Tuesday, August 24, 2010

The second most important day in ME/CFS

Yesterday was the second most important day in the history of ME/CFS research. Dr. Alter published his work on ME/CFS patients and reported the presence of MLV-related virus in 87% of these patients.

Never before in such a short time have so many articles been written about ME/CFS - by people who either knew or know nothing about this illness. The Patient Advocate worries how ME/CFS patients can sort through all this.

For the sake of clarity, the Patient Advcoate can point out a few of the more well-written articles - and every one of them comes from "the inside".

The first, of course, is Amy Dockser Marcus' article in the WSJ. Amy was at the VIP opening of the Whittemore Peterson Institute on August 16. She also interviewed a key figure in retroviral treatment possibilities, Dr. Jamie Deckoff-Jones. Dr Deckoff-Jones does not want to wait the 100 years necessary to fulfill "the needs of science", and she has been taking anti-retroviral drugs for five months. Her experience is chronicled on her blog.

A second, quite wonderful summary is found on my friend Kyal's blog site.

A third very compelling read is on the CFSCentral blog, written by Mindy Kitei. Read these three articles and you will strike the core of the issue.

It is important to remember that the first most important day in the history of ME/CFS research was October 8. 2009, the publication date of the astonishing discovery of a relationship between a MLV-related virus and ME/CFS. This was published as Lombardi et al. The WPI is not being given enough elevated attention for their remarkable, groundbreaking work with its far reaching implications. We certainly want to congratulate Dr. Alter and his team for their published study, but it is important to remember that his was a confirmation study. It is not so much that he and his team are cannon-fodder, but he was following the lead of others - and we do not want to forget that. He knew where he was looking and he knew what he was looking for. His work builds on and expands the work of Lombardi and Mikovits, but he did not discover this connection. Dr. Alter is sitting in the back seat of a car driven by others.

The Patient Advocate states this obvious fact as he is nervous where things will go for here. The PA is against marginalizing research at the Whittemore Peterson Institute. The PA would hope that the NIH comes to their senses and steps in and funds the WPI, but he would not count on it. Too many of yesterday's articles emphasize the view of "science" - that there is much more to do, that this study too needs to be confirmed, that we must wait for science to take its course, that this is the beginning of a long and episodic journey. It is the in the vested interest of "science" to string everything out as long as possible. This "science" has no sense of urgency. After all, the scientists, by and large, do not have this disease.

Even within the central organizations dealing with the illness there is a sense of caution, a sense that we need to "take our time", that more and larger studies need to be done, that causality needs to be discovered prior to treatment. This is all a bunch of crap. It is unnatural to strike against those who are seen as being like-minded, but this foot dragging is a bit too much - and these people need to be struck. They are too much interested in the gravy train. The rest of us have to deal with this illness, and we are interested in answers. The time for putting things off is over. It is time for action. The rough research outlines of this illness can be seen. The rest will be filled in later. Research can do two things at once.

This takes us back to the WPI - the private institution that started the MLV-related virus/ME/CFS research. The WPI gives no sense of waiting. They are pushing on, knowing that there is now potential diagnostic and treatment paths. They and their scientific allies are going down these paths and without a pause, without needing further confirmation studies. They see the future. How many others will join them now is anyone's guess. The WPI has invited/urged others to join them.

Of course the WPI itself will be conducting further studies into this virus family - and more confirmation studies of a retroviral involvement in ME/CFS will come out very soon (from others - Cornell, ARUP, InvestinME, de Meirleir reports finding XMRV in Europe.). The picture will be clarified. But this does not mean that we have to wait. The WPI wants to do more than wait, they want to do more than say how difficult things are. They want to move to the next level: diagnostics and treatment. This Institute got us where we are - and they are going to take us where we are going.

People who are ill with this illness (and their supporters and providers) need to think hard about this - and they need to step up and help. The evidence is in that research into ME/CFS, spurred by the WPI, has the potential to make a dent in this illness. The government might or might not help. They have such a sorry record that it would be hard to believe that they can overcome their own sclerosis in this matter. The word needs to get out of who is doing what, and what is now possible. The issues need to be clarified and pushed.

9 comments:

  1. Ah-ha! I read that a WSJ reporter was at the WPI opening but couldn't find a name. Suspected it was Amy Dockser Marcus. Thanks for the confirmation.

    ReplyDelete
  2. What a great WAKE UP CALL you have written here, Patient Advocate. It is clear to me that the government is not likely to help, nor are the "advocacy" organizations. If they were going to help, they would have done so sometime during the 25 years in which I have been suffering from ME/CFS.

    The only people who have actually done anything to help are those from WPI. It is clear to me that if we want this illness solved, we MUST step up and help WPI. There is no white knight coming to rescue us. If people with ME/CFS want wellness, WE and our loved ones must get for WPI what they need to help us. It is, clearly, our only real hope.

    Patricia Carter
    www.mecfsforums.com

    ReplyDelete
  3. I heard a rumor that WPI will publish a treatment protocol by the end of the year. That would be amazing. Watching people with this life-destroying disease try to manage it with frickin' supplements is heartbreaking.

    ReplyDelete
  4. Great article. What in your opinion can patients do to help WPI?

    ReplyDelete
  5. Another fantastic, informative blog helping us patients to sort out the information now put before us. I love reading your blog & helps me to filter out the rest of the noise, thanks.

    ReplyDelete
  6. I encourage everyone to write to all tv media news shows asking that sufficient time be given to delve into this research and to accurately describe the tormented life sufferers of CFS/ME currently lead. Awareness is needed to turn the tide of apathy toward this disease!

    ReplyDelete
  7. Nobody had the vision like WPI! Nobody is not waiting around for a hundred more studies like WPI and supporting them is the thing to do if we want a treatment. The government will drag it's heels all the way for years, just as they did with HIV, although I do think Harvey Alter is an excellent scientist (his work led to the discovery of Hep C) and he may surprise us yet.

    Thanks for a great insightful blog PA!

    ReplyDelete
  8. The PA has hit the nail on head, once again. It is in the interest of the scientific community to want to endlessly cogitate and ponder and re-examine and verify and mull over the findings, while us patients' lives are slipping away!! The WPI, on the other hand, "gives no sense of waiting" ... quite the opposite, in fact: they are moving full speed ahead to find answers that will help us all. That is why we must support them! And for those of you who would like to help, visit http://www.wpinstitute.org/help/index.html

    Drew

    ReplyDelete
  9. Thank you for another informative and insightful blog post. The WPI accomplishes more each and every month than the government does per decade. We need to support them every way we can.

    ReplyDelete