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ME/CFS: A disease at war with itself
We can all agree that ME/CFS is a nasty disease, particularly in its severe form, but there are abundant nasty diseases in the world. What is unique and particularly confounding about our disease is that so much controversy surrounds it, and not only surrounds it, but invades it too.
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Looking Ahead: XMRV - the Potential For Change

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Cort, Oct 19, 2009.

  1. Cort

    Cort Phoenix Rising Founder

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    The latest from the 'Bringing the Heat' blog. I'm just all over the place with this (obviously). Some of my worries about selective cohorts were answered by the WPI and by Dr. Mikovits rather optimistic statements. Sometimes one just has to trust. So this blog is about the potential that I see XMRV has to evoke change.

    http://aboutmecfs.org/blog/?p=990

    LOOKING AHEAD: XMRV- the Potential For Change

    This discovery has the potential for being a world changing eventfor 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 has basically ignored this disease 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 finding 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 -we'll have to come up with something)

    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 - lets hope that confidence is borne out over time.
     
  2. jenbooks

    jenbooks Guest

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    Nice piece Cort.
     
  3. Martlet

    Martlet Senior Member

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    Very nice piece. It brought tears to my eyes. Thank you!
     
  4. mezombie

    mezombie Senior Member

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    It's good to see this piece about the potentially positive impact of the XMRV research on your blog.
     
  5. Summer

    Summer Senior Member

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    Thanks, Cort. Hope is a wonderful thing, and this piece touched me. :)
     
  6. Koan

    Koan Be the change.

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    Nicely done, Cort. I got excited all over again! I was pretty sure I was too worn out to ever get excited again but I did.

    :D
     
  7. Encouraging words. Thanks.


    The above is my favorite paragraph! lol


    Yes, the 'XMRV-breaking-news' aftermath has been a more than a bit discouraging here. My doctor is not interested. My family isn't interested. "And so? ", they ask.

    But I feel certain that what is seen by many as a non-specific, nebulous, possibly irrelevant clue in the riddle of CFIDS/M.E., an illness seen as essentially a 'women's neurosis', will suddenly seem a goldmine to those researching prostate cancer. Ultimately, everything really is driven by 'money and sex'.

    Good blog, Cort. :)

    Encouraging words are very welcome at this point.
     
  8. JustJack

    JustJack put on yer dancin' shoes

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    thank you so much

    I come and go from newsgroups, but my wheelchair confined body, declining with 12yrs diagnosed ME/CFS and prior CMV Guillian Barre 1978 starting my long road to permanent disability, I am back, seeking answers I cannot get with docs no matter how hard I try.

    I am on a list for WPI, at least it is close to my home in Sacramento CA.
    This discovery is the beginning for us, I hope, hope, hope.

    I have been following Ampligen for a long time and have a fight going with
    the biopharma writer for the street.com, Adam Feurstein. He is convinced that ME/CFS is "non life threatening...so why the big deal", and that Ampligen is a hoax. I believe he is wrong and will not let up on him till he gives in.
    I sent him a protion of your blog, Cort.

    So, thanks.
    Jackie
     
  9. Frickly

    Frickly Senior Member

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    Hi Jackie

    Welcome to the forum. I hope you stick around. So sorry that this disease has put you in a wheel chair but I do beleive this new research could really turn things around. We will have to wait and see together. :):):)
     
  10. anne

    anne Guest

    Cort, you are a wonderful writer. Thank you for everything you do.
     
  11. Cort

    Cort Phoenix Rising Founder

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    Its going to take a while for this to percolate into the medical community. The important thing - the really important thing to me - it that it's gotten the attention of big players in the research world. They are excited about it and except for Dr. DeFreitas work in the early nineties that group - with all their influence and funding - haven't shown the slightest interest in ME/CFS.

    It seems that the people that we needed to get interested -- are interested. All we need is for it to work out! :eek: But the WPI seems very confident; they have their internal unpublished results to go off of - and based on them we haven't heard any indication that they're pulling back at all at this point.

    I've heard that this study was apparently held up for a quite a while which means to me that the WPI has had time to dig deeper and deeper into XMRV. It doesn't appear from any of their comments that they've hit any roadblocks yet.
     
  12. Koan

    Koan Be the change.

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    and it was vetted and vetted and vetted again.

    Go Cort!

    :D

    PS Can you please stop me from posting! :p
     
  13. citybug

    citybug Senior Member

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    Thank you Cort, for continuing to bring the heat and the reporting. I'm really optimistic about these scientific findings being a major game changer, but I think somehow we have to do more to make it happen. Even if the scientists are excited they don't get funding unless there is pressure from the outside. Asthma affects school kids, breast cancer, hiv pushed hard for their funding. I think we need petitions going around, and fundraising appeals for WPI, (even just 2) people in front of the NIH, or on youtube. Unfortunately I get so tired just from having an idea I can't start it. This may be the moment where we get pushed ahead even if XMRV led to something else. ...can't finish
     
  14. Aftermath

    Aftermath Guest

    Ampligen

    Cort is on the money with his writing here.

    With regard to doctors/families not being interested, hang in there. As Cort has written, the people at WPI have really staked their reputations on this one. If the study can be reproduced, the floodgates are going to open with regard to new research.

    Again, hang in.

    And exactly what are Adam Feuerstein's credentials to evaluate medical conditions?

    From his bio: Feuerstein graduated from Emory University with a bachelor's degree in political science.

