxer's 'unfounded' claims that ear seeds aided her recovery from myalgic encephalomyelitis (ME).

Now, the Advertising Standards Authority has said the show had 'likely' broken ad rules, The Mirror reported...

[...]

The Good Thinking Society project director Michael Marshall received an email from the ASA this week that said there was 'likely to be a clear problem under the rules'...

Includes information on ME for which the NHS website is given as the source (my highlighting):

What is myalgic encephalomyelitis (ME)?

Also known as Chronic Fatigue Syndrome (CFS), ME can affect anyone, but is most common in women in their mid 20s to mid 40s.

The most noticeable symptom is extreme tiredness, but others include problems sleeping, joint or muscle pain, headaches, flu-like symptoms, and a fast or irregular heartbeat.

Treatments include cognitive behavioural therapy (CBT), specific exercises, or medication to target nausea, pain or issues with sleeping.

Source: NHS​

 

Moved posts

The NHS is stitching us up more and more with every single press article that quotes its trivialising and demeaning false description of ME and it's symptoms. And our Charities are silent and complacent about it.

We need a serious (and widely signed by ME specialists and researchers) complaint to the NHS Executive, that includes the issue of NHS England having as a Director the instigator of the deconditioning/behavioral model of ME and CBT/GET for ME treatment. There is a clear conflict of interests/loyalties from within the NHS England Directorship.

 

Agree and also agree with @Dx Revision Watch end of post and what has been highlighted in red bold as being the worst of the issues.

That includes suggesting

WHich is basically stating the ME/CFS is treated with CBT. Nevermind the 'specific exercises' nonsense.

The guideline was explicit that CBT doesn't treat ME/CFS, it doesn't treat the condition, I'm personally not sure that most symptoms are either well or best treated by it but as a sop of a line it has been mentioned as allowed to be said 'for some symptoms that might be listed as part of the illness'.

BUt I don't like how fast it 'not being a treatment' has been twisted actively into people forgetting that because it has been incrementally built on. I think a line in the sand putting CBT at the very end of this sentence as 'might be an option for some people for some symptoms (along with other possible options like counselling) they may or may not find helpful for managing' is as close as they should rightfully (and boldly) have felt they could push that too. In my book it really should never have been in there and I remember explicitly when it was realised it being said and excused as being 'for those who want it to deal with grief' or ie psychological co-morbidities

(so YES, it has been changed significantly from what it was put in there for and stated as 2yrs ago - which is not on, and I don't know why even 'allies' seem behind this?)

If we have learned one clear thing from the AcuSeeds issue - and one thing BPS and those who have written this inaccurately can't deny - it is that such accidental or inadvertent wording is definitely going to lead to supporters being given the impression 'their loved ones should improve or be doing these things'.

It also sounds like a fake way to inflate 'demand that wouldn't be there without the misleading information in the first place'. ie playing the system/gravy train

ie write something untruthful then watch people be forced by their supporters to ask their GP 'why aren't I being offered CBT and specific exercises' used as justification for ICBs to go and buy stuff that doesn't work.

 

What the NHS webpages for ME/CFS currently say:

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

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.


Energy management

Energy management is a treatment that aims to teach you how to make best use of your energy levels in your day to day life, without making your symptoms worse.

As part of this treatment you may be asked to monitor your daily activities using a diary, or apps on your phone.

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.

Graded exercise therapy (GET) – which aims to gradually increase physical activity levels - is not recommended for people with ME/CFS.

--------------------------

I can't see any mention of the term "post-exertional malaise" on the page for symptoms. What it does say is:

Extreme tiredness (fatigue)

The main symptom of ME/CFS is extreme physical and mental tiredness (fatigue) that does not go away with rest or sleep. This can make it difficult to carry out everyday tasks and activities.

Most people with ME/CFS describe their fatigue as overwhelming and a different type of tiredness from what they've experienced before.

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.

(I know there are existing threads about the wording of the NHS pages for ME/CFS, so I won't quote any more from these pages.)

