Care and Support Plan template free to download, Action for ME

[bobbler]

I know that people can and do learn new things, and I don't expect people's expertise to only be defined by a qualification they gained years ago. But, I think Gladwell's PhD topic and subsequent promotion of TENS says a lot about the way he thinks. The evidence for the effectiveness of TENS is extraordinarily like the evidence for the effectiveness of GET and CBT for ME/CFS. That is, there is no good evidence. We discussed it here:
United Kingdom: ME Association news





Dr Gladwell presumably spent three years evaluating the evidence base for TENS and concluded it was wonderful. If ME/CFS charities want to look and sound professional, they should not hold people like this up as experts in ME/CFS.

Thanks for posting this. I think it is relevant to the approach to research and potentially vulnerability to confirmation bias (the odd person raving that 'they'd be lost without their TENS machine doesn't mean those people aren't also taking painkillers or other things they require, and doesn't extrapolate to all the people who don't come back to the person who is telling them to keep trying it a different way).

My main mentioning was because to be able to register for British Psychological Society accreditation then degrees have to cover quite a specified list which is broad (and certainly not limited to just the clinical or health psychology) and statistics/experimental design must be a significant proportion too.

As far as I'm aware psychology as a degree is misunderstood and should have a very strong focus on methodology because as I remember on one of the first lectures we were told that the thing about studying the brain is that you can't do it / get much out of finding out what does what or how it works by looking at an autopsy.

And because even if you ruled out all the other factors (social in particular) then most tasks are complex ie layered with regards to parts of the brain that they involve.

Anyway, I got the impression that most in the science are not impressed with personality research. And maybe clinical - I guess it is the residue from its context - is the only one that is using correlations. Even in health psychology many years ago you'd have the mention of back in the day talk of 'Type A, B' etc and how they've been 'moved past'.

The point is that all these different areas and themes I guess were supposed to teach different lessons and approaches and where things have gone wrong so that you are approaching them critically ie looking at their different methods rather than learning theories off by heart from Freud, Jung, Piaget. It was about whether any of those ideas were testable. You can't start jumping in using MRI scans without having some sense of the layers involved with different tasks and eg the make-up of the visual system/eyes and individual differences and so on. Stuff such as game theory, which I imagine being aware of would be key in how you design tasks too.

There was the scandal of false memory syndrome. Heck there have been a lot more.

 

[bobbler]

Anyway I note this because it flags a few issues up for me:

1. That doesn't even qualify you to begin messing around doing the cliche people assume such degrees are about of 'analysing people' in fact it teaches you the opposite and how intrusive it is. And how early days things are with saying you are sure on any thing without going at it methodically from lots of different angles. You have to do more training in a specific area and get accreditation and keep it to be allowed to do any of that stuff around anyone.

Be it a counsellor, psychologist etc. it used to be there was no such thing as a 'CBT person' because really that needed to be a psychologist who understood and could keep monitoring whether it was the right diagnosis and the right treatment (including the paradigm fed into that delivery mechanism as well as the different modes of CBT - some are from the behaviour therapy tradition, others from the cognitive therapy it's quite a different thing actually). Technically I don't know when people narrowly qualified only in CBT became allowed to diagnose, or say a condition itself is 'better'.

Could you imagine what he would think as a physio if I (and loads others with no training) did a few 2-day courses on the lingo of physio to get people to eg help their 'think of your posture'. Then did a PhD in eg TENS machines for a very specific type of pain. Would he think that would make me safe and negate all the things put in place to ensure safety in the physio-patient relationship if I started to use my 'nous' to tell people all sorts? Then wrote documents for whole patient groups to be read by their GP, employer and 'other agencies' suggesting certain exercises or whatnot.

But didn't have any professional registration for those areas? Of the kind making sure that the responsibility and safeguarding issues are in line with what I'm doing. I don't think hiding or embedding this stuff instead of being upfront and getting consent makes any physio or OT entitled to do any of these manipulative techniques and frankly I'm shocked at hearing about sliding in motivational interviewing and the like to all sorts of professions as if it also isn't that. With likely side-effects on mental health from feeling your free will/informed consent has been skirted even if it is sold to 'speed up getting the job done'.

Worse it is being imposed on people without mental health issues who haven't sought any of this or given consent. Not checked it 'fits' and someone isn't the opposite. It's just been embedded. Assumed it's 'all good'

Noone is measuring the long-term impact of all this propaganda to those who surround them but the IoM/academy of medicine report on stigma makes the harms clear.

