1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
AVIVA Semi-Finals: National ME/FM Action Network is competing for $100,000
The National ME/FM Action Network in Canada is competing for $100,000 for biomedical research of ME and FM in the Aviva Community Fund contest. With thanks to all who helped, they made it through the first round of voting into the Semi-Finals.
Discuss the article on the Forums.

Article: Compadres in Scarcity: Patterns Emerge in the Bottom of the Barrel at the NI

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Oct 10, 2010.

  1. Phoenix Rising Team

    Phoenix Rising Team

    Messages:
    650
    Likes:
    1,017
  2. xchocoholic

    xchocoholic Senior Member

    Messages:
    2,940
    Likes:
    1,611
    Florida
    Thanks Cort ... As always an interesting article.

    I was wondering how much the NIH spent on ED (erectile dysfunction). I couldn't find it immediately while googling NIH funding ED but I found this ... Who decides where the funding goes anyways ?

    http://www.foxnews.com/politics/2009/06/19/nih-funds-study-men-dont-like-use-condoms/

    NIH Funds $423,500 Study of Why Men Don't Like to Use Condoms

    BTW. As long as you brought it up, a tid bit about vulvodynia - My GYN told me that my vaginal pain was from getting older / aka menopause. He was surprised when I told him that my pain was completely gone after eliminating the high oxalate foods in my diet. If you ladies want to google vulvodynia and oxalates you'll find this ... x
     
  3. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    I assume that male administrators and male grant reviewers often decide where the money goes. As women get more control they will decide more. Right now we have a female DHHS secretary of Health who doesn't appear to desire to shake things up on the funding front for women in pain yet but she should be a natural ally as should women congresswomen and Senators.
     
  4. zzzz

    zzzz

    Messages:
    17
    Likes:
    0
    Montreal, Canada
    Thanks Cort for another interesting article. It confirms what I've long suspected: if the majority of sufferers were men, CfS would be taken much more seriously.

    It seems even bees are taken more seriously. the Patient Advocate wrote an intereting article were he mentions a New York Times ''front page story of an immunologic dysfunction in bees that involves viruses, fungi, immune dysfunction and the gut'' and concludes ''With all due respect to bees and the NYTimes, why can't we have a front page article on ME/CFS and leave the bees take care of themselves. People first, bees second''. http://cfspatientadvocate.blogspot.com/2010/10/couple-of-newspaper-articles.html
     
  5. Mark

    Mark Acting CEO

    Messages:
    4,532
    Likes:
    2,016
    Sofa, UK
    Very interesting. Another thing that strikes me is there seem to be quite a few 'neurological' conditions in there - some conditions that have probably been regarded as psychological, historically. I guess anything that can affect the brain has had significant problems in the way it's been managed historically. Another big factor has to be campaigning by the public, and the way that has distorted research funding. The conditions that get the most money have big campaigns behind them and that means campaigns with family support. I imagine a lot of the conditions in this list just aren't the sort of things that friends and family find it easy to rally around.

    One of the biggest points I'd make about research funding is the way that cancer research seems to have come to dominate the research agenda. In terms of charitable funding it has massively dominated as the most popular fundraising cause, in the UK at least. The sums of money that have been poured into cancer research are unimaginably large by comparison with the sort of figures we're talking about here. But is that a rational prioritisation? From what I've heard, even within the cancer research arena, the almost exclusive focus is on treatments, on palliative care. NOT on finding the cause(s) and NOT on finding a cure. It's not hard to reason why: the economics of health just work out that way. The relative values of different Business Cases can drive that phenomenon with no need for any kind of conspiracy at all; participants can easily be quite unconscious of the role they are playing within that bigger picture.

    Sadly, the agenda appears to be driven by the business of health. I spoke to yet another random friend this weekend who related how a friend of his, a top researcher, had left the medical industry in disgust because of this focus on what makes money, and not on what is in the human interest. How many times have I heard this tale? Everyone I've spoken to recently agrees: medicine and health is probably just about the most corrupt sphere of human activity going. Just because there is, of course, so much money in it: one's health is simply more valuable than everything else in one's life put together.

    One thing that I learn from reading the history of science, is that many of the biggest and most significant scientific breakthroughs seem to come almost randomly, from left field, when a researcher is actually studying something else, sees something unusual, follows up on their curiosity, makes an imaginative leap, and strikes lucky. So the most rational way to encourage a productive research sector would involve giving academics enough freedom to follow up on whatever takes their imagination. In recent decades, the agenda has shifted completely against that concept of academic freedom. Research prioritiies are carefully planned and organised by accountants, and academics now have to follow the money - and the money doesn't necessarily accord with their own assessment of what is worth investigating.