 

And here is the big problem.

The guideline was absolutely explicit that no approach should be from a perspective of the condition being either 'false beliefs' or 'problematic thoughts' or 'caused by deconditioning'.

In fact that is the 'nub' of the instruction.

However, everyone knows that most people do not understand that CBT can be anything [it is delivering - it's just a mechanism for doing so] - so can contravene the guideline and harm as much as it might be something that isn't a treatment or useful but at least doesn't contravene the guideline.

SO by not having that explicit note (DO NOT engage with CBT that talks about false beliefs, increasing activity and so on) , and calling it a treatment, it is just as much explicitly contravening guidelines as it is not.

A Schroedinger's cat version?

Or more to the point: it would be like e.g. a guideline where people had been harmed by say aspirin suggesting that treatment was now 'drugs' OR 'drugs that treat headaches'

And in the case of ME/CFS and refusal to update their paradigm of so many clinics: ie the one bit of the guideline that is very clear (not from a perspective of either false beliefs or deconditioning) to change whatever they offer to not be from their false beliefs/wrong ideas about exercise or GET or sleep 'even just a bit' there is a big issue of not providing a warning of 'which flavour' of CBT and 'which flavour' of 'specific exercises'.

 

THis is a contravention by their - for some reason - choosing to not put the only confirmed 'management strategy' (Energy management) that was in the guideline at the top. The other two shouldn't be there - or should be in an 'and also' section at best.

BUt it is disingenuous and I cannot believe accidental (given the well-known primacy and recency effect meaning you often only remember the first and last of a list) the only true one is in the middle.

It is like some warped game of 'would I lie to you' (TV programme based on a game where someone tells two truths and one lie and you have to guess which one's which)

 

Absolutely fecking not! They need to do something about this. Why should people be encouraged to waste energy they don't have on therapy that might be useless at best and dangerous at worst, especially if the therapist knows nothing about PEM and starts encouraging them to "think positively"?

Either be explicit that the aim of the therapy is to help people stop feeling bad about doing less and saying No, or drop it altogether. Anyone with ME who wants conventional CBT can request it via the mental health pathway.

Go on then, NHS, name a few. I'll bet you a tenner and a jam doughnut that diagnoses some doctors don't even feel obliged to believe in feature heavily in the list.

 

I claim my prize; IBS is on that list

I've had CBT for my IBS on a group course.
By the last session we had stopped taking it seriously and had broken out the sarcasm.

Back in the real world, I saw a dietitian privately as the NHS one was utterly clueless and she introduced me to the low FODMAP diet. Which basically eliminates all the foods that irritate the gut in people with IBS. I have found it extremely effective.

Unlike the CBT.

I got IBS (pre ME) after a very nasty stomach bug that went round our office, and my guts never recovered.. Almost like a post infection complication where my body's functioning did not return to normal... Curious. /Sarcasm off.

 

Interesting I can remember an outburst from a GP a couple of years ago re IBS and lowFODMAP . He had been so sure that IBS was psychological and was angry that in supporting a patient who wanted to try the diet , was gobsmacked to find it worked . He felt hoodwinked . Wish I'd saved it.

 

Has no evidence-base in the way it is stated. It is worded in a way that will be read like if people took up a dancing class they might find they improve long term. IN their condition, and that is untrue.

It is just using the 'difficult to prove it isn't' principle that 'you can't prove there aren't the odd one or two, because said one or two might say they are fine and then crash a year later', but you can get them to say it at the time (and yes they will probably believe it until they've done that cycle enough times).

OR if you did have this theoretical person who had no obligations at all and was very mild and maybe had some other comorbidity then a bit of a stroll is something they like. It doesn't mean it is right to turn it into this in a guideline where most will be breaching their threshold with the amount of exertion just keeping the show on the road doing essential things - and that is why most ended up at the doctors, alongside the athletes who found they couldn't 'train or perform like they used to be able to'.