 

[bobbler]

What I can't get past with this guy is the idea he is selling Crawley and White's (and his) line of 'the issue is delivery isn't being monitored' as if it failed because it wasn't being monitored. The idea 'people weren't doing it properly' and following instruction.

It needed to be standardised. Because it was the 'how' not the 'what'

When we now know the reason Crawley et al (2013) got no result on the physical function measure but PACE did (when it was basically the same trial) was because PACE didn't do their data properly. And changed all sorts that made it pretty null and void as a trial.

SO we now know, and they and we knew many years back that PACE didn't get a different result and there was no useful impact on physical function there either. Which screws the argument that 'the how was different'. THe results were the same anyway - it doesn't work.

And if it hadn't hidden that, the the conclusion of Crawley et al (2013) would have had to be 'none of the arms of the trials have any affect on physical function' they just move the dial slightly on the measure vulnerable to all sorts of pressures by less than would be accounted for by the pressure to 'please' someone you might perceive could be rather vindictive in ways that could ruin you given letters to GPs employers etc.

So doing more of that whilst playing about with controlling and measuring specifically the 'delivery' is like a psychology experiment in perfecting bias and maximising the impact of those pressures one would normally call 'error margin'.


And then basically making up his own stuff along with BACME instead of using the new guidelines as the starting point from a blank sheet of paper and seeing how they can fit in and retrain themselves to deliver something close to the spirit of that. None of this dysfunction BS is in the guidelines

Where is the mandate for any of this?

 

[bobbler]

Thanks for posting this. I think it is relevant to the approach to research and potentially vulnerability to confirmation bias (the odd person raving that 'they'd be lost without their TENS machine doesn't mean those people aren't also taking painkillers or other things they require, and doesn't extrapolate to all the people who don't come back to the person who is telling them to keep trying it a different way).

My main mentioning was because to be able to register for British Psychological Society accreditation then degrees have to cover quite a specified list which is broad (and certainly not limited to just the clinical or health psychology) and statistics/experimental design must be a significant proportion too.

As far as I'm aware psychology as a degree is misunderstood and should have a very strong focus on methodology because as I remember on one of the first lectures we were told that the thing about studying the brain is that you can't do it / get much out of finding out what does what or how it works by looking at an autopsy.

And because even if you ruled out all the other factors (social in particular) then most tasks are complex ie layered with regards to parts of the brain that they involve.

Anyway, I got the impression that most in the science are not impressed with personality research. And maybe clinical - I guess it is the residue from its context - is the only one that is using correlations. Even in health psychology many years ago you'd have the mention of back in the day talk of 'Type A, B' etc and how they've been 'moved past'.

The point is that all these different areas and themes I guess were supposed to teach different lessons and approaches and where things have gone wrong so that you are approaching them critically ie looking at their different methods rather than learning theories off by heart from Freud, Jung, Piaget. It was about whether any of those ideas were testable. You can't start jumping in using MRI scans without having some sense of the layers involved with different tasks and eg the make-up of the visual system/eyes and individual differences and so on. Stuff such as game theory, which I imagine being aware of would be key in how you design tasks too.

There was the scandal of false memory syndrome. Heck there have been a lot more.

2. The attitude and approach of those who might have been the firsts in the areas of only being CBT show themselves up I think in only focusing on whether whatever is being rammed down the neck is being effectively forced in, and not whether it's good that it is. Which was one of the points of those broad bases - to drill in that you can do harm and then measure the wrong thing. To understand the Research Question vs design/method vs the questions and draw the line to keep checking those answer what you claim/think you are - although that part is not unique to Psychology.


3. 'doing psych anything' even if it is inadvertently gaslighting people based on a paradigm is a power imbalance that I don't think people who aren't being regulated continually with supervisions to check for issues to do with those vulnerabilities are qualified or registered for. Just because you 'embed' it and don't have a professional psych registration to lose shouldn't entitle anyone to write things about 'those people' inferring anything. Or indeed to do or invent any of these things.

So if the new guideline was clear that the old guideline narrative and spirit needed to be binned, which should certainly include all the slights they got away with when they were able to delude themselves it was pwme who were deluded with false beliefs and not them deluded (which I think is the source of the issue) and firmly said CBT was only an 'appendix' for those with eg grief: outsourced I assume to the person who is specialist in that.

Well this new material they've invented, call it by new names if they want, it's a paper rushed out by some undergrads based on theory - they are trying to slide untested therapies or do a sly move delivering things that are shown to be harmful conversion courses forcing their power imbalance onto people in a coercive situation because effectively it's 'well one of us has/had false beliefs', and they don't want it to have been them.