    Pumping money into conditions that affect only a few people can often be a very sensible approach. Often there is good reason to believe that a particular rare or unusual condition will turn out to hold the key to a whole load of other important questions. Considering all that money that's been pumped into cancer research, why hasn't it delivered a cure? Wouldn't it be ironic if the biggest breakthroughs of all came from studying a disregarded and forgotten condition like ME/CFS? Like, for example, the discovery of an infectious retrovirus, the understanding of which just might turn out to hold the key to understanding how cancer develops and progresses...
     
  6. Kelly

    Kelly

    Messages:
    85
    Likes:
    17
    More important than it seemed at first glance

    The actual article was a good one.

    First, the military is hardly likely to try something out on people first. (Bees are more dispensable, but not as dispensable as some may think - they pollinate hundreds of crops - you do like to eat do you not? The need for food is common to all animals healthy or with a disease.)

    Secondly, and perhaps more importantly, they make a point that many CFS researchers make. The role of synergistic combinations between microbes and viruses and by extrapolation toxins in causing disease. It leads one to wonder what this technology could accomplish when applied to disease in humans - say GWS or ME/CFS for example. Think about it some - the full import will hit you sooner or later.
     
  7. anciendaze

    anciendaze Senior Member

    Messages:
    904
    Likes:
    1,053
    Small correction: interstitial cystitis also affects men, but in that case is usually diagnosed as chronic non-bacterial prostatitis. The current term has evolved from interstitial cystitis to bladder pain syndrome to Urologic Chronic Pelvic Pain Syndromes. All sufferers report pain/discomfort, most report frequent urination, including having to get up at night.

    One gene implicated in a subset of cases is called PAND. Here's what wikipedia says:
    Does any of this sound familiar? Would you believe the same gene map locus shows up in susceptibility to ASD?

    Could we be getting closer to understanding a number of orphan illnesses previously considered unrelated?
     
  8. illsince1977

    illsince1977 A shadow of my former self

    Messages:
    356
    Likes:
    22
    Cort-

    Thanks for another great article.

    I still want to know where the CFS prevalence numbers come from. If the 1-4 million number comes from the same source that the funding decisions eminate, then your points are totally valid - this illness is grossly underfunded and they know they are grossly inderfunding it.

    On the other hand, since when do we trust the CDC's epidemiological data on CFS? Where do they get their numbers if their criteria (Holmes, Fukuda, empirical) are ever changing?

    If this has been discussed ad nauseum in years past on PR, forgive me for revisiting it and chalk it up to my newness to the forum. I'm still baffled at an estimate of 1 case per 100-300 people. I don't dispute that the CDC has taken advantage of us because in years past this was perceived as a women's disease. They have also taken advantage of the fact that transmission is so hard to prove (unlike AIDS) and biomarkers were also not easy to find. But haven't they also taken advantage of the fact that most folks aren't worried about getting it because they know almost no one who has it?

    I'm all for advocacy. I think our illness is transmissable. I have personally paid the price for the lack of interest/belief in this illness our government, our families and the medical/scientific communities have displayed since I got sick a lifetime ago. I need no convincing! I just like to have documentation before I try to convince others.
     
  9. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,397
    Likes:
    4,790
    australia (brisbane)
    I have to disagree that female illnesses are poorly funded, the way it is mentioned is that male illnesses are highly funded. I know in australia there seems to be some sort of fund raising adventure going on for breast cancer every month. Cervical cancer is also up there, i dont know any men with a cervix so its definately female. I really dont like other cfsers mentioning this illness as a female illness, i think they would get a suprise at how many of us males out there with cfs and fm, its not as disproportoinate as one thinks. Males are less likely to see a doctor for any condition. I agree that some of the poorly funded illnesses are female but cant agree that all female illnesses are poorly funded compared to males. Females have more moving parts to go wrong then males, and when males have things going wrong, alot just drown it in beer. I personally think there needs to be more invested in mens health, especially general health checks, theres minimal advertising on males getting health checks compared to females. Im sorry if i have affended anyone, but i hate the male bashing, especially when its not deserved.
     
  10. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    The 1 million person figure derives, I believe from Lenny Jason's epidemiological studies on CFS as defined by Fukuda. The 4 million figure comes from the CDC epidemiological studies using the Empirical definition.

    A big problem is the 15-20% diagnosis rate since that means that only 150,000 - 200,000 people have been told by a doctor that they have this condition. Many, I imagine, are probably pushed into the depression/anxiety categories - which they don't fit - but MD's don't know where else to put them or don't believe in or know about CFS.
     
  11. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC

    I agree that some female illnesses are very well funded - I think its more the combination of difficult to understand illnesses in combination with being female oriented. It could also simply be that that several of the really difficult to understand illnesses - that medical researchers aren't interested in attacking - perhaps because they don't feel they will be successful - just happen to affect more females than men!
     
