Reno (the Littlest Big City in the World’) is not your typical conference destination but it was hard to imagine a better spot for the 9th International IACFS/ME meeting. Much water has passed under the bridge since the plight of those Incline village residents made headlines across the country thrust this disease back out into the open. At the time Dr. Peterson was living the good life with a small practice in a resort town in Sierra Nevada ski country.
Deluged with ill patients that summer of 1984 his life would change forever. The CDC would come and go, ‘yuppie flu’ would become a byname for this disorder , another unfortunate name would be coined, a national patient organization would rise, scandals would come and go…and many of the patients would remain, except for a few dedicated physicians and caretakers, for the most part ignored by the medical profession.
The emergence of the Whittemore-Peterson Neuro-immune Institute is the clearest example that that problem is slowly but surely changing. What a remarkable achievement it is. Who would have ever thought that just over the hill from that small resort town the first facility dedicated to the study of this disease would emerge 25 years later? Or that those poor, misunderstood patients would several decades later begin to lay a foundation for a new interpretation of this disease?
Despite all that bad things that have happened there is unalloyed good one. The doctor who struggled in the hinterlands for decades finally is getting the support he wanted and needed. Thanks to work of one couple with a very ill daughter this disease is, at least in this small corner of the US, getting the recognition it deserves.
Many of the ill patients are still ill but their blood has provided the clues that have enabled the institute to produce the first laboratory derived subset in this disease.
In some ways the ME/CFS community came home after 25 years at the 9th International Congress and found it a much better place than it would have ever, given it’s history, imagined.
Dr. Peterson started the conference off with a stirring address and perhaps the best news of the entire conference; that the money in the medical world is starting to get interested in this disease. We’ve learned the bitter truth that suffering and debility, even on a large scale, gives you very little punch in our medical system. The profit motive, on the other hand, can move mountains and Dr. Peterson brought very welcome news that medical companies are beginning to understand that.
The value of a diagnostic test alone for this disease is estimated to be $120,000,000 a year (picture millions of fatigued people getting tested every year) and the market potential of a drug is projected at $250,000,000 a year. Some diseases are too rare to ever get substantial funding but chronic fatigue syndrome (ME/CFS) is simply too misunderstood – something that can and will be rectified. Once the medical establishment sees a clear understanding of this disease develop – and a chance to make some money – it’s possible they will beat a path to our door.
Still Dr. Peterson, never a shrinking violet on the issue of government ‘non-involvment’, lambasted the government for spending so little ($4,000,000/year-NIH) – barely enough for postage he jeered – for a disease that costs not only it’s sufferers so much but the US economy as much as $24 billion dollars a year.
As Dr. Peterson ran through some research highlights he signaled out the repeat exercise test regimen created by the Pacific Fatigue Lab. Interestingly he stated that the search for that holy grail – a single biomarker is over; this is a disease of subsets (or different diseases) some of which the Whittemore Peterson Institute asserts can be differentiated right now. On the theme of making a difference he noted the need for the community to come together and unite over a single name (ME/CFS, CFS/ME).
The Whittemore Peterson Neuro-Immune Institute - The heart of his talk was about the possibilities engendered by the Institute. Clearly speaking from experience he stated that ME/CFS researchers are being aided by technology that they couldn’t even have dreamed of as little as three years ago.
As a consequence the medicine of tomorrow will differ greatly from that we see today. The old paradigm; if you have x disease you’ll get Y drug is ending. Instead physicians will use gene expression and genomic tests to target specific drugs and treatments for specific patients. Uncovering the molecular basis of disease will lead to new and unexpected treatments – something we will later see is already occurring to some degree in ME/CFS.
This molecular approach is already threatening to re-align research priorities. Not so long after the NIH and CDC pulled the plug on pathogen testing WPI researchers began doing exhaustive pathogen and immune tests developed by the National Cancer Institute. Demonstrating it’s tough to keep a bad virus down the herpes viruses immediately popped out in the Incline Village cohort patients while cold viruses did in the controls.
What a change in priorities that finding could have. While CDC researchers pinned the inflammation they found at least in part on obesity (what one researcher jokingly called the ‘fat Wichita subset’) and struggled over the question whether ME/CFS was really metabolic syndrome in disguise, the WPI purports it is, at least in one subset, the work of herpesviruses.
Coming Home – the Patient Reception
All the doctors that have stuck with us have a personal connection to this disease. At times, though, one’s had the feeling that that connection may be a bit closer to the surface with Dr. Peterson and in some ways that wouldn’t be surprising. years ago. The modern era of chronic fatigue syndrome or ME or ME/CFS or whatever you want to call it really began at his and Dr. Cheney’s office in Incline Village 25 years ago. Dr. Cheney moved on but Dr. Peterson stayed and over two decades later he’s still looking after those patients.
In a sense the ME/CFS community came home during the last IACFS conference and all the connections – the 25 year anniversary, Incline Village next door, the emergence of the WPI just up the road– appeared to hit Dr. Peterson as he got up to speak at the Patient Reception. It’s been quite a personal and professional journey for Dr. Peterson he started to speak and couldn’t get the words out.
Dr. Peterson had reason to be moved. The ME/CFS community is beset with enormous challenges but at least in this corner of the world the future appears to be bright. The WPI has some big plans on its plate. As the conference proceeds we’ll get some idea of what they are.7 comments