UK CMRC 2018 Conference - Rachel Hunter (health economist)

TiredSam

TiredSam

Committee Member
This thread has been split from the CMRC conference thread here.

See also the MEA Summary page 9.



Skycloud said:
Rachel Hunter (health economist) UCL. (@TiredSam briefly becomes more even more famous ;)) -
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Well I do think many of us (myself included) are hiding from healthcare because we can do without the patronizing abuse which is all many health-care providers seem to have to offer, and I also agree that the fact that many of us suffer financially is a point worth making. Here's what I actually said:

TiredSam said:
I'd like to see the evidence for this. We are often accused of wasting doctors' time, when the reality may well be that many of us are in hiding from the health service and engage as little as possible.

When I read the thread title I actually thought it might be a sympathetic paper on the economic burden to sufferers and their families, but no, it's about the cost to society, productivity, and the cost of our assumed higher healthcare utilization.

How unpleasant.
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However, Rachel Hunter has put her own interpretation on my reply to @Dolphin, which was:

TiredSam said:
I appreciate that. I was just a little crestfallen and needed to talk about it.
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How she gets from that to "it makes Sam feel like we're just a burden on society" I've no idea. I don't think we are a burden on society, we are a valuable resource which society is wasting so that some totally corrupt BPS cronies can get rich and titled at our and society's expense because the government and insurance companies want to present their short-sighted and inhuman false economies as whatever brand of "efficiency" they're trying to win votes with or make profits with in the moment.

She took the phrase "a huge burden on society" from a subsequent post on the thread written by someone else, and it was a description of how the BPS crowd see us, not how we see ourselves.

Oh well, anything which increases my fame and helps the cause I suppose ...
 
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I've still not managed to watch this last batch of video's - I need a better day for it. Eliana Lacerda's presentation couldn't hold my concentration and I gave up part way through Rachel Hunter's presentation. I can't make out the slides very well (why did they film from such an unhelpful angle?). I might go back and try again on a better day but didn't find these two very interesting. It's a good thing that collaboration is being fostered across Europe but it just feels like progress is glacial.

@TiredSam It's not on that you've been misrepresented. I have to say that I've never had the impression that you think pwme are a burden. What you did say is true.
 
TiredSam said:
Well I do think many of us (myself included) are hiding from healthcare because we can do without the patronizing abuse which is all many health-care providers seem to have to offer, and I also agree that the fact that many of us suffer financially is a point worth making. Here's what I actually said:



However, Rachel Hunter has put her own interpretation on my reply to @Dolphin, which was:



How she gets from that to "it makes Sam feel like we're just a burden on society" I've no idea. I don't think we are a burden on society, we are a valuable resource which society is wasting so that some totally corrupt BPS cronies can get rich and titled at our and society's expense because the government and insurance companies want to present their short-sighted and inhuman false economies as whatever brand of "efficiency" they're trying to win votes with or make profits with in the moment.

She took the phrase "a huge burden on society" from a subsequent post on the thread written by someone else, and it was a description of how the BPS crowd see us, not how we see ourselves.

Oh well, anything which increases my fame and helps the cause I suppose ...
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I've given her a downvote. Others should join me.
 
Andy said:
@TiredSam , do you feel it's worth us officially raising her misinterpretation at all?
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I put her misinterpretation down to sloppiness and lack of attention to detail, especially after she referred to us as "ME Science, a kind of discussion blog ..." (as an aside, I'll be back to teaching students how to give presentations next Monday, and will include such tips as don't overuse phrases like "kind of", don't wave your hands around all the time, prepare thoroughly and slow down so you don't sound nervous and breathless ...)

She uses her reference to my post to underline that "It's important to point out the patients' perspective here, so I don't just think about money, I think about patients as well", so the fact that she can't get the name of our forum right and puts words in my mouth I never said kind of undermines the point she is making (did I just say "kind of?" Lawdy, it's catching). I haven't watched the rest of her talk so I don't know how good it is.

But to be honest I only mentioned it here as a curiosity rather than a complaint, and because I didn't want anyone thinking I'd ever said ME sufferers were a burden on society. Who would we raise the misinterpretation to, and with the hope of achieving what? It's not something I was thinking of doing myself, but if anyone thought there was a productive reason to do so I suppose I'd be up for it.
 
