Wednesday, August 4, 2010

The Flashpoint and the Big Squeeze

A few months ago, the Patient Advocate wrote a post entitled The Flashpoint. Now it is the beginning of August and I want to revisit this subject. It is time to reassess what is happening in the world of ME/CFS. On the surface, this is a difficult time. Surprisingly, the NIH paper is still being withheld. (We are awaiting word on the InvestinME UK study.)

The Patient Advocate would like someone to tell him what is gained in delaying the release of this NIH study? The PA would like for someone to tell him what "review" of this study is necessary? This all was a crock of shit. The truth is that this is a delaying tactic - and the tactic would have totally worked but for a leaked paper and for the energetic intervention of a few persons acting on our behalf.

The Science study was published many months ago. In the real world (a world prior to our world), this research would have ignited great excitement and a serious effort to confirm or demolish it. This is what science is about - "Nothing upon another's word." The Patient Advocate would welcome a serious study disproving the association of XMRV with ME/CFS (if it is in the cards). (Who wants to chase chimeras?) The Patient Advocate wants the XMRV/CFS connection to rise or fall on its own merits. This is what science used to be about - rigorous competition, complex challenges, thorough study, confirmation, testing, testing again- and the ultimate excitement and benefit of success, should it be obtained. Today many scientists do not play this game. Instead we get a bunch of "new-fashioned" scientists trying to knock down XMRV for a bunch of hapless reasons. We live in a pathetic ego-driven age - the Age of Stupidity. Everything - every aspect in our culture - gets short-circuited. Like our banks, science too is leveraged.

In the past year, the CDC has asked, relative to XMRV, for additional testing of various studies and presentations. These bureaucrats hold the rest of us hostage. The CDC asked for more information and then sat on it, silent, brooding, and uncommunicative for months. Why would the CDC want to delay this science moving forward? Why did the CDC sidetrack the situation with absurd requests and deliberately designed studies to get zero XMRV findings?

The PA can give you a few goals of these obstructionists (to which you can add your own).

1.) It is very important (for the CDC and others) to put the brakes on ME/CFS research. Certain anti-ME/CFS elements do not like the direction in which things are going (for a variety of reasons). At the moment nothing can move forward in the application process for research grants. There is a seasonal grant application period and it has passed. Additionally, the WPI and others cannot apply for XMRV grants because this research is still "experimental". For the obstructionists, the longer the situation stays this way the better. To them, any delay is seen as a positive. What difference does it make to them? They can always think up an endless set of roadblocks. Their single desperately focused goal is to slow the momentum - and in the process to choke the money flow. In this regard, those opposed to ME/CFS research are succeeding quite well. The main target is the WPI - the Flashpoint.

2.) For the obstructionist it is important to slow down donor giving by generating innuendo, uncertainty, and then disinterest. The obstructionist attitude is this: Let's see how many ways we can muddy the water. This XMRV discovery normally would have propelled private research dollars flowing into the WPI and other private research. Perhaps even the federal government might have wanted to get involved? Instead, with the obfuscation, the money flow has not been forthcoming. This choking off of funds is an age old tactic. We saw it with Jonathan Kerr, in the UK. First he was given a little money, then he was given no money, then poof! - he is gone - disappeared.

3) It is important to the XMRV deniers to put a damper on the momentum of the WPI and particularly to tamp down the celebration of its new building in mid-August. The importance of the opening of this Neuro-Immune Institute cannot be overstated. This is a very big deal. This Institute is going to be a symbol - in concrete and glass -of dedicated and tangible ME/CFS research. Anything that can deflate the celebration of this private, philanthropic effort will be undertaken with whatever innuendo and distortion necessary.

4.) And then, for obstructionists, there are the "no discernible reason" reasons. These reasons are born out of the bureaucratic mind: boredom and/or Nihilism. These "problems/excuses" include "creatures of habit", knee-jerk reflexes, innate fear of superiors, their own guilt concerning past history with CFS, a natural attraction to idiocy, fundamental intellectual weakness, professional jealousy, "control issues", "power games", too rich a diet (from fancy dinners), working in a building with no windows - all the "modern" problems. Who knows what else? -you can add your own reasons. This is our government - at least at this level.

