UK-Impact of CFS/ME

[Esther12]

Yeah - CBT is like surgery, it can be useful, but you don't want to be used as a guinea pig!

It's easy to slip in to condemning 'CBT', instead of making it clear that one is only condemning specific aspects of how it has been used for CFS - I think that this can make us seem unreasonable to those who misinterpret what we're saying.

 

[floydguy]

Sorry I disagree I will continue to bash CBT. I am of the camp that if you give up that inch the psycho-babblers will take a mile.I really can't believe at this point in time people think that CBT can make a difference in the root causes/dysfunction of ME. Deep tissue massage relieves some symptoms for me but I don't think it has any chance of making me better. I see CBT in the same way. Maybe it helps some people "feel" better but it's not addressing any root causes.

 

[Esther12]

CBT can be useful for the root causes of some anxiety problems, and can be helpful for some patients with (for example) cancer, without affecting the root causes.

 

[floydguy]

CBT can be useful for the root causes of some anxiety problems, and can be helpful for some patients with (for example) cancer, without affecting the root causes.

So can't massage. The difference with cancer is nobody thinks that anxiety is the root cause of the disease.

 

[Esther12]

Right - but that doesn't mean that massage is useless, and patients who seem relentlessly opposed to being offered massages are likely to come across as unreasonable.

I understand what you mean, but I think that it's a simplification which often makes CFS patients seem unreasonable to others. The issues and problems that surround CFS are really complicated, so it's easy to feel trapped in a Catch-22: i) Explain yourself fully and carefully and you'll have a lump of text which no-one will read or ii) simplify things in way which can be misunderstood and used against you - particularly given the prejudices which many already have about CFS patients.

 

[floydguy]

Right - but that doesn't mean that massage is useless, and patients who seem relentlessly opposed to being offered massages are likely to come across as unreasonable.

I understand what you mean, but I think that it's a simplification which often makes CFS patients seem unreasonable to others. The issues and problems that surround CFS are really complicated, so it's easy to feel trapped in a Catch-22: i) Explain yourself fully and carefully and you'll have a lump of text which no-one will read or ii) simplify things in way which can be misunderstood and used against you - particularly given the prejudices which many already have about CFS patients.

If patients don't have stiffness/back pain and don't think massage would be helpful, then I am not going to give a damn that others think they should receive it any way. We seem unreasonable to others because they think we're tired and depressed and are refusing our CBT which will bring us back to normal. I don't think it's any more complicated than that.

 

[Firestormm]

Greetings,

Did y'all see the local TV News coverage of this report by any chance? http://www.meassociation.org.uk/?p=8088

'Data were available for 2,170 patients, of whom 1,669 (76.9%) were women. Current employment status was recorded for 1,991 patients (91.8%), of whom 811 patients (40.7%) were currently employed and 998 (50.1%) had discontinued their employment because of fatigue-related symptoms.

Older age, male sex, disability, fatigue, pain, and duration of illness were associated with cessation of employment. In a multivariable model, age, male sex, and disability remained as independent predictors.

Total productivity costs among the 2,170 patients due to discontinuation of employment in the years preceding assessment by a specialist CFS/ME service (median duration of illness = 36 months) were GBP49.2 million.

Our sample was equivalent to 4,424 UK adults accessing specialist services each year, representing productivity costs to the UK economy of GBP102.2 million. Sensitivity analyses suggested a range between GBP75.5-GBP128.9 million.'

Unfortunately, the Press Release from the Science Media Centre contained a prevalence figure for CFS/ME of 2.6% equating to some 1.3 million adults in the UK aged over 15 years.

This is CRAZY data. The 130 million is based upon 4,424 adults of working age. The TV News graphic showed the same cost against 1.3 million adults of working age (the 2.6% prevalence) assumed to have CFS/ME. NUTS!

For years we have been told that in the UK the prevalence TOTAL (including children) was 250,000. And yet now it is 1.3 million (adults)! INSANITY!

I did tell the reporters when they came a calling, but they obviously went with the Press Release from the Science Media Centre anyway. Needless to say I have requested that SMC explain how their prevalence figure of 2.6% (I am assuming the decimal point is in the wrong place) came to be.