Just watched the whole thing - originally to count all the "kind of"s (two in the first 20 seconds), "actually"s, "obviously"s, "err"s, but I got bored with that.

Seems to be a summary of 6 poor quality studies (two by McCrone, one of which is from 2003 with 44 patients). The fact that the studies are crap and have wildly different results (eg informal care costs range from 2,300 to 17,000 depending on the study, productivity losses range from 2,000-18,000 depending on the study) doesn't seem to matter, let's review them anyway, add up all the numbers, work out some means and medians and present it like it tells us anything at all. Although Rachel Hunter correctly mentions lots of caveats about the data as she goes along, she forgets the biggest one - garbage in garbage out. Never mind, she manages to come to a "conservative and well-researched estimate" of health-care costs.

She then goes on with an overview of characteristics of ME sufferers based on questionnaires filled in when donating samples to the Biobank, and extrapolates from these to get a figure for impact on total income and loss to UK economy.

Then she has a slide titled "international studies" - although she only mentions one - the systematic review by Brenna and Gitto which was the subject of our very own S4ME thread from which she took my quote:

https://www.s4me.info/threads/the-e...-for-further-research-brenna-gitto-2017.2486/

Surely when she was looking at our thread for quotes she must have read our very own @Dolphin's comments:

Dolphin said:
Although the authors themselves may not have strong views, this mentions a lot of nonpharmacological interventions studies (e.g. on CBT) and claims they showed benefit in terms of QALYs. These are self-report measures and there is no mention that there could be problems with them.
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Oh well. She praises the authors for managing to identify ME sufferers and distribute questionnaires in a country where ME is not recognised.

Her email address and twitter account are clearly displayed on her last slide, so I presume she welcomes feedback.
 
Here's a conundrum that's been exercising my mind. I'm interested in what others think.

I accept that it's important to make the argument about the health costs of ME - both in terms of the costs to society (lost productivity rather than costs of non-existent or harmful treatment, which appear to be minimal) and the costs to the individual patients and their carers. This is a political argument, and to make it effectively a shockingly big number would suit very nicely thank you. We have very low quality evidence for our shockingly big number, a lot of which has been provided by the very same BPS brigade which has provided very low quality evidence for the harmful and abusive health policy and treatment currently on offer to us.

The 6 studies used as a basis for Rachel Hunter's figures include BPS authors and can be pulled apart in a myriad of ways. The "International Studies[sic - there was only one]" referred to by her is actually a "literature review", and the references section is littered (and I use that term advisedly) with the names McCrone (twice), Sharpe (thrice), Chalder (thrice), White, Wessely (twice), Fukuda, Crawley, Van der Meer (twice), Bleijenberg (twice), and O'Dowd. It's hard to know in what order to make that list and who should go at the end of it, so I have just listed the cast in order of appearance. The Pace Trial is also referenced of course. To my mind this makes the Italian study about as reliable as a Cochrane Review (which for the sake of clarity I should mention is not something you'd want to clear up dog poo with for risk of offending the dog).

So the question is, because this large dodgy number suits us and reaches the research standards required for making a political argument (dodgy will do, just give us the results we want so we can say "scientific studies") do we wave it about in good faith saying there are caveats but it's the best evidence currently available when we know it's as dodgy as [expletive removed to avoid moderation issues]? If that's an ok thing to do (and we have been arguing that it isn't in the context of evidence required to inform health policy) then more power to Rachel Hunter's elbow and thanks for the big number, who cares about accuracy we've got some advocating to do.

This would perhaps lead to our opponents saying "your evidence isn't very reliable" and picking apart the studies our evidence is based on, which are the same studies their health policy is based on. Except of course it wouldn't, because they don't argue like that, are quite capable of adopting two conflicting positions at the same time*, and consider sticking their fingers in their ears and shouting "blah blah blah" to be a more than adequate response thank you very much.

