UK:ME Association funds research for a new clinical assessment toolkit in NHS ME/CFS specialist services, 2023

I offer the following comments on the ‘health care culture’ surrounding ME and some remarks about my personal experience as to how widely the harms spread, even beyond ME patients. I apologise for the length.

First, it is not for the patient to prove they are ill. It is for them to truthfully describe what they are experiencing and the effects of their symptoms on them to the best of their ability. It is also not the patients responsibility to prove a clinical approach/ therapy or activity may be harmful to them, but it is the Patients responsibility to decide which clinical approach, therapy, activity and researchers/practitioners they choose to engage with.


The Researcher/Clinician/therapist is required by law in the UK with regard to the obtaining of informed consent, to make the Patient aware of all reasonable explanations for their illhealth and the risks and benefits of engaging with any described clinical approach/treatment/activity or therapies. A Researcher, clinician or therapist is required not to pressure the patient to choose any particular clinical or therapeutic course/activity but respect the patients choice. The law also makes it quite clear that only the individual patient can decide the balance of risks/benefits associated with any clinical/therapeutic approach or activity which is acceptable to them.

Any cursory glance at the medical/caring professions approach to caring for ME patients in the last several decades will quickly show that the dominant culture has been to not trust the patients insights to their ill health and to subject the patient to the practitioners own choice of action, which basically can be summarised as asking the patient to ignore their symptoms and carry on as usual. When this proves unsuccessful they stigmatise and blame the patient for not cooperating, although very many have cooperated to their detriment suffering a worsening in the severity of their disability as a result. These harms experienced by the patient are in this ‘culture’ discounted as not being real.


This ‘culture’ ignores the law and also professional ethics, by trying to impose it’s chosen clinical/therapeutic/ activity approach to ME on patients by not explaining all medical views of ME other than their own, denying the patients right to choose and if they reject the clinicians views/ therapies or clinical investigations stigmatise them for that rejection.


An unrecognised harm or at least one not often acknowledged is that of the loss of trust between all the parties to the health care agreement. Kitty’s comment quoted above reflects this loss of trust amongst the vast majority of ME patients who do their best to not engage with health professionals, who consistently fail to respect their rights to choice with regard to the clinical view of ME or with those who do not respect the patients expertise in describing how their illness effects them and importantly what works best and what does not for them.

In my own case I cared for my late wife who developed ME in the mid 1980’s until her death a few years ago. Throughout her life with ME we found engagement with most health professionals as a result of this dominant ‘Clinical Culture’ should be avoided at all costs so as to protect the quality of life painstakingly achieved by learning to live within the confines of the illness, accepting the inevitable downturns frequently experienced through uncontrollable life circumstances.


My wife was first moderately affected, becoming very Severely affected as a result of this dominant health profession ‘culture’ of not believing/trusting the patients experience of their illness. I coped well with caring for her for well over a decade whilst also holding down a very responsible full time job. Eventually however this ‘clinical culture’ of not believing the patient or respecting their rights to choice, impacted my health as my Employer was not sympathetic on advice from their Medical advisers to making adjustments to allow for my caring duties for someone with severe ME. In short, an Independent Medical Opinion concluded that my Employers inability to respect the need for me to make adjustments to my life/work balance as a result of having to care for my wife meant that I could no longer trust my employer with the safety of my own health and could no longer work in any capacity for them. The Report also concluded my health had already been damaged such that my capacity for work with any other employer was also diminished. I received very substantial financial compensation as a result. I do not regard the outcome as a win for me, but a major loss of health to myself with the Employer suffering considerable adverse reputational and financial damage. The harm from this Health Care Professional ‘Culture’ around ME damaged us both (and we were not ME patients).


As to getting an apology for the harms and gaslighting we experienced, neither my late wife or I ever received an apology from those responsible for this ‘culture’ around the health care professions approach to ME. We did find individual medics and therapist’s who did respect her ability to articulate her experience of ME and her right to choose what she could and could not undertake. Those very few took some finding but were our saviours as were other patients and advocates found on Forums such as this one.


First work with those who show respect for your knowledge of ME and its effects on you. Second try and educate those who don’t and if they are badly resistant, move on. Finding the first and doing the second is as difficult as coping with the illness itself, but the best choice for all concerned in the longer term as it will eventually change the balance of that ‘culture’ for the better.


You all do good work in support of a lot of others who do not appear in these threads and even don’t have the illness but, like me, are associated with it in some way by being a carer or a friend/advocate.

 

There's an analogy there with credit card debt, or tax rates that kick in at higher earning brackets, or compound interest...I don't understand these financial rules well enough to describe it and my brain is hurting but I'm sure there's a way to explain PEM using these concepts.

 

And thus you have demonstrated your position of power, over 'the rest of us', to extract our time and energy, to deny our reality, blame us for the stigma that reinforces our position of vulnerability, and profess to be producing something that was developed with support of people with ME, all in our best interests.

