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Population statistics for chronic diseases.

Discussion in 'Action Alerts and Advocacy' started by currer, Jan 24, 2012.

  1. currer

    currer Senior Member

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    I am interested in finding out whether our governments keep statistics on chronic diseases in the population.

    Initially, I thought "of course they do" but it seems that only some disease statistics are kept.

    Cancer statistics are easy to find, but what about other diseases that may be connected to HGRVs such as Parkinsons disease? Chronic disease statistics do not seem to be recorded. We are used to being told that no-one knows exactly how many people have ME. How can a government tell whether there is a growing health problem if they do not keep health statistics for chronic illnesses?
    ggingues likes this.
  2. Esther12

    Esther12 Senior Member

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    I'm interested to know what's happened to CFS rates since they started pre-emptive psycho-social treatment with things like glandular fever. I've not heard of significant improvements.
  3. alex3619

    alex3619 Senior Member

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    Hi, this article has a comment on CFS (not ME) incidence, prevalence and costs part way down:

    http://www.meactionuk.org.uk/What_Is_ME_What_Is_CFS.htm

    The insurance companies were probably scared silly. CFS was the second most costly chronic disease, and growing at the highest rate of all diseases.

    "No other disease category surpassed these rates of increase. In order of insurance costs, ME/ICD-CFS came second in the list of the five most expensive chronic conditions, being three places above AIDS."

    However, to be fair this was not long after the CFS definition was introduced (1988) and I think the Oxford definition came out in this period. So a lot of it was probably sudden recognition of prior cases as they were diagnosed. If they were new cases, that would tell a different story.

    Bye, Alex
  4. currer

    currer Senior Member

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    I started this thread because I was looking to see whether there had been an increase in Parkinsons disease in the last couple of decades, and it turned out that no real statistics are kept. the same thing seems to go for Multiple Sclerosis. Only the patient websites have an interest in finding out whether cases/rates are growing.

    Doesn't this seem strange to you? I had assumed that statistics on all this would be centrally collected by our governments. How could they tell if there were a change in disease patterns otherwise?

    I havent tried hard to find out more, I just wonder if anyone knows about this. It has been notorious for years that no-one keeps stats on ME but the impression I get is that it is the same for most chronic diseases.
  5. currer

    currer Senior Member

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    For example, How can our governments inform us that there are too many people on Incapacity benefits if they do not know what people are sick with? Are they assuming that disease rates stay constant over time? So that a rise must mean that some people are not really ill? Suppose people are getting sicker and that new diseases are moving into the population? Or that old diseases are becoming more common? How can they understand the health (or otherwise) of the society they govern if they do not record illness?

    What I am interested in is rate of increase of a disease over the last thirty years.
    (Not overall incidence) I want to know if a disease is getting more common.

    Incidence of Parkinsons Disease: Variation by Age, Gender, and Race/Ethnicity
    Stephen K. Van Den Eeden1, Caroline M. Tanner2, Allan L. Bernstein3, Robin D. Fross4, Amethyst Leimpeter1, Daniel A. Bloch5 and Lorene M. Nelson
    "The scarcity of incidence data on Parkinsons disease in general has primarily been the result of the difficulties in identifying a sufficiently large number of affected individuals in a well-defined or enumerated population. The major problems are the low frequency of Parkinsons disease and the difficulty in establishing diagnosis. These factors, along with the absence of population-based disease registries, have significantly contributed to the lack of good knowledge for even the most basic descriptive epidemiologic characteristics"

    If Parkinson's disease is in some instances associated with MLVs, the rate of the disease ought to show a rise that reflects the rise in ME cases since the fifties.
    But no-one seems to be keeping any figures.


    http://parkinsons-disease.emedtv.com/parkinson's-disease/parkinson's-disease-statistics.html
    Age and Parkinson's Disease
    Age clearly correlates with when Parkinson's disease symptoms appear. This is a disease of late middle age, usually affecting people over the age of 50. On average, the disease begins around the age of 60. However, some healthcare providers have reportedly noticed more cases of "early-onset" Parkinson's disease in the past several years, and some have estimated that 5 to 10 percent of them are under the age of 40
  6. LaurieM

    LaurieM

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    I remeber reading somewhere that in the UK they only bother recording 'notifiable' diseases - which I believe they take to be infectious. There don't seem to be many from the following list. You would think that with modern computer recording of GP records it would be a very straight forward task to record all illness for statistical purposes, but perhaps there's a reason they do not want to know, or perhaps they do know but don't want the public to know (but there goes my cynical mind again :rolleyes:).

    http://www.hpa.org.uk/Topics/InfectiousDiseases/InfectionsAZ/NotificationsOfInfectiousDiseases/ListOfNotifiableDiseases/

    From the UK Health Protection Agency

  7. Snow Leopard

    Snow Leopard Senior Member

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    The above is correct, however Government statistics organisations have done large scale surveys periodically (eg Stats Canada did the largest survey reporting CFS prevalence).

    This is why the calculation of disease burden is problematic - we only have incidence data for the sorts of infectious diseases listed above and mixed to poor quality mortality data. (for most diseases, not just CFS or ME)
  8. Enid

    Enid Senior Member

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    I quite agree Snow Leopard - what we have just doesn't fit neatly into their simple disease categories - owing much to the "don't know" by the various Docs (5 plus my whole GP practice in my case). All tests geared to "ruling out" only eg GI - well not cancer" - neuro - "well not MS nor Parkinsons" etc. I know this is necessary but remember thinking OK but what the bh is it. Much money spent (by the NHS) for apparently no definite result for them and years of illness for me.
  9. currer

    currer Senior Member

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    I have a special interest in ME and Parkinson's disease as my sister and myself both developed ME separately in our twenties, and remained ill thereafter, and my brother developed an early Parkinsons at fifty. It is strange to me that we have all this illness in our family, as no other relatives are sick, including parents.

    It is tempting to look for a single cause and so I was interested in the HGRV hypothesis, especially as we have all three had many vaccinations, including yellow fever. Parkinsons has been linked to HGRV infection by Dr Mikovits, and my brother developed his disease quite young for a Parkinsons sufferer.

    So I wonder what the growth rate in Parkinsons is? It doesn't seem easy to find out.
    Does this seem a rational way to run public health in developed countries?
    Enid likes this.

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