Tantalized by the opportunity to make a difference the ME/CFS community let loose on the CDC over the past year. To its credit the CDC’s review process allowed for that.
Missing the Forest for the Tree – The CDC, however, is not the main game in town – they’re not the alpha dog we vitally need to tame – not at all. Perhaps because they’ve made more blatant errors than anyone else the CDC’s has always assumed an outsized importance in the chronic fatigue syndrome community’s mind.
There’s certainly no disagreeing that they’re important – they are; they’re tasked with doing research, interacting with public health officials, educating physicians education, documenting prevalence and costs, identifying risk factors , etc. but they are not our most important federal agency; in fact they’re not even close.
The Alpha Dog – This is because the CDC can’t even begin to do its job correctly until its big brother in Maryland – the NIH – gets its act together. Developing an adequate public response to a disease (i.e. disease control) – works very well only with diseases that can be controlled. But you can’t control a disease you don’t know the cause of. Likewise educating physicians is great – unless you don’t have any treatments to provide them. An educated physician who still has no bullets in his gun simply makes for a happier office visit.
MIA Agency Uncovering the cause of chronic fatigue syndrome is not really the CDC’s job – it’s the NIH’s job – in fact, it’s all they’re supposed to do. The NIH is tasked with uncovering the cause of a disease, providing treatments for it. But the NIH has been MIA in this disease for the past 10 years. While the CDC’s presence has at times made things worse you could argue that the NIH’s absence has had even worse consequences. The best researchers in the world aren’t at the CDC, they’re at the NIH and they’ve turned up their noses in disdain at this disease. If ME/CFS Community really needs the CDC to get it’s act together it desperately needs the NIH to finally start getting serious about this disease.
Jennifer Spotila – one of our fiercest advocates on the CFID’s Association Board – – testified to the CFSAC and https://www.cfids.org/cfidslink/2009/060309b.pdf
“There are 215 conditions listed on NIH’s Estimates of Funding. Out of those 215, only one line item is projected to have less funding in 2010 than in 2009: Chronic Fatigue Syndrome. One out of 215. CFS funding is projected to drop from $4 million in 2009 to $3 million in 2010. This 25% cut in funding – especially when no other category is being cut – is emblematic of this entire Department’s lackadaisical approach to CFS.”
“We frequently hear from NIH, as Dr. Hanna said today, that the funding level is dependent on quality grant applications coming in first. I suppose we should conclude, then, that NIH is overwhelmed with quality applications for research on Pick’s Disease which affects fewer than 200,000 people in the US, because that category is projected to receive a 30% increase over its funding in 2008.”
Jennifer Spotila, May 27, 2009
Not Even Chicken Scratch – To get a glimpse of the NIH’s disdain for this disorder consider that it’s receiving about $3 million a year in funding. The NIH could boost funding dramatically and recusitate the ME/CFS program simply by announcing that they were going to pour $10 million a year into the disease.
That sounds like a lot of money but it’s still chicken scratch in the medical world. That’s not even administrative costs for large diseases (like ME/CFS). The NIH budget is over $30 billion this year . They could provide $10 million with a flick of their little pinky. Yet despite all horrific statistics (1 million affected , disability rates, $20 billion dollars a year in economic losses) they won’t even do that. You are looking at a system that cares nothing about what people need and everything about what researchers think is hot and sexy and will further their careers.
Right now ME/CFS has become a gotten a bit hot and sexy and it’ll be interesting to see what kind of funding the NIH announces at the CFSAC meeting. Whatever they do announce don’t think for a minute it’s because they all of a sudden care about people with this disorder. The sick fact is that they don’t give a hoot. It means nothing to them. The fact that you may be sick with something they like to study counts for everything. It XMRV doesn’t work out it’ll be back to business as usual before you can blink an eye.
You might say that now that they’re focused on XMRV we’re going to be fine. But if XMRV works out it’s going to have to tie together an enormous number of different strands of research. According to one patients report Dr. Peterson has even suggested that autonomic nervous system problems could play a key role in XMRV infection and activation. (Do ANS problems come first?)
So while we’re watching the NIH (hopefully) step up to the plate with XMRV we have see if its business as usual with regards virtually everything else in this disorder.
The mantra with the federal agencies is to trust nothing they say and focus entirely on what they do. We’ll see a good case of how far trust goes in the next blog.
Dig Deeper: Read Hilary Johnson’s Op Ed piece in the New York Times – A Case of Chronic Denial
Next Up: Teflon Woman