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Economic Cost Estimates for CFS Skyrocket

Discussion in 'Latest ME/CFS Research' started by Cort, Jan 25, 2011.

  1. Cort

    Cort Phoenix Rising Founder

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    This really appears to bump economic cost estimates up. I don't know what definition they used but for CFS to cost Georgia $450 million dollars in healthcare expenditures ALONE and up to 1.2 billion dollars in lost productivity....that's really something. Imagine what the figures would be for California.

  2. August59

    August59 Daughters High School Graduation

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    It gives an impression that people with CFS are poor and uneducated. Mean household income of $23,076 seems to imply that only the poor have CFS or that more financially succesful families are being misdiagnosed or not being reported in some way. The amount of $5,683 is too low and one-quarter of this is paid directly out of pocket ($1421) is wishful thinking. "Lower educational attainment accounted for 19% of the reduction in earnings", since when does a disease care about how much education some has or how much money they make.

    This must be another one of the CDC's / Georgia's telephone surveys. This study may have some advantage to us for funding reasons, but it appears to be poorly executed and/or constructed to me. The conclusion may look good and doesn't appear to match the criteria within the results. Imagine what it would be if they used real numbers!!
  3. Dolphin

    Dolphin Senior Member

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    It uses the so-called "empiric" criteria to define CFS:
    but one could certainly calculate the cost to the country if one wanted. The cost was always likely to be bigger given the prevalence went from .235% to 2.54% even if some of the "new" people might not be that medically ill.
  4. taniaaust1

    taniaaust1 Senior Member

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    I'd believe those figures as most CFS/ME households do end up poor... with the CFS/ME one usually unable to work or on a disability pension. There is also the added factor that some partners of ones with CFS/ME end up loosing their jobs due to looking after the other or having to leave their job to became a carer for their partner.

    Im not even married but just have a boyfriend who I dont even live with who was taking time off work to get me to medical/specialist appointments a couple of times a week .. he's now lost his job due to me (due to my CFS/ME). :( .. so yeah i believe it when they have household earnings as low, looking after me is at least a 2 day a week job for whoever is doing it.

    Many with ME/CFS do have their schooling affected, (a common theme for many of us including myself is getting it while at collage and then having to drop out) and once you have CFS/ME most dont do any futher studies as one is too busy just trying to look after oneself and survive, (the very symptoms of it affecting the memory etc can make further study near impossible for many of us).
  5. LaurieM

    LaurieM

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    Cost to the UK economy

    When I became ill in 2005 I remember reading the cost of ME to the UK economy was 6.4bn, but have since lost the reference (probably filed somewhere).

    I have just had a quick online search and found the following US/UK research article from 2008 about 'distinct subtypes of ME': http://www.innovations-report.de/html/berichte/medizin_gesundheit/bericht-109477.html

    The relevant section to quote being:
    6bn is approx $9bn(US) - so I wasn't too far out.

    I have been continually so frustrated by this issue. If the economy is losing so much annually through lost productivity, tax revenues, and benefit payments, then why are the government so short-sighted in not putting a just a few percent of 1 years losses into proper research (each 1% = 60M). The last figures (2009) show just 109,000 spent on research. It seems that the UK Government (of any political persuasion) either like to lose 6bn per year, do not want us to get better, or are just economically incompetent!
  6. oceanblue

    oceanblue Senior Member

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    Study based on unrepresentative sample?

    It was a telephone survey and I think these figures may be revealing a bias in the telephone approach.

    Looking at the original population study (ok, based on my memory of reading it), they only managed to complete surveys with something like one third of households they tried to contact. Most of the two-thirds they couldn't contact were either because no one was ever in (and answerphone messages weren't returned) or the person called refused to answer any questions. Potentially this could bias the survey against busy people who are more likely to be working (and healthy).

    I'd expected the study to adjust for this problem by comparing, say, the incomes of households of those in the survey with household incomes for the area as a whole that they were surveying. Then they could weight the sample so that it was representative of the whole population. But I couldn't see any sign they had tried to do such a comparison or make any adjustments.

    The telephone survey may have produced in an over-representation of poorer households.

    This bias issue is separate from the points made by taniaust1 about the impact of CFS on education as well as employment.
  7. caledonia

    caledonia

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    They estimate the prevalence of CFS at 4 million. That means they're using the Empiric definition. You can't have it both ways. What they're estimating is mainly the cost of having depression or other fatiguing illnesses, with, if they're lucky, a little ME/CFS thrown in.
  8. Marty

    Marty Senior Member

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    Who cares? The politics are prime for cost reduction right now in the US, and we know the cost of this disease is huge, so let's make cost a target of our political activism this month.
  9. Cort

    Cort Phoenix Rising Founder

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    Thanks for clearing up some facts about the paper. I thought it must be CDC because it was in Georgia - but I didn't recognize any names. I'm with Marty on with this - the silver lining of studies like these that use the ED is that they also show greatly increased costs to society..... Over a billion dollars a year costs for Georgia - a relatively poor state - that is really something. These are high, high, high societal costs for a disorder that is ranked somewhere around 205 of the 215 diseases and conditions the NIH studies.

