United Kingdom: ME Association governance issues

I'm not convinced that a "professional charity CEO" with no personal experience of ME/CFS is the right way to go. Many of them will want to move on eventually to bigger & better positions in the ever-burgeoning "third sector" that will be dependent upon the largesse of governments, large corporations & major charitable foundations. Seriously challenging the Government and the NHS, inevitably making enemies in the process, might well not be to their career advantage despite being what we desperately need.
PeterW said:
we need to get better at engaging our wider communities to raise money and donate to the ME Association, Action for ME and ME Research UK.
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Absolutely not. Contributing to any organisation that is collaborating actively with BACME and supporting psychobehavioural clinics is contributing to the furtherance of ongoing harms.

(Even monies dedicated to research have been wasted on the Tyson project - which further enables & entrenches the psychobehavioural clinics, giving them the ability to say they are using "patient approved" tools & resources - as well as "dysautonomia protocols" by rehabilitationists & other such nonsense. And then there is the issue of fungibility.)
 
Nightsong said:
I'm not convinced that a "professional charity CEO" with no personal experience of ME/CFS is the right way to go. Many of them will want to move on eventually to bigger & better positions in the ever-burgeoning "third sector" that will be dependent upon the largesse of governments, large corporations & major charitable foundations. Seriously challenging the Government and the NHS, inevitably making enemies in the process, might well not be to their career advantage despite being what we desperately need.

Absolutely not. Contributing to any organisation that is collaborating actively with BACME and supporting psychobehavioural clinics is contributing to the furtherance of ongoing harms.

(Even monies dedicated to research have been wasted on the Tyson project - which further enables & entrenches the psychobehavioural clinics, giving them the ability to say they are using "patient approved" tools & resources - as well as "dysautonomia protocols" by rehabilitationists & other such nonsense. And then there is the issue of fungibility.)
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Regarding a professional charity CEO: any ambitious CEO will want to step on to other things in the future, and will look to use the current position to demonstrate their capability and impact. CEOs should not stay in place forever - that leads to out of date and ineffective organisations. People moving around is healthy - it brings new ideas.

Regarding working with BACME: My question to anyone who refuses to work with them is "how can we improve ME clinics if we refuse to work with the people that work in them?" I have yet to receive a credible answer, and the result is no change from the status quo.

Finally, regarding wasted money on the Tyson project - the only people who don't make mistakes are people who don't do anything. With the best will in the world, if we fund research a chunk of funding will always go to poor, badly-run projects. There is no such thing as perfect, and if we set that expectation the result will be the same as we have seen for the last 30-40 years: bugger all.
 
PeterW said:
Regarding working with BACME: My question to anyone who refuses to work with them is "how can we improve ME clinics if we refuse to work with the people that work in them?" I have yet to receive a credible answer, and the result is no change from the status quo.
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That's easy Peter. We call for a completely different type of service. Completely new types of service emerge regularly within medicine when there is new knowledge. We now know that the BACME rehabilitation model is empty of content (their new document makes that clear). We talk to government about having a meaningful physician-led service, and some people are already doing that. BACME have no authority. They are a strange self-appointed group that happen to have filled a vacuum for a decade or so.
PeterW said:
Finally, regarding wasted money on the Tyson project - the only people who don't make mistakes are people who don't do anything. With the best will in the world, if we fund research a chunk of funding will always go to poor, badly-run projects.
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I don't buy that Peter. It was clear from the outset that the Tyson project was designed to prop up rehab therapy with bogus measures of 'success'. Tyson came here to answer queries and was abusive towards the patient community. Peer review went very badly wrong with that project. There was never any need to fund a poor project of this sort.
 
Jonathan Edwards said:
That's easy Peter. We call for a completely different type of service. Completely new types of service emerge regularly within medicine when there is new knowledge. We now know that the BACME rehabilitation model is empty of content (their new document makes that clear). We talk to government about having a meaningful physician-led service, and some people are already doing that. BACME have no authority. They are a strange self-appointed group that happen to have filled a vacuum for a decade or so.


I don't buy that Peter. It was clear from the outset that the Tyson project was designed to prop up rehab therapy with bogus measures of 'success'. Tyson came here to answer queries and was abusive towards the patient community. Peer review went very badly wrong with that project. There was never any need to fund a poor project of this sort.
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A key aspect is why were MEA funds used to devise KPIs for NHS clinics ? This is more service evaluation than anything else- and will perpetuate the current model due to the way it's framed.
 