It is looking like a figure for 'fatigue' referrals perhaps but certainly not a prevalence I have ever seen before for CFS/ME or 'ME' either come to that. I mean it would place my condition top of the tree of 'long-term neurological disease of unknown cause' wouldn't it?!

(That quote come from Paul Burstow Minister for Health repeated again four days ago: 'The Department classes CFS/ME as a long-term neurological disease of unknown cause' http://www.meassociation.org.uk/?p=8036)

 

[drjohn]

Letter, Re: 102m lost earnings due to chronic fatigue (Bristol Evening Post, 15 September 2011)

PERMISSION TO FORWARD AND RE-POST ON OTHER FORUMS, SOCIAL NETWORKING SITES AND USE IN NEWSLETTERS


Bristol Evening Post Letters.

While people with M.E. (Myalgic Encephalomyelitis) may have some interest in the cost of their illness - for the provision of services and welfare, for example - there is likely to be much more concern about the validity and reliability of the experimental design which produced the figures (102m lost earnings due to chronic fatigue, Bristol Evening Post, 15 September 2011 - http://www.thisisbristol.co.uk/poun...onic-fatigue/story-13333565-detail/story.html) and, most especially, about the implications of recommendations for treatment intended to enable them to recover a normally healthy working and social life. This Research Psychologist, diagnosed with M.E. 23 years ago, has never known a single person with M.E. who has not lost at least one of the following: an irreplaceable slice of life, whether child or adulthood; education or career; social inclusion; family or friendships; marriage; home and, sometimes even life itself, on which no price can be put.

The most obvious explanation for the massive disparity between the 1.3 million people said to have either M.E. or Chronic Fatigue Syndrome (CFS) and the 250,000 upper range figure of the Department of Health's estimate for the hybrid CFS/ME and, therefore, the putative costs found in the University of Bristol study (Collin et al., September 2011 - http://www.biomedcentral.com/content/pdf/1472-6963-11-217.pdf) led by Dr Esther Crawley, is that, by definition, they are considering different entities, probably not one, or even two, but several heterogeneous illnesses, which pollutes the purity of the sample studied and makes extrapolation of the conclusions to M.E. sufferers at least questionable. There never has been a patient number put on M.E., perhaps not surprisingly, because it still does not have a universally agreed diagnostic test, which would be necessary to identify the people to count with any accuracy. Despite the title of the paper and the terms within it, Dr Crawley always refers to it, in print and broadcast interviews (ITV, The West Country Tonight, 15 September 2011 - http://www.itv.com/westcountry-east/me-sufferers-need-help03544/) as 'this illness' as though there is only one, which should be counted and treated the same way.

It would seem logical that we may come closer to a more accurate figure for M.E. as a discrete illness by eliminating "chronic fatigue" and the conjoined "CFS/ME". We should expect the number of people with M.E. to become substantially smaller when the contaminating "fatigue" variable has been removed and also for the outcome to be quite different if the data were to be re-analysed using increasingly more rigorous discriminatory standards, such as the International Consensus Criteria (Carruthers et al., August 2011 - http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/abstract) than those used by Dr Crawley - whether the NICE guidelines of 2007, or any other criteria - which would admit M.E. sufferers that the ICC would exclude. This should be done quite simply because there were likely to be very few if any people with only M.E. (not chronic fatigue or CFS) in the study sample drawn from NHS treatment services because they would have been too ill to have travelled to the sessions to take part and, therefore, the conclusions derived should not be applied to them.

I hope that Dr Crawley's team will take up this suggestion. Such a re-analysis of the same data would be a valuable exercise, not only for more accurate costs but also for recommendations of appropriate treatment, since those which may be helpful to some people with chronic fatigue illnesses, may be ineffective or even harmful for M.E. sufferers. It would also set a new standard of excellence for increasingly refining experimental design that might be emulated by others.

Yours sincerely
drjohngreensmith@mecommunitytrust.org
Dr John H Greensmith
ME Community Trust.org

 

[Firestormm]

Thanks Dr John. You posted on AFME FB et al?