Noone either in BACME or outside of it has the right to impose something they made up singly or collectively to help their cognitive dissonance as if it is tested as either safe, needed, or permitted. CERTAINLY any psychology professional would not be allowed to just start making up their own therapies and start delivering them. Not without it being a proper trial with ethical approval and being measured for harm as well as whether it is of use.


It's not the old days of the psych departments looking at mind-control and re-education in the basement of some campus building, being allowed to skip the bit where they have to report their ongoing 'very effective techniques' sending some people completely off the rails.

And it's not the days where just because you run a clinic that is supposed to be educating on the limited energy envelope of ME/CFS and following the detail in the new guidelines to write letters regarding adaptations to those it concerns but you feel your latest thing you are in to 'might really be nice to offer' you just throw it in and start doing mostly that instead.

These people should be sticking to their knitting of what they are professionally qualified and properly supervised in only and even then only in the context of it is listed as part of what is required for all those with ME/CFS.

What is he or any of them doing talking about all of this crud? personality in particular. From a physio who did a narrow PhD into TENS (not for ME) I'm struggling to see even a dotted line to a lot of the material.

 

[Trish]

I think a key problem with the way Gladwell carries out research and invites patient participation in it is that he uses his own patients from his clinic as the participants. As a convenient group of willing patients to work with, ones from your own recent group ME/CFS clinic's 'treatment' must be hard to beat.

The problem which he doesn't seem to recognise is that people new to being diagnosed and offered advice and support and who have stuck with whatever he provides for his groups of new patients to the end of the course, are likely to be
a) the most mildly affected who are able to sustain attendance at several sessions
b) those most keen on whatever they are being told to do, such as diary keeping, and who still believe the explanations of cause, definition of PEM, and approach to pacing and pacing up they have been taught.
c) likely to produce feedback and documents such as this one that are similar to those the clinician has provided with just minor tweaks
d) enjoy working cooperatively with the clinician who they are keen to please as they are grateful for diagnosis and support provided so far

Thus a document like this one can be claimed to be the work of a collaboration with pwME, while just regurgitating what the individual clinician has told them. I don't blame the patients who contributed, I blame the clinician for misusing his patients' goodwill to promote his own ideas, and perpetuate his non NICE compliant approach.

 

[Trish]

Here's an example of Gladwell's research on ME/CFS where he used patients from his own clinic, and showed little understanding of the effects of activities on pwME.
Evaluating the ability of patient reported outcome measures to represent the functional limitation of people living with ME/CFS, 2023, Jones, Gladwell

It really worries me that AfME and the MEA are giving Gladwell's work so much prominence while he clearly had very little grasp of ME/CFS at all severity levels, and of how pwME need services to be run.
This document seems to be to be designed with the intention of perpetuating the provision for mild ME/CFS he's been running for years.

 

[MrMagoo]

I think a key problem with the way Gladwell carries out research and invites patient participation in it is that he uses his own patients from his clinic as the participants. As a convenient group of willing patients to work with, ones from your own recent group ME/CFS clinic's 'treatment' must be hard to beat.

The problem which he doesn't seem to recognise is that people new to being diagnosed and offered advice and support and who have stuck with whatever he provides for his groups of new patients to the end of the course, are likely to be
a) the most mildly affected who are able to sustain attendance at several sessions
b) those most keen on whatever they are being told to do, such as diary keeping, and who still believe the explanations of cause, definition of PEM, and approach to pacing and pacing up they have been taught.
c) likely to produce feedback and documents such as this one that are similar to those the clinician has provided with just minor tweaks
d) enjoy working cooperatively with the clinician who they are keen to please as they are grateful for diagnosis and support provided so far

Thus a document like this one can be claimed to be the work of a collaboration with pwME, while just regurgitating what the individual clinician has told them. I don't blame the patients who contributed, I blame the clinician for misusing his patients' goodwill to promote his own ideas, and perpetuate his non NICE compliant approach.

Yes it’s total power imbalance

 

[Trish]

I'm in the process of drafting a letter.

I have just looked at the survey AfME have provided for feedback.
https://forms.gle/jVrwfmEWWd3yjA6g6

It's heavily skewed not to allow criticisms of the content or purpose of the so called care and support plan.

Here are the questions:
1. What about this resource works for you?
2. What about this resource could be even better?
3. What if anything is missing from this resource for you?
4. Please let us know if you are (tick all that apply):
Someone with M.E.
A family member or friend caring for someone with M.E.
A professional supporting someone with M.E.
Other:

That's it, no invitation to critique.

