By John Herd
Scientific advancement in physics often requires thinking beyond the confines of what seems concrete, often beyond the imagination.
In Chronic Fatigue Syndrome (CFS) advocacy and in being a CFS patient we get caught up in the minutia of the science of yesterday and today. We attempt to answer the politics of today with the responses of the past. As patients we treat the symptoms of today with the treatments of the past.
As with the physicist, we must move beyond this type of thinking and actions if we wish to move beyond the confines of our todays, beyond the illness. There is only one path that leads to that goal. Today’s answers and today’s treatments won’t lead there.
Asking the health department to fund and conduct more intramural CFS research is unlikely to increase the pace of scientific advancement. The health department has failed us for over two decades. It’s present words and actions are no more inspiring. CFS has continually been amongst the least funded medical conditions the National Institutes of Health has funded. Despite that they have progressively reduced extramural (independent) research funding over the past several years.
Debating with government health department officials who are burdened with, no, stuck in CFS biases of the past and present won’t lead us to the advancements we need. Let those officials follow behind us along the path of advancing science.
Meanwhile we patients must individually cope with the daily epic chaos management struggles of living with what the illness inflicts. We endure, we wait, we hope, but these struggles won’t get us any closer to being free of the illness, free of such struggles. The medical treatments of today won’t free us.
The one and only action that will bring us closer to our end goal, that of being healthy again, is our financing the physicists of medicine and the kinds of science that are apt to make real scientific progress. Who are those physicists of medicine? They are the medical investigators who are looking beyond the parameters of yesterday’s and today’s CFS science. They are doctors who have the expertise to bring the best and the newest of medical science to studying our illness. They may or may not even be the medical CFS investigators whose names we have grown to recognize.
So how do we get to them? We don’t have to.
The Whittemore Peterson Institute (WPI) has been doing just that. WPI’s track record and that of their collaborators has already provided evidence of it. And there is more transpiring behind the scenes than is publicly visible. As WPI and their collaborators are moving the science ahead, that science is also pushing the politics ahead.
But to continue doing so WPI needs our financial back, lots of it. Science isn’t cheap. New science investigation must continue to be conducted, not just upon the physiology of our illness, but also eventually expanded treatment trials. Isn’t that what we are all waiting for, hoping for, more effective treatments that will set us free?
Just look at the impact of that Human MLV-Related Virus (HMRV) related science (also referred to as XMRV/MLV) has had upon the advocacy landscape in the past year since WPI’s paper first appeared in the Science journal.
The mere publication of that one article triggered more media coverage, and more potential credibility for our illness, than any single event in the history of CFS. And when the article “Detection of MLV-related virus gene sequences in blood of patients with Chronic Fatigue Syndrome and healthy controls” appeared the same thing happened again.
Our illness and each and every one of us gained more credibility from these two events than from all the advocacy we have conducted over the past two decades. They certainly did more for us than any of our advocacy organizations have accomplished over the past two decades.
We’ve been saying CFS is physical, it’s a real illness, not “all in our heads,” but how many were listening? How many were believing that message? They are listening now. Blood banks would not be refusing our blood if that were not the case.
Sure that WPI article triggered some scientific controversy; that’s the nature of scientific discovery and investigation, to question and explore further. Medical research is a highly competitive field with lots to gain and lots to lose, and the competition can often get cutthroat. We’ve seen some of that cutthroat competition directed at WPI, but solid science wins out in the end if it is allowed to move ahead.
But will that science move ahead? Will it move ahead at the pace we hope it will? It won’t if we don’t fund the science out of our own pockets on levels we’ve never funded research before.
Do you want those more effective treatments?
Then pay for them up front by investing in the research that will bring them to you.
Donate again and again to the Whittemore Peterson Institute whenever you have a few dollars in your pocket. Every bit helps get us a little bit closer to those treatments and healthier tomorrows.
Please go to WPI’s donation page and invest in all of our tomorrows.
© John Herd, ’10
May be reposted with prior permission
Feel free to send responses to me at firstname.lastname@example.org