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Dr. Lapp’s News Re: New XMRV Study, ME/CFS Blood & Tissue Bank, Ampligen® Study

  [ 33 votes ]   [ 7 Comments ]
www.ProHealth.com • March 31, 2010


Topics covered in Dr. Charles Lapp’s March 30 Hunter-Hopkins Center Newsletter include the following three activities important to the ME/CFS & FM community. (To receive this and future HHC e-newsletters, send an email with NEWSLETTER SUBSCRIPTION in the subject line to drlapp@drlapp.net.)

1. Replication Study of Whittemore-Peterson XMRV Findings
“Glaxo Smith Kline, a pharmaceutical firm in Research Triangle Park, NC, has funded a new study that will evaluate CFS patients with characteristics similar to the Science paper. CFS patients known to have XMRV from the Science paper will be used as a positive control. This study is designed to estimate the prevalence of XMRV in CFS subjects (selected by the modified Fukuda criteria and the Canadian criteria) and healthy control subjects.
 
“Ethics board approval is pending, but we expect this study to begin shortly. GSK will obtain specimens for this study from [patients diagnosed by] Hunter-Hopkins Center (Charlotte, NC) as well as Drs. Klimas (Miami), Bateman (Salt Lake) and Gluckman (Philadelphia) in order to sample subjects from diverse geographic locations. Samples will be provided anonymously by the new SolveCFS BioBank, recently funded by the CFIDS Association…”

2. Solve CFS BioBank to Collect and Store Blood & Tissue Samples
“The SolveCFS BioBank will collect and store* a bank of biological samples (such as blood, tissue, cell, and DNA) and clinical information from individuals with CFS and healthy individuals (controls). Subjects must be aged 10 and older, from the U.S. and other countries. Specimens will be stored indefinitely at the Genetic Alliance BioBank laboratory in Washington DC. This ensures that individual privacy and confidentiality are protected and that samples are available to researchers whose research projects have been reviewed and approved by the CFIDS Association of America Medical Research Advisory Committee. Currently the SolveCFS BioBank [will collect specimens only from patients diagnosed/referred by] Hunter-Hopkins Center and three other sources (Drs. Klimas, Gluckman and Bateman) to insure that the proper diagnostic criteria have been applied, and thereby assure a heterogeneous study population.”

[* Note: The CFIDS Assoc., likely inundated by inquiries, comments: "there has been tremendous enthusiasm about the opportunity to participate in this type of ground-breaking research. However, until all the required institutional approvals are obtained by all parties required to initiate BioBank-based studies, the CFIDS Association of America is not able to share information or comment on reports initiated by others about studies being planned...." In the interim they suggest interested parties refer to their updated eligibility criteria - see "BioBank Study Requirements, current as of April 1."]

3. Ampligen® Study Still Recruiting (Patients Cover Their Costs)
“Hunter-Hopkins Center is one of two sites in the USA currently participating in an open label study of Ampligen. Persons with CFS may qualify to receive Ampligen therapy. Details are available on the US government Clinical Trials website (ID NCT00215813). The Hunter-Hopkins program is described at www.drlapp.net/ampligen.htm. If you are interested in joining the Ampligen Study or you have more questions, contact Wendy Fallick (Research Coordinator) or Dr. Black at Hunter-Hopkins."

Back issues of Dr. Lapp's Hunter-Hopkins newsletters are archived at www.drlapp.net/news.htm.




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Article Comments Post a Comment

Chronic Fatigue Syndrome Research
Posted by: kevb
Mar 31, 2010
I'd say to the likes of Galoxo Smith Kline maybe they should be in touch with the Bond University in Australia (Associate Professor Donald Staines and Associate Professor Sonja Marshal) Seriously considering investing some of their research $$$$ after investigating the merits of their Theory on this rotten disease and potentially others being caused buy recently discovered "Vasoactive Neuropeptides" Dondald Staines has written a book on his theory of which research into this has just begun at the Bond University in Queensland Australia. The book is titled "Chronic Fatigue Syndrome and vasoactive neuropeptide autoimmunity" not sure where it can be purchased, I have been lucky enough to have received a copy free as I'm taking part in this research (Suffer)I must say after 3 years of suffering I must it's the only convincing theory I've been able to accept, unfortunately I don't hold much hope in the XMRV theory but I suppose I'll have to wait and see. Check out the small amounts of info on the net under this heading but the book is much more in depth I've read it 3 times now. Cheers
Reply Reply