Or do we plod on as we do on the medical front, only basing our arguments on high-quality evidence (or in the absence of any, picking apart and refusing to accept low-quality evidence) and instead of putting dodgy numbers from corrupt authors through a sausage machine and pretending that what comes out is any more reliable or credible than what went in, demanding a well-funded methodologically sound study on the health costs of ME, which we suspect are enormous and we would like to see reliably quantified?

*Here's a recent example of how they deal with two conflicting positions:

Question highlighting logical contradiction - "if ME isn't a physical illness why aren't sufferers allowed to donate blood in the UK?"
Answer (paraphrased) - "their blood's fine, but they have obviously got themselves into such a state / tizzy that we need to protect them from the stress giving blood would cause them".

They will shamelessly make up any old shit.
 
I think the question of 'what's the burden to society of ME?' is quite different to the question of 'does this treatment work?'.

That's because once you understand how debilitating ME is (e.g. the high percentage of people who can't work and need carers) and have a vague idea of how many of us there are, it doesn't take much thought to realise that the opportunity cost of the disease is 'a big number'. So any study that comes up with 'a big number' is probably going to help do the advocacy job. Yes, we can say, the number might not be quite right, disclaimer, blah blah assumptions, blah blah we need more research to refine the number etc.

But, in this case, even a 'big number' based on rather dodgy assumptions isn't telling a fundamental untruth.

Whereas, making out a treatment leads to recovery, when it quite clearly does not, is.

If someone picks apart the data for the cost of ME estimate and manages to halve the estimate, it's still going to be a big number. There's just too many of us with ME and too many of us not working or working at much less than our pre-ME capacity for it not to be a big number.

Also, I'm not sure it's in the BPS crowd's interests to minimise the impact of the disease. If the disease doesn't have a big economic impact, then there is less reason for their empire of CBT and GET centres.
 
I'm trying to distinguish between Esther Crawley's prevelance numbers and Rachel Hunter's cost of ME numbers. Both are shockingly large numbers which could be used for advocacy, but we'll have no truck with EC's number (Ron Davis was very quickly corrected by us when he referred to it), and are prepared to use Rachel Hunter's numbers, which are based on dodgy research based on dodgy research (I didn't just type that twice by accident).

What's the difference? Why not just say 5% of the population has ME and hope that shocks somebody into taking us seriously? Because of EC's poor methodology and the way she includes people who don't have ME on the basis of dodgy questionnaires? There are probably just as many non-ME sufferers included by the BPS authors of the costs of ME studies for the same reasons. And citing EC's 5% figure hasn't helped anyone except EC to build her empire. Do we want to wave a high "costs of ME" figure around just to help build up the MUS empire?

I don't like phrases such as "health costs of ME" or "burden to society of ME". We should be talking about the "health costs of GET" or "burden to society of the BPS narrative and NICE policy" or "costs to society of not allowing ME sufferers to contribute". It's not ME sufferers who are costing anything or being a burden, so if we must wave a large number around, at least we should be calling a spade a spade. But no, the label has already been printed by the BPS crew.
 
In an ideal world, a competent health economist would be found to undertake a review who is familiar with (or can be made familiar with) the issues. Doing a review properly means chucking out bad studies. If there are no good studies, all that may be possible might be to offer an arm-waving, ballpark range (likely to be very wide) based on reasonable assumptions of prevalance, disease-severity profile and individual costs and to call for proper research on which to base a more accurate range.

This is something our charities could put out a call to fund but is a big number really going to be effective in advocacy? Are people actually focused on the money, if they think this is an all-in-the-head thing that's resistant to psychotherapy and telling people to just get up and about (i.e., a hopeless case)? Does cost to the economy ever motivate research councils or others? (I'm genuinely asking - I don't know.)
 
From the figures presented all I think officialdom would conclude is:

1)pwME don't cost the health service very much (ignoring the fact that there is no effective treatment and a lot of pwME avoid using healthcare services), so they can't be very ill.

2)The biggest cost is benefits/loss to the economy, so we should just get them back to work (AfME can help with that).

3)Then also, ME/CFS is clubbed in with MUS (as per another of the CMRC presentations) so there is little point putting lots of money into research.

great eh(?)
 
Sasha said:
Does cost to the economy ever motivate research councils or others?
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I just put your question to my daughter who is doing a Public Health Masters including, right now, a health economics paper.