This is very bad, and I knew when the new Nice guideline wasn't stopped or changed that the BPS and old-staff would target PEM and tryign to muddy the definition of it. I was correct and it seemed to particularly be CHalder, and - I think - people like BACME doing it.

Here they have not described PEM and so they have not - I agree @Dx Revision Watch - described ME/CFS in this webpage.

 

It is interesting as a general conundrum of the general caveat of saying because someone has ME/CFS - but without any more caveats (such as length of time, and extent of that experience ie different severities and life stages and so on - as well as do they genuinely know and hear many others with it) - qualifies them individually on its own to represent or be an expert on.

Or to tick the box that it is claimed to tick by putting them in said situation (which is where the error lies, alongside not providing access to the tools that enable them to tick that defined claim).

I use that 'being qualified' as an official term you always have to have in mind when doing market research. Checking that the question you are asking is one that the person you are asking 'is qualified to answer' is basic hygeine checks.

In a simple survey it is a case of defining on the front page more precisely e.g. that you want someone to have actually used the shop in the last year. And not asking a question about friendliness of staff without one before that checked they had met said staff. You can't ask if a course provided you with the tools you needed for their jobs in their chosen career to e.g. students who have not yet started their jobs.

It sounds like I'm digressing, but my point here is that it seems there is a need to check that people are given access to the tools they require to do the task they have been asked to do. Here, they are being faced with the 'does this cover all those with ME/CFS' (they might be being given the impression) or is it 'just speak to your own experiences' and one of the two is the 'some'?

In many cases with ME/CFS it isn't the 'question' that needs to change but ensuring that said people can demand and be provided the resource they need to answer it. And where that isn't there, to define what that would ideally be (and write it down so it is on the 'to do list' in future, but also the information is caveated) and find the nearest proxy + caveat. It's the 'limitations' section of the science report at school.

But if instead there are other 'influences' who might have conflicts (whether present or just we are heavily aware of them) and we don't have a phone tree of said people (lots of patients who can speak eloquently and accurately on their experience to reassure they don’t know anyone who benefitted from x, to counter that rumour of ‘some’) to back us up and give us confidence that 'maybe there are some' is just mind-games or the never never then it would become untenable.

Plus of course the lack of good research on % who recover in that 'key first few years' - and what was required with that (which many don't or didn't get access to) - muddies things further. BUt for some reason people aren't allowed to write a big bold line at the bottom of these things making such 'needs' clear etc.

It's not quite as simple as it might seem and some of it comes from confidence and care. But also the multiplicity of voices and rhetoric in the area thrown at people can very much affect and gaslight these things (which those with ME/CFS have and have had wayyyyy more than nearly all other conditions and people on).

If you haven't consulted with and heard enough 'others' and seen them up close then you end up falling for myths when filling gaps of 'maybe others are different' or 'maybe others are the same'. We all politely caveat when we speak to others with the condition in order to not invalidate each other as course anyway.

 

It's a topic that comes up with PPI groups too and lots more. And it is pertinent. Particularly pertinent for ME/CFS because of the internalised gaslighting that was pushed for so many years, and the very different situations and level of support vs their threshold different generations (timing of diagnosis and therefore 'treatment' they've been used to, because there were differences even with the lack of treatment over the years, between what and how extensive that was in different 'times') and individuals could have been in.

And because of the various tactics that have had us all making assumptions about 'others with the condition'.

One biggie BPS wanted to push after the Workwell stuff and then the guideline is some rumour that there was such a thing as 'what about the many who have CFS/ME' as if rewording everything to PEM meant there was some fictional, assumed group that would be left - and I think it would be easy for many with ME to suck up that idea that there are lots of misdiagnosed and just a small minority with real ME but my experience is that isn't the truth.

There might be those with chronic fatigue dumped into clinics that do fatigue and persistent symptoms but that's a different issue.

