UK CMRC 2018 Conference - Rachel Hunter (health economist)

It does seem like there's a lot of crap work in this area, and I can't stand Paul McCrone, but maybe that's reason to try not to be too critical of someone starting out on ME/CFS, who may be open to discussion and trying to improve? I've not watched her talk yet, but just felt that the amount of poorly conducted work here would make it hard for a researchers to get things right first time, and some researchers are probably not used to the way that we can pick apart one another.
 
This health economist saying we don't cost the health care system a lot because there is no treatment, ignores the fact pwME often see a number of practitioners before they get a diagnosis. Those practitioners cost lots of money. And, the debunked GET/CBT treatments are expensive.

ME is expensive for pwME if we factor in consults and treatments with alternate practitioners. Some, to many of these alternative practitioner's don't have a clue about ME, but make a bundle from people desperate for some relief. Quacks, and charlatans do very well from this, and many other health issues. PwME lose financially in many ways. Does anyone count this loss?
 
Esther12 said:
but maybe that's reason to try not to be too critical of someone starting out on ME/CFS, who may be open to discussion and trying to improve? I've not watched her talk yet, but just felt that the amount of poorly conducted work here would make it hard for a researchers to get things right first time, and some researchers are probably not used to the way that we can pick apart one another.
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I agree Esther12. I think Rachel Hunter seemed well intentioned and probably knows that the input data she has to work with are rubbish.

It is actually quite hard to work out how decent estimates of the cost of ME to society could be calculated when we don't even have good data on how many people might qualify as a PWME.

My daughter has to do a year long thesis for her Masters of Public Health next year. She's interested in health economics; her health economics lecturer is happy to supervise her. Something on ME in NZ is a possibility. (Yes, this is the same daughter who felt that health economics studies would probably be ignored).

My GP thought ME was quite rare and certainly less significant than MS, so perhaps there is an argument for some work on this to hang some advocacy on.

Is there any health economics/epidemiology research that could be done in one year that would have some rigour and might be compelling? I've tossed around some ideas with my daughter, but would appreciate members' thoughts.
 
It might be interesting to look at the results from simply asking people who have stopped work long-term due to ill health some questions....
If you could ask in local papers, you should get a spread of respondents? Then perhaps you could look at age of ‘retirement’ and the financial burden for different diseases? Non- accident reasons only, which would get rid of the ACC group (NZ ‘insurance’ for accident claims - for those outside this country who are wondering what I’m talking about!). Or you could try to recruit through the Societies/Associations and compare a couple of illnesses? Would be a big undertaking though!
 
Hutan said:
Is there any health economics/epidemiology research that could be done in one year that would have some rigour and might be compelling? I've tossed around some ideas with her, but would appreciate members' thoughts.
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To start, how about asking the Department of Health (or whatever the NZ equivalent is) for official figures for ME patients? My assumption would be that, like many other countries, this data isn't tracked, but perhaps that then gives the starting point to work from. So follow with how the U.S. has just started requiring the number of ME patients to be reported, and then looking at the various guess-timates each country has for prevalence, and the issues with each (mainly selection criteria).

Then from that move onto Daisybell's suggestion above?

Don't know if any of that helps, or even makes sense - my education never got to the same stage as your daughter's so I may be totally misunderstanding what is wanted. :)
 
Could she contact a few GP practices and ask them how many ME patients they have, and whether they can send her questionnaire to them? And do a comparison group with another condition like MS?

The problem with asking for volunteers is you are likely to get skewed samples, and include people not properly diagnosed, so not get a representative picture which you need for economic analysis, I think.

Another alternative would be to focus on a few people and do an in depth analysis of all the costs.

I'm guessing she would have to do a literature search first and see how other researchers have done economic analysis for different illnesses, and fit in with those models so comparisons can be made.
 
Nellie said:
I have had four GPs in the last twelve years and asked all of them this question, they all said they had none.
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Yes, when I was talking to my current GP and trying to suggest it is a sizeable problem, she was saying that I was her only CFS patient. I then reminded her that she also looks after my son who has it.

That's the problem with asking GPs or schools how many ME/CFS people they have . The estimates need to be ground truthed somehow.
 
Hutan said:
I agree Esther12. I think Rachel Hunter seemed well intentioned and probably knows that the input data she has to work with are rubbish.

It is actually quite hard to work out how decent estimates of the cost of ME to society could be calculated when we don't even have good data on how many people might qualify as a PWME.
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I agree with Esther12 too, and with you. I also think that it would have been helpful if Rachel Hunter had discussed the problems with the published literature she was using and the need to find ways of moving this area of research forward onto more solid ground.
 
