28th Sept: The cost of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) to the UK economy

[Cinders66]

I previously looked for the full report but couldn't find it. Here is something I have.

The quote from action for ME asking for appropriate funding investment as th only way to find answers and reduce societal and economic impact


That's precisely the type of thing I wish charities had pursued. In America I think the call for funding has been incessant. In uk it dropped off and now isn't there at all and that's had terrible consequences in uk where things are moving too slowly and the MRC think all they have to do is support a yearly conference. It wouldn't surprise me if lack of funding was why Newton left the CMRC. Especially with the Oxford team coming together, I reckon a £3m ring fenced money, could "encourage" some good new stuff.

I

 

[Dolphin]

Views on CFS/ME

Three national UK newspapers, UK ME websites, and UK medical websites and textbooks were analysed during 2010 for views on the nature of chronic fatigue syndrome.

Those that considered CFS/ME illness to be physical;
• 89% (32 of 36) of ME patient organizations,
• 58% (42/72) of newspaper articles,
• 24% (9/38) of medical authorities

63% (24/38) of medical authorities regarded the illness as both physical and psychological.
(Hossenbaccus, Z. & White, P. D. 2013)

This is referred to in a way that throws doubt on what the patient organisations believe and instead makes it look like the medical authorities' view is the correct one

e.g.

It is also important to note significant disagreement between CFS/ME patient organisations and medical authorities on the nature of CFS/ME (see insert), which will be further confusing patients and potentially steering some away from specific treatment options (Hossenbaccus and White 2013).

 

[Dolphin]

“ Dealing with multiple disappointments as the recovery process ebbs and flows over a long period of time is exhausting, as well as the sadness at the loss of opportunity and pain that your loved one is having to endure.”

Ian (carer), whose daughter has been living with CFS/ ME for 11 years.

It annoys me when "recovery" is mentioned in contexts like this. If somebody is ill for 11 years, they have a chronic illness. Any improvements or fluctuations aren't necessarily part of a "recovery process".

 

[Dolphin]

Population studies involving random digit-dialling in the USA have also shown greater female susceptibility. A population study in Georgia in fact suggested stark differences in prevalence by gender across geographic strata. In the metropolitan area, CFS/ME prevalence in women was 11.2 times that in men, whereas in the urban and rural populations the female-to-male ratios of CFS/ME prevalence were 1.7 and 0.8, respectively (Reeves et al., 2007).

This study used the so-called empiric criteria covering 2.54% of the population. I think it is fairly worthless.

 

[Dolphin]

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.

Given that the CBT offered is based on believing people's symptoms and impairments are due to maladaptive beliefs and behaviours, I don't think it's really about validating people.

 

[Dolphin]

In Scotland, NHS Greater Glasgow and Clyde (NHSGG&C) has set up the NHS Centre for Integrative Care, which provides a comprehensive 90-minute integrative CFS/ME assessment in the form of an outpatient clinic. A pathway is agreed with both the clinician and the patient, with programmes including Mindfulness Based Cognitive Therapy (MBCT); Moving into Balance (aiming to balance energy, rebuild stamina and reduce stress); and both Art therapy and Music therapy. Source: 2020health correspondence with NHSGG&C, 2016.

This got its own highlight box. I question that it is a great path way for patients and "moving into balance" sounds like graded activity or exercise.

 

[Dolphin]

We found 56 specialised CFS/ME services in the UK operating during the accounting years 2013–15 (England 51, Wales 1, Scotland 3, Northern Ireland 1). Available treatments, staff and patient contacts varied considerably. Based on 54 FOI request responses (or feedback) received from trusts, health boards and community interest companies (CICs)11 between March and July 2016, we estimate that some 14,000 people are referred to NHS CFS/ME services each year in the UK, with around three quarters diagnosed as CFS/ME cases, and with NHS running costs at around £14 million.12 Less than one quarter of responding specialised CFS/ME services reported activity in delivering treatments to children under the age of 16.

 

[Dolphin]

McCrone (2003)
Sabes-Figuera (2010)

These are two of the five studies they concentrate on for the costs. As I recall, this figures in these two studies relate to chronic fatigue not chronic fatigue syndrome.

 

[Dolphin]

Technical point in terms of the figures they used:

To calculate productivity losses the five studies all used the human capital approach, multiplying time off work by earnings, to calculate the cost of lost productivity. The human capital approach is widely criticised for over estimating the true cost of loss of productivity to the economy as it does not take into account that some replacement occurs when people leave (Pritchard and Sculpher, 2000). This was adjusted for in Sabes- Figuera by multiplying the total by 80%. We have applied this same adjustment to the other four studies.

