Wednesday, September 8, 2010

The REAL second most important day in ME/CFS research

Yesterday, events forced the Patient Advocate to move the vaunted Dr. Alter's confirmation paper to third on the list of "the most important days in ME/CFS research". Sorry, Dr. Alter.

Yesterday morning the Patient Advocate received a call from his son Peter, asking if he had heard the news on the BBC world news about the study that came from the University of Dundee in Scotland? (My wife also heard it on the news on the way to work.) I immediately went looking for it and found very little online. Later the contents of the study were released here.

This study came out of the blue. Very few people knew about it, or knew that it was coming. This study is a very big deal. While it does not mention XMRV, it does establish an association between white blood cell dysfunction and ME/CFS.

ME/CFS patients' systems give clear indication of fighting viruses, along with the attendant inflammatory issues. Coming hard on the heels of the long and unnecessarily delayed confirmation of the NCI/WPI October study, the study release gives us the REAL "second most important day in ME/CFS research".

In Bethesda today, the NIH conference is continuing. At this point, we are supposed to be thankful to these people. The NIH has had two weeks to respond in a positive way to the Alter study by freeing up discretionary money for research. Instead they have done nothing. Believe me, money is a five minute cell phone call away. Instead the NIH wants to run another confirmation trial, to revolve the discrepancies of the prior negative studies. Good luck! This is the usual "money well spent" - money used to elevate and justify one's own incompetence. Do we need this? No, we do not need this.

Somehow we are supposed to trust and believe in the very institutions that have participated in a not so subtle contortion of reality for 25 years. The Patient Advocate does not trust any government scientist. The PA has no reason to trust them.

The NIH obviously now wants to "get in on the action". This long summer of unease at the NIH/HHS occurred for a reason. The reason for the delay of Alter's paper was not because further study was warranted. Dr. Alter was not telling the complete truth on this one. The three month delay was designed to strategize what to do with the discovers of this XMRV connection with ME/CFS - and to figure out how to neutralize or degrade the NCI/WPI/Cleveland clinic position. It is currently going on. The NIH is interested in wresting control or partially wresting control of this illness connection away from the discoverers of it.

What can the NIH really do to help? They can immediately give money to the people who have gotten us here. (The Patient Advocate can supply them with a list.) They can immediately fund treatment trials. They can even do their little confirmation trial if it makes them feel happy. The time is now to move. Until the NIH comes up with a load of dough, this organization will be without any credibility.

So this conference goes on into its second day. Andrea Whittemore states that, "things will finally be put to rest during Dr. Ruschetti's talk on CFS". Having seen Dr. Ruschetti in action, the PA believes what Andrea says. Mikovits will give her talk and then, during the question period, smack NIH questions out of the ballpark. The Patient Advocate has seen it.

At the end of the day, the question will be, did the NIH learn anything? For the past two days, 200 new-fangled scientists have been sitting in a conference room trying to get up to speed. Did anything happen? Will they be able to get on board, or are they going to continue to dawdle?. Things are now moving at exponential speed. The NIH needs to wake up. It is not too late. If it didn't happen today, it will never happen.

The NIH added this CFS section at near to the last minute. Input was invited from those who know the most about this illness - the WPI, Dr. Brewer, Dr. Cheney, Dr. Bell, Dr. Peterson, and Dr. de Meirleir. A consortium needs to be funded around these clinicians, and NIH funded treatment trials begun. The framework is there. This is going to happen, either with or without the NIH. It's their choice - but please - if you don't want to help - get out of the way.

(All I can say after watching this supposed panel discussions taking questions from a partially differentiated, partially "semi-intelligent" group of scientists, is - thank God for the WPI. Over the years, the Patient Advocate has seen some pathetic question and answer sections, at conferences and in academia. This was the worst. There was one sharp question (from an oncologist). The general level of ignorance of these folks was astonishing. (ME/CFS questioners are excluded from this criticism.)


14 comments:

  1. Thank you for your input- well done. Now I to get out if this big mess?

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  2. Smashing good blog and I totally agree with you - the WPI rocks and with friends like Coffin, who needs enemies?

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  3. Thank you for posting your observations and opinions on your blog. I may not agree with all of them sometimes but appreciate your perspective.
    The Q&A today was so controlled except for Mikovits and Coffin I would have turned it off. I found it a bit odd to have Dr. Stoye of the UK as moderator and was offended by the way he commandeered the microphone from Mikovits. He acted like a big bullying idiot!

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  4. Indeed it was a dissapointing Q&A, also dissapointing the fact that no more positives studies came out, I was counting of Sweeden at least... a bit frustrating.

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  5. great blog - we CFS sufferers are grateful to have you in our corner.

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  6. PA... You wrote that the reason for the Alter paper delay was so the powers that be could figure out how neutralize or degrade the WPI/CC/NCI position.
    My ME/CFS doctor would agree with you.
    He has told me that some government agencies (1) view WPI as patient biased; (2) are jealous of WPI's discoveries; (3) are embarrassed by being scooped by a small, private institution; and (4) are also embarrassed at being proven wrong after years of promoting this disease as being psychosomatic. He also said a lot of money was on the line, which makes it likely that things won't be "fair." He believes that if these agencies can't prove WPI wrong, they will simply try to sweep them aside. Which brings us back to your conclusion above, that NIH is trying to wrestle control of this disease away from the very discoverers of it. Disgusting, indeed.

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  7. Thank you, P A, for your thoughts on all of this. Can you suggest anything that the patient community can do at this point to influence funding? Based on limited energy, we need to focus efforts to have the most impact. There are many of us so disappointed today - we just need some direction to mobilize.

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  8. Anon 9/8 8:34 p.m. - Some government agencies view WPI as "patient biased"? Good god, what does that even mean? Should they be anti-patient?

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  9. You are right the 2nd most important day & has lifted hopes here in the uk & we have witnessed a little flurry of media attention from it but not much. Radio & news programmes were reporting on it & even a fellow sufferer got interviewed on the itv news but still not a whisper about xmrv/mlvs. We live in hope. I am grateful for your blog which as always confirms my feelings about the mess we're in but leaves me with sone hope for better days.

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  10. Thank you, Patient Advocate. Once more you are the voice of reason. I think WPI is our only hope.

    Patricia Carter

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  11. Are you on FAcebook?

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  12. here's the link to the transcription:

    http://www.facebook.com/profile.php?id=100001414823530&v=wall#!/note.php?note_id=438284026796&id=216740433250&ref=mf

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  13. I just wanted to thank the Patient Advocate for his insightful blogs, very perceptive.

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  14. Thank you, PA, for your commitment, clarity, wisdom, and most of all, for calling it as you see it. I wish you could hear me laugh as I read your blog, see my tired arms come off the bed, and hear me say, "Yes!" as if a tight end had just scored an amazing touchdown.

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