Looks like Hunter co-authored with Jon Stone on some 'functional motor symptoms' papers. I don't really know what I'm talking about, but I sometimes get the impression that functional motor symptoms stuff can be a bit less quacky than other functional stuff (there is more use of objective outcomes and they seem to work harder on sub-grouping movement problems, rather than just lumping everyone in together).

This paper did have some more objective outcomes.... but no control group: https://www.ncbi.nlm.nih.gov/pubmed/25557282

This one was a feasibility study, but had a control group and used a 10 metre walking test and found a significant difference (I've not read the full paper): https://jnnp.bmj.com/content/88/6/484.long

10 m walk time*

Intervention baseline/six months
16.8 (10.0) 9.6 (3.8)
Control baseline/six months
24.6 (17.3) 19.0 (10.6)
Regression coefficient for group, baseline as covariate (95% CI)Cohen's d
−6.7 (−10.7 to −2.8), p=0.001 −0.72
*Two outliers removed from the intervention group (baseline times of 197 and 182 s). Removing these outliers decreased the treatment effect by 1.4

https://jnnp.bmj.com/highwire/marku...h,highwire_inline_linked_media,highwire_embed

The registration for it (which is listed as being for conversion disorder) is here:

https://clinicaltrials.gov/ct2/show/NCT02275000
 
Hutan said:
Is there any health economics/epidemiology research that could be done in one year that would have some rigour and might be compelling? I've tossed around some ideas with my daughter, but would appreciate members' thoughts.
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Maybe this would be better off as a separate thread? Easier for people to pick up on :)

A good start would probably be to first pick an area of interest, then make a list of relevant keywords and do a preliminary literature search. Mapping the existing literature will probably tell her something about what is interesting or missing or where there are loose ends.
 
Esther12 said:
Looks like Hunter co-authored with Jon Stone on some 'functional motor symptoms' papers. I don't really know what I'm talking about, but I sometimes get the impression that functional motor symptoms stuff can be a bit less quacky than other functional stuff (there is more use of objective outcomes and they seem to work harder on sub-grouping movement problems, rather than just lumping everyone in together).
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Interesting to see that they used some objective measures for motor function, but where did you see an attempt "to work harder on sub-grouping movement problems", @Esther12 ?

I am afraid that their underlying concept might be just a MUS concept confined to functional motor symtoms.

I only skimmed the papers/ abstracts, and couldn't find any attempt to specify diverse types of functional motor symptoms. It rather seems to me the investigators wanted to investigate physiotherapy treatment for all "unexplained" motor symptoms without differentiating between types of mobility impairments, and in which parts of the body / limbs these impairments occur.

Furthermore, whereas the authors of the the feasibility study (2017) don't seem to differentiate between different types of unexplained motor symtoms, they excluded a huge number of patients :
[...] Exclusion criteria were:[...] pain or fatigue that we judged to be the primary cause of the patient's disability;[...] ; clinically evident anxiety or depression that we felt required assessment before starting physiotherapy treatment; high level of disability that prevented participation in an outpatient/day hospital environment; and unable to attend five consecutive days of treatment. [...]

[...] Between 8 September 2014, and 4 June 2015, 210 new patients were screened and 143 excluded. The commonest reasons for exclusion were dominant pain (n=57, 27% of screened patients), clinically evident anxiety or depression requiring assessment (n=50, 24% of screened patients) and dominant fatigue (n=22, 10% of screened patients) [...]
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https://jnnp.bmj.com/content/88/6/484.long

Also, the title of their 2015 paper reveals that they equate "functional" to "psychogenic" anyway: "Outcomes of a 5-day physiotherapy programme for functional (psychogenic) motor disorders"

From the abstract:
Education and movement retraining was based on a pathophysiological model for FMD that stresses the importance of self-focussed attention and illness belief.
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The feasibility study (2017) also contains some information about participants with "chronic fatigue" and chronic pain. I consider this information as a significant restriction of the positive outcomes:

[...] No serious adverse incidents were reported during the study period. Some participants from the intervention group reported exacerbation of chronic pain or fatigue during, and the week following treatment. These resolved without the need for a new intervention. No participants reported deterioration of mental health associated with treatment. [...]
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Discussion
[...]Some participants in the intervention group reported an exacerbation of chronic fatigue related to the intensity of treatment, which resolved spontaneously over several days. We suspect the relatively high intensity and short duration is an important therapeutic element of our intervention, allowing gains made in therapy to be built on in subsequent sessions, minimising time for symptom relapse or interference from environmental symptom maintaining factors. This intensity may make it unsuitable for some patients and with this in mind we excluded those for whom chronic pain or fatigue was the dominant problem. Despite this, half the enrolled participants still rated their pain or fatigue as severe to extreme. [...]
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Edited to add re: objective measures while not differentiating between diverse types of motor fatigue:
Gait and balance outcome measures are restrictive as they are not applicable to patients with upper limb symptoms only. The SF36 Physical Function domain was the most promising primary outcome. It had a medium-to-large effect size (d=0.70), and it is not as vulnerable to symptom fluctuation, as answers are given based on the respondent's perception of the average experience within the set recall period.
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source: https://jnnp.bmj.com/content/88/6/484.long