 

[Dolphin]

They only used the productivity figures for those of working age which seems sensible.

 

[Dolphin]

They attribute all the costs to CFS e.g. regarding healthcare, while this would not be accurate seems to me.I can't remember what each individual study asked about e.g. whether productivity costs or informal care costs were specifically related to CFS or whether they could be due to other issues.

 

[Dolphin]

Productivity losses among carers themselves, through reduced hours in employment (Collin et al., 2011), were not captured.

What is not measured is presenteeism – reduced productivity at work and increased likelihood of errors made through affected judgement, due to an illness. The absence of presenteeism data means productivity losses are likely to be significantly underestimated.

 

[ladycatlover]

My husband took reduced hours as soon as he was allowed (turned down initially) to look after me. I think it was around 3 years before his retirement age, but I can't recall off hand. He did work for a year after his retirement age, at the reduced hours. If it would be helpful I can ask him about his hours - I simply cannot remember.

 

[anni66]

The full report is here: http://www.theoptimumhealthclinic.com/wp-content/uploads/2017/09/Counting-the-Cost.pdf

I was only skimming through, but it looks like thoughtless shit, and intended to encourage more funding of the UK's dire 'specialist' services. I didn't pull out all the little annoying things in it, but thought I'd give people a flavour. MY main impression was: I hope no-one reads this, and I'm annoyed people got paid to write it.





That paper is propaganda and BS from White. It's not patients who are 'confused', but those foolish enough to trust White.



Their steering group included Alastair Santhouse and Alex Howard. I didn't see anyone worthwhile on it.



I don't think that Cairns paper does show that, and the White paper is the debunked PACE recovery one.



Uncritical citing of PACE.



Whatever could the Optimum Health Clinic be hinting at? Funding for unevidence dietary 'treatments'?



What a way to use limited NHS funds. Who thinks that this is a sensible priority?



The sometimes say things whihcc indicate recogntion that there's no good reason to think that specialist CFS services are useful... but then move on to calling for more to be spent on them.



How treatable is CFS? What evidence is there on this? PACE?

The Glasgow clinic is a new name for the homeopathic hospital.

 

[anni66]

This got its own highlight box. I question that it is a great path way for patients and "moving into balance" sounds like graded activity or exercise.

http://www.nhsggc.org.uk/patients-a...navel-campus/nhs-centre-for-integrative-care/

 

[Dolphin]

I was surprised that the report didn't seem to have much explicit bias in terms of promoting the Optimum Health Clinic.

In Scotland, NHS Greater Glasgow and Clyde (NHSGG&C) has set up the NHS Centre for Integrative Care, which provides a comprehensive 90-minute integrative CFS/ME assessment in the form of an outpatient clinic. A pathway is agreed with both the clinician and the patient, with programmes including Mindfulness Based Cognitive Therapy (MBCT); Moving into Balance (aiming to balance energy, rebuild stamina and reduce stress); and both Art therapy and Music therapy. Source: 2020health correspondence with NHSGG&C, 2016.

This got its own highlight box. I question that it is a great path way for patients and "moving into balance" sounds like graded activity or exercise.

I suppose this sort of service has some similarities to the OHC service.

And all the talk of patients needing treatment and being treatable if specialists (rather than generalists) are used again might lead some people to think that the NHS funding people to go to the OHC might be reasonable.

 

[Esther12]

Thanks for summing this up. Yes it was frustrating reading it. You seem to have captured the sort of points I would have made.

Seems that you have done a much better job of going through it than I!

I previously happened to save data showing the figures were a lot higher a few years earlier

That's a good point about some people already being on PIP. edit: Also, it could indicate turn out that people with CFS are now finding it much harder to gain access to financial support under PIP (which seemed to be the point of it), or else are trying to use alternative diagnoses to make applications.

 

[Luther Blissett]

On the economic side of the report, the lumping together of different categories makes the category 'cost' incoherent, wrong, and potentially dangerous to people with chronic illness, and people with ME in particular.

There is a reason why the DWP was happy with the report.

 

[Luther Blissett]

I will also add that to the best of my knowledge, the data the DWP gives out under FOI only includes one medical condition per claimant. I suspect it is the first one listed.

I recall this being discussed after the usual Daily Mail headline about 'x number of people getting your money for blisters', or similar.

I'm not sure if the same happens for other social security payments.

If the DWP was asked to give an accurate answer, I am pretty confident the FOI would be turned down on costs grounds.