Despite all this, we can imagine this real and tangible symbol - the WPInstitute building - will be open soon, first for research and then for treatment - the latter in a few months. This will be the first institute devoted to research and treatment for Neuro-Immune illnesses. After this the WPI will take on an even more visible role as a clearing house for ME/CFS treatment and research. The WPI's calling card is action-oriented, expansive and generous research efforts. They want to share and export their research and testing and treatment. Is this too grand an idea? Are we not worthy?

Of course there is a subplot here - a rarely mentioned item or two. Certain people do not like the emergence of a dynamic new idea coming from a Podunk state like Nevada, and from a bunch of privately funded non-academic scientists. It does not conform to the rigidity of the average, non-thinking mind of academic science (Acanemia). To them it is inconceivable that something of this magnitude could emerge outside of the insular world of Harvard and Stanford. Additionally, to their minds, Reno is such a nowhere place. When was the last time that something important came out of this backward place, they ask? Thirty-five years in academia has taught me to expect anything - particularly in regards to low aspirations and infighting. Academia is a cesspool.

The CDC will hang on for as long as they can - until these "power boys (and gals)" are ground up into mincemeat. One can see the parallel to 1992, but this will not be a repeat of that year. At that time, very few people stood up - or not the right people - or not enough of the right people. And importantly, no one at that time could believe the CDC would act in the way that they did. This time it is different. This time everyone knows that the CDC is devious and lies regarding this ME/CFS matter. It is in the record. What the CDC does not realize, is that the world turns - and it is still turning. The fact that they are dragging their feet does not mean that others are dragging their feet. The work at the WPI and other labs goes on - and the struggle continues.

Not surprisingly the WPI is moving forward at a consistent and measured pace. Certainly having to defend themselves every step of the way is a distraction, but this is a tactic, a tactic of those who want to disable scientific research into ME/CFS. The WPI is a flashpoint, the most convenient and obvious target. They get this assignation because they are very aggressive and have done so much in such a short period of time. So far, the full significance of the WPI's work is not clear, and it is, at this moment, very much in doubt whether we will ever find this out. Personally, as an impartial observer, I want to know.

In the Patient Advocate's coming and going, he sees and hears many things. As a blogger, he is free to write what he wants. The Patient Advocate is not a journalist. The PA has no sources, except for my own wits. He does not need sources. One of the surprising (or not so surprising) things that he observes is various forms of the "Big Squeeze". At the NJCFS conference last fall, the PA sat bolt upright in his chair on hearing of threats aimed at Dr. Ken Friedman and his university job. The PA is fully aware of the stringencies dished out towards Dr. Sarah Myhill and two ME/CFS doctors in Belgium. Others, unnamed, are constantly under threat for their dealings with ME/CFS. The PA has learned to discern the meaning behind doctors talking in a whisper about ME/CFS. The PA has learned to lean forward in order to hear.

And then there is our ME/CFS UK friend, the researcher Dr. Jonathan Kerr. I have written about Dr. Kerr before, most recently in late May, when I saw, with my own eyes, "the writing on the wall". Recently Dr. Kerr "lost his job". This means one of several things. Either he was fired, or he was denied tenure (the same as being fired), or his contract was not renewed. Contracts are usually not renewed in academia because of "weak research". It is not difficult to deduce what happened here. Whatever the particulars, this is a deeply saddening and disturbing story. Dr. Kerr was a fine and objective researcher, working on the complex relationship of genes and ME/CFS. As a legacy we can be assured of one thing. Dr. Kerr's research in ME/CFS has come to an end. The conclusion that we can make is this. The squeeze that is often given is not a little squeeze, it is not a "friendly" squeeze. No it is the "real deal" - a squeeze that breaks all the bones in the hand, or breaks ribs and collapses the chest cavity. It is the "Big Squeeze".

