Compadres in Scarcity: the Bottom of the Barrel at the NIH

View attachment 1864 As the CFSAC meeting and our continual quest for real funding gets underway its important to understand what kind of disorder the NIH believes CFS is. One way to do that is to look at other disorders theyve decided are also worthy of little funding. Remember being put in math class as you entered Junior High based on your testing scores; you could either be in the accelerated class, the average class or the behind class. Lets take a look at our partners in the behind class.

There are about 30 disorders that are more or less the clear bottom feeders at the NIH - stuck at less than 15 million dollars a year in funding. If you took at a look at them some patterns do begin to appear; diseases that get poor funding at the NIH are usually either rare, minor or strike women.

Facts on CFS to keep in mind
Affects from 1-4 million people in the US (@1/100-300 people), causes high rates of disability and costs the US economy around 20 billion dollars a year in economic losses​

Total NIH Funding/year - $5 million

The Absolute Bottom of the Barrel at the NIH - (<5 million dollars a year) - CFS enjoys the company of a weird mishmash of rare, old, minor or other disorders and conditions. They include such things as allergic rhinitis (hay fever), DES (4 million), Facioscapulohumeral Muscular Dystrophy, hepatitis A (hepatitis C gets 100 million), Pagets Disease, pelvic inflammatory disease, Picks disease and vulvodynia (clocking in at $1 million) - all of which get under 5 million dollars a year. Lets take a quick look at ME/CFSs allies in poverty.

Mostly Rare Disorders - DES is a drug that caused awful to fetuses forty years ago and has not been used since. Studies are now focusing on third generation effects on the drug. Facioscapulohumeral Muscular Dystrophy is a rare form (effects7/100,000 people or about 20,000 people) of muscular dystrophy ($70 million/year). Hepatitis A is a serious disorder that is, nevertheless, almost completely contacted by US citizens when they travel outside the country and is rare inside it. Picks disease is a very rare neurodegenerative disorder. Pagets disease is a bone disorder that sounds like it should get more money. Hay fever, of course, is just hay fever.

Womens Disorders - Pelvic inflammatory Disorder and Vulvodynia are in much the same boat as CFS; both are womens disorders that are fairly common, cause high rates of distress and are virtually ignored by the NIH. PID causes 100,000 women to become infertile every year. Vulvodynia is characterized by chronic pain in the vulvia that has defied explanation causing many women to be told the pain is all in their head. It, like CFS, may be associated with Herpes infections. All are hard to characterize.

The Next Step Up - Next up in the great losers of the NIH series ($5-15 million/year funding) are more of the same - mostly rare disorders or, if theyre not rare, then they are, yes, female disorders.

Mostly Rare Disorders - Batten Disease is a rare neurodegenerative disorder that effects 2-4 people/100,000 and gets $6 million/year. Retts Syndrome is a rare autism-like disorder (4 per 100,000 people) whos budget, nevertheless has doubled over the past five years to $10 million/year. Mucopolysaccharidoses (MPS) (7 million/year) is a group of 5 very, very rare metabolic disorders (none affecting more than 1/100,000 people, one of which affects 1 person!) that has somehow managed to attract 40% more funding every year than CFS - which effects at least a million people. The budget for ataxia telangiectasia which affects all of 3 people per million (200 in the entire US) managed to increase by fifty percent over the past five years and now receives almost three times as much money (13 million dollars) as CFS. Thats $60,000 a year spent on every AT patient vs about $5 a year on everyone with CFS.

Female Disorders - This rung of the ladder is loaded female disorders -Some are relatively rare; anorexia nervosa (8 million/year), for instance is a well known but relatively rare disorder (10/100,00) effecting mostly women. Myasthenia gravis is a rare autoimmune disorder clocks at 7 million a year and mostly affects women between 20 and 40 years of age.

But then there are the common female disorders and here the story can only be described as tragic. Interstitial cytisus is a mostly female urinary disorder whose budget has dropped by over half in the past five years (to 12 million/year)..yet could effect up to ten percent of women. Endometriosis, is a painful gynecological condition affecting from 5 to 10% of American women, which receives all of $16 million dollars a year, or about $1 per year per woman. (Your pain is much appreciated!).

Shockingly, funding for the second the most common autoimmune rheumatic disorder in the US, Sjogrens syndrome, which is almost completely dominated by women, is not even listed. Of course, there are the fibromyalgia patients - all 10-15 million of them, gleaning from the federal government a grand total of 12 million dollars a year at the rate, again, of about $1 per patient a year). Add in female dominated chronic fatigue syndrome (1-4 million/ $5 million a year) and you have an ugly, ugly pattern.

Thank you, Uncle Sam!

Hence the CAAs Campaign to End Pain in Women working with Interstitial Cytitus, Endometriosis, TMD and Vulvodynia groups to increase research funding for some 50 million women the NIH is largely ignoring.

Conclusion- It appears that womens rights still have a ways to go in the medical arena; the low priority conditions for the NIH tend to be either very rare conditions or common difficult to understand conditions that strike mostly women. The good news for these under-served mostly womens disorders is that they are common; if support groups can bring those numbers to bear on the political process they should, like other womens conditions in the past, increase their funding.

What to do?


The problem is, many of those things can fall under aspartame poisoning, which is also being covered up. It's kind of hard to get at the real truth of what's going on when so many things factor into why we are sick today. There are many layers to why we are sick. Even if we all turn out to be XMRV positive, there are still many layers to why it was able to become something that destroyed our lives. When you look at other things that factor in, there's just alot there. Like with Hashimoto's, is it a direct result of being XMRV or is it just an extra thing? It's hard to say. And that can go for alot of co-conditions we have. The answers aren't simple.

The worst thing the NIH and CDC did was to take the millions of dollars away from our funding. And even though they claim it was put back or mostly put back, we have seen no results from that. And no one was really punished for taking those funds. I wouldn't trust either agency to do anything. And a real problem we will always face is that it is not in the medical industry's best interest to fix us. We are the perfect patients, we need continuing care, we make them alot of money. If they fix us, no more money making off us. That's the real reason no one is really helping us. It's money.
I think I mentioned this before--The third most common disease in the U.S. is Hashimoto's thyroiditis (hypoactive autoimmune thyroid disorder). The third most commonly prescribed pill in the U.S. is Synthroid (levothyroxine). The majority of persons who get Hashimoto's disease are women. They have one medicine for Hashimoto's disease that doctors are willing to prescribe. It comes in different brands, but it is all the same ingrediant. The only other choice is natural medicine. Apparently, no one ever experiences adverse side effects and the drug works for everyone??? The FDA has approved 4 or 5 different drugs for erectile disfunction, if I remember right (ofcourse, a man's disease). This was my first experience with the inequality of attention and funds put into female diseases vs. male diseases. Then I was diagnosed with Fibromyalgia and CFS and I found that the discrepencies are even worse than I originally thought. I often wonder if the answer to the cause of CFS (or Fibromyalgia) would have been found years ago if it were mostly a man's disease. I spent time writing to feminist organizations trying to convince them that this was an equal rights issue; and, if CFS is contagious, life was going to get much worse for more and more women. I did not get a response. Perhaps if more of us wrote e-mails to them at once. I think I will try to find the addresses once more and post them on this forum. It certainly wouldn't hurt if feminist groups eventually got behind us, right?

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