 

@sarahtyson wrote:
"I am not engaging with this thread any further now. I had joined it in anticipation of a constructive, critical discussion which could help progress the project and use of measurement tools in ME. Instead, I have been met with diatribes of, frankly, hysterical projection, catastrophising, conspiracy theories, overt hostility and insults. This is the sort of nonsense that given people with ME such a bad reputation, and I have no interest in being further involved"


What a shocking statement. 'diatribes ... hysterical projection .... catastrophising .... conspiracy theories ... overt hostility ... insults ..." And the denigration that the sick/disabled people with ME have "a bad reputation' .....

and the dismissal of our views as "nonsense"


I now wish to retract my questionnaire answers as I no longer wish to have anything whatsoever to do with the clinical assessment toolkit project. I feel utterly stigmatized and insulted by @sarahtyson 's extreme and unfair responses to the posts on this thread.

.

 

This! Sometimes after everybody airs their grievances and reflects honestly and openly on what has happened so far it can unlock new ways to move forward.

Yes, something like this could be helpful. However, any individual who is managing a project that should be coproduced, and any individual working with the community they are coproducing with, needs to be ready, willing and able on a professional and individual level. It is a complex task and really hard to do well, especially when working wjth groups who are stigmatised and have such outstandingly poor access to services.

I don't know if the project has a coproduction steering group which includes pwme who can help anticipate the sorts of things that have come up here, and whether project members have had support (ie training and coaching) from coproduction trainers and coaches, but that would be a great place to start.

ETA: the project page references 'consultation' with pwme, which means asking who they like and doing what they want with the feedback, it doesn't mean coproduction which is when the group in question have equal power over a thing.

 

I pointed to the very good pages on the mind website about the different forms of incorporating patients and actually created a thread having found them: Influence and Participation toolkit? | Science for ME (s4me.info)

Influence and participation toolkit | Mind - Mind

The methods section of which goes through the different approaches - including codesign, coproduction etc. Methods | Mind's Influence and Participation Toolkit - Mind
So a useful run-down to get everyone on the same page of what options there are and how they fit and are appropriate for achieving different things/claims.

Consultation tends to be a bit of a flexible term 'bridging' some of these.


I'm pretty used to the sort of thing Sarah is engaging in regarding problem-solving and you've often got the interesting conundrum between the 'compromise' or 'collaborate' decision when of course using compromise involves a solution that is focused on making everyone least unhappy, whereas collaboration is a more arduous process of getting to the bottom of in order to fix the issue itself. I've done things formally and more informally myself with groups and issues that if you were being factually accurate in how you viewed them were not necessarily easier than this task. I've been part of those groups where others have been doing it.

In other contexts I've seen things that have had the usual cycle of many years of people either being given timeframes/resources or choosing the approach of compromise and it just popping up again because it never really was getting to the bottom of either the 'what are we trying to solve' itself or even 'what are the real issues underlying the stakeholders preferences'. And the original 'compromise' stakeholders move on or change their mind. It does become really hard when there is a mismatch between resources/timeframes/leeway up the chain and what turns out to be the best way to approach things, and of course this often does change/get discovered only after the scoping stage or later on.

Stakeholder mapping and management is also actually the first stage of anything. And the reason for that is that it becomes the second thing that defines what a project actually is, because it shows you where the sign-offs are and - unless you've some sort of negotiation process so this is kept quiet - often there are crunch points where delivery timings can be held hostage by those sign-offs (even if they seemed fine as you worked through it all) where people clock they can say 'you get nothing as I won't sign it off for the deadline, or agree with this thing I want that is eg only 10% of what you want'. It is intended to focus the mind/resources (on whose needs you are meeting and info inputs) and help with planning, but can't eliminate implicit attention-filters or bias completely.

On the other hand it can be a project where the power of getting a solution that is deliverable is in the hands of the project manager with ticking the box of appropriate involvement being something that is going upwards to a different set of stakeholders. And 'defining the problem' or 'blueprinting the process/journey/end-goal' is the main part where said stakeholders are being involved. Then there is lateral thinking stages on what might be potential things that could work. And so on.

I suspect - but it would be good to clarify - that we are being involved at the later stages, as this is now testing the questionnaire, as 'users to provide feedback' like when you'd check that you wording on something reads as you think it does

On the other hand as a hard task - which this certainly is, with things like PEM and so on - coming up with solutions that measure things that are tricky and ill-defined and would be used in a context riven with the issues created over the last few decades needs that collaborative brainstorming. And of course we will be commenting anyway [on what might work] whether there is a project that exists, and whatever stage it is at, from our positions of insight.

more official consultations
I've had a number of official, large consultations that are nothing to do with ME happen around me recently. And the norm is often interesting to watch, I've realised how much it can actually vary.

The 'reaction' has often involved small groups, or indeed large discussions via social media of stakeholders organising themselves and even 'arranging their own events, petitions, reports' and local politicians getting involved etc.