As I said, I only skimmed the papers/ abstracts, so I am not sure if I understood the essence of the investigators' endeavor. However, it appears to me that they used objective measures without having a clear concept what they actually investigated, which seems to me a superfluous exercise -- except perhaps, if doctors needed a justification for trying individualized physiotherapy for disabling motor fatigue with no known cause.

However, I'm not sure whether these papers could be understood as an attempt to (cost-effectlively) help the majority of patients with such "disorders" or rather as a reassurance for medical professionals of a psychogenic concept of "functional neurological disorders" and for a pragmatic (cost-effective) way to deal with them.

I don't think these are good examples how to do studies concerning health economy issues.

Edit: Repeatedly wrote "motor fatigue" instead of "motor symptoms". Now fixed.
 
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Superficial to the point of banality like all the BPS involvement in neurology. I went to a doctor lead patient group for RA with my MIL. The first thing they spoke about was the sheer complexity of lifting a pen and writing your name on the attendance sheet. The interaction of muscle, nerves and tendons was described as a miracle of nature.

While doing basic anatomy at school, the liver was the easiest question. A simple diagram and one sentence "The liver detoxifies the body". Kidneys, the heart, the lungs were complicated and hard to learn. It was a few years before I realised this was because the liver was too complicated in its action for 13 year olds, not because it was simple.

These people treat the brain as the simplest organ in the body, either it has a hole you can see on an MRI or it is psychological.
 
MSEsperanza said:
Interesting to see that they used some objective measures for motor function, but where did you see an attempt "to work harder on sub-grouping movement problems", @Esther12 ?
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It was in other papers, and more general 'medically unexplained' stuff I've read. I've not looked into the details of any of it, but they sometimes talk as if there are particular forms of movement disorder that are more likely to be 'functional' than others. It could be that this is BS, but my impression had been that there's a possibility of useful sub-grouping there. I try to avoid being uniformly dismissive of all MUS stuff just because it's associated with such quackery in CFS as I really don't know what I'm talking about with a lot of the other areas.
 
I have not been able to find any justification for a disease to be called functional in the sense that it serves a purpose in the life of the life of the patient. As far as I can see it is a hangover from freudian theories with no scientific backing. The only case I can see is if the patient is actually lying. An example was given in one of Oliver Sach's books of a woman who got migraine every night when her husband was due home which got better when she left him (or something like that). An increase in stress hormones leading to changes in blood pressure, heart rate, breathing rate is a much better explanation. It can be measured objectively so it can't be confused with lying and does not lead to blaming the patient in the same way. Psychological treatments may help but it is a different approach which leaves treatment options and investigations open. Maybe a woman in this situation actually has a tumour of the adrenal gland or an overactive thyroid which is the real source of her stress.

Functional can be taken in it's other sense of a process though that seems to be a sop to make patients accept the term. But when you think of other processes in the body, such as blood clotting there is always damage at the root of it. It could be very basic damage such as a genetic mutation caused by a stray cosmic ray but again it leaves the door open to investigation and treatment.

The FND websites are full of a confused mishmash which is hard to unravel. Terms and ideas are thrown together in a way that obfuscates rather than enlightens. Patients are given physiotherapy which is known to help the brain find pathways round damaged regions but the improvements are attributed to the CBT which is just an extra thrown in to make work for psychologists.

Movement disorders are just as badly served as all the rest and no matter how objective their results appear to be their abysmal trial protocols and massive exaggeration of conclusions is right there at the centre.
 
Mithriel said:
I have not been able to find any justification for a disease to be called functional in the sense that it serves a purpose in the life of the life of the patient.
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Interesting, I'd never thought of the word functional having that meaning in that context. This is the definition I've seen more often:

A functional disorder is a medical condition that impairs normal functioning of bodily processes that remains largely undetected under examination, dissection or even under a microscope.
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In other words it is a disorder of function, not a disorder of structure or biochemistry etc. leading to the lazy assumption that lack of evidence is evidence of lack of 'real' illness, ie that it's psychosomatic.

Whether this then serves a 'function' in the life of the sufferer, such as enabling avoidance of work, is another question, but an important one when the likes of Wessely suggest 'secondary gain' from being ill and that we shouldn't be given benefits or mobility aids etc.
 
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