    That being said, if I were a financial analyst, I wouldn't put much stock in Ampligen either. Sorry to be blunt, but its manufacturer, Hemispherx Biopharma is a SHIT company with a capital S. I have seen many of the top names in medicine with regard to this illness. Whenever I ask about Ampligen, I'm told that the drug has some promise, but is crippled by its association with a company whose management cannot shoot straight.

    With regard to donations to WPI, you guys are right on. Instead of visiting yet another doctor who cannot help us anyway, or blowing thousands on vitamins, we should be spending our money on donations to WPI. It's basically our only hope right now.
     
  15. dannybex

    dannybex Senior Member

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    I reluctantly agree. They've been trying to market this drug for at least 20 years, with no success, despite the fact that it has dramatically helped some with CFS/ME.

    I did see this quote on about.com:

    "In related news, Carter says Hemispherx is collaborating with the Whittemore Peterson Institute, which recently announced the discovery of a retroviral link in chronic fatigue syndrome, to see if Ampligen could be an effective treatment for XMRV."

    http://chronicfatigue.about.com/b/2009/10/16/update-ampligen-for-chronic-fatigue-syndrome-2.htm

    In the meantime, I'm confident other drugs and also natural remedies will be found that are effective against XMRV.
     
  16. jackie

    jackie Senior Member

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    Hi all.....My news isn't earthshaking - but it is timely.

    Today happened to be my first visit with one of my doctors since the "News" broke. Through an HMO, I have three - A Primary Care (see every 6 wks), a Neurologist (every 3 months) and an Infectious Disease Specialist (every 3-4 months).

    Today it was with Primary Care. Very good Doctor, but he relies on me for any info re: ME/CFS. And I guarantee I supply EVERYTHING I know - I yammer away endlessly!

    He's interested up to a point - sympathetic and compassionate to my sufferering, if at times a bit sceptical at the overwhelming litany of my complaints!

    I always experience some trepidation before his visit. Of course I worry that this is the time I'll be challenged on some point - or have to "prove" my case once again.

    So today I did my homework (A HUGE Thank You to Cort and all the contributors to the XMRV/XAND thread - ALL the info I could want in one place!) and printed out tons of pages to take with me to "educate".

    What a SHOCK! My Doc already knew about XMRV! - and he ALMOST knew as much as ME! No "Yeah, but?!" or "Well, I GUESS it's POSSIBLE?!" Or worse - "We'd better wait and see...?" This total acceptance of information has never happened before.

    He ordered more Blood tests than I'd had in quite some time. C-Reactive Protein (for inflammatory processes), EKG, Thyroid, and PTH intact as well as a complete panel AND Cortisol levels!

    My insurance just doesn't let me have many tests and I've asked for the simple Cortisol for years to no avail!? But I guess it's going to be different now.

    Also, He set me up for Abdominal scans, Liver function tests, Thyroid scans (this is an important one) and Pulmonary function. I didn't request any of these and if I'd had my wits about me I probably could have gotten away with asking for many more that have been previously denied! NEXT time.....

    Oh, and he brought up the increased incidence of Lymphomas, Leukemia and said he would be monitoring me (just don't know what that means?)

    Told me to call if I heard when the testing for XMRV was available - imagine that will be out of pocket for me.

    I was asked my opinion as to what I thought the treatments would consist of (IF I tested positive). He expressed concern regarding the high dosage of Antivirals I take and wondered aloud how a switch to anti-RETROvirals would be accomplished.

    He ALSO asked me what I thought the implications were re: those positive w/virus but asymptomatic. Wish I'd had the answers to THOSE questions!

    For the first time in years I felt that we were really on the same side! I sensed a profound difference in his attitude toward me - it was wonderful to be treated with such respect. And we did this all in the SEVEN MINUTES the Insurance Company allows for my appointment. NAH!!!! Just kidding - had an unusually lengthy visit.

    ONE down - two to go!

    Almost forgot...his lab Tech paid careful attention when drawing all the blood and actually noticed/commented that it seemed too thin and THAT should be tested, also (thought it was due to Acyclovir) - very solicitous!

    This is great! I feel like the Queen Mum! (or, with the amount of blood involved today....maybe Vlad The Impaler or DRAAAAAACULAAAAA!!!!!!)

    'night! jackie
     
  17. busybee

    busybee Senior Member

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    Well done Cort.

    Good to see you've bounced back.

    Bx
     
  18. Finch

    Finch Down With the Sickness

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    Hey Jackie

    Jackie, I find your post about your first doctor visit to be fascinating! I've no idea how you covered all this in seven minutes - you guys must have been talking fast! Your doctor must have been very well prepared ahead of time, too. I can tell you were!

    I was thinking it would be good to start a thread regarding our first visits to our current doctors after the release of the WPI report. You could easily start it with the post you just did if you're interested. I would definitely be interested in hearing the reactions people are getting when they visit their doctors. Yours is really wonderful, I think. It makes me believe that even if the word isn't filtering out to our families, the medical community might be really paying attention.
     
  19. Frickly

    Frickly Senior Member

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    Jackie

    That is awsome! The thought of not ever having an awkward doctor moment again just makes me smile.
     
  20. jenbooks

    jenbooks Guest

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    Jackie amazing post.
    Maybe your doctor was interested in this study because of you. Now he has a reason, and can tell insurance, for all the testing. No matter what you must have savored this visit.
     

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