Still waiting for a reply from Science Media Centre. Have written to AFME also for an explanation.

I do believe though that the 2.6% prevalence must relate to 'fatigue' i.e. referrals to 'fatigue' clinics and not to CFS/ME.

The 1.3 million bears no relation to the actual research and the 2.6% prevalence was only mentioned in the Press Release not the research itself.

Press Office ball's up if you ask me.

 

[alex3619]

Hi Firestormm, something just leapt out at me: a major predictor is being MALE? Really? For CFS or ME? Something is wrong here. They are citing idiopathic chronic fatigue with an even bigger selection bias than I thought. Bye, Alex

 

[Firestormm]

I have been out of it for a few days Alex but the male/female thing was if I recall about there being a greater 'cost' in terms of males being out of work than females. That was the finding of the research - not my own opinion of course.

I don't recall the prevalence of CFS/ME being greater in females having been mentioned though this would of course drag the overall cost down i.e. had this been a 'male only' disease then the total cost would have been greater than predicted.

The main point is though that of the Press Release being wholly at odds with the actual research. And that said research may not truly reflect total 'cost' (depending on one's definition of course).

The extrapolated figures were - as I said - based on 4,400 presumed patients diagnosed with CFS/ME expected to attend these 'clinics' over the coming year and costing 100 million in lost earnings etc. The 'error' is with the Press Release issued by the Science Media Centre and I am still waiting a reply (have also asked for a statement from Action For ME as Sir Peter was in the studio when the feature was broadcast and his organisation sponsored the study).

Will let y'all know what occurs.

A 'cock-up' really.

 

[ukxmrv]

Figures are hard to find on ME. We did ask the DWP to collect data from GP's/PCTs in the UK using the REID (or is it the Read?) code but they declined to do this. This was done at the APPG meeting in parliament.

Did see some figures on CFS posted elsewhere that can give us a small hint. The DWP is keeping figures for at least one benefit (the DLA).

Disability living allowance (DLA) recipients in Chatham and Aylesford parliamentary constituency by main disabling condition, of physical and mental health disabilities, age and sexFebruary 2011

Chronic fatigue syndrome (total) 60 (female) 60 (male) 10 [doesn't add up of course]

Plus as examples of other neurological conditions

Multiple sclerosis 120 80 40

Neurological disease 200 100 100

http://www.theyworkforyou.com/wrans/?id=2011-09-06c.68401.h

 

[Angela Kennedy]

I have been out of it for a few days Alex but the male/female thing was if I recall about there being a greater 'cost' in terms of males being out of work than females. That was the finding of the research - not my own opinion of course.

I don't recall the prevalence of CFS/ME being greater in females having been mentioned though this would of course drag the overall cost down i.e. had this been a 'male only' disease then the total cost would have been greater than predicted.

And after 40 years of the Equal Pay Act and Sex Discrimination Act, we still have this situation.

That's not even taking into account, of course, the amount of money lost because of the ways unpaid, caring labour supports the workers of the land. If women are doing the bulk of this (the evidence suggests so) then, not only is that sort of labour being lost via sufferers, but by carers too.

 

[Esther12]

There's now a comment up from Tom Kindlon:

http://www.biomedcentral.com/1472-6963/11/217/comments#611696

Their claims about recovery were really scummy.

Productivity costs may not drop dramatically when CFS patients avail of current services

Tom Kindlon (2012-01-06 12:02) Irish ME/CFS Association email

The authors appear to do a reasonable job, given the limits of the data available to them, in calculating the productivity costs before Chronic Fatigue Syndrome (CFS) patients reach the services in the UK. However, the reader is left with the impression that the productivity costs will drop dramatically once the patient reaches the services: "We had no data with which to assess the rate at which people with CFS/ME recover and return to work, either with or without specialized treatment. According to a systematic review of the literature, the proportion of adults in employment increased following interventions for CFS/ME (individualised rehabilitation, cognitive behavioural therapy and exercise therapy) and decreased in observational studies with no intervention [1]. Evidence from a recent evidence trial of cognitive behavioural therapy and graded exercise therapy indicated a recovery rate of 30-40% one year after treatment [2]."

