1. Patients launch a $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
California Conference Season 2014: Stanford Presents - Advances in Clinical Care and Translation...
The 2014 conference season began yesterday at Stanford, home of Dr. Jose Montoya and his team, and searcher was there to provide a live commentary on the presentations from an all-star line-up of clinicians and scientists and which featured some exciting new developments on the...
Discuss the article on the Forums.

XMRV-positive Doctor Begs Us to Fight for WPI

Discussion in 'XMRV Testing, Treatment and Transmission' started by Advocate, Apr 24, 2010.

  1. Advocate

    Advocate Senior Member

    Messages:
    506
    Likes:
    14
    U.S.A.
    I am a 56 year old physician with ME/CFS/atypical MS. I have a daughter with ME/CFS/Lyme Disease.

    I was an emergency physician. After I got sick, I recovered enough to have a private practice. I treated brain injury with neurofeedback and HBOT.

    In that context, I treated patients with Lyme/CFS/ASD/PTSD/mood disorders. I am also well versed in complementary, alternative, integrative, functional medicines and bioidentical hormone replacement.

    When I read the paper in Science about XMRV being highly associated with CFS, it was apparent to me as a physician and a patient that this was it.

    When I realized that the virus is sensitive in vitro to existing safe HIV drugs, I thought and still think that it is a miracle. In fact, I am stunned by the sudden overabundance of caution in the treating physicians

    It would seem that nobody wants to try it. Despite being given the key. Never mind that we are a patient population that has been experimented on for decades.

    Frankly, I didnt see what I had to lose. We are culture positive at VIP Dx. We have tried everything to no avail.

    So with the assistance of a wise, compassionate friend who is an ID doc, and a smart family practitioner, I started AZT 300mg on March 4 and Isentress 400mg on March 11, both twice a day.

    It was my intention to wait for some sort of confirmatory data before reporting anything publicly. But watching all that isnt happening with respect to figuring out how to help the patients, I dont think that anything should depend on how a few patients do, especially a patient like me who may have been infected for as many as 40 years.

    I dont think it is wise to wait while scientists argue about the validity of lab tests. There are too many who need help emergently.

    HAART is a safe existing protocol for AIDS which includes three drugs which inhibit XMRV in vitro. We even know that the three possible combinations of those drugs are each synergistic in vitro.

    But, the sickest will die while the scientists try to figure it out, so it seems to me that it is up to the doctors to treat with the information available. As always.

    I believe that there is a rationale for treating the sickest patients now. Physicians are allowed to prescribe drugs off-label. I think they should be testing their patients, at VIP Dx, the only commercial lab right now that seems to be able to find XMRV in peripheral blood, using the methods validated in the Science paper.

    I would be happy to share with any physician willing to consider treating.

    I certainly dont expect that it will be as easy as taking a few pills. There is lots of downstream damage that will need to be treated. But treating all of the problems that have been identified over the years in this patient population will likely be more effective for many more patients than it has been in the past.

    We will finally be able to identify the commonalities and differences in the various neuroimmune cohorts. Always treat the causative agent if you can. Then modify the host environment to the best of your ability so that whatever is left functions at its highest possible level.

    In my opinion, too many of our physicians have gotten caught up in their own ideas and lost track of the goal, which is to get the patients well. As a group, doctors and patients alike, we must support a willingness for the truth to come out, whatever that is. New discoveries have to be incorporated into our thinking as they occur.

    I thought that it would be OK to sit back and let the dust settle. Whenever momentous discovery happens in medicine, there is a flurry of resistance from those who have been made wrong.

    But this is uglier than that. Now the WPI is in need of funding. Connect the dots. And the band is playing on while we go down

    I am no activist. I am politically naive. But I know the power of the internet. I know how marginalized we have been as patients.

    The people at the WPI are our friends. They are fighting for us, when no one has. As a community, we are often too sick to fight. So we have to let others slay the dragons for us. We have to support them in any way we can. Read: SEND AS MUCH MONEY TO THE WPI AS YOU CAN AFFORD. Please tell everyone you know. Pull out all the stops.

    Sincerely,
    Jamie Deckoff-Jones MD
    Santa Fe, NM
  2. Advocate

    Advocate Senior Member

    Messages:
    506
    Likes:
    14
    U.S.A.
    XMRV-Positive Doctor Believes Other Doctors Should Consider Treatment NOW

    I posted the above message from Dr. Jamie Deckoff-Jones with her permission. She wrote, "Please post anywhere you want with my name."

    I added more line spaces to her message to make it easier for the reading-challenged people on this forum to read. Send me a PM if you want her original paragraphing.

    Dr. Deckoff-Jones is not affiliated with the WPI, but she told me that the WPI needs funds desperately.

