UK CMRC 2018 Conference - Rachel Hunter (health economist)

"
About this report
It is hoped that policy makers and commissioners will use this information
to make decisions on the planning and funding of CFS/ME services and
research."

or 'we would like the NHS to fund our treatment programs' which is what they (the OHC) have always said is their goal.

 

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?

 

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!

 

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.

 

@Trish said 'Could she contact a few GP practices and ask them how many ME patients they have...'

I have had four GPs in the last twelve years and asked all of them this question, they all said they had none. Yet in each practice a nurse told me that they had one nurse with ME.

 

Perhaps she has him down as having MUS, or even ME.

 

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

 

How about next year's CMRC conference, if there is one, inviting Mary Dimmock to present her paper on the cost of ME to US economy?

https://oatext.com/Estimating-the-d...ates-and-its-relation-to-research-funding.php

I'd be happy to start the crowdfund for air fares etc with a donation.

 

Roz Vallings seems to be the go to GP in NZ. There is also Warren Tate, who spoke at IiME conference last year and whose daughter has ME.

@dave30th might have some suggestions. Isn't @Carolyn Wilshire based in NZ?

 

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.

 

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 :

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:

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:

Edited to add re: objective measures while not differentiating between diverse types of motor fatigue:

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.

 

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.

 

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.