However it may not be the case that the therapy offered in UK clinics (or in similar clinics elsewhere) will reduce the productivity costs by much if anything. It is interesting to consider what happened in Belgium where rehabilitation clinics for patients satisfying the same CFS criteria [3] were treated using cognitive behavioural therapy (CBT) and graded exercise therapy (GET), the same therapies recommended for use in the UK [4]. Extensive external audits were performed there on these (Belgian) clinics. The main reports are in French and Dutch [5,6]; however, for those who can't understand either of those languages, a five-page summary is available in English [7]. It says, "Employment status decreased at the end of the therapy, from an average of 18.3% of a 38h- working week, to 14.9% [...] The percentage of patients living from a sickness allowance increased slightly from 54 to 57%."

Collin and colleagues claim, "Evidence from a recent evidence trial of cognitive behavioural therapy and graded exercise therapy indicated a recovery rate of 30-40% one year after treatment [9]." However, although a recovery measure was included in the trial's protocol[8], the authors have made clear [10] that no recovery rate was reported in the Lancet paper [9]: "t is important to clarify that our paper did not report on recovery; we will address this in a future publication."

Collin and colleagues also say, "[a]ccording to a systematic review of the literature, the proportion of adults in employment increased following interventions for CFS/ME (individualised rehabilitation, cognitive behavioural therapy and exercise therapy) and decreased in observational studies with no intervention [1]." This is indeed mentioned in the abstract of the review. However, when one reads the paper, the data on which this is based is very limited: 2 longitudinal studies reported employment at both times with no interventions[10,11], 2 rehabilitation programs [12,13], one trial of GET [14] and one trial of CBT[15]. The figures for the GET study are for everyone (n=66) who was in the trial so include the people who were in the other arm of the trial ( flexibility exercises and relaxation therapy) who then chose to do GET. So not those who had GET alone. This trial used the Oxford criteria [16] to define CFS, criteria which only requires the symptom of fatigue rather than the other symptoms required in the Fukuda criteria [3]. A study of those with fatigue has shown that satisfying the Fukuda CFS criteria [3] was the most powerful predictor of poor response to either GET or CBT [17]. So one cannot be extrapolate from such studies that those satisfying the Fukuda criteria, who are the group that Collin studied (and the group who used the Belgian clinics), will have the same improvements in employment measures. Similarly, the trial of CBT [15] didn't use the Fukuda criteria - patients either satisfied the Oxford criteria [16] or else criteria for F48.0 (Neurasthenia) [18] i.e. they didn't all satisfy CFS criteria at all. Employment data was only available for 51 of the 80 individuals who started CBT (64%). Finally, in one of the rehabilitation trials quoted [12], only two individuals took part it (at baseline neither was in employment but at follow-up, one of the two was).

All in all, the evidence that CBT, GET and similar interventions will increase productivity is not strong. If governments, and those involve in providing health services, want to decrease the costs associated with CFS, throwing more and more money at CBT/GET services may not be the answer; other methods of treating the condition should be investigated. As the authors have shown, costs associated with the condition per individual are substantial, so more expensive therapeutic strategies can be justified on cost grounds alone.

References:

[1] Ross SD, Estok RP, Frame D, Stone LR, Ludensky V, Levine CB: Disability and chronic fatigue syndrome: a focus on function. Arch Intern Med 2004, 164:1098-1107.

[2] White P, Goldsmith K, Johnson A, Potts L, Walwyn R, Decesare J, Baber H, Burgess M, Clark L, Cox D, et al.: Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. Lancet 2011, 377:823-836.

[3] Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A: The chronic fatigue syndrome: a comprehensive approach to its definition and study. International Chronic Fatigue Syndrome Study Group. Ann Intern Med 1994, 121:953-959.

[4] NICE: Chronic fatigue syndrome/Myalgic encephalomyelitis (or encephalopathy); diagnosis and management. National Institute for Health and Clinical Excellence (NICE); 2007.