 

[Hutan]

Here are the questions:
1. What about this resource works for you?
2. What about this resource could be even better?
3. What if anything is missing from this resource for you?

That's a manipulative survey. Shame on them, when they know that the patient group they serve has been harmed by manipulative surveys.

 

[Amw66]

I'm in the process of drafting a letter.

I have just looked at the survey AfME have provided for feedback.
https://forms.gle/jVrwfmEWWd3yjA6g6

It's heavily skewed not to allow criticisms of the content or purpose of the so called care and support plan.

Here are the questions:
1. What about this resource works for you?
2. What about this resource could be even better?
3. What if anything is missing from this resource for you?
4. Please let us know if you are (tick all that apply):
Someone with M.E.
A family member or friend caring for someone with M.E.
A professional supporting someone with M.E.
Other:

That's it, no invitation to critique.

number 3
compliance with 2021 NICE guideline

 

[Kitty]

Here are the questions:
1. What about this resource works for you?
2. What about this resource could be even better?
3. What if anything is missing from this resource for you?
4. Please let us know if you are (tick all that apply):
Someone with M.E.
A family member or friend caring for someone with M.E.
A professional supporting someone with M.E.
Other:

1. The name and address section.
2. It should detail the care and support I will be offered.
3. Medical care and social care.

 

[JemPD]

1. The name and address section.
2. It should detail the care and support I will be offered.
3. Medical care and social care.

Oh Kitty you do make me howl sometimes
I needed that!

As with most things its funny to me because its so TRUE!

this is all that can be said! although i'd make 1 small edit...

2. It should detail the care and support i will be offered, (including a plan for how it will be delivered).

 

[MrMagoo]

The survey may be weasel-worded however The response boxes had plenty of room for me to type the concerns I have!

 

[Trish]

I've posted a draft letter to AfME and will welcome feedback in the next few days:
https://www.s4me.info/threads/draft...upport-plan-document-by-peter-gladwell.39853/

 

[Nightsong]

Perhaps something worth mentioning is that the notion of a "boom and bust" cycle is not original to the CFS literature; it is clearly based on a concept from the chronic pain literature where it is more often referred to by different names such as the "overactivity-underactivity cycle" and the "activity-rest cycle". The earliest clear reference to a boom-and-bust like concept that I have found to date is the 1988 book "The psychological management of chronic pain" although some aspects of it go back to the "Exercise and the increase in activity level" chapter of Fordyce's 1976 book "Behavioural methods in chronic pain and illness" (ch15, pp168-183), which set the tone for a behaviouralist approach to chronic pain. Like other aspects of the behavioural and cognitive-behavioural formulations for chronic pain, it has been applied to us absent robust and methodologically sound studies proving that the phenomenon exists to a significant extent in pwME.

 

[bobbler]

Perhaps something worth mentioning is that the notion of a "boom and bust" cycle is not original to the CFS literature; it is clearly based on a concept from the chronic pain literature where it is more often referred to by different names such as the "overactivity-underactivity cycle" and the "activity-rest cycle". The earliest clear reference to a boom-and-bust like concept that I have found to date is the 1988 book "The psychological management of chronic pain" although some aspects of it go back to the "Exercise and the increase in activity level" chapter of Fordyce's 1976 book "Behavioural methods in chronic pain and illness" (ch15, pp168-183), which set the tone for a behaviouralist approach to chronic pain. Like other aspects of the behavioural and cognitive-behavioural formulations for chronic pain, it has been applied to us absent robust and methodologically sound studies proving that the phenomenon exists to a significant extent in pwME.

Brilliant, useful to be able to note this.

The other issue I have with it, and the behavioural approach even using the term 'pacing' instead of energy envelope is that it doesn't acknowledge or understand that most have things they have to 'save up for' and these are things that normal people would take for granted such as shopping or work even in the wellest, not going to a theme park. For those iller it is basic hygiene.

I find it offensive having people who have reframed their mindset to infer life is easier than it is in order that their simplistic, patronising solutions in their head 'work' and you are being 'debbie downer' for saying otherwise when it is quite the opposite: it is the peak of realistic optimism to get done what I got done in my lifetime given my limitations compared to others.

I find it unhelpful that instead of offering the general principles as a starting point and then having ears open in order to hear the human being in front of them say what 'doesn't fit' in order to find what could be adapted in order to make those basics possible due to other things having less impact they fill all of their sheets with stuff about 'the mind'. Which just covers up what they perfectly well could be offering but aren't.

