XMRV – the Potential For Change

October 19, 2009

Posted by Cort Johnson

“A supernova (pl. supernovae) is a stellar explosion. Supernovae are extremely luminous and cause a burst of radiation that often briefly outshines an entire galaxy”

This discovery has the potential for being a world changing event in every way for chronic fatigue syndrome patients.  If it really works out – still an if –  one almost has to think in inter-galactic terms to find an appropriate analogy of how different things could be five years from now.  The illumination this type of discovery could cast would prompt researchers to travel down pathways we can’t even imagine right now.  One wonders if any disease has had such a dramatic turnaround as this one may be in store for.

Finding ‘IT’ - If the WPI is right about XMRV the scientific community has finally been given what they’ve been asking for all these years. The lack of ’something specific’ to focus on – an injury or pathogen or even a biomarker  - has been haunting this field and left us in scientific limbo for 25 years. For all its sophistication the research community just abhors the type of complexity ME/CFS has thrown at them. More than anything it wants an easy ‘in’ – something it can dig its mighty technological teeth into.  It’s basically ignored  this disease simply for an almost ludicrous reason – it didn’t know how to get started.

Essentially chronic fatigue syndrome always been too messy of a disease with too many  potentially interlocking parts, too many parameters, too many symptoms (!)  for our finicky left brain dominated research community to bother itself with. We’ve learned the hard way that if you don’t provide the medical research community with the right ‘toy’ it will refuse to play. We thought they would care because we were sick; well, welcome to the real world – they didn’t. It’s clear that solving diseases or saving lives is secondary to our vaunted research community. The medical research field – like most other fields –  is more about peer recognition and getting ahead.  You don’t get points for being sick – you only get points for being sick in the right way. It’s a damn shame and someone should fix it.

Not ‘IT’ - - It’s not that our few, brave researchers haven’t been trying. They’ve have been able to find pretty consistent abnormalities in heart rate variability, natural killer cell dysfunction, RNase L dysfunction, oxidative stress and cortisol and the field is full of interesting findings but funding levels have continued to tank. In truth all of these had their little ‘problems’ – problems that other fields might have been able to sustain but not this one.  HRV and RNase L are too new, oxidative stress is too common, cortisol isn’t low enough and natural killer cells aren’t T cells. None of them, given our puny status have so much as stirred the slumbering research field.

Finding ‘IT!’ – But a pathogen…..a pathogen is different. Researchers have been studying pathogens since modern medical science begin. Researchers win Nobel prizes for discovering pathogens. Popular books are written about ‘Pathogen Hunters”. Pathogens definitely get the juices of the scientific community going. They make careers. In short,  they’re the closest thing to sexy in the research field.

Although viruses may be vanishingly small bits of RNA or DNA they’re infinitely easier to study and understand than are ‘multi-systemic’ disorders. The research community is just beginning (belatedly) to develop the tools and protocols to assess how the systems interact with each other but they’ve been studying pathogens for decades and decades. The protocols are sitting at the ready. Pathogens present the kind of ‘simple’ problem that the research community is really good at focusing at. It really couldn’t work out much better for us.

So what could happen if this finding really works out? What can we expect if this virus is shown to cause ME/CFS (and possibly other diseases ). Why not dream a little?

  • Funding explodes – Chronic Fatigue Syndrome is funded like a small disorder but it’s not a small disorder. It effects about 1 million people. Studies have shown that it causes about 25% of those affected to go on disability. It costs families about $20,000 a year. It costs the nation about $20 billion dollars a year in economic losses. That’s a lot of money even for a disease.
  • Yet this major disease is ranked about 210th in rank of the 215 diseases and conditions in NIH funding. It receives about 3 million dollars a year from the NIH. That’s chicken feed, chump change the NIH throws to keep the beggars quiet. It’s a rounding error for AIDs funding.
  • It’s definitely not disease solving money – you can’t solve any disease at three millon dollars a year. Ten million dollars is still peanuts and hardly worthy of mention. Consider that asthma causes much lower economic losses than ME/CFS yet gets 250 million dollars a year in federal funding. What this means is that there’s ample, ample room for this field to grow. Given its size and scope once this disease is validated think hundreds of millions of dollars A YEAR in funding once the field gets built up. That’s more funding in one year than this disease has gotten in twenty.
  • New Faces and New Places – Expect a lot of new faces from a lot of high places as the field starts to leverage the assets of a huge cadre of pathogen researchers.
  • Bye- Bye Office of Women’s Research  Hello NIAID – The little CFS program that’s been slowly sinking in the backwater that’s  called the Office of Research Of  Women’s Research (ORWH) where its received no funding (that’s no funding!) gets moved back into the mighty billion dollar National Institute of Allergy and Infectious Diseases (NIAID).
  • CDC - After wiping the egg off their face expect things to change at the CDC. It’s hard to imagine them keeping around a virologist (Dr. Reeves) who not only missed the biggest virology in several decades but publicly trashed the finding and has had little interest in anything viral in this disorder. Let’s not forget the virologists at the CDC that will probably be salivating at the chance  not only to unlock the mysteries of chronic fatigue syndrome but perhaps fibromyalgia, autism, prostate cancer and other disorders.  If this works out the CDC, like any institution,will want its share of the glory. Look for it to throw its ace virologists into the fray.
  • Ampligen - Expect Ampligen to finally be approved by the FDA either now or not long from now. If not now expect a well designed, well-funded study (finally!) to quickly show the drug works and for it to get approved shortly after that.
  • Treatment Studies – expect a slew of treatment studies from drug manufacturers seeking to expand the market for their products.
  • Another Dream to Come True – Expect Annette Whittemore’s dream – of multiple WPI’s centered around the present (but larger) WPI – to come true.
  • Annette Whittemore Wins the Nobel Prize – OK, so that’s unrealistic but she, her husband, Dr. Peterson, Dr. Mikovits, Dr. Lombardi and the team should win our version of the Nobel Prize (whatever that is)

Right now there’s still alot of hard work ahead and critical questions to answer and if it does happen it will take time but there’s reason to believe it could. Researchers often, at least in public, play down expectations but the WPI has not. Both in their public announcements and even more so behind the scenes they are very confident in their findings.

