Equal Pay/Equal Power/Equal….Research Funding – the ‘Campaign to End Pain in Women’ Begins

Posted by Cort Johnson

oca figure reportThe Problem – We know CFS patients can’t get any respect. We have solid data showing there are high rates of CFS prevalence (@1,000,000 people in the US), that CFS causes high economic losses (up to 20 billion dollar a year), and that it causes high rates of disability. In short we have data that demonstrates that chronic fatigue syndrome (ME/CFS) is a major disorder that should be receiving major research funding….Instead it’s funded like it’s a sore throat.

How far are we from appropriate funding? A long way. We’re not talking a mere doubling or tripling of our current budget, we’re talking 40 to 50 times the amount of funding we’re getting; that’s the kind of funding that disorders the magnitude of chronic fatigue syndrome typically get every year. At the current rate it would take 40 years of funding at our rate to equal what one of those major disorders typically gets
in one year.

The Barriers – What is stopping us from getting that funding? Obviously there is an entrenched belief system that a) this is not a real disorder and b) if it is a real disorder it’s impossible or at least very difficult to study. But there is another factor as well and it’s gender….most people with ME/CFS are female and, rather disconcertingly, the same is true for many of its allied disorders such as fibromyalgia, IBS, FM, TMJ, interstitial cytisus, etc.

These diseases are similar in several ugly ways; they all have high rates of disability, fatigue and pain, they all tend to blend into each other, and guess what….they all get miserable funding. (Yes, we are not alone). The amount of under funding is remarkable; the NIH spends two tenths of one percent of its budget to research a group of diseases that affects 50 million people – that’s $1.33 a patient a year. These are the ‘all in your head’, ’ hysterical women’s’ diseases that the federal government has swept under the rug for so long. But hopefully not much longer.

Getting Respect (and Funding) – How to get some respect? Since the knock’em dead statistics approach doesn’t work the only way is to build the political will to breach the hallowed (and still largely patriarchal) halls of the NIH. This isn’t easy to do; politicians are rightfully leery of telling medical researchers what they should spend their money on but sometimes they do need to be told.

Enter the Overlapping Conditions Alliance and the Campaign to End Chronic Pain in Women – The Overlapping Conditions Alliance consists of organizations that support largely female disorders; the CFIDS Association of America, TMJ Association, Endometriosis Association and NationalVulvodynia Association

Old Idea: New Take – The idea of building an alliance of diseases which co-occur with ME/CFS is not a new one. Tom Hennessy of RESCIND proposed that over 20 years ago – but it’s been difficult to achieve. (Tom found, much to his amazement, bias against CFS by other controversial disease groups – they didn’t want to be associated with us)

oca meetingsA New Day – Times have changed, though. These groups now recognize that uniting could give them considerable power. They represent, after all , 50 million Americans who suffer from a suite of poorly researched diseases estimated to cost the US economy $80 billion dollars a year. Many of them were not represented by strong, viable organizations decades ago but the Overlapping Alliance now consists of a group of highly professional, widely regarded groups (lead by women) each of which seeks to create change at the federal level. The environment at the federal level has changed as well; the House majority leader is a woman, a woman came close to winning the Presidency and more women than ever hold federal office – this groups natural constituency is now walking the halls of power. It’s time to use it.

The Alliance will focus on raising awareness about the cost of these disorder to society as well as the neglect and dismissal that women (and men with them) often face. The campaign will not focus solely on women; about a quarter of the sufferers of these disorders are men – and, of course, men suffer from the double stigma of having both a woman’s and a controversial disorder. (Men may actually suffer more from poor medical treatment than women; studies have shown that men with fibromyalgia are more likely to be misdiagnosed and thus less likely to receive appropriate care because FM is considered to be only a women’s disorder. )

We in the ME/CFS Community are not alone…millions and millions of people suffering from mysterious fatigue and pain disorders have also gotten the shaft for years from the medical community. It’s far past time that we banded together.….It’s time to bring a reckoning to the traditional research community that has ignored us and so many others for so long.

The Overlapping Conditions Alliance has moved fast. They’ve issued a stunning forty page report that outlines the problem and provides solutions to it. (Check out Table Two on Funding for a real eye-opener ). In conjunction with the release of that report they met with leaders in Washington to push for change. They’ve produced a powerful, moving video. This much needed Campaign is off to a great start.

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