I also remember questions from physios for ME where they asked about rolling PEM and heard about radical rest and how we have to use it for things like a day at work, or a big task; and asking about sleep reversal and whether people just let it roll back round or do you try and 'do something about it' and that it the sort of thing that needs to be heard and understood, not assumed. There might be some for whom eg on the latter they feel better if they cut their rest short to get back on track, but that makes everything worse for a good proportion. So they need to be researching properly the advice the clinics are giving out.

But not the way they think research goes where they are led by their own theories but proper science where they realise they have confirmation bias due to their offering being supply-led and start to want to recruit and hear an externally valid representative group of patients to understand the actual condition.

I feel so sad that even if there was no change in funding/resource just people with a different mindset and understanding of methods all of the information out there could change our world at least. But instead we have things that undermine and we are accused of somehow being impolite for pointing out how injurous it all is, rather than everyone should be angry for us because it is one thing bringing it up awkward if someone 'apparently had best intentions' and it was early days and they need to be made to have the conversation vs what has been something completely different and deliberate ignore, ignore, ignore to not hear because it isn't in their interests.

The one thing the charities can do, overnight, is require these individuals to give us our rights back, remove the tropes, remove the misinformation and be firmly told these inferences they well know are harmful/injurous and must stop. And to start working with people who will work with patients who know how these things could be straightforwardly compiled to tell others round us how they can help and support, and stop rubbish that doesn't, gets in the way and exhausts us having to battle with conversations about mind-body and stop interfering with our identity - even if they can't 'cure' out illness.

Pushing it so that the patients continually have to comment on stuff that would wind anyone up exhausting them just to stop it and never actually getting to move things forward because it never knocks it on the head, instead of them being the advocates telling them 'no' and getting people who will do things the right way in a way that makes sure it is accessible to getting the most qualified patients in to design things that fit the needs of the illness at different stages

 

[MrMagoo]

Brilliant, useful to be able to note this.

The other issue I have with it, and the behavioural approach even using the term 'pacing' instead of energy envelope is that it doesn't acknowledge or understand that most have things they have to 'save up for' and these are things that normal people would take for granted such as shopping or work even in the wellest, not going to a theme park. For those iller it is basic hygiene.

I find it offensive having people who have reframed their mindset to infer life is easier than it is in order that their simplistic, patronising solutions in their head 'work' and you are being 'debbie downer' for saying otherwise when it is quite the opposite: it is the peak of realistic optimism to get done what I got done in my lifetime given my limitations compared to others.

I find it unhelpful that instead of offering the general principles as a starting point and then having ears open in order to hear the human being in front of them say what 'doesn't fit' in order to find what could be adapted in order to make those basics possible due to other things having less impact they fill all of their sheets with stuff about 'the mind'. Which just covers up what they perfectly well could be offering but aren't.

I also remember questions from physios for ME where they asked about rolling PEM and heard about radical rest and how we have to use it for things like a day at work, or a big task; and asking about sleep reversal and whether people just let it roll back round or do you try and 'do something about it' and that it the sort of thing that needs to be heard and understood, not assumed. There might be some for whom eg on the latter they feel better if they cut their rest short to get back on track, but that makes everything worse for a good proportion. So they need to be researching properly the advice the clinics are giving out.

But not the way they think research goes where they are led by their own theories but proper science where they realise they have confirmation bias due to their offering being supply-led and start to want to recruit and hear an externally valid representative group of patients to understand the actual condition.

I feel so sad that even if there was no change in funding/resource just people with a different mindset and understanding of methods all of the information out there could change our world at least. But instead we have things that undermine and we are accused of somehow being impolite for pointing out how injurous it all is, rather than everyone should be angry for us because it is one thing bringing it up awkward if someone 'apparently had best intentions' and it was early days and they need to be made to have the conversation vs what has been something completely different and deliberate to not hear because it isn't in their interests.

The one thing the charities can do, overnight, is require these individuals to give us our rights back, remove the tropes, remove the misinformation and be firmly told these inferences they well know are harmful/injurous and must stop. And to start working with people who will work with patients who know how these things could be straightforwardly compiled to tell others round us how they can help and support, and stop rubbish that doesn't, gets in the way and exhausts us having to battle with conversations about mind-body and stop interfering with our identity - even if they can't 'cure' out illness.