[5] Rapport dvaluation (2002-2004) portant sur lexcution des conventions de rducation entre le Comit de lassurance soins de sant (INAMI) et les Centres de rfrence pour le Syndrome de fatigue chronique (SFC). 2006.
<http://www.inami.fgov.be/care/fr/revalidatie/general-information/studies/study-sfc-cvs/pdf/rapport.pdf> . Accessed September 16, 2011 (French language edition)

[6] Evaluatierapport (2002-2004) met betrekking tot de uitvoering van de revalidatieovereenkomsten tussen het Comit van de verzekering voor geneeskundige verzorging (ingesteld bij het Rijksinstituut voor Ziekte- en invaliditeitsverzekering) en de Referentiecentra voor het Chronisch vermoeidheidssyndroom (CVS). 2006. Available online: <http://www.inami.fgov.be/care/nl/revalidatie/general-information/studies/study-sfc-cvs/pdf/rapport.pdf> Accessed September 16, 2011 (Dutch language version)

[7] Stordeur S, Thiry N, Eyssen M. Chronisch Vermoeidheidssyndroom: diagnose, behandeling en zorgorganisatie. Health Services Research (HSR). Brussel: Federaal Kenniscentrum voor de Gezondheidszorg (KCE); 2008. KCE reports 88A (D/2008/10.273/58) [The main link seems to (temporarily?) not to work on the Belgium government website; it can be seen combined with another file at: http://bit.ly/t6GxcN ; alternatively it is on its own at: http://sacfs.asn.au/download/ReportCFS-NL.pdf ]

[8] White PD, Sharpe MC, Chalder T, DeCesare JC, Walwyn R; PACE trial group. Protocol for the PACE trial: a randomised controlled trial of adaptive pacing, cognitive behaviour therapy, and graded exercise, as supplements to standardised specialist medical care versus standardised specialist medical care alone for patients with the chronic fatigue syndrome/myalgic encephalomyelitis or encephalopathy. BMC Neurol. 2007 Mar 8;7:6.

[9] White PD, Goldsmith KA, Johnson AL, Walwyn R, Baber HL, Chalder T, Sharpe M, on behalf of the coauthors. The PACE trial in chronic fatigue syndrome - Authors' reply. The Lancet - 28 May 2011 ( Vol. 377, Issue 9780, Pages 1834-1835 ) DOI: 10.1016/S0140-6736(11)60651-X

[10] Tiersky LA, DeLuca J, Hill N, et al. Longitudinal assessment of neuropsychological functioning, psychiatric status, functional disability and employment status in chronic fatigue syndrome. Appl Neuropsychol. 2001;8:41-50.

[11] Vercoulen JH, Swanink C, Fennis J, Galama JM, van der Meer JW, Bleijenberg G. Dimensional assessment of chronic fatigue syndrome. J Psychosom Res. 1994; 38:383-392.

[12] Dyck D, Allen S, Barron J, et al. Management of chronic fatigue syndrome: case study. AAOHN J. 1996;44:85-92.

[13] Marlin RG, Anchel H, Gibson JC, Goldberg WM, Swinton M. An evaluation of multidisciplinary intervention for chronic fatigue syndrome with long-term follow-up, and a comparison with untreated controls. Am J Med. 1998;105:110S-114S.

[14] Fulcher KY, White PD. Randomised controlled trial of graded exercise in patients with the chronic fatigue syndrome. BMJ. 1997;314:1647-1652.

[15] Akagi H, Klimes I, Bass C. Cognitive behavioral therapy for chronic fatigue syndrome in a general hospital: feasible and effective. Gen Hosp Psychiatry. 2001;23:254-260.

[16] Sharpe MC, Archard LC, Banatvala JE, et al. A report--chronic fatigue syndrome: guidelines for research. J R Soc Med. 1991 Feb;84(2):118-21.

[17] Darbishire L, Seed P, Ridsdale L. Predictors of outcome following treatment for chronic fatigue. Br J Psychiatry. 2005 Apr;186:350-1.

[18] ICD-10. The ICD-10 classification of mental, and behavioral disorders. Geneva, World Health Organization, 1992.

 

[alex3619]

There is something else lurking in the background that I think I want to comment on. Women are indeed paid unfairly on average, and they also represent a large percentage of the unpaid work force, including carers and volunteers. Ninety percent of the volunteers and professional carers who have helped me are women. The loss of the unpaid roles will most probably not be included in any economic model, and yet they are a significant contributor to society.