A good number of months ago, several persons showing "partiality" to the XMRV research efforts were advised to take a step back. The bearer of this message indicated that the these research efforts and labs were going to be neutralized - the operative word is "taken out". You can believe this or not, but this is the essential matter of the struggle. You can nuance it this way and that, shade it however you want, but we are witnessing a very serious effort to take out ME/CFS research. It is worth mentioning that the WPInstitute is not really the issue. It is just the most obvious target - no matter what indiscretions that one wants to unfairly and hypocritically dump in their laps. (I always found these "tactical" criticisms of the WPI or Mikovits in particular to be an equivalent of blaming the ME/CFS patient for their illness.)

The Patient Advocate would like to comment on speculation that "the Patient Advocate is clearly tied into some of the action at the WPI". Not only is this an incorrect assessment, but it degrades the PA's place in the world. The Patient Advocate is an independent observer. The PA is "tied to" one thing only: the PA "is tied" to his daughter and to her betterment. With that in mind, the Patient Advocate determined very early on that the WPI was an unusual research effort, something new and remarkable that had surfaced in this little centrifugal world of ME/CFS. The WPI represented (and still represents) for him a consolidation of the best "hearts and minds" efforts in science as applied to ME/CFS. The WPI is a place devoted to scientific enlightenment. If the WPI is taken out, it is going to be a permanent setback. People involved in ME/CFS need to think very clearly about this situation. It is not a matter of agreement; it is a matter of clarity. Concerned ME/CFS patients and advocates have to connect the dots. It is crunch time.

All this is not a new story. But as Igor Stravinsky said, some things bear repeating. This is one of them.

18 comments:

  1. Patient Advocate, this is really scary. You have said here what I have suspected. It is crunch time. We are being told to sit down and be quiet and nice and wait...and wait...and wait. I do not believe this. We need to wake up as many people as possible and do all we can to stop WPI from being taken out. For your next article, I hope you'll think about what we can do to help prevent WPI from being taken out. Like you, I believe that if WPI is taken out, it will be a permanent setback. I was already suffering when the CDC successfully killed Dr. DeFreitas' research. The CDC and their friends have stolen another 19 years of my life since then, and now it looks like they are trying to steal many more years.

    What can we do to prevent this?

    Patricia Carter
    www.mecfsforums.com

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  2. In an interview 2 days ago,
    Mike Hillerby, VP of WPI, mentioned an "International Symposium at WPI"
    happening in a couple weeks that includes medical professionals and
    scientists from "around the world" coming to Reno to discuss "XMRV and
    CFS." THIS IS A CLOSED DOOR MEETING PEOPLE!!
    Also their Grand Opening Public Presentation and Tour is Aug 21st.

    Play Interview here:
    http://www.publicbroadcasting.net/kunr/news.newsmain/article/0/0/1685395/Nevada.\Newsline/Chronic.Fatigue

    They are also presenting a paper from a collaboration with HEB at the 1st XMRV workshop in Sept. at the NIH. I am holding HOPE that the NIH/FDA paper will be Published by then... cuz THEN I think will be *IGNITION*

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  3. In Osler's Web, there is a very telling comment by either Peterson or Cheney, on hearing that CDC intentionally F-ed up replication of DeFreitas' research: "they don't WANT to find anything". And the same is still true. It would prove Straus/Reeves to be wrong if they found evidence that CFS is biologic and not psychiatric. They'll obstruct and obfuscate and outright lie to avoid tarnishing their reputation.

    One hopes WPI can bring Dr. Kerr on board to continue his research.

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  4. Once again, the PA has captured where we're at with startling clarity and eloquence. I read this latest post with a mixture of horror, amazement, excitement, and hope.

    Although not a conspiracy theorist, I do have to wonder what the CDC is hiding. Perhaps XMRV is a bio-weapon that the US military developed and leaked into the general public? Perhaps XMRV was a contaminant in the vaccines that we received as children?