    Advocate
  3. julius

    julius Watchoo lookin' at?

    Messages:
    785
    Likes:
    5
    Canada
    Thanks Advocate, that's a good letter.

    Do you happen to know how she is doing on the medications?
  4. Gerwyn

    Gerwyn Guest

    i hate to say this but giving haart to someone with mito dysfunction would probably be lethal or produce irrepreable damage. in vitro is not in vivo
  5. Robyn

    Robyn *****

    Messages:
    180
    Likes:
    0
    xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
  6. omerbasket

    omerbasket Senior Member

    Messages:
    510
    Likes:
    13
    I absolutely agree with 100% of what Dr. Deckoff-Jones said. I don't think that doctors should prescribe antiretrovirals to everyone with ME/CFS right now, but I do think that they should. at least with a positive XMRV test, prescribe it to people who are severely ill. They will either lose their life, or a good chunk of their life, if the doctors would wait until all the science is done.

    Now, for the donation part: Personaly, I would like to donate, but I don't have an international credit card - So I would like to get one if I seee that my donation can do something.

    I THINK THAT WE CAN DO A JOINT EFFORT IN ORDER TO GET MANY ME/CFS AND OTHER NEUROIMMUNE PATIENTS TO DONATE, LET'S SAY, 30$. PERHAPS WE CAN SEND EMAILS, GO INTO FORUMS ON THE INTERNET, ETC. WHAT THE WPI IS DOING IS AMAZING, BUT WE SHOULD TRY AND HELP THEM - AND OFFCOURSE HELPING THEM IS HELPING OURSELVES - IN ORDER FOR THEM TO SUCCEED. What do you people say? Can we, from this forum, make a difference by causing enough people to donate? Let's say we get, and I know it's many, but let's say 10 thousand people to donate 30$, we donated 300,000$, which is nice, I think.
  7. vdt33

    vdt33

    Messages:
    83
    Likes:
    6
    Texas
    I just made a donation to WIP. I was so inspired by your letter. I am sorry that you and your daughter are suffering from this terrible disease.

    I agree with you. It may be many years before enough research gets done to provide us with treatments. I am almost 66 years old, and I don't have 5 or 10 years to wait. So as usual, I am going to have to be my own doctor and figure out what I need to do. I've been doing it for 30 years and it's kept me alive so far. There are no suitable doctors where I live, unless some are staying under the radar where I can't find them. The doctors I have seen have done me more harm than good, with a couple of exceptions.

    Do you have a private practice now? If so, do you treat ME/CFS/Lyme disease?. Back Channel me.

    Best wishes for better health to you and your daughter,

    vdt
  8. Kati

    Kati Patient in training

    Messages:
    1,718
    Likes:
    673
    I would encourage this physician to use her strings and write letters to congress, NIH, and whoever delivers research money.
    Education to other physicians about XMRV and CFS sometimes can only be done by other physicians, unfortunately. She has the "bonus" to experience the disease herself.
    We as patients can help them (WPI) help us, however the governments have access to much more money than we do after being sick and poor for many years: annual budget for AIDS and HIV is counted in BILLIONS.

    After 30 years of ignorance, insults and mistreatments, that's the least that the governments can do- don't you think?
  9. Advocate

    Advocate Senior Member

    Messages:
    506
    Likes:
    14
    U.S.A.
    Hi Julius,

    She wrote me that she is not ready to say anything publicly about how she is doing without numbers or something she can quantify.

    Advocate
  10. Advocate

    Advocate Senior Member

    Messages:
    506
    Likes:
    14
    U.S.A.
    I apologize for not prefacing the letter from Dr. Deckoff-Jones with a note from myself. It was confusing the way I did it.

    I will let her know that you made a donation in response to her letter, and I'll send her your email so she can answer your question about private practice if she wants to.

    Advocate
  11. vdt33

    vdt33

    Messages:
    83
    Likes:
    6
    Texas
    Thanks, Advocate!

    vdt
  12. serenity

    serenity Senior Member

    Messages:
    571
    Likes:
    3
    Austin
    i also made my donation to the WPI yesterday, $50 - bout all i can swing for now but i hope it helps :)
  13. Frickly

    Frickly Senior Member

    Messages:
    1,046
    Likes:
    34
    Texas
    I am upping my monthly donation tomorrow. This is soooo important. Please, everyone that can, give all that you can.
  14. Cloud

    Cloud Guest


    Me too, last year before xmrv.....didn't hear back.....maybe now with xmrv and more letters????
  15. fairlight

    fairlight

    Messages:
    77
    Likes:
    0
    Advocate-I think you can edit your first post so that it isn't so confusing? Thanks for posting this for us.
  16. citybug

    citybug Senior Member

    Messages:
    519
    Likes:
    36
    NY
    The doctor's letter would be excellent testimony for CFSAC.
    From the other post in advocacy:
    Members of the public wanting to submit written testimony to CFSAC members at the meeting, should, at a minimum, submit one copy of their material to the Executive Secretary at cfsac@hhs.gov, prior to close of business on Monday, April 26, 2010. Submissions should be no more than five (5) pages.