    How about if we get them to allocate more money based on the ED estimate and then get rid of it :).
  10. Cort

    Cort Phoenix Rising Founder

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    "Lower educational attainment accounted for 19% of the reduction in earnings" - hah! I get what you're saying but imagine this is one of the factors all surveys of this type try to take into account. It would be fascinating to do a survey that took into account more factors - time of life the disease hit, the impact it had on educational opportunities...

    I got CFS early; it knocked me out of the University but eventually I went back and earned a BS and an MS but it took years! So I am fairly education rich and exceedingly income poor!

    Good point!
  11. SilverbladeTE

    SilverbladeTE Senior Member

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    LaurieM

    because our governments are greedy and stupid and *entirely based around short term idiot-Democracy!* ;)

    by this I mean, rather than having long thought out plans, the turn-around of parties AND figures in power, no coherent plans are drawn up for many things without very serious, often lethal and horrendous messes, kicking someone in power right in the pants, or out of a job, and thus forcing others to actually get off their fat arses and DO something.

    Plus, many of our politicians are bloody useless, they've never actually had a REAL job, a real NORMAL lifestyle, or a grounding in the sciences, etc.
    Good article in the BBC today shows that we've swung back again to the "elites" running the country, rather than a meritocracy with folk of all types and actual ability.
    When you've had the best of life, know you'll never want no matter what happens, never suffered, never been unemployed, never seen yer mates get splattered because of some war some idiot started...you don't have much incentive or likelyhood to be so understanding or compassionate of other folks' suffering and needs. That's just Human Nature.


    Another big factor is obviously, *some people*, whoever the hell it is, or why, wants ME/CFS to *go the hell away and die off quietly and not attract attention*.
    Now this could be the exec heads of insurance companies (or social security systems) wanting to be able to simply deny ME/CFS victims even exist or need help to save money in the short term.
    See UNUMProvident's "Vuluture Award" for that kind of evil, ick.
    Hey it wouldn't matter if the statisticians/accountants told 'em this was bad long term, if the execs only saw the next few quarterlies as their Be All and End All. Man, the idiocy that goes on, see the Banking Crisis for proof of such economically suicidal view points and actions, doh!!

    or it could be as some suspect, much darker than that, hey if it DID start with contaminated vaccines, or worse...wooha! that's a hot potato they'd really want to disappear.

    So we have to overcome this huge, deliberate, dam of inertia against us.


    Cort
    yeah, alas, sympathy and common sense are no use with these scumbags and nitwits in power :/
    We need either to prove this disease is very expensive or very dangerous, to get anything done.

    If we had massive ME/CFS outbreaks, especially in the universities and boardrooms of the elite, THEN we'd sure as hell get something done, lol.
    Otherwise, pointing out the huge financial impact is prime, and, if it is proven to be XMRV and infectious, we can show this cost will merely INCREASE unless they pull their collective finger out.

    And as a worse case scenario, with so many victims not receiving treatment, if it thus mutates into a more infectious, maybe airborn form...wow...
    like letting HIV/AIDS get out of control because it was a "Gay Plague" etc, let it spawn many strains making it more lethal and harder to combat and thus more of a threat ot everyone than it should have ever achieved if folk had pulled their finger out.

    (and yes I know, not everyone in power is a ratbag or stupid, alas, many are, or more often, the "collective whole" drags it all down to heck, sigh)
  12. SpecialK82

    SpecialK82 Senior Member

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    I'm glad that the CDC was able to prove to themselves that there are real and shocking costs associated with our illness, amazing that they came up with what seems to be the "right answer" from going about the study in the wrong way. This needs to be discussed at the the next CFSAC meeting - it makes common sense to throw $500 million at this illness when it is costing the US billions doesn't it? I know this logic has been argued before - what can we do to make them see it?

    Being an accountant in my former life I can only guess that, in part, the message gets lost because the $$ lost are coming out of different budgets than the ones that would gain - ie. currently disability benefits are higher when we don't invest in research, tax revenues are lower as well, but since med research is a different budget, they have a tough time arguing to increase their budget to eventually decrease others - they probably have to justify their own as if it's in a vacuum - med research probably always has about x% of the total US budget $$, so the powers that be may look at it like they would have to decrease $$ for another illness in order to increase CFS funding ~ sigh.

