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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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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
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 NY Times, 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
Does any of this sound familiar? Would you believe the same gene map locus shows up in susceptibility to ASD?PAND, at gene map locus 13q22-q32, is associated with a constellation of disorders (a "pleiotropic syndrome") including BPS/IC and other bladder and kidney problems, thyroid diseases, serious headaches/migraines, panic disorder, and mitral valve prolapse.
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.
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.
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.
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.
I would caution people to be careful about making statements about funding of women's health issues without knowing or reviewing the history.