I would also like to say thanks to Tom Kindlon for yet another excellent critique.

Bye, Alex

 

[Dolphin]

There is something else lurking in the background that I think I want to comment on. Women are indeed paid unfairly on average, and they also represent a large percentage of the unpaid work force, including carers and volunteers. Ninety percent of the volunteers and professional carers who have helped me are women. The loss of the unpaid roles will most probably not be included in any economic model, and yet they are a significant contributor to society.

I would also like to say thanks to Tom Kindlon for yet another excellent critique.

Bye, Alex

These two papers from London (two people were involved in both) did include info on this:

The hidden cost of chronic fatigue to patients and their families.

BMC Health Serv Res. 2010 Mar 4;10:56.

Sabes-Figuera R, McCrone P, Hurley M, King M, Donaldson AN, Ridsdale L.

Source
Centre for the Economics of Mental Health, Health Services Research Department, Institute of Psychiatry, King's College, London, UK. ramon.sabes-figuera@kcl.ac.uk

Abstract

BACKGROUND:

Nearly 1 in 10 in the population experience fatigue of more than six months at any one time.

Chronic fatigue is a common reason for consulting a general practitioner, and some patients report their symptoms are not taken seriously enough.

A gap in perceptions may occur because doctors underestimate the impact of fatigue on patients' lives.

The main aim of the study is to explore the economic impact of chronic fatigue in patients seeking help from general practitioners and to identify characteristics that explain variations in costs.

METHODS:

The design of study was a survey of patients presenting to general practitioners with unexplained chronic fatigue.

The setting were 29 general practice surgeries located in the London and South Thames regions of the English National Health Service.

Use of services over a six month period was measured and lost employment recorded.

Regression models were used to identify factors that explained variations in these costs.

RESULTS:

The mean total cost of services and lost employment across the sample of 222 patients was 3878 pounds for the six-month period.

Formal services accounted for 13% of this figure, while lost employment accounted for 61% and informal care for 26%.

The variation in the total costs was significantly related to factors linked to the severity of the condition and social functioning.

CONCLUSIONS:

The economic costs generated by chronic fatigue are high and mostly borne by patients and their families.

Enquiry about the functional consequences of fatigue on the social and occupational lives of patients may help doctors understand the impact of fatigue, and make patients feel better understood.

PMID: 20202216

Free full text at: http://www.biomedcentral.com/1472-6963/10/56

-----

The economic cost of chronic fatigue and chronic fatigue syndrome in UK primary care.

Psychol Med. 2003 Feb;33(2):253-61.

McCrone P, Darbishire L, Ridsdale L, Seed P.

Source
Centre for the Economics of Mental Health, Health Services Research Department, Institute of Psychiatry, King's College, London.

Abstract

BACKGROUND:

Chronic fatigue and chronic fatigue syndrome are most often encountered in primary care settings.

Given the disabling nature of chronic fatigue it may have a substantial impact on service use and costs as well as on employment.

This study estimates this impact.

METHOD:

Patients presenting to general practitioners with unexplained chronic fatigue were recruited to the study.

Service use over a 3 month period was measured and lost employment recorded.

These data were used to estimate economic costs.

Patients with chronic fatigue syndrome were compared to patients with only chronic fatigue using a multiple regression model with sample differences controlled.

RESULTS:

The mean total cost of services and lost employment across the sample was Pound Sterling1906 for the 3-month period with formal services accounting for 9.3% of this figure.

Service use was higher for patients with chronic fatigue syndrome compared to those with chronic fatigue alone.

Total 3-month costs were on average higher for chronic fatigue syndrome (Pound Sterling3515 v. Pound Sterling1176) but when sample differences were taken account of the mean difference was reduced to Pound Sterling1406 (P = 0.086).

Over 90% of the cost was accounted for by care provided by friends and family members and by lost employment.

Patients with dependants had significantly higher costs than those with none and costs were also significantly higher for greater levels of functional impairment.

CONCLUSION:

Chronic fatigue imposes substantial economic costs on society, mainly in the form of informal care and lost employment.