    Sooner or later, the truth will out, and then (to paraphrase a line from another PA blog) there will be egg on a lot of faces.

    In the meantime, we must do everything we can to support the WPI. We are at war, folks, and the WPI needs all the ammunition they can get.

    Drew

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  5. Always a great job but this post is super critical. Thank you for getting on top of a very dangerous situation that affects us all.
    The Dr. Kerr situation is very upsetting and telling to me. This just adds further to a UK-US cover-up. But Genes? I assume ANY research at all on CFIDS/ME is dangerous to "them", including solid research on genetics.
    Again, great job. Thank you for getting the word out. Also, please all: Send those dollars to the WPI. The PA is dead right: "THEY" are trying to kill off any and all work on CFIDS/ME and going after WPI since they are independent from the governments of the UK-US (and others). WPI IS doing real research where the Feds have done little to nothing in over 30 years.
    Great job. Thanks.

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  6. "2.) For the obstructionist it is important to slow down donor giving by generating innuendo, uncertainty, and then disinterest. The obstructionist attitude is this: Let's see how many ways we can muddy the water."

    You sure have that right! Our False Friends at CAA and the Phoenix Rising forum have been muddying the waters and subtly smearing Mikovits and WPI since the Science paper came out. Occasionally they say something positive just so they can claim to be "balanced", but the overall thrust is to squeeze WPI out of the ME/CFS research picture. After all, if the actual cause is found, these organizations won't have a customer base anymore. Generating innuendo, uncertainty and then disinterest is their goal.

    Thank you for connecting the dots and putting it out there for all to see. This is indeed a very crucial time. And the Alter/Lo paper is STILL not out, obviously a part of the delaying tactics.

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  7. If Dr. Kerr has lost his job (I heard something before this blog), it doesn't necessarily mean his research is over. The system in the UK may be different from the US.

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  8. Bravo, again you hit the nail on the head.
    It is more than crunch time, long overdue time for the ME/CFS patient community to wake up!
    Stop acting the victim!
    Empower yourself!
    Speak up !
    Act up!
    Nobody is going to do it for you!

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  9. I just want to add, or emphasize something. I just watched the interview with Dr. Ila Singh and read many other interviews, reviews and conferences of people involved in the recent studies of XMRV-ME/CFS, including some statements made by Alter and co. What strikes me again and again is the fact how little they know about ME/CFS ! How can people do research into a disease,if they are not even familiar with the basics of symptoms and biological abnormalities, which have been proven and talked about in 4000 publications up to this day ? Most of us patients are better informed !
    It leaves me speechless that they do research in a patient cohort they do not even know how to diagnose, because the do not know the correct criteria! Every ME/CFS patient can recognize another in a few hours, added the well know biological abnormalities, it should not be such a mystery, should it!
    I fear with so much ignorant people on board the XMRV-ME/CFS train, we can wait years until they will get it right!
    My only hope is the WPI Institute!
    Our efforts should be clear, get as much funding to them as we can to them, so the real experts can continue their job !

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  10. My lovely daughter reminds me that I need to answer one of these comments. I do not ascribe to the negative vibes expressed towards Cort Johnson and the Phoenix Rising site. Many of us would not be in the positions that we are in if it were not for Cort's daily, elevated efforts on behalf of all those affected by this strange and nasty illness. Every single day I am appreciative of what he brings forward concerning the broadest considerations of this illness. Any differences that I might have with him will be resolved by nudging him along with my thoughts and ideas (as in this post), and, incidentally, it works equally the other way. That is how differences among like-minded people are resolved. As far as I am concerned Cort Johnson gets a "free pass" far into the future for what he has done.