15 comments

{ 15 comments… read them below or add one }

Laurence Swift aka Wingfingers October 19, 2009 at 1:20 pm

I think we’re all optimistic and expecting that XMRV will soon be ratified as the actual and primary cause of ME. To be followed by simple accurate testing kits, and by anti-retroviral treatments. Maybe, later, vaccines. It’s all suddenly POSSIBLE.
Nobel Prizes can only be split 3 ways. My split would be (1) the Whittemores; (2) the virologists Mikovits and Elaine deFreitas (who actually discovered the virus 18 years ago); and the Doctors Dan Peterson and Paul Cheney, who devoted their lives to treating and studying real patients.

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Jessica Canham October 19, 2009 at 2:57 pm

Beautifully written post, Cort. I pray that everything you’ve written comes true!

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ST October 19, 2009 at 3:58 pm

No matter if this is shown to be involved or not, the WPI have my eternal gratitude for looking. They demonstrate the best of human nature.

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Alyson October 19, 2009 at 4:10 pm

Dare to dream!

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Liz Ho, Australia October 19, 2009 at 7:59 pm

Ill 27 years with ME/CFS, with the ebbs and flows of hope, I can only say, hope springs eternal. If the dreams above do come true, I might go from being 80-year-old at 54 to having a life. The world would open up for me. A heart felt thank you to the Whittlemore-Peterson Instutite from my family and me.

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Eva October 21, 2009 at 9:30 am

Hillary Johnson supernova’ed all over the NYT today. What a development.

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cort October 21, 2009 at 9:52 am

Thanks! That was an amazing piece – it shows just how far we’ve come such a very short time! It’s really kind of hard to believe :) .

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cort October 22, 2009 at 7:42 am

If you had the chance to see it in print you would undoubtedly be impressed. It is the lead op-ed piece, it has an image next to it – and it dominates that page of the newspaper – it’s an amazing thing to see an editorial on chronic fatigue syndrome that slams the federal response to this disease featured so prominently in the most important newspaper in the world. The supernova spreads its wings!

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drew October 22, 2009 at 1:21 pm

Cort, why do you say the the Nobel Prize for Annette Whittemore is unrealistic? If the next studies support her findings, and it turns out that 10 million Americans are infected with this retrovirus, isn’t it possible she would get that kind of recognition?

Drew

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Ama November 6, 2009 at 3:33 pm

I had a panic moment …….when after days after all of this and the meeting in Washington………………….i start thinking that this XMRV it could just be a “green card” for AMPLIGEN…………….and that’s all!!!!!!!!!……………………..???????????¿¿¿¿¿¿¿¿¿¿¿¿¿¿
i know a lot of you think that ampligen is a good choice……………but i do not think that………………..

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cort November 6, 2009 at 7:55 pm

Not at all; XMRV is much bigger than Ampligen (MUCH Bigger). It may infect millions and could potentially figure in all sorts of diseases. It would be very nice if XMRV gave Ampligen a boost but XMRV is the big news.

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Jane November 7, 2009 at 1:07 am

I feel like it is going to be difficult for Doctors and other people that have had such strongly dismissive views regarding the biological origins of ME/CFS. It is very tempting to want to try and shove it down their throats…. but I believe we need to be careful that our very limited energy doesn’t get used up because we have unintentionallyincreased their defensive position….. because we have not given them room to move their believe system to something more helpful. Ultimately we as patients will have to take a greater humanistic position because we need our drs on board quickly and fully. I believe we will be better off if we can take a position of grace and display moral dignity….dispite the demoralising and dehumanising treatment we have been subjected too for soooo long.

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Ama November 7, 2009 at 7:09 am

UfFFfffffffffff…….Hope you are right Cort….

thanks for reply……..:)

–Amaia from Spain…39 years—more than 10 with cfs…and housebound since 2004—

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Erik Johnson November 8, 2009 at 10:12 pm

History has shown that every time that the medical profession “psychologized” an illness in spite of all the clues to the contrary, they have never seriously been called to account for how these repetitive failures occur.
In fact, they even have a psychological “evasion tactic” that helps them escape retrospective analysis. Anyone wishing to know how so much evidence could have been ignored and overlooked is diagnosed with “Spitefulness” and “Vengeful personality” disorder, and is told to quit “obsessing about the past” and simply move on and forget it.
(Wouldn’t it be something, if this argument worked in a court of law?)

For the sake of justice, for the sake of science, and for the sake of future generations, we should go ahead and demand an explanation from the entire medical profession:
“How on Earth could this have happened… AGAIN?”

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Jane November 9, 2009 at 12:51 am

You are so right about many medical profession Erik. It does my head in thinking about the shift that is needed. It has been an extremely abusive path that has lead to patients lifes being destroyed on so many levels. The CFS is one thing, the abuse that has gone along with it has been another…… both end with a life destroying result. Maybe along with the trial of antiviral meds some health ‘professional’ could be given some psych drugs for their delutional states over the years……

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