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UK-Impact of CFS/ME

Discussion in 'General ME/CFS News' started by Nielk, Sep 15, 2011.

  1. Esther12

    Esther12 Senior Member

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    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.
    WillowJ likes this.
  2. floydguy

    floydguy Senior Member

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    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.
  3. Esther12

    Esther12 Senior Member

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    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.
  4. floydguy

    floydguy Senior Member

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    So can't massage. The difference with cancer is nobody thinks that anxiety is the root cause of the disease.
  5. Esther12

    Esther12 Senior Member

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    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.
  6. floydguy

    floydguy Senior Member

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    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.
  7. Firestormm

    Firestormm Senior Member

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    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) ;)
  8. drjohn

    drjohn Senior Member

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    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
  9. Firestormm

    Firestormm Senior Member

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    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.
  10. alex3619

    alex3619 Senior Member

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    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
  11. Firestormm

    Firestormm Senior Member

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    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.
  12. ukxmrv

    ukxmrv Senior Member

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    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
  13. Angela Kennedy

    Angela Kennedy *****

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    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.
    Wildcat likes this.
  14. Esther12

    Esther12 Senior Member

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    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.

  15. alex3619

    alex3619 Senior Member

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    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
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  16. Dolphin

    Dolphin Senior Member

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

    -----
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  17. Megan

    Megan Senior Member

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    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?
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  18. Dolphin

    Dolphin Senior Member

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    Thanks Megan for listing all those points
    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.
  19. Vitalic

    Vitalic Senior Member

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    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.
  20. Dolphin

    Dolphin Senior Member

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    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).

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