  12. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,397
    Likes:
    4,790
    australia (brisbane)
    I think it also boils down to how much money they can make out of you and how easy it is to treat the condition, the harder to treat the less likely doctors are going to take it on, cfs is a good example of that. Interesting how fm is now more recognised now that there are more successful treatments then in the past. Theres not much more improvement in diagnostic procedures for fm just treatment but its now more recognised. U would think that it would be more recognised with better and improved diagnostic procedures then would be treatments. alot of it is about the dollar.
     
  13. Parismountain

    Parismountain Senior Member

    Messages:
    179
    Likes:
    79
    South Carolina
    Think there's a missing word in this sentence "DES is a drug that caused awful to fetuses forty years ago "
     
  14. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    Got it - thanks!
     
  15. Enid

    Enid Senior Member

    Messages:
    3,309
    Likes:
    841
    UK
    I know this is a very serious discussion but may I remark on the appropriateness of the introductory image - felt exactly like that all along !
     
  16. Old Salt

    Old Salt Rowing the boat

    Messages:
    70
    Likes:
    19
    S/W Pa.
    Remove the person looking down and the ladder and then the introductory image is perfect!
     
  17. Recovery Soon

    Recovery Soon Senior Member

    Messages:
    380
    Likes:
    37
    I couldn't agree more. Can anyone think of a disease with a higher profile than Breast Cancer? For the past two weeks EVERY coach and player in the NFL wore pink equipment during their games to bring attention to the disease. Name another one getting that kind of exposure.

    I don't like the association of CFS as a "women's disease." I have a pretty big male EGO, and its getting a little tired of being tied in with femininity. Trust me- I'm far from feminine in real life- and its starting to piss me off.

    I don't need one more reason to hide being sick.
     
  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,397
    Likes:
    4,790
    australia (brisbane)
    Here Here!!
    We should walk the streets and burn our jock straps in protests!
    lol

     
  19. Hope123

    Hope123 Senior Member

    Messages:
    1,170
    Likes:
    680
    I would caution people to be careful about making statements about funding of women's health issues without knowing or reviewing the history.

    (This isn't directed at Cort; I haven't read Cort's article yet and as far as I know, he hasn't made such statements in the past.)

    If you go back even 30-40 years ago to the 1970s-1980s, breast cancer was spoken about in hush terms and there wasn't much research into it. The Susan G. Komen Foundation (the people responsible for the pink ribbon campaigns) was named after a woman who died of breast cancer in 1982; her sister was concerned that so little was being done for it that she started the Foundation.

    For another example, look at heart disease in women. Although heart disease is far and away the top killer of women in the US and affects more women (yes, ahead of breast cancer!), there wasn't much emphasis on it until the 1990s. Heart disease before was thought of as a "man's disease"; after it was researched more in women, scientists found out that certain heart tests used for men do not work as well or in the same way for women. Women have also died of heart attacks because their symptoms were dismissed by their doctors; nowadays, we know that women present with slightly different symptoms than men.

    And don't even get me started about Viagra and its quick coverage by Medicare compared to how hard it is to get coverage for pregnancy or birth control pills under private or governmental insurance in some areas of the US. Women also get charged more than men under some insurance plans also.

    In the end, it's not about men vs. women; it's about women getting a fair shake in medical care and other areas of society/ life.

    [Another point to keep in mind: the majority of medicines we use today have been tested on adult 18-64 white males. Part of it is that recruitment took place among this group more than others because they had more access to medical care, might be more educated about trials, etc. I don't think it was necessairily a concious move on the part of past scientists. But nowadays, people do recognize that certain meds do not work as well for certain minorities (e.g. blacks and blood pressure medicines), women, the elderly, and children. Today, in the US, gov't funded trials are required to state explicitly why these certain groups will be excluded from their trials and are encouraged to include a diverse number of subjects.]
     
  20. Recovery Soon

    Recovery Soon Senior Member

    Messages:
    380
    Likes:
    37
    Maybe there is a disparity overall. Breast Cancer is now predominating headlines- perhaps there was a long road to get there, and maybe its an exception- but it is saturating public awareness. Just think about the NFL commitment I mentioned earlier- the advertising cost of that exposure alone equates to hundreds of millions of dollars for 2 weekends.

    And the more the better. My mother's a survivor.

    Just as I perhaps need to gather more information before speaking about overall research disparity levels, so do people who consistently label CFS as a women's disease- including women with CFS.

    Do you realize how demeaning that label is for a male CFS sufferer? People generally operate from their own areas of interest, and don't consider their impact on other people- but frankly, I'd personally rather be thought of as crazy- then as having a women's disease. And it's not because I'm sexist. It's because the label is emasculating.

    We need to stop perpetuating the BS. We don't know how many men go undiagnosed. What we know is there is a debilitating disease that is underfunded. Those are the facts, ma'am.

    I know the havoc it's reeked on my life.

    And I don't need to hear that it's a women's disease. I took a shower this morning. Trust me- it's not.
     

See more popular forum discussions.

Share This Page