Economic burden of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) to patients: Comparative study, 2019, Araja et al

Dolphin

Dolphin

Senior Member (Voting Rights)
Source: Value in Health
Vol 22, Suppl #3, p S909
Date: November 2019
URL:
https://www.sciencedirect.com/science/article/pii/S1098301519350491

https://www.valueinhealthjournal.com/article/S1098-3015(19)35049-1/abstract


Economic burden of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) to patients: Comparative study
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D. Araja(1), E. Brenna(2), R.M. Hunter(3), D. Pheby(4), U.
Berkis(1)1, A. Lunga(1), M. Murovska(1)
1 Riga Stradins University, Riga, Latvia
2 Università Cattolica del Sacro Cuore, Roma, Italy
3 University College London, London, UK
4 Buckinghamshire New University, Buckinghamshire, UK


Text:
https://els-jbs-prod-cdn.literatumo...3653-20749:pii:S1098301519350491/main.pdf.png

Has some data from Latvia, Italy & the United Kingdom. I imagine there will be a full paper eventually which will have more details.
 
strategist said:
I doubt that the Italian data is representative. Only 23% unemployed? That's got to be one of the lowest unemployment figures I've ever seen.
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You're probably right. Sometimes figures are broken down in between different payment systems e.g. different disability payments, unemployment, part-time work, etc. So perhaps it was the biggest category and there are more in other categories. Certainly with the current wording, it doesn't get across how many people are unable to work because of the illness.
 
Dolphin said:
You're probably right. Sometimes figures are broken down in between different payment systems e.g. different disability payments, unemployment, part-time work, etc. So perhaps it was the biggest category and there are more in other categories. Certainly with the current wording, it doesn't get across how many people are unable to work because of the illness.
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@strategist I'd basically agree with @Dolphin
Haven't read this publication yet; however, speaking generally my view is that the UK figure for "unemployed", "disable" -- should be treated with caution. If you have ME e.g. then are you:
  • disabled and therefore not unemployed?
  • deemed able to work but you cannot find work --- that may be enough to qualify as unemployed --- or not!

Part of this is due to the absence of biomarkers --- good diagnostic tests. So you can't easily prove you have a medical condition which prevents you from working/working full time ---

@strategist one of our local ME groups has a member who worked in the benefits system; so they could explain how the (UK) system operates. You might try to find someone in Italy who could explain how the system works there. That might help you to understand the figures quoted here.
 
Andy said:
@FMMM1 , think you will be interested in this, assuming you don't know about it already.
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Thanks Andy. I need to look at this to see if I can extract useful data for the EU petition*.

Here's an extract from the Abstract "average adjusted income for participants with ME was £12,242 but for healthy controls £23,126. Considering the prevalence of ME/CFS in the UK population, the total cost of illness was estimated at £1,713 million per year". So the average income of people with ME was approximately half (53%) of the income of healthy people.
I'd be grateful for a link to the full publication; also, I'd be grateful for views on how to express the data. The EU Committee responsible for research (Horizon Europe) is the ITRE Committee and it's dominated by industry types so economic data may be useful for that audience @Michiel Tack @EspeMor

*Petition No 0204/2019 by Evelien Van Den Brink (Dutch) on a request for funding for biomedical research on Myalgic Encephalomyelitis
[https://petiport.secure.europarl.europa.eu/petitions/en/petition/content/0204%2F2019/html/missinglink]
 
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FMMM1 said:
I'd be grateful for a link to the full publication; also, I'd be grateful for views on how to express the data @Michiel Tack @EspeMor
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I think there's isn't a full publication yet (the authors might sill be working on it) so I think we'll have to wait to know what these figures mean.

Here are some other studies on economic burdon in ME/CFS, if you don't know of them already:

Brena & Gitto (2017) The economic burden of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME): an initial summary of the existing evidence and recommendations for further research.

Collin et al. (2011) The impact of CFS/ME on employment and productivity in the UK: a cross-sectional study based on the CFS/ME national outcomes database.

Reynolds et al. (2004) The economic impact of chronic fatigue syndrome

Jason et al. (2008) The Economic impact of ME/CFS: Individual and societal costs
 
Michiel Tack said:
I think there's isn't a full publication yet (the authors might sill be working on it) so I think we'll have to wait to know what these figures mean.

Here are some other studies on economic burdon in ME/CFS, if you don't know of them already:

Brena & Gitto (2017) The economic burden of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME): an initial summary of the existing evidence and recommendations for further research.

Collin et al. (2011) The impact of CFS/ME on employment and productivity in the UK: a cross-sectional study based on the CFS/ME national outcomes database.

Reynolds et al. (2004) The economic impact of chronic fatigue syndrome

Jason et al. (2008) The Economic impact of ME/CFS: Individual and societal costs
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I'd prefer to use the EUROMENE data as this research was funded by the EU Commission [COST Action initiative]. I think data produced under EU Commission funding will have more weight/be more difficult to dismiss!
 
Can anyone extract the text and post it here - it will make it a bit easier to use. I can't extract it myself.