PeterW said:
Regarding working with BACME: My question to anyone who refuses to work with them is "how can we improve ME clinics if we refuse to work with the people that work in them?" I have yet to receive a credible answer, and the result is no change from the status quo.
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Perhaps you're not aware of the history: the clinics were originally created as the result of political direction (in no small part due to non-specific, undirected "we want clinics!" pressure from patient organisations). They can be un-made, or re-made, in precisely the same way.
PeterW said:
Finally, regarding wasted money on the Tyson project - the only people who don't make mistakes are people who don't do anything. With the best will in the world, if we fund research a chunk of funding will always go to poor, badly-run projects.
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Is there any evidence that MEA regard either project as a mistake?
 
Jonathan Edwards said:
Peer review went very badly wrong with that project.
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As did the management. There seems to have been no censure for the behaviour towards patients; at minimum that required an apology to those she insulted, and there was none.

No competent grant giving body can allow a funded investigator to carry on like that, even if they had made a bad call over awarding the money in the first place. And they certainly can't back her up.
 
Jonathan Edwards said:
That's easy Peter. We call for a completely different type of service. Completely new types of service emerge regularly within medicine when there is new knowledge. We now know that the BACME rehabilitation model is empty of content (their new document makes that clear). We talk to government about having a meaningful physician-led service, and some people are already doing that. BACME have no authority. They are a strange self-appointed group that happen to have filled a vacuum for a decade or so.


I don't buy that Peter. It was clear from the outset that the Tyson project was designed to prop up rehab therapy with bogus measures of 'success'. Tyson came here to answer queries and was abusive towards the patient community. Peer review went very badly wrong with that project. There was never any need to fund a poor project of this sort.
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re: BACME: the Iraq solution? get rid of all the old lot and replace them all from top to bottom?
BACME is a loose talking shop. I have never understood people's portrayal of it as a single hierarchical organisation with an aligned position.
Is it really much different from the Royal College of Physicians? The RCP has been pretty bad for people with ME. Should we refuse to speak to them and call for their dissolution too?

re: the Tyson project: I accept that better due diligence and peer review may have been warranted, but looking at the better systems out there, which has achieved high quality without a number of painful mistakes?
To be clear, I don't defend the Tyson project (I know little about it), I just don't believe that any organisation achieves perfection, and even reaching a level of "good" is rarely achieved without a series of mistakes and fuckups. If we wrote-off any organisation which had made mistakes, none would be left.
 
Kitty said:
No. A charity shouldn't be run by, or operationally controlled by, its trustees. And any CEO of a small charity is likely to be picked for the role because they have some personal knowledge of its area of interest.

There are poor CEOs and a minority of outright bad ones, but the alternative is a group of people who don't have the skills to get a CEO job but do it anyway, and are only answerable to themselves.
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Very much this.
 
PeterW said:
BACME is a loose talking shop. I have never understood people's portrayal of it as a single hierarchical organisation with an aligned position.
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They are more than that. Have you read their publicly available documents. They are dire, with a supposedly scientific model based on outdated, small and poor quality research that goes far beyond even what that research claims as the basis for their guideance for therapists which recommends potentially harmful clinical practices including advising people they can improve their health by gradually increasing exertion and exposure to stimuli and barely mentioning PEM which they misrepresent. It's dire, and it's produced by leaders in current English NHS ME/CFS clinics.
PeterW said:
To be clear, I don't defend the Tyson project (I know little about it), I just don't believe that any organisation achieves perfection, and even reaching a level of "good" is rarely achieved without a series of mistakes and fuckups. If we wrote-off any organisation which had made mistakes, none would be left.
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I agree it's not reasonable to damn a charity for making the odd mistake with funding. The problem with the Tyson project is it wasn't just a mistake, it was a deliberate policy decision based on supporting uncritically the BACME clinics and their unscientific and harmful practices. They even appointed an author of some of the BACME documents to co run the Tyson project. And after we complained about Tyson's unacceptable behaviour and the awful stuff she was producing they made no attempt to remedy the situation. They doubled down and have given Tyson a whole lot more money to do another lot of questionnaires.
 
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PeterW said:
re: BACME: the Iraq solution? get rid of all the old lot and replace them all from top to bottom?
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That seems a pretty unhelpful metaphor. If you have read the BACME document on therapy policy you will know that the organisation has chosen to recommend complete garbage - or maybe just an empty garbage can. We got rid of 'physical medicine' in the 1970s and in fact most of the rehab units were closed down. They re-emerged for political reasons as Nightsong says. And, yes, the same political pressures have reduced the College of Physicians to a travesty of what it used to be, I quite agree. But that isn't a reason for preserving BACME. BACME is mostly physios and psychologists. Neither have a major role in ME/CFS care as far as I can see. You seem to be arguing for the continued delivery of milk by horse-drawn cart.
 