    I think the old fashioned email chain letter could help us. If 500,000 people gave $2 there would be a million. With 35% of lyme, autism and atypical MS in early studies, this may affect so many people.
  17. Megan

    Megan Senior Member

    Messages:
    230
    Likes:
    13
    Australia
    This thread is damaging to the WPI and us

    I applaude any call to help the WPI as they are really fighting for us. But the way I see it this call for for the use of anti retroviral drugs will only hurt the WPI (and us) much more than any of the donations from this thread will help.

    Make no mistake advocating the use of retrovirals by patients, and more importantly the pushing of them by doctors, is being and will be used against the WPI (rightly or wrongly). The WPI and the leading CFS doctors in the US and elsewhere have unanimously said we should NOT be trying anti retrovirals at this stage. The UK group have already misrepresented this situation publicly to justify their own actions. I have also heard the WPI run down to me by a very senior player in this game on the basis that the 'patients will want to take AZT'. We are simply feeding ammunition to our opposition. Like it or not this is political and whatever we post here can easily be misused against us. Dr. Deckoff-Jones obviously means well but is right when says she is polically naive.

    I do see that Dr. Deckoff-Jones is heartfelt and raises some legitimate questions regarding treatment. But surely it would be better if she advanced these arguments within her professional arena rather than advocating them on patient forums.

    I understand that some patients may feel desperate enough to try experimental drugs and that is their perogative. This is the lot of people with untreatable illnesses, not just cfs. But no need to plaster it all over the net and advertise/advocate it to others when we are not medically trained.

    I find the other thread we have going on this forum also disturbing for the above reasons. The WPI can use all the help they can get, not extra curve balls accidentally thrown by us.
  18. Emma_Lee

    Emma_Lee

    Messages:
    2
    Likes:
    0
    @ Megan. I'm sort of with you here. In the UK we have the problem that the research is not being taken seriously because leading members of our CFS/ME expert panel are going around discrediting the WPI. One of the ways that they did this was to make the WPI sound irresponsible by saying that they had immediately recommended the use of anti-retroviral drugs. Now I know this isn't true, but a lot of people don't.

    However, as long as it is made clear that the doctor writing this letter is not affiliated with the WPI, then perhaps it is important that some physicians speak out and say this. Clearly, if it is a choice between dying and a chance of survival then drugs should be tried. There is no sense of urgency about this disease, that's what gets me the most sometimes. Doctors think it is ok to let people get on with it because they don't think there is a chance of loss of life. Maybe if we have some examples of people improving on AZT then a precedent might be set for when more research does appear.
  19. Jerry S

    Jerry S Senior Member

    Messages:
    422
    Likes:
    10
    Chicago
    Good points, Megan. I love your avatar!

    Jerry
  20. Megan

    Megan Senior Member

    Messages:
    230
    Likes:
    13
    Australia
    Emma_Lee,

    I personally think it is a choice between doctor and patient what they want to try or don't provided they are informed, as you say our lives are going by while science moves on at snails pace (not just the lot of cfs patients). But I don't think the doctor concerned not being affiliated with the WPI makes any difference. In the two examples I quoted the WPI was not accused directly but by implication because they widely publicised their results. Subtelties like this simply don't get absorbed in media stories or by those within the industry who don't have time to get accross the full facts (or who wish to misuse them). None of this is necessarily logical or fair to those involved, but doesn't matter if it gets used against us. As I said this doctor could be advocating within the professional arena rather than in patient forums. And given that very few people have access to validated tests this is very premature.

    Perhaps it would be helpful if we did have examples of people improving on AZT, but neither of the examples we have here are doing that to any significant degree. In one the person has tested negative to XMRV and is taking the drugs (and I understand her reasons for doing so). In the other there appear to be no results at all. I just can't believe that the internet advertising either case can be helpful to anyone except Wessley & Co. Aside from the fact that we don't know if it could be harmful to patients. I realise none of this is intentional on the part of those involved.

    I am sorry if I have offended anyone here, but I feel strongly about this. It is essential at this point that any connection between CFS/XMRV is adequately scientifically investigated and it is exactly this sort of stuff that is being used to try and shut this science down. I know it seems extreme but I feel these this thread should be shut down for this reason.

See more popular forum discussions.

Share This Page