The 12th Invest in ME Conference, Part 1
OverTheHills presents the first article in a series of three about the recent 12th Invest In ME international Conference (IIMEC12) in London.
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Info needed on prevalence rates/research funded re ME versus MS, AIDS...please

Discussion in 'General ME/CFS News' started by MEMum, Apr 24, 2017.

  1. MEMum

    MEMum Senior Member

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    Hi well informed members.
    I'm working on something at the moment, for which I need the above info.
    I'm looking for some refs for figures relating disease prevalence to medical research funded, for conditions causing varying levels of disability. Preferably for this country, but US would be interesting too. I have seen people comparing these figures for ME, with other chronic diseases, such as MS and AIDS.

    My filing and indexing needs a complete overhaul and I know many of you are much more organised/have this info at your fingertips!

    Is there any research on the numbers of patients, who are mild/moderate/severe etc; other than the 25% quoted for those who are house or bed-bound?
    I don't suppose that looking at mean SF function from PACE would help as that only selected fatigued patients!
    Is there anything from US reflecting levels of disability?

    Thank you for your help.
     
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  2. user9876

    user9876 Senior Member

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    I think @Graham made a video about research funding levels and there was a graph going around showing funding vs disease prevalence

    I doesn't make sense to use the mean SF function from PACE as they have entry criteria that would cut of the mild and they also required that patients were able to get to the clinics for appointments which cuts of the severe.

    I'm not sure if there are any good population studies or accuracy in the 25% or even in the 250,000 people in the UK that is often quoted.
     
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  3. AndyPR

    AndyPR Senior Member

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  4. Jonathan Edwards

    Jonathan Edwards "Gibberish"

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    The most reliable information is likely to be in the papers by Nacul, Lacerda etc in 2011

    Prevalence of myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) in three regions of England: a repeated cross-sectional study in primary care.

    Nacul LC, Lacerda EM, Pheby D, Campion P, Molokhia M, Fayyaz S, Leite JC, Poland F, Howe A, Drachler ML.

    BMC Med. 2011 Jul 28;9:91. doi: 10.1186/1741-7015-9-91.
    Free PMC Article

    The functional status and well being of people with myalgic encephalomyelitis/chronic fatigue syndrome and their carers.

    Nacul LC, Lacerda EM, Campion P, Pheby D, Drachler Mde L, Leite JC, Poland F, Howe A, Fayyaz S, Molokhia M.

    BMC Public Health. 2011 May 27;11:402. doi: 10.1186/1471-2458-11-402.
     
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  5. user9876

    user9876 Senior Member

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    I wonder if the first of these papers will give a lower bound on prevalence but it could be higher as a number of patients with ME just give up on doctors.

    Just a warning about the second paper. The SF scores they quote are normalised (which is the correct thing to do) and so do not compare directly to the scores used in PACE.
     
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  6. MEMum

    MEMum Senior Member

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    Thank you so much, clever, helpful people.
     
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  7. AndyPR

    AndyPR Senior Member

    On prevalence, the table here, http://me-pedia.org/wiki/Prevalence, shows it per country, it looks like you can then click through to most countries and discover how that figure was determined.
     
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  8. A.B.

    A.B. Senior Member

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  9. HowToEscape?

    HowToEscape? Senior Member

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    Whilel not directly answering your question this post from Nancy Klimas comes to mind:
    • “My H.I.V. patients for the most part are hale and hearty thanks to three decades of intense and excellent research and billions of dollars invested. Many of my C.F.S. patients, on the other hand, are terribly ill and unable to work or participate in the care of their families."
     
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  10. HowToEscape?

    HowToEscape? Senior Member

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    You may want to point out that the y-axis on that chart is logarithmic. Otherwise people who just give a casual glance won't notice the third y-axis line represents 10 times the funding of the second line. AIDS has gotten about 1000 times more funding then our disease, and that's if you're including $ on CDC research that was just obfuscation and babble.
     
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  11. Graham

    Graham Senior Moment

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    Sussex, UK
    In 2015 in the US, gov. funding for HIV/AIDS research was 500 times a much as funding for ME/CFS, much as it has been for many years. It is difficult to come up with a reliable number for people with ME, but the two groups are, as scientists say, of the same order. I have used the area of each "bubble" to represent funding, in order to get over the logarithmic nature of the differences.

    closingscene+arrow.png

    In the UK it is very difficult to get comparative figures: I have a spreadsheet for the MRC and a general database, which together allow me to track through "all" studies from the late 80s to, say, 2011. It takes a lot of time to dig out the ME stuff because there are many studies where "chronic fatigue" is mentioned, but my estimate is that a maximum total of £10 million has been invested into ME/CFS research since the 80s: most of that has been on psychosocial stuff - at best £2 million of it has gone on biomedical research, £1.6 million of that in 2011/12 in response to the Early Day Motion in parliament of 2010, signed by 123 MPs. You need to add to that the £1 million or so that I think NIHR (the research arm of the NHS) have set aside to fund Crawley's latest project.

    Both the MRC spreadsheet and the general database (on an NIHR site) were available a few years back. I did my analysis, found very little funding, so contacted both the MRC and NIHR to check my findings. They were unable to add anything to it: NIHR explained that they also provided facilities for ME/CFS research to be carried out, but I'm guessing these were not free, so hardly count. Very strangely, and purely by coincidence, of course, both the spreadsheet and database had been removed when I went back to check. I had already downloaded the spreadsheet, so that was OK (and of course can upload it to PR if desired). The database was harder to find: the people running the site had no idea what had happened. It took a few months but eventually a helpful person in NIHR gave me a link to a Microsoft Access file, which "our Bob" kindly converted to a database for me. That is massive, and again could be uploaded to PR if desired.
     
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  12. Mohawk1995

    Mohawk1995 Senior Member

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    Compare the bubble diagram of expenditures to the US prevelance:
    HIV: 1.2 million ($27.5 billion in research annually)
    MS: 400,000
    Lupus: 1.5 million
    Diabetes: 29.1 million
    Depression: 15 million
    ME/CFS: 1 million? ($7.6 million in 2016 and proposed $15 million in 2017)

    Funding per person US:
    HIV: $23,000
    ME/CFS: $15

    At the risk of being politically incorrect....What???!!!
     
  13. MEMum

    MEMum Senior Member

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    Hi and thanks again for your input.
    @Graham thanks for the info. At this stage the MERUK research funding statement and graph from Sep 2016 is probably adequate. But the further detail is interesting.
     

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