"I believe that the Whittemore Peterson Institute is the beginning of new hope for the millions who suffer from neuro-immune diseases such as ME/CFS, fibromyalgia, atypical MS and other similar diseases that have a life long impact on both the immune system and the brain of those afflicted."
Annette Whittemore, President of the Whittemore Peterson Institute For Neuro-Immune Diseases
They said they’d be different, that they’d be filling in gaps in the research agenda and that it was time for a fresh approach to this disease …and they weren’t blowing smoke. The WPI website is up and this organization is different..
ME/CFS - The first hint of something new came in the ‘About Us’ section. Chronic fatigue syndrome is gone! Instead there’s this disease called ‘ME/CFS’ and what a change that is; instead of that fatigue word staring you in the face there's just ME/CFS - a symbol for a difficult disease, nothing more.
It’s actually a bit jolting to see ME/CFS dot a professional organizations website and it’s probably intended that way; the WPI, after all, is not focusing on chronic fatigue syndrome. The disease they’re studying – called ‘ME/CFS’ – appears to bear little resemblance to the chronic fatigue syndrome our federal agencies are studying.
Frequently Asked Questions: Very Different Answers – The WPI’s conception of this disease really begins to emerge in the FAQ’s.
A Different Definition - The diagnosis section refers not to the CDC produced International Definition but to the Canadian Consensus Definition (CCD) – a startling change for an organization of this prominence. The CCD with its tighter diagnostic parameters and its emphasis on post-exertional malaise been a big hit with many researchers but the WPI is the first prominent Research Institute to specifically endorse it.
A Contagious Disease - Similarly it’s almost become dogma that ME/CFS is not infectious but the researchers at the WPI aren’t so sure. When asked if the disease is contagious the WPI, citing various ‘outbreaks’ and several pathogens that may be associated with the disease, simply says "Quite possibly’.
New Prevalence Figures - How many people does this possibly contagious disease with a new name and definition strike? In what appears to be a dig at the CDC’s latest figure of 4 million Americans with CFS - which was based on their controversial Empirical Definition - the WPI states 4 million people worldwide have ME/CFS.
Prognosis - Most ME/CFS experts say full recovery is rare and the WPI agrees but the general consensus seems to be that many if not most ME/CFS patients do get better over time. Here the WPI goes its own way, rather startlingly stating that the vast majority of ME/CFS patients, fully 80% of them, "do not get better" over time.
A New Emphasis Indeed - A possibly contagious disease with a different definition, a different name, different prevalence figures and different outcomes? The WPI has not pulled their punches on their website; this disease – this ‘ME/CFS’- is different from what we’re used to seeing portrayed by professional organizations.
A True Research Center - The rubber really meets the road with the research component. In order for the WPI to make the difference they want to make they’re going to have to do research and lots of it. Building a building is one thing but raising money for a strong research program is a much more nebulous enterprise. Could they do it?
The answer appears to be an emphatic yes. The WPI lists 14 ongoing research projects – the same number as the NIH did in 2007 - suggesting that their effort may be on par money wise with the NIH, CDC and Japanese efforts. It clearly dwarfs any other research programs on ME/CFS.
These aren’t your ordinary bag of research projects either; for one thing they’re completely focused on the immune system (no ‘neuro’ projects yet). Not surprisingly a significant number of projects focus at better elucidating the pathogenic component of ME/CFS (HHV-6, enterovirus, HCMV) but the biggest focus is on elucidating the immune problems (cytokines, RNase L, NK & T cells) these researchers clearly believe play a big role in this disease.
One particularly interesting study will try to determine why some patients respond to Valcyte and other anti-virals and others do not. Another seeks to uncover the immune imbalances that may be allowing chronic infections to persist. Another involving enteroviruses with its emphasis on ‘leaky gut’ appears to be piggybacking on Dr. Chia’s work. Two are examining a possible cancer (T-cell lymphoma) subset. Two more are searching for biomarkers.
A New Player in Town - Thus far everything we’ve heard from Annette Whittemore about the WPI is true. With it’s focus on a new name, a different definition and a different research slant – the WPI clearly aims to shake up the CFS research world. ME/CFS is a complex disease that has not yielded its secrets easily and it’ll take time to tell if their new approach will pay off. In the meantime one can only admire and applaud the Whittemores' and Dr. Peterson’s determination to bring this facility to fruition. As federal programs decline its nothing short of astonishing to see an Institute of this size (focused on this disease!) spring up almost overnight. A future edition of Phoenix Rising will examine the WPI in greater detail.
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http://CFSdefinitionpetition.notlong.com Anyone anywhere in the world can sign it and comment (many people from outside the US already have)