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XMRV - Doctor visit - What can I say about XMRV

Discussion in 'XMRV Testing, Treatment and Transmission' started by Lynn, Jul 15, 2010.

  1. Lynn

    Lynn Senior Member

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    I have a doctor's visit on Monday. My doctor has been my GP for 14 years. He gets CFS and has helped me to try all kinds of things including blood thinners and the Marshall protocol. I like him so much, I drive 4 hours to see him (I moved away about 7 years ago). I mentioned XMRV in my last visit in December and he googled it but there really wasn't anything out there except the Science article.

    I thought I would be able to provide him the link from the XMRV webinar that the CAA put on today. It didn't turn out to be something that would make the case for XMRV. I would like to bring him a concise write up about what XMRV may mean. I also have a test kit for XMRV from VIPdx that I want him to okay.

    Does anyone have a good suggestion about what I should bring (article or hyperlink)? I need something in writing because I cannot rely on my memory.

    Thank you in advance for any help.

    Lynn
     
  2. alex3619

    alex3619 Senior Member

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    Logan, Queensland, Australia
    Hi Lynn

    I would start with the blood products advisory comittee thread:

    http://www.forums.aboutmecfs.org/sh...dvisory-Committee-Meeting-Background-Material

    The summary of the research tells you where it has been, but unfortunately not where it is going. The anticipated Alter and Singh papers could change everything, and who knows what the WPI has in the works?

    There was a discussion on alteration of XMRV rna (inserted DNA?) by APOBEC3 I think I recall, that would make it very hard to find in the blood. That could be one reason why PCR testing of blood often fails.

    Bye
    Alex
     
  3. Lynn

    Lynn Senior Member

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    Thans Alex. The blood products paper is perfect. That way I don't have to cobble things together.

    Lynn
     
  4. katieann

    katieann

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    colorado, US
    I too have an upcoming doctor visit. I have been adding links to a folder specifically intended for my doctor. I wanted her to have access to Dr. Coffin's interview, the blood products working group, as well as the recent Silverman Paper http://www.nature.com/nrurol/journal/v7/n7/abs/nrurol.2010.77.html. I also wanted her to have access to X Rx http://treatingxmrv.blogspot.com/, and these forums. She is an infectious disease specialist, so I wanted to toss to her some publication links:

    http://www.asco.org/ASCOv2/Meetings/Abstracts?&vmview=abst_detail_view&confID=73&abstractID=30543

    http://www.facebook.com/notes/xmrv-...ruscetti-finds-xmrv-in-cfs-patie/330091016796

    and

    http://www.iacfsme.org/Portals/0/pdf/IACFS-Attachment4-April2010.pdf



    a q and a with Dr. Judy. I do not want to pummel her with data, but want her to have access to collegues that are renowned (Coffin and Silverman and Dr. Judy) as well as evidence of immune response and treatments
     
  5. SOC

    SOC Senior Member

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    Thanks for these links, katieann! They look very useful for taking to my PCP tomorrow.
     
  6. Julia Rachel

    Julia Rachel

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    California
    Until there are published studies, I am not sure you can take much to your Doctor right now that would reach the scientific standards he/she measures by. If you want your blood tested, you have every right just to ask the GP to do this and to please sign the order. I've never heard of a Doctor denying a request from a patient to have a certain blood test run. It is our "right" as patients to ask our GP's and MD's for blood tests. This is a great place to "start" when wanting to get all of your tests run for ME/CFS/CFIDS; i.e.: your local MD/GP. It is extremely important to be tested for all Viruses associated with our illness (HHV-6A, EBV and CMV) as well as LYME and piggyback co-infections such as Micoplasma and Chlamydia P. and to be treated for these prior to getting treatment for XMRV. An Anti-retroviral medication will work on the XMRV if you have this, but not the viruses and co-infections....it all needs to get treated individually. http://vlgonvalcyte.wordpress.com/
     
  7. SOC

    SOC Senior Member

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    Based on my recent experience, Julia Rachel is right. My PCP was prepared to sign for XMRV tests when the paperwork arrived, mostly to placate me, I think, or to have a negative test to convince me I was wrong about a retrovirus. Then I showed him theScience abstract and Alter's slide with "We (FDA & NIH) have independently confirmed the Lombardi group findings". Ooops. He freaked out, basically, and "fired" me as a patient, lol! Just as well, I suppose, except that now I have no PCP and no test approval and have to go through the whole mess with a new PCP.

    I'd shoot for getting test approval (assuming you want it) without too much PCP instruction at this point. There will be better information for them in the next few months. Then it will be easier to education them and you will have the test.
     
  8. Lynn

    Lynn Senior Member

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    I guess I am pretty lucky. My GP is in the Davenport, IA area. Louis Katz, the member of the AABB task force that made the recommendation that CFS patients not donate blood is also in Davenport so the CFS blood "ban" story made the local newspapers.

    My GP told me that many of his patients that have a fatiguing illness are already asking about XMRV after reading about it in the newspaper. He was totally open to the possibility that XMRV could be responsible for CFS. I think this will become true for most physicians as the story hits the main stream news.

    Lynn
     

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