She replied:
I think, probably, 'not really'.

You need good advocates, and when the people are coming to universities saying ME is cured with positive thinking that doesn’t really help

And you need people in govt to care.
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She gave an example where a economic review of a drug found that it wasn't cost effective. But a political party said 'if we get in at the next election, we will fund it'. And they did get in, and they did fund it.

So it sounds as though a 'hearts and minds' appeal to politicians (and perhaps pointing out how many votes are in it for them) is going to be more productive than trying to make 'the big number' more precise.
 
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I think other illnesses use economic costs as part of their “we deserve action” plea and don’t see why we should be different except we have to fight harder on many fronts.

This is a really good report by the Irish MS society. They really have produced an interesting in depth study and there’s lots we could learn and indeed compare. I think on average the MS U.K. costs are quoted as similar to the ME £3b/ year but the costs are more than us from healthcare , outpatient and medical treatment and probably less than us on benefits etc as more of them are in FT work.

http://ms-society.ie/uploads/File/Living with MS/Our publications/MS Ireland - Societal Cost of MS in Ireland 2015cc.pdf

My concern is that this doesn’t become yet another area we are supposed to wait for research on before we do anything. We know we must be costing a lot in loss of productivity and benefits and our families having to care for us, even if we avoid GPs and don’t get any treatment. Given that we aren’t cared about as a group I personally think the economic costs and amount in work are important but as said, if it’s believed CBT could rehabilitate us all then...
 
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Andy said:
Which would make it this report then, https://www.meassociation.org.uk/wp-content/uploads/2020Health-Counting-the-Cost-Sept-2017.pdf
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Ok come on own up, which one of you posed for the picture on the front cover?

Calls it CFS/ME (always makes me nervous) quotes Fukuda criteria in the executive summary at the beginning.
The average length of the illness is around six years
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Oh good, only one more year to go then for me.

I was reading through this and thought it was making some good points, even though it only considered UK studies and cited Peter White a lot. Then this:

4.1 Therapeutic interventions
The primary interventions for CFS/ME approved
by NICE are cognitive behavioural therapy (CBT)
and graded exercise therapy (GET). Both involve a
collaborative patient–clinician approach and have
been shown, through randomised control trials, to be
moderately effective treatments (Malouff et al., 2008;
PACE, 2011).
7
NICE recommends these interventions
in the treatment of mild and moderate CFS/ME, while
principles of CBT and GET may be incorporated into a
care programme for people with severe symptoms.
CBT aims to reduce the levels of symptoms, disability
and distress associated with CFS/ME. It is intended
to enable validation of the person’s symptoms and
condition and develops awareness of thoughts,
expectations or beliefs about CFS/ME. It also
addresses lifestyle choices and stress management,
explores problem solving and goal setting, and treats
any associated or comorbid anxiety, depression or
mood disorder.
GET involves physical assessment, baseline
measurement and meaningful goal-setting and
education. Physical activity is individually tailored with
planned increases in the duration of exercise, followed,
in turn, by an increase in intensity when the individual
is able, with the objective of improving symptoms
and functioning. Personnel involved in this care
include occupational therapists, physiotherapists and
rehabilitation care assistants.
Pacing, or ‘adaptive pacing therapy’ (APT), is a self-
management approach, drawing on some concepts
used in ‘activity management’, where periods of
activity are balanced with periods of rest. Many people
with CFS/ME have reported pacing as helpful, despite
a lack of evidence base in trials (NICE, 2007; PACE,
2011). Pacing is a prime example of stakeholder
disagreement: in Action for M.E.’s 2014 survey of more
than 2,000 CFS/ME sufferers, 85% of respondents who
had used pacing considered it ‘a little or very helpful’.
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So I'm buggered if I'm wasting any more time on it.
 
I haven’t watched the video but see in the MEA summary a figure of £110 million is given for productivity costs. Sounds like this was based on the Collin, Crawley et al study on the 5000-odd people who attended the NHS CFS-ME clinics. This figure definitely shouldn’t get quoted as total productivity costs as there are many multiples of that number of patients not included in that figure.
 
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