Treatments need to be developed which recognize these impacts.

Free Full text at: http://www.me-cvs.nl/index.php?pageid=5419&printlink=true&highlight=chronic

 

[Megan]

Thank you Tom Kindlon for the excellent letter. And good points Alex.

I had done some reading early last year on economic costs, including the US papers and an Australian one. Apart from loss of home duties costs, there are a whole host of other costs that tend to get left out of economic papers (though some have them, but then they miss others).

The single most important one left out, uncluding the UK one under discussion here, is the cost of lost of income due to lowered work capacity of those who continue to work. ie the cost of underemployment (those working part time, working in jobs below ability and reduced productivity due to illness at work). A number of studies show such productivity losses are likely to make at least half the productivity losses associated with ME/CFS (Reynolds et al 2004, Jason et al 2008, Lin et al 2001, Bombardier et al 1996).

Others costs include:

* The cost of reduced lifetime productivity due to lower educational attainment for those struck with CFS at a young age (Lin et al 2011 shows this to be significant - approx 25%)

* The cost of lost household productivity (reduction in home duties mentioned by Alex).

* The costs of household carers including their reduced income (informal care cost)

* The cost of community care and support services such as council or other paid help with housework, meals etc.

* Many studies don't include medical costs, and those that do tend to assume minimum fees, and exclude a whole range of services such as medical testing and non refundable costs.

* The cost of health supplements (and we all know how much they are!)

* The the net disease burden (cost of lost quality of life to sufferers)

* Cost of psychological counselling


As well as leaving out all the above costs, I also found these few things odd in the paper under discussion:

1) they are not giving an annual cost, but a cost to date for those appearing at the practice. obviously one needs a much longer term vew of their illness to get an idea of total cost.

2) the use of medians instead of means in counting duration of the illness will result in a lower figure due to exclusion of long term cases

3) the cost per person was 44,515 pounds for men and 16,130 pounds for women. I know there was a slightly higher employment rate for women but how can this explain such a difference?

 

[Dolphin]

Thanks Megan for listing all those points

3) the cost per person was 44,515 pounds for men and 16,130 pounds for women. I know there was a slightly higher employment rate for women but how can this explain such a difference?

See Table 3.
Remember that unlike most studies, this money can be over more than one year.
A lot of the costs in this study are from the employment realm.

 

[Vitalic]

which must be accounted for in estimates of the cost-effectiveness of ME or CFS interventions and service provision.

This line rather jumped out at me. Given that the only current ME/CFS interventions are CBT/GET, and that we know there is dispute over the cost-effectiveness of CBT/GET even after the PACE trials, what they are essentially saying here is that the dispute should come down in favor of continued funding for CBT/GET as the primary intervention for the illness. My interpretation may be incorrect, but if true it's extremely deceptive and underhand. They could have added clarity by stating "current and future" interventions or the cost of research into new interventions, but the way it's worded sounds more like a defense of the status quo to me.

 

[Dolphin]

which must be accounted for in estimates of the cost-effectiveness of ME or CFS interventions and service provision.

This line rather jumped out at me. Given that the only current ME/CFS interventions are CBT/GET, and that we know there is dispute over the cost-effectiveness of CBT/GET even after the PACE trials, what they are essentially saying here is that the dispute should come down in favor of continued funding for CBT/GET as the primary intervention for the illness. My interpretation may be incorrect, but if true it's extremely deceptive and underhand. They could have added clarity by stating "current and future" interventions or the cost of research into new interventions, but the way it's worded sounds more like a defense of the status quo to me.

It's a while since I read the paper but I don't recall any talk of other interventions so this seems a reasonable interpretation.

I read a summary in a local group of Dr. Crawley's talk to the Action for ME research day thing (in October, I think) (not sure if there is something online on this). She said the NOD (the database that is collecting results about the services) could be useful for showing that services are worthwhile to service commissioners. (She had been given money by Action for ME to research it and I think then got other funding). This suggests that research on this won't necessarily be unbiased - it suggests that data will be searched/dredged so it can be used to advocate for the services (and data that does not suit may not be highlighted).