XMRV could fit Staines theory
Posted by: renehicks
Apr 1, 2010
Do you not think that the XMRV could be one of those viruses that can fit in with the Stains theoryT 'the autoimmune hypothesis of VNs suggests that relatively minor infection or inflammation results in predictable pro-inflammatory cytokine and other responses which may have subsequent serious effects involving VN dysfunction' If its a slow replicating virus then it could well be causing this minor inflamation.
Reply Reply

re bond study
Posted by: moonchild
Apr 2, 2010
i'm familiar with the bond uni study that you refer to, however i see no reason why both pieces of research cannot be potentially important parts of the same puzzle. (from my understanding of marshall and staines' work they believe that it is the subsequent effects on the body rather than the cause that is more important - to simplify things greatly.)
Reply Reply

 
Fumbling in the dark
Posted by: richard m
Apr 6, 2010
No one has a clue what causes chronic fatigue syndrome - we're all screwed. There's no coming back from this one. At best, it will be another 30 years until they have something to treat this illness, until they really get down and do the science - starting with Dr Gow's work on gene mapping and then pinpointing the diseases pathogenesis. At the moment there is nothing that helps this illness whatsoever! I'd rather I was a paraplegic with gout and depression than be living with this illness. And don't tell me there's hope, because there isn't unless you can see a tiny flicker of a candle, thirty light years off in the distance: faint, then disappearing, faint then disappearing.

Richard

 


Fumbling in the dark
Posted by: richard m
Apr 6, 2010
No one has a clue what causes chronic fatigue syndrome - we're all screwed. There's no coming back from this one. At best, it will be another 30 years until they have something to treat this illness, until they really get down and do the science - starting with Dr Gow's work on gene mapping and then pinpointing the diseases pathogenesis. At the moment there is nothing that helps this illness whatsoever! I'd rather I was a paraplegic with gout and depression than be living with this illness. And don't tell me there's hope, because there isn't unless you can see a tiny flicker of a candle, thirty light years off in the distance: faint, then disappearing, faint then disappearing. Richard M
Reply Reply

 
Richard's loss of hope
Posted by: wacquiebob
Apr 7, 2010
Richard, I just wanted you to know that I thought like you just 4 months ago. I was suffering great pain as well as all the other symptoms of the disease without any relief in site despite multiple medications/physician visits. Then I decided that I had do something or things were not going to end well. I had my viral titers tested and my EBV and HHV-6 were in the sky, off the charts. I decided that I was going to do Dr. Montoya's protocol. I have been on Valcyte for 4 months. The first 2 weeks I didn't feel any better at all. Then, slowly,the great pain that I had been feeling improved to the point where I could do some things that I hadn't done in several years (like lay in my bed without multiple drugs to put myself in a coma first; and grocery shop). I am not cured by any means, but life is now tolerable when before all I could envision was ending my suffering. I believe this disease has some sort of viral etiology. I don't know if it is XMRV or not, but it is something viral. This is the closest we have had to a real lead and hope for sometime. Please hang in there.

 


Richard's loss of hope, Chance that CFS is viral
Posted by: wacquiebob
Apr 7, 2010
Richard, I just wanted you to know that I thought like you just 4 months ago. I was suffering great pain as well as all the other symptoms of the disease without any relief in site despite multiple medications/physician visits. Then I decided that I had do something or things were not going to end well. I had my viral titers tested and my EBV and HHV-6 were in the sky, off the charts. I decided that I was going to do Dr. Montoya's protocol. I have been on Valcyte for 4 months. The first 2 weeks I didn't feel any better at all. Then, slowly,the great pain that I had been feeling improved to the point where I could do some things that I hadn't done in several years (like lay in my bed without multiple drugs to put myself in a coma first; and grocery shop). I am not cured by any means, but life is now tolerable when before all I could envision was ending my suffering. I believe this disease has some sort of viral etiology. I don't know if it is XMRV or not, but it is something viral. This is the closest thing we have had to a real lead. Please hang in there.
Reply Reply


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