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"cfs affects 17 million worldwide" - source?

Discussion in 'Action Alerts and Advocacy' started by caledonia, Jul 29, 2010.

  1. caledonia

    caledonia

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    I'm doing research for a YouTube video on CFS prevalence. Does anyone know the source of this figure?

    The last good prevalence data came from Leonard Jason's 1999 prevalance study which showed .42% of the US affected - which based on 1993 census data of the US population being 198 million comes to 800,000.

    That number has been extrapolated to "over a million" based on more a more recent US population of around 300 million.

    So where did the 17 million come from? Is that another extrapolation based on .42% times the world population of 1993? (The numbers don't add up unless you use a world population of 4 billion, which is way low for 1993.)

    Or did someone add up all of the various countries estimates of CFS? Where would someone even find this data?
  2. George

    George waitin' fer rabbits

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    Nobody knows, I've been looking for the fountain head of that number for going on two years now. Everybody quotes it but nobody takes responsibility for it. I will say this though, if you go to a good website that shows epidemic spread numbers for AIDES based on decade, sex, partners, transfusion and behavior factors and apply it to CFS that 17 million number works if you start in 1920 and go to 2002. The next generation turn over goes from 17 million to 184 million between 2002 and 2022.
  3. caledonia

    caledonia

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    Thanks George! Quite interesting. No wonder I was having trouble. I'll either have to dig a little deeper somehow, or just leave it as a mystery or speculation.
  4. George

    George waitin' fer rabbits

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    Hey I was just looking at a paper that quotes the 17 million number and they have it referenced this way. . .

    Ranjith G: Epidemiology of chronic fatigue syndrome. Occup. Med. (Lond.) 55(1), 13-19 (2005)

    see if you can get anything off that.
  5. Hope123

    Hope123 Senior Member

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    I didn't see this number until quite recently and I have looked at some of the CFS literature in the past. I think it came after XMRV came on the scene and has to do not so much with "CFS" but rather with estimates of prevalence of XMRV, which includes both symptomatic CFS, infected carriers, people with prostate cancer (not all, as we know so far), etc. Did it come from Dr. Mikovits or WPI?

    I haven't looked at George's reference. No full-text available for me but abstract is from Psychological Department of King's College, London, and they state CFS is "relatively rare" - paper might focus on "chronic fatigue."

    My feeling is that this figure might be overblown or is not particularly accurate based on the data we have to date so I would use it with caution. Dr. Jason's studies on CFS are confined primarily to the US but I trust his numbers for the US. If they extrapolated his data to the world, that might not be accurate. Only time will tell.
  6. caledonia

    caledonia

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    That study wasn't helpful, but I think I had a breakthrough:

    Afari / Buchwald 2003
    http://ajp.psychiatryonline.org/cgi/content/full/160/2/221#SEC2

    CFS prevalence varies from 0.007% to 2.8%

    world population 2003 = 6,317,426,395

    .0028 x 6,317,426,395 = 17,688,793 aha!

    So this would be taking the high number from Afari/Buchwald's study (which is a lot less than Jason's number, and so would be conservative), and multiplying it by the world population at the time of the study.
  7. caledonia

    caledonia

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    Another breakthrough:

    I found it in the Lombardi et al (Science 2009) study. Right in the abstract.

    "Chronic fatigue syndrome (CFS) is a debilitating disease of unknown etiology that is estimated to affect 17 million people worldwide."
  8. George

    George waitin' fer rabbits

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    :victory::victory:
    Great Catch Caledonia! I think you have found the fountain head for the original number.​
    :victory::victory:

    Hope123, this number has been around about two years before XMRV came on the scene. If XMRV prevalence rates hold up to the 3.5% world wide which is a reasonable estimate that would be around 200 million infected. So the numbers surrounding XMRV are not anywhere in the same ballpark of CFS. That's why there is speculation that XMRV may be a vector for many other illnesses.

    If you start adding "known" numbers world wide for ME/CFS you (with a little speculation on the blanks) do come up with around 17 million for CFS for instance 850,000 in the US, 250,000 in the UK, 350,000 in Germany and so on and so forth. I tried to add them all up one time and my head just about exploded. (grins)
  9. Hope123

    Hope123 Senior Member

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    Hmm........doesn't 2.8% = 0.028 rather than 0.0028=0.28%? When I multiplied it with the population figure you have, I get 176 million. This is the higher number from Afari.

    I agree though that if you're using 0.0028=0.28%, this is less than Jason's figure of 0.4%.

    I am concern about extrapolations though as although some people can take this figure with a grain of salt and the precautions needed, others will use it without caution and, if it doesn't hold up, we end up with egg on our face. I've seen people misinterpret Jason's study on mortality in CFS and another experienced CFS researcher has seen this happen with statements about heart issues in CFS.
  10. Dolphin

    Dolphin Senior Member

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    If one uses the 0.4 figure from Jason (0.422 to be more accurate http://archinte.ama-assn.org/cgi/content/full/159/18/2129 ), one might be able to get it as it applied to adults. The prevalence for children is a lot smaller.

    But extrapolations certainly have risks.
    Although the study in Nigeria http://www.ncbi.nlm.nih.gov/pubmed/17439996 suggested a prevalence of 0.7% there using similar methods to the Chicago study so the figure may not necessarily be smaller than 17 million.
    Also some of those excluded for having other medical or psychiatric conditions in the prevalence studies such as Jason et al., 1999 may also have CFS really i.e. if there was a simple test where one didn't have to exclude people because they have "fatigue" or whatever.
  11. Dolphin

    Dolphin Senior Member

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    Here is an extract from that paper (a lot of it is on fatigue, etc):

    The Nigerian study (Njoku, Jason & Torres-Harding) came out after (2007).
  12. muffin

    muffin Senior Member

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    Next question on figures we use: "1 out of 14 people are carriers for XMRV"???

    Does anyone know where the figure "1 out of 14 people are carriers for XMRV"????

    I have used that number but forgot where I found it. Ideas?
  13. V99

    V99 *****

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    The 1 in 14, is 7% of population with XMRV. 100 divided by 7 equals 14.
  14. muffin

    muffin Senior Member

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    Thanks V99. I am guilty of using figures that I forget where I read them from. Then I wonder if I really made them up in my sad little head!!!
  15. V99

    V99 *****

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    There is too much happening right now, and all we want is the Alter paper. It befuddles the brain. I posted the numbers, but didn't really know if they were correct. (giggles)
    My excuse at the mo is the strong pain killers I am now trying for my duff wrist. It is so much fun. So very floaty light. Hopefully it will wear off soon. (giggles)
  16. caledonia

    caledonia

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    Oh Hope, you're right. I was wondering if my math skills were a little suspect. I'm glad I put this out there.

    So we're looking for a number that would be around .2% or .3%. And then I'm not sure what year of world population to base it on.

    I also found this extrapolation on wrongdiagnosis.com.
    http://www.wrongdiagnosis.com/c/chronic_fatigue_syndrome/stats-country.htm

    That one uses the very conservative CDC figure of .18% which is close to .2%.
    (.18%) x 6 393 120 940 = 11 507 617 (world population 2004)
  17. George

    George waitin' fer rabbits

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    Thanks Dolphin for pulling out the relevant info on that paper.

    I guess the short answer is nobody has been keeping track and it's all guess work. Looks like the formula works something like this. . .

    You take a country's population and the currently known number of CFS patients and divided to get a prevalence rate.
    Do that with 10 countries, let's say
    Take those 10 number and get an average
    Then multiply that average by the current world population

    Anybody got stats on say 10 countries we could figure out our own CFS numbers.

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