    Now that we have hard numbers from the CDC, I think we need to use them every time that we can in our advocacy. It's math - let's use the logic to ask why they are willing to lose that kind of money every year!
  13. Marty

    Marty Senior Member

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    from SilverbladTE
    from Specialk82
    from SpecialK82
    There is a May 12th strategy for this year.
  14. Snow Leopard

    Snow Leopard Senior Member

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    So the disease has annual economic costs of over $90 billion per year and the government is content with spending only $10 million annually on research?
  15. alex1968

    alex1968

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    Hi all,

    Great thread, from a personal perspective I have gone from being in the top 1% of earners in the UK before CFS, to unemployed, what I paid in tax each year was higher than the average wage in the UK by a big margin. My doctors have known I am ill for many years, but only recently (once I lost my job!) really took me seriously. It is a joke, I employed over 20 people, my illness put their employment at risk too, luckly for everyone I bailed out before it was too late and made sure that everyone (including me) was ok. Govenments round the world are completely short sighted in this approach, CFS/ME does not fit the normal pattern of illness, the process of waiting at least 6 months for a verbal diagnosis is a joke, doctors should be more proactive and specifically order the correct blood tests early on, as soon as the ellimination tests have been done, this could keep more of us at work.....

    It pays to get us back into being tax payers, simple economics.
  16. IamME

    IamME Too sick for an identity

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    There's already a cost "burden" for the State from disabled people as a whole anyway, and what reaction to that have we seen? Enforced cutbacks of disability benefits, state care and an ever more vociferous pushing of "rehabilitation" like CBT/GET. It matters little if it's not effective in "some" cases - they've got to try and try harder, is their mindset. It's not as if this avowed stressing over our expensive incapacitation is actually being translated into social/economic support and the thinking is likely to move towards "prevention" even more, whih for pwME means "an early return to work/ discourage tking time off" etc.

    Vulnerable people can't compel the powerful to do what they want by suggesting they need to save money. They're already frothing at the mouth at the prospect of tightening those purse strings even more, and they don't care who they trample over to do it if they can get away with it. They're not going to admit they're wrong so easily. It seems whatever the problem is, costs and deficits only compel those in power to kick the most vulnerable more.

    We're already suffering from the the accountant's hand being on the tiller - the result is the economic model of disability which is more important to politicians than the medical model- not tht we ever got much of that. Just because they care about our ability to make money and pay taxes won't make them care about our health! And to us, it's the latter that's really important. For all they care we might as well be merely "unemployed". There's already statments by the psychs about returning people to work "with or without symptoms" somewhere.

    IMO it's better to concentrate on the threat to public health of an unchecked infection that can strike anyone and the embarrassment (to them) of the human rights issues and science fraud. We need to work on describing the disease, the actual problem; remember most people in power, like the general public, think the problem is benign psychosomatic fatigue and stress! We get anger and CBT psychobabble for being out of work only. Shaming and embarrassing the "experts", the great and good is an inevitable and necessary part of this process.

    Saying we're too expensive to keep, is another stick to beat us with. It's a bit different for illnesses lucky enough to already be accepted as a proper disease though in this climate it's every disease for itself.

    So sorry, I disagree this approach is right and think it can lead to even worse in its naivety.
  17. IamME

    IamME Too sick for an identity

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    How common are inpatient hospitalisations for CFS in the USA? What is "other medical supplies and services" that isn't an RX or hospitalisation? That seems a bit suspect.

    Not that I trust thiese figures particularly, being done on Reeves' population sample definition of chronic fatigue/stress.

    The public health response to costly prescribing is to define it as over-prescribing. The above figures probably include nonspecific prescribing, ie. things people may take anyway for comorbidities but which wouldn't by themselves need indefinite time off work. Unless everyone in the US is now getting tailored immunotherapy...
  18. Enid

    Enid Senior Member

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    Thanks to you all for the facts - I think co-morbidities (or developed diseases after the "event") well worth taking into account) Eg I've what my Neuroloist says is reactive Osteoarthritis and Osteoporosis. And classed disabled. (He believes Viral from the beginning 11 years ago)
  19. Dolphin

    Dolphin Senior Member

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    Yes, up till now, one would find Reeves' name on virtually all the papers from the section. He is heavily acknowledged in this - he would have been a co-author if he was still in the section.
  20. Dolphin

    Dolphin Senior Member

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    Here is what they say on this:
    ----------
    A lot of people in the other age groups aren't going to be economically active even if they don't have CFS.

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