There are things like this that they know, and we know, are being made 'implicit' in all of these tasks (without proof), and at the same time somehow getting away with also 'not acknowledging' it which blocks it being properly tackled and just answered properly by someone independent (rather than a clinic that is recruiting 'fatigue' rather than ME/CFS people)

This is pertinent as its obvious they know it needs to be kept unticked - because they are basing their whole 'recovery' tactic (recovery norway stuff) of anecdote-based marketing and claims on it not being done.

 

Reading through the powerful comment at the bottom of the following thread: Maeve Boothby O'Neill - articles about her life, death and inquest | Page 2 | Science for ME (s4me.info)

Which describes the 'GET' and energy management 'understanding' that one individual experienced.

It makes it clear that it seems most who are in 'energy management' have a fundamental misunderstanding of the subject.

In fact, my experience of late is that it is worrying when you hear terms or publications being mentioned such as 'how to manage energy levels'

That - energy 'levels' - is NOT 'energy'. Or interpreted accurately by most 'authors' as 'how to manage your bucket of energy'

Instead it is some slightly warped distraction from those who do not have the direct experience (I say this because you cannot have had the direct and extensive experience of 'self-experiment' I, or the author of the link above had to write this or miss it this badly). To the point I worry they might confuse someone with diabetes having a cup of strong coffee 'feeling more lively' with having 'managed the condition'.

It's a nonsense that poor trodden-on pwme would have to use more energy than they can waste trying to fight the rhetoric on, that should in a reality-based world have been thrown out based on it 'not being the topic' and 'not holding water'.

But I wouldn't fancy being stuck arguing logic and sense with the hordes who've released themselves from such chains and become true believers. They've done the classic 'reframe to a question you'd rather/can answer' when you don't know what you are doing, or just because you'd prefer or think you've something great to offer.



And hilariously it seems justification they often cite is based on a complete and utter misunderstanding of the HPA axis. For which they've not only been sold a pup, but they've been sold something for which the circle contradicts itself half way through.

Said people tend to simultaneously be told to believe both: "cortisol going up is bad, relaxation and balancing in some sort of strange made-up idea is the fix'

and: "people will have more energy if they push themselves, thereby increasing their cortisol" (although in ME/CFS they fail to spot this is adrenaline they are forcing to be engaged anway too). Oh and they don't 'have more energy' - unless you want to interpret it as that meaning - they feel as if they do temporarily. Although here is the thing: the patients eventually have to get wise to this pup, because they are at home with themselves when the aftermath hits, and don't get to pretend it doesn't.


It is so bad and deluded I would bet a significant amount of money not one of them when asked to explain would get to the end of their conclusion without pretending the phone rang, or 'they just forgot the next bit' or 'must pick up the kids' by 80% in.

It borders on a combination of grandiosity of 'how your words can make others reality untrue/change' belief with a 'you can eat your cake and have it' BS. I find it so hard to watch because there is no aspect of it where I can believe any one of these people can explain their 'diagram' and make their circle complete it is so bonkers.

It's effectively selling a form of madness ironically where it is just 'a general tool and concept of telling people to reframe when it doesn't work for them' ie deny reality. But they sell it under the DARVO of claiming what they do is 'positive'. OK.



For this reason I'm not sure such people have the skills or the personal qualities that even after they've been deprogrammed - and they need to be for their own sake to be able to function in a world of reality and do other roles - they are appropriate to be anywhere near people 'who don't have energy'. They are just people living in a perception thing. Which is the last, most damaging type for such people with actual limitations need to have around them.

But what do you do when if you use the term 'energy management' it gets sent to this department? And all they produce is that angle?

EDIT: so the NHS authors are correct in one thing: it mightn't be what the treatment should be, but it is what these 'supply-side' people are going to lump on patients currently 'in the name of/under the claim of'?

It does seem like we need some stepping in, with Nice and some others backing up that really the whole thing just needs to remember that underlined emphasis for any treatment in the guideline (not at all from any angle to be 'false beliefs' or deconditioning' - rehab if they want to rename it and pretend).