    Regards,
    Chris

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  11. Yes, the PA is correct: Cort Johnson is a true champion in the fight for progress against CFS. Hellooooooooo, oerganix, Cort is a CFS patient ... he is one of us!!!! In case you're not familiar with it, Cort runs another website called "XMRV Buzz" where he provides the latest info and developments on CFS. Cort is as excited and hopeful about the WPI's work as we all are, and he is constantly reminding us to support the WPI.

    Now, the CAA, their motives are murkier. They are a charity organization run by a woman who is NOT a CFS patient and who receives a very generous salary, money that would go away if CFS is solved. They seem to care about CFS patients, but it's hard to be certain where their true motives lie.

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  12. Unfortunately the PA has hit the nail on the head, they are trying to starve the WPI of oxygen (funding) to try and supress the science or at least gain control. We are at a major crossroads (thank goodness for the leaking of the NIH/FDA paper), this can literally go either way....we need to get behind the WPI and support them in any way possible by putting pressure whereever we can. Dr Mikovits was not invited to speak at the first XMRV workshop, the reason being was that she was a'patient advocate' trying to demote her as a scientist and in turn degrade her science...they are trying to squeeze the WPI out and marginalise XMRV in ME/CFS, they simply don't want us to have it. This has all been done before....it us up to us, somehow, to make sure that this doesn't happen again.

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  13. As a fellow hostage I thank you for this in depth assessment of our current situation.

    As for Dr. Kerr it is indeed a very large blow to the CFS/ME patients in the UK. The equivelent here would be taking out Mikovits!

    However I am of the opinion that when one gets booted out, fired, or whatever after being an excellent person in his field, human anger will come up and he may begin leaking inside information that in the end could help stop the hostage takers one way or another.

    I do not agree with one commenters feelings about the CAA. I feel they are trying to keep the focus on ALL avenues including XMRV. This in my view is wise.

    In closing, I would like to give a resounding "Amen" to the Patient Advocates assessment that we are indeed living in an age of stupidity!

    Let's hope the SWAT team comes and takes those who hold us captive out!
    We need all the facts...all of them!

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  14. Thank you

    Strength in numbers!

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  15. FYI the president of the CAA has a very close family member who was cut down by CFS/ME and has to lead a limited life. She does care deeply and to insinuate that she doesn't is quite unfair.

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  16. Thanks, Chris, for another excellent commentary. I think this is one of your best. GO CFS/ME researchers!

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  17. I have now seen an E-mail from Dr. Kerr and contrary to the suggestion in my earlier message, it looks like he will be stopping ME/CFS research. He is now looking for a job and most likely will only find the ordinary type of one that doesn't allow for research he suggests.

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  18. We will not have another DeFreitas Redux. Not with the Internet and the many CFS sick that are out there, aware, and watching every single thing that the Federal government is doing, especially those at the CDC - the ultimate enemies, at this point.
    So, in order to get OUR message out to the public (so they can get damn mad), senior policy makers, journalists, researchers, muck rakers, etc. there is now a major national media campaign located at:
    http://www.causes.com/causes/511536
    We have over 900 memembers and about $3,400 in donations. We must have $8,500 for the 1/2 page Washington Post AD that we are in the process of writing up now. We will be moving to a website with tons of info and this will draw thousands if not millions of CFS sick, families, advocates, etc. AND get us more members and donations. This campaign begins with hitting the Washington Post hard, for obvious reasons. Next will prob. be the New York Times, and then onwards towards other newspapers, journals, TV, etc. But first, we need to get that $8,500 in donations to get our first hard-hitting AD in the Washington Post so that the public is made very aware of this possibly (probably) deadly family of viruses.
    What happened to Dr. DeFreitas WILL NOT happen again. We are all on guard and aware of the past - thanks to Hillary Johnson and her brilliant book "Osler's Web" (the CFS Bible and History Book, most of us keep somwhere close at hand).
    So, hit the above link, join, donate if possible, and be part of this patient-driven campaign. This is the only real campaign that brings in the patients and makes them a part of the entire campaign. This is where the sick finally get to have a real voice in crafting and executing our message(s).

    Thanks PA, great work as usual.

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