Thanks in advance.
 
The formatting ist lost when copying but here it is

PSY44ECONOMIC BURDEN OF MYALGIC ENCEPHALOMYELITIS/CHRONIC FATIGUE SYNDROME (ME/CFS) TO PATIENTS:COMPARATIVE STUDYAraja D,1Brenna E,2Hunter RM,3Pheby D,4Berkis U,1Lunga A,1Murovska M11Riga Stradins University, Riga, Latvia,2Università Cattolica del Sacro Cuore,Roma, Italy,3University College London, London, UK,4Buckinghamshire NewUniversity, Buckinghamshire, UKObjectives:Research is performed in framework of COST (European Cooperation inScience and Technology) Action 15111 EUROMENE (European Myalgic Encephalo-myelitis/Chronic Fatigue Syndrome (ME/CFS) Research Network) to investigate theopportunities for evaluation of economic impact of ME/CFS to patients.Methods:Toachieve the objectives of this research, a study based on patient-reported survey hasbeen carried out in Latvia, Italy and the United Kingdom (UK). The survey includedquestions concerning the socio-economic consequences of the disease, particularlyregarding the health care costs. For data processing and analysis, the methods ofeconomic analysis and statistical analysis are embraced.Results:In Latvia the surveyhas been launched with coverage of 100 patients (with dominance income ofV500per household member monthly). The results show that 1% of respondents spendmore thanV100 as an out-pocket payment for medicines and health care servicesmonthly, 1.8% spendV51-100 for medicines, health care services and food supple-ments monthly, 17.2% spendV21-50, and 80% of respondents spend untilV20monthly to reduce the ME/CFS consequences. The study performed in Italy with 87participants suffered by ME/CFS found that 23% were unemployed and 55% had anincome less thanV15.000 annually. Patients spend averageV210 monthly onmedication and therapy. A study conducted in the UK covered 262 patients with ME/CFS and healthy controls. The analysis shows marked lower economic well-being ofpeople with ME/CFS in comparison with healthy controls. Average adjusted incomefor participants with CFS/ME was£12.242, but for healthy controls -£23.126.Considering the prevalence of ME/CFS in the UK population, the total cost of illnesswas estimated at£1.713 million per year.Conclusions:The patient-reported out-comes is a significant tool to collect the data for evaluation of socio-economic impactof ME/CFS, but for comparative studies the purchasing power parities should betaken into account.
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FMMM1 said:
Here's an extract from the Abstract "average adjusted income for participants with ME was £12,242 but for healthy controls £23,126. Considering the prevalence of ME/CFS in the UK population, the total cost of illness was estimated at £1,713 million per year". So the average income of people with ME was approximately half (53%) of the income of healthy people.
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This is very rosy and optimistic. I doubt it's much more than half as much again on average, too many at zero are likely not accounted for. If I estimate my income for the last decade, it is at most 15% of what it should have been. I had years of near zero income.

Not impressed. It's still very bad to have half-income but this is not representative of reality when 3/4 cannot work and disability is very hard to get.
 
rvallee said:
This is very rosy and optimistic. I doubt it's much more than half as much again on average, too many at zero are likely not accounted for. If I estimate my income for the last decade, it is at most 15% of what it should have been. I had years of near zero income.

Not impressed. It's still very bad to have half-income but this is not representative of reality when 3/4 cannot work and disability is very hard to get.
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Unfortunately I agree with you i.e. I doubt this captures the reality for many people in economic terms and assistance from the Government is very hard to get.
 
One of the authors of this abstract, Italian researcher Elenka Brenna, has published the following back in 2018: Chronic Fatigue Syndrome (CFS/ME): a first empirical analysis for Italy.

I can't read it because it's in Italian, but it looks like some extra info on the (economic) impact of ME/CFS in Italy.

The author also wrote: The economic burden of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME): an initial summary of the existing evidence and recommendations for further research, discussed here: https://www.s4me.info/threads/the-e...r-research-brenna-gitto-2017.2486/#post-45512

@FMMM1 @Giada Da Ros
 
The basic out-of-work benefit in the UK is less than £4k per year for a single person, though that doesn't include housing costs.

People with significant disabilities receive more (sometimes quite a bit more), but enhanced payments aren't easy to obtain for PWME who're, for instance, still able to walk to some extent.

Housing is one of the things that confounds calculations across different populations, which is one of the reasons they're sometimes taken out of the figures. The economic cost of an individual being unable to work in the southeast of England could be several times that of one living elsewhere, simply because of the vast differences in rents.
 
FMMM1 said:
average adjusted income for participants with ME was £12,242 but for healthy controls £23,126
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Would love to see how the healthy control figures are adjusted. Median UK full-time salary is £30,420 by my calc, based on Office of National Statistics weekly numbers. Not sure how others calc'ed it, but have seen alternative full time numbers at £35k, maybe mean based.

Understating typical salaries would understate illness impact. There are so many potential adjustments, but it doesn't feel quite right...

https://www.ons.gov.uk/employmentan...nualsurveyofhoursandearnings/2019#main-points
 
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