It mightn't fit with the standard format of NHS pages, which are used to having 'treatments' and not things that claim to be but actually aren't (must put something in the box hey? no!) but maybe this one-liner is where it needs to be. And there are places like physiosforME and workwell and so on that links can be provided. And they put a one-liner saying for people to check carefully if there is anything along these lines in their area, but very few do (and to watch out for 'other stuff')?

It is a genuine massive issue.

 

Absolutely on the following:

And I wonder whether this 'area' (in the specific of CBT/what the behavioural paradigm encourages, and probably the 'general' of inadvertent daily behaviour encouraged that undermines us surviving) is one that could be done well by short videos.

It might be a stinker of an idea, but either way as I realised expanding on this certainly would be side-tracking I've put a thread for this sort of thing elsewhere.

 

The glorious irony is that some people with ME might benefit from help to change the way they think and behave. For instance, it's particularly hard for recently diagnosed people to deal with the guilt of failing their kids/partners/elderly relatives, not being able to support their friends, not being able to pull their weight at home, not being able to earn a living, not upholding their own standards, yadda yadda yadda.

That's exactly the sort of thing this kind of therapy could help with, as part of the process of learning pacing. But that would involve admitting that ME is real, so at the moment it's still the therapists who need their thinking changed.

 

So if you think - as ICBs/ICSs and Nice and so on do - along the 'cost effectiveness' model basis then e.g. one appointment with a decent dietician and it is significantly improved (and all the 'reduced GP visits' or other claims made alongside that)

vs some CBT kingdom netting a whole course's worth of £££ for no improvement (and probably happily says they just need to sell them more CBT as it clearly wasn't enough if it didn't work?)

.... although the fact many can't then look the same GP that sent them in the eye again with trust for quite a while I imagine (?) .... is interpreted the same way on the 'reduced visits' because it's a crap measure vs the health service actually having to properly monitor so GPs are independently chucking out nonsense that doesn't work.

I think there needs to start being a campaign (given you noted the group sentiment of no longer being able to take it seriously by the last session, but I bet too many - being Brits as we all are - felt compelled to not give them a complete big fat zero on the feedback form, not realising it would be used instead as proof of effectiveness) to all end-users to start being honest.

A poster, or TV ad, that focuses on pointing out to all UK citizens how their answers to these things will directly mean more money is spent on the same thing:
so to understand and think of it as a 'vote' for or against that treatment (and more money being directed into it instead of something else - like cutting edge research) and not a 'how was your server today' (question as if it's a corporate company keeping an eye on their barristas remembering to look smart and ask 'how was your day' and you feel like they'll be sacked if you don't give an 8/10).

and to pitch it almost as a "better research and treatment moving forward needs/depends on you being honest" type thing. With someone hesitating over whether to circle an 'honest 5/10' or 'polite 7/10' whilst looking into Esther's pleading 'just want to help/so enthusiastic' eyes..

and demand better methods of measuring effectiveness. And probably independently from them marking their own homework, having designed what questions they'll allow to be asked. - so maybe asking people to report questionnaires where they are 'how was your server today' and nothing else...?

Perhaps Healthwatch is the method/partner this should be done through? Although I've heard of other patient-led orgs (general rather than ME-specific)

 

Agreed that paradigm would be more likely to help some.

Ironically I'm not sure the generally adopted manner of CBT would work for many/most without both filtering (of those with cognitive issues/situations that mean they don't have the spare and so on) and someone who has ME actually adapting it for purpose.

I myself am doubtful that if you get cognitively tired to the point someone else is 'pushing you around' - which I certainly do - then the whole theory behind CBT changing someone's cognitions in the way the original model suggests stands.

A bit like someone who is trying to impress being stuck in a dance class and someone thinking they've managed to learn/been effectively taught the steps when they just spent the entire time trying to appear like they were keeping up and not fall over.

 

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.

 

Utterly misleading to imply that there is a single evidence-based treatment for this.