Monday, November 7, 2011

Mt Sinai ME/CFS Center - November 20, 2011 conference


A surprising amount of research and treatment into ME/CFS has been generated in the wake of the efforts of the WPI over the last few years. This is especially true of the last few months. Annette Whittemore and Judy Mikovits lit the spark and elevated ME/CFS to a level where it now gets fair consideration.

One of the most exciting pieces of recent news is the opening of an ME/CFS Center at Mount Sinai Hospital in NYC. This center is currently funded by a generous gift from a patient - with the possibility of matching gifts to come. The center is about to open - and the first conference is going to happen in two weeks - on November 2oth.

Mount Sinai is one of the major hospitals in NYC, and it is tremendous news that this center is opening - focusing on this difficult and debilitating illness. This is a dream come true. The last major CFS treatment and research center at an American university was run by Dr. Phillip K. Peterson at Hennepin County Hospital in Minneapolis in the 1990's. It closed, for unknown reasons, in 2000.

The main clinician at the Mount Sinai ME/CFS Center will be Dr. Derek Enlander. Dr. Enlander is a familiar name to all of us, and he is considered to be one of the very top clinicians making inroads into this disease. Dr. Enlander has treated patients with ME/CFS in the NY area since the mid- eighties, and he has always kept an open mind towards treatment modalities. While his clinical experience with ME/CFS is very deep and broad, Dr. Enlander also has a wider medical practice - and has taught at Mt. Sinai for many years. He is the perfect individual to coordinate a larger effort to get at this illness.

Additional senior faculty will be Dr. Ila Singh, who has recently been recruited by Mt. Sinai from Utah, and Dr. Eric Schadt, PhD. Here is an article on Dr. Schadt.

The clinical practice will employ various treatments currently being used by Dr.Enlander, including GcMAF, Ampligen, Hepapressin, and Immunoprop.

Some of the research will delve into genomics, and one current study is underway - and recruiting patients. You will remember that Dr. Enlander was quite close to Dr. Jonathan Kerr and Kerr's work in the UK. Dr. Schadt is well qualified to continue and expand this work. Most of us are familiar with Dr. Ila Singh, and welcome her back to NY.

Treatment research will involve methylation cycle defect, viral effects and correlations, immunology, immune system defects (Ampligen, GcMAF, MAF 314, Nexavir, Hepapressin), and mRNA before and after Post Exertional Malaise.

This enterprise is privately funded and has no connection to the recently announced CFI. We look forward to Dr. Enlander's participation on a larger stage. This is certainly a bit of good news.

And now today comes the announcement of the first conference at the Mount Sinai ME/CFS Research and Treatment Center. This will occur on Sunday November 2oth. Registration will be at 10:30 in the morning with the conference starting at 11. The conference, entitled "New Methods of Diagnoses and Treatment," will feature Dr. Derek Enlander, Dr. Kenny De Meirleir, Dr. David Bell, and Dr. Eric Schadt. Subjects will include treatment summary of GcMAF, MAF 314, Retuximab, CMX 001, Ampligen and Nexavir. This is just the kind of consolidation of clinical experience and allied research that is needed at this exciting time.

Registration $30 in advance, $40 at the door. The conference will be held in the Seminar Room, first floor, Icahn Institute, Mount Sinai Research Building, 1425 Madison Avenue (at 98th st), NYC.


23 comments:

  1. I am very happy to hear about the Mt. Sinai ME/CFS Center, and I am confident that we can expect good research from this group. Thank you for sharing this information, Patient Advocate.

    Patricia Carter

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  2. Isn't this exciting? All these new initiatives looking into ME/CFS! Better late than never, right?

    Although the WPI and Dr. Mikovits were certainly vital and instrumental in bringing new and refreshing initiatives such as the above, which can't be denied, do you think there is going to be valuable work still done there? If so, what kind of work without a senior researcher?

    I'm conflicted: the Chase Community Giving will begin very soon, and if WPI is included in the voting, I think patients need to know just what they will be voting for. It would be nice if these other groups could be included, but are they .orgs that would be eligible? Not Mt. Sinai, I don't think. CFI?

    Would love your opinion.

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  3. This is exciting, but I can't find anything about the new ME/CFS Research and Treatment center on the Mt. Sinai website. Google searches lead to message boards and blog announcements of the same.

    If a patient wanted to make an appointment at some point, how would they even find contact information.

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  4. Once a charity wins with Chase, they are not eligible again. Also, the contests are divided between large charities and small ones.

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  5. Thank you Tina Tidmore. Do you have any ideas for the voting? Any large or small ones we should watch for?

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  6. This sounds promising. Is Dr. Singh specifically part of the ME/CFS group or just moving to Mt. Sinai hospital in general?