Those working in the NHS psychobehavioural clinics are, by and large, a bunch of low-grade psychologists & physiotherapists who have an ideological view, an idée fixe, as to what ME/CFS actually is & that they are qualified to treat it. That is manifestly untrue. There is no need whatsoever for pwME to provide a make-work scheme for them. There is no serious evidence that any of their interventions have ever assisted us, and there is evidence of harm that cannot be ignored.

BACME's purpose is not just as a talking shop: their "dysregulation" model (which is just an obfuscated version of the old BPS model) represents the intellectual underpinning of many of the current psychobehavioural clinics. NICE foreclosed the fear-avoidance / pure psychosomatic model; they needed an alternative, which BACME provided.

Frankly, the current situation is simply absurd. If cancer patients felt this way about oncology services - that not only were their needs not being met but that they were being routinely mistreated and coming to easily avoidable harm - there would probably be a public inquiry & serious changes would be made.

As for the RCP it is rather politically well-attuned. If the prevailing winds shift dramatically, so will they.

In order to be able to contribute to any of the national charities I'd have to see a sincere acknowledgement from them that they understand that the clinics are not only wholly unsuitable but causing ongoing harm, and that they need to be replaced with genuine services offering supportive medical care.
 
Nightsong said:
Those working in the NHS psychobehavioural clinics are, by and large, a bunch of low-grade psychologists & physiotherapists who have an ideological view, an idée fixe, as to what ME/CFS actually is & that they are qualified to treat it. That is manifestly untrue. There is no need whatsoever for pwME to provide a make-work scheme for them. There is no serious evidence that any of their interventions have ever assisted us, and there is evidence of harm that cannot be ignored.

BACME's purpose is not just as a talking shop: their "dysregulation" model (which is just an obfuscated version of the old BPS model) represents the intellectual underpinning of many of the current psychobehavioural clinics. NICE foreclosed the fear-avoidance / pure psychosomatic model; they needed an alternative, which BACME provided.

Frankly, the current situation is simply absurd. If cancer patients felt this way about oncology services - that not only were their needs not being met but that they were being routinely mistreated and coming to easily avoidable harm - there would probably be a public inquiry & serious changes would be made.

As for the RCP it is rather politically well-attuned. If the prevailing winds shift dramatically, so will they.

In order to be able to contribute to any of the national charities I'd have to see a sincere acknowledgement from them that they understand that the clinics are not only wholly unsuitable but causing ongoing harm, and that they need to be replaced with genuine services offering supportive medical care.
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I thought that they were mainly OTs? I was dismayed when grok replied to one of my questions today, when I described my situation in the UK, through the lens of help I could get through an OT, presumably being led by what official material is out there/ how our care has been arranged.
I want, as do most people, physician-led services but personally would love to have access to nhs psychologist and physiotherapist support - I have spent 5 months being led a merry dance trying to locate a private physiotherapist who would do house visits, after a less than satisfactory community physiotherapy brief - because their focus is on discharging you asap - engagement a couple of years ago.
 
Cinders66 said:
personally would love to have access to nhs psychologist and physiotherapist support
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I am interested to know what you think they can offer? For moderate cases they seem to be counterproductive. For severe cases I am unclear what they would provide that could not be provided by family and nurses. As far as I can see they have no special expertise or theoretical knowledge when it comes to ME/CFS - quite the opposite on the whole.
 
I think there are specific roles that could be done by a physio (preventing contractures, retaining joint mobility in bedridden), OT's assessing and supplying aids and adaptations, counsellor - help with coping, distress. But these are not the specific roles offered by these specialisms in NHS outpatient ME/CFS clinics where they seem to work as 'multidisciplinary' teams interchangably to do BACME style activity management and pacing-up with diary keeping, generic advice about sleep, diet, stress reduction etc - all of it unevidenced and most of it useless or harmful.
 
Trish said:
I think there are specific roles that could be done by a physio (preventing contractures, retaining joint mobility in bedridden),
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That is the one instance that comes to mind but I don't know if we have any evidence that a physio popping in for half an hour a week makes any difference. In reality, prevention of contractures probably requires continuous attention to resting position by someone present all day - family member or nurse. Even BACME note the advantages of not having too many health professionals all doing separate jobs that in reality could be provided by a single carer.
 
Dolphin said:
I know the popular view around here is the CEO approach but I have to wonder how much Sonya Chodhury is influencing people’s thoughts. It is an unusual scenario that she has a child with the condition. There have been CEOs before like Chris Clark (AfME) and Mary-Jane Willows (AYME) who made a right mess of things.
ETA: Also the Val Hockey (MEA) in the early 2000s before the trustees took over.
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Am old enough to remember 3 named above with distaste....and dismay.
 
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