Despite those 'running it' (who you quickly realise weren't those who were probably making the final decisions) having a plan of official sessions and communications they'd like to follow as a process. And of course those processes were being commented on and critiqued too (like having limited timeslots or attendance and so on).

It might seem ironic, but the ones that allowed the most of this and listened to and acted on it rather than necessarily just engaged with it, and extended deadlines to let things 'run their natural course' of the back-and-forth needed for people not to claim they were missed or rushed ended up with the better solutions. And things going from pitchforks in large numbers to once changes had been made and people felt heard then watching social media where those same people were stepping in and advocating for the process when others' whinged etc. Because everyone is never going to be made happy, but at least rationale was more understood.

But not everyone gets to run one where they are allowed that flexibility.

So consultation certainly doesn't have to mean box-ticking [I say this because I've seen those where it has] and does seem to be able to be somewhat fluid even when official. Sometimes quite far up to people submitting their own plans and suggestions and so on. Or sometimes it can be someone deciding to make it look like they listened and decisions were already made. I'm always intrigued by what the real protocols are behind different things.


I'm aware I'm probably moving into nerd/boring territory now. But my point is that a lot seems to be a bit implicit/flexible.

 

@Haveyoutriedyoga I completely concur with the paras of @Peter Trewhitt that you have highlighted and your commentary, it's hard to tackle something if there is an elephant in the room, and breakthroughs can certainly come from the hard stuff coming out. I'd like to know if the elephant is what it looks like or there are other things going on - like the stage the project is at and resource vs what is possible and so on.

This latest thing could be the most useful feedback/insight/breakthrough ever received into the process and filters of a project given how open it is for standard communications in such processes, although I'm open-minded it might be misrepresentative and corrected - we may find there are procedural points behind it etc. but we'd need that explaining to understand further. Or is that reply the equivalent to when Nice replied to each of the submissions to the draft, but as an overarching statement?


I think flexibility probably is good and needed to get these things moving and narrow down some of the issues but it's different if you are the one with the deliverables, and reminders of what they actually are in totality (including stakeholder stuff), how immovable they are etc might help reformulate the 'problem definition' at this point.

There may be various boundaries, things that have been now cemented more, or showstoppers that have been defined (or not?). If so then it would be useful/right for all of these to be communicated more explicitly

- and it might mean a split in the thread being considered if 'limitations' on context/focus become useful for one 'thread' (where another would be commentary on that) etc. or if people are reading it all for context then you'd assume they'd be hearing and discussing it in an interested way or knowing when not to reply?

 

Pretty telling that the two bottom items are literally the bulk of the biopsychosocial approach. You know, the one that is 'holistic' and 'patient-centered', but consists of 'teaching' things they don't understand and coercing us to do things that harm us. And it's not on the ladder but completely wash themselves off any responsibility for the bad outcomes. Responsibility feels like it should be in there, maybe it's not because it's assumed that professionals always do it, but clearly that's not even close to be the case.

The biopsychosocial frankly has all the pros and cons of a religious doctrine. They all promise peace and harmony, but almost always end up as tools for power and social control, if not in all situations, certainly in many.

But the fact that it is based on lies and mostly consists of lying always made that obvious.

 

In the interests of diplomacy and collaboration I will make a herculean effort to restrain myself from saying "Don't be silly", hopefully thereby setting a splendid example to others of the kind of language that is appropriate on a forum of very ill people using their precious time and energy to engage in good faith.

There is a long history of PWME being asked to generate data by filling in questionnaires and that data then being deliberately misinterpreted or misused to promote someone else's ideological or career agenda, or to deny or force the wrong kind of "care" on PWME, as described in posts above. But apart from that, the mere act of spending 15 minutes filling in a questionnaire can cause or risk causing PEM for PWME, if they are able to do it at all. The evidence will have been presented many times over to anyone who has had anything to do with PWME, for example here:

@sarahtyson how could you not know that?

 

They don’t need any more people to fill in the questionnaire at the moment

 

I wonder if their screens have melted?

 

Yes, I received that same email from @sarahtyson this morning (5/3/2024) inviting me to do the retest questionnaire. I can't remember the date I did the first questionnaire, so have no idea when 2 weeks later would be. I can't find the acknowledgement in my emails of doing the first questionnaire.

And frankly, Sarah Tyson's Comments here which reproduced so many of the manufactured denigrations of ME patients collectively, stating she was met with "diatribes ... hysterical projection .... catastrophising .... conspiracy theories ... overt hostility ... insults ..."

.... has put me off engaging any more with the survey, especially as I am even more sick and wiped out now than when I filled in the first part, and just cannot justify expending my energy on that project, but even if I had more energy right now I don't think I would. It was actually really upsetting to read those words, which have been used as weapons against us in the past.

 

For me at least, it's the wrong time interval too.

The vast majority of my variation is day to day, not fortnight to fortnight.