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  7. Is the conference open to the public? That is a huge trip for me from where I live in NYC, almost like going to Boston.
    Doubt if I can do it, but hope that some attendees will summarize salient points for those of us with CFIDS who really cannot travel.
    (If I managed to get there by car service as I can't take subways (stairs) or buses (1/2 hour wait), I'd be wiped out by the time I got there, so pointless.)
    Would be so glad if main points were reviews.
    I better catch up, don't even know of some of the specific treatments mentioned in the blog post.

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  8. So what does Enlander think of Singh using clinically unvalidated assays in her paper Shin et al? Or, considering Singh still has patents on XMRV, will they be conducting further research into HGRVs this time even using her actually clinically validated assays?

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  9. The WPI have done harm not only to the patients but also to good decent non profit making charities which people are now questioning funding for fear of the same thing happening.
    Their act has proved to be a very selfish move and makes us wonder where they go from here?
    What is their next move with no one of Dr. Mikovits caliber on board.
    Is it now going to be run as a profit making only institution?

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  10. Chris, thank you for the splendid writeup on the new New York Me/CFS center and the meeting on the 20th November which is open to the public.

    On the subject of Ila Singh's research, we have a large cohort of carefully selected Fukuda/ Canadian Consensus patients. I will make available as many specimens as Ila needs. We make the point, that the careful selection is key, as a number of research projects both past and present are not so selected.
    I have a cordial relationship with Ila and Judy (Mikovits) and look forward to the day when they can collaborate.

    Derek Enlander MD

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  11. And we look forward, Dr. Enlander, to reading about the research projects, and any new light they can shed on our mysterious disease -- in terms of cause, impact on the immunological and other systems and treatment.

    All information that goes toward figuring out this illness is going in an upward curve, even if there are zigs and zags along the way.

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  12. I have severe ME, not CFS. I hope that the distinction between patients like me is kept clear, so that we can benefit from research and treatments. At present, all the data is on patients with CFS. The Nightingale Research Foundation definition, 2011, was presented at the Ottawa CFS conference this October, by Dr Byron Hyde. It is available on the Nightingale site, and is very useful for both practicing doctors and patients as well as researchers.

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  13. I thought that ME is the term, acronym for myalgic encephalomyelitis, which in some countries is the name of the disease which is called Chronic Fatigue Syndrome here.

    And I thought many CFS sufferers here want the named changed to ME.

    I've never heard that it's two different diseases. Lots of people have severe CFS. It's not "fatigue." That would be a pleasure compared to the deep-bone-muscle-joint pain, exhaustion and debilitation many of us with CFS have to live with daily. (It's a big trip to go around the corner for groceries.)

    There is a website called Thoughts About ME, a very well-organized, well-written, thoughtful website. The author's description of what she lives with daily is exactly on target about what I face and endure every day. Exactly.

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  14. Yes, it's open to the public. Here's a link to the announcement: http://www.enlander.com/conference.html

    I heard that it will be videotaped so that those of us unable to travel will be able to see it. I sure hope so.

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  15. Dr Enlander you don't say what you are researching with Singh? For all anyones knows you and Singh may be going over old ground. HHV-6 for instance. If you are looking at HGRVs you must insist clinically validated assays are used or the results cannot be scientifically compared to positive studies.

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  16. Here is a
    http://www.hfme.org/
    link
    easy to read and understand the difference between ME and CFS which the WHO and NIH subscribe to
    also Hyde's 2011 definition of ME states very clearly the difference between the two diseases: link to nightingale research foundation for ME in Canada

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  17. Can someone let us know how to see the videotape of Dr. Enlander's seminar on Nov. 20?
    I went to the website mentioned above, but there was no information on the videotape.
    Will it be simultaneously streamed or will the videotape be available afterwards?
    Please let us know.

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  18. Can somebody please post the link to the Mount Sinai's web where this seminar is announced. I can only find it in Dr. Enlander's web but not in Mount Sinai's web. Why?

    Cristina.

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  19. What a great blog! Thanks for taking on the role of patient advocate. She definitely needed your support and help. Thanks for providing the rest of us with such great information!

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  20. Rumors are rife all over the CFS blogosphere that Dr. Mikovits has been arrested at her home in Ventura County, Calif., for crossing county lines (from Nevada). She is being held in the Ventura County Pre-Trial Detention Facility.
    This is all as a result of the lawsuit being brought against her by the Whittemores and WPI.
    This is terrible. It is not principled. And it does not help the CFS community whatsoever.

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  21. Am exhUsted, so can't say much, but Dr. E. has.really put together a fabulous team of Researchers at Mt. Sinai. It was very exciting..

    Mary

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  22. Please, please, someone, please give us CFS-sufferers a summary when you've recovered from the trip to the seminar.

    We eagerly await the report.

    With the awful news about the arrest, detention and probably extradition of Dr. Judy Mikovits to Nevada, we need some good news.

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