Pushing it so that the patients continually have to comment on stuff that would wind anyone up exhausting them just to stop it and never actually getting to move things forward because it never knocks it on the head, instead of them being the advocates telling them 'no' and getting people who will do things the right way in a way that makes sure it is accessible to getting the most qualified patients in to design things that fit the needs of the illness at different stages

I think pacing has to be called “try to pace” it’s only ever an attempt. and actually it is managing the tiny amount of energy, as well as you can, in the hope it prevents deterioration.

Pacing literature is toxic wellness. It sounds as if all you need to do is pace, which is easy, and maybe your symptoms will reduce, if you feel up to it then you can increase…

First of all, pacing is really hard. And you need to think about it, yourself, how you’re feeling, all the time. But don’t get obsessed with it. Notice what your body tells you! but practice mindfulness. Don’t dwell on pain, distract yourself but don’t forget you have to pace. Record your symptoms so you can review your health, but don’t focus on symptoms all the time as it can get you down. Don’t overdo it, but don’t do too little.

 

[JemPD]

I think pacing has to be called “try to pace” it’s only ever an attempt. and actually it is managing the tiny amount of energy, as well as you can, in the hope it prevents deterioration.

I agree, it's continuous impossible juggling

First of all, pacing is really hard. And you need to think about it, yourself, how you’re feeling, all the time. But don’t get obsessed with it. Notice what your body tells you! but practice mindfulness. Don’t dwell on pain, distract yourself but don’t forget you have to pace. Record your symptoms so you can review your health, but don’t focus on symptoms all the time as it can get you down. Don’t overdo it, but don’t do too little.

Oh this, just so much THIS.

 

[bobbler]

I think pacing has to be called “try to pace” it’s only ever an attempt. and actually it is managing the tiny amount of energy, as well as you can, in the hope it prevents deterioration.

Pacing literature is toxic wellness. It sounds as if all you need to do is pace, which is easy, and maybe your symptoms will reduce, if you feel up to it then you can increase…

First of all, pacing is really hard. And you need to think about it, yourself, how you’re feeling, all the time. But don’t get obsessed with it. Notice what your body tells you! but practice mindfulness. Don’t dwell on pain, distract yourself but don’t forget you have to pace. Record your symptoms so you can review your health, but don’t focus on symptoms all the time as it can get you down. Don’t overdo it, but don’t do too little.

Yes. Toxic wellness. That’s it!

Justified by poor methods looking for confirmation bias.

I think pacing caught on even with the behaviorists because it's patronising to be frank. And simplistic. It is an ambiguous term that can be twisted to infer we 'just don't manage our energy' rather than 'have an energy limiting condition' and allows them - and I watch it in all the gaps in their sheets - to duck the inconvenient idea that we might just not have enough.

For patients who are metaphorically managing to go 100miles on 20p of petrol based on pure tenacity to have someone arrogantly and deafly talk at you as if you've got £40 worth of petrol compared to normal people's £45 (if they acknowledge that) and just need to 'go less overboard with tuckering yourself out'.


But all I read from this is that attitude issue towards us of them assuming they are being 'nice' when actually they aren't when their deep opinion is we are idiots with a behavioural issue - it's the difference between pity and respect - and it stands firmly in the way.

There's a reason why eg commercial companies get independent market researchers in to run their focus groups on the latest thing they designed and think is fab, beyond the skills of running said groups in such a way to get to the nub of the issue and making sure they have participants who actually are qualified (use those products) and 'involved' (care enough they can be bothered whether it gets released as a good product or not) and that is because you can't have the person whose baby it is in the room asking those people 'what do you hate about this' and genuinely say you think they gave their absolute harsh truth.

And in a market where people have choice and rights then if you don't get that now, then it is expensive to find out later by noone buying it or a bad social media response.

I don't understand why after all of this long attritional battle for 'new', the end result is we have the charities sitting us in front of the same persons, who haven't changed and just want to limit the voice and 'what they can speak on' as if that is feedback or a new process. Instead of respecting people who are the ifnormation on what the condition is.

 

[MrMagoo]

I think pacing would be easy enough if I didn’t have ME.

And they don’t ever need to “follow through” on their pacing advice. How do you pace when you don’t have enough energy to clean, you don’t have support from friends or relatives and Social Services say you need to pay for a cleaner, they dont do that.
No, I can’t “just hoover one room each day, not the whole house” I can’t stand up long enough to do that. Or batch cook. And the house is becoming unsanitary. And it’s getting me down. And I’m tripping over stuff. So how do I pace? Oh and I have a hospital appointment next week.