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!
In Brief: The Adrenal Glands and ME
The second in a new series of ‘In Brief’ articles, where Andrew Gladman provides a helpful insight into the science behind fairly common topics, exploring how they relate to ME/CFS. This time he discusses the adrenal glands and why they can be such a talking point ...
Discuss the article on the Forums.

Already in a study, but no results. Shall I get VIPdx test if I can?

Discussion in 'XMRV Testing, Treatment and Transmission' started by illsince1977, Aug 24, 2010.

  1. illsince1977

    illsince1977 A shadow of my former self

    Messages:
    356
    Likes:
    21
    I am having a dilemma about getting tested for XMRV/MLVs.
    My blood was drawn in November for a study at WPI. This study was done through my doctors practice.

    My doctor sent a cohort of patient samples to WPI to be part of a study after publication of the original Science paper. My blood was drawn in November 2009. WPI is going to process the entire cohort as a batch and they do not know to whom each sample belongs, but my doctor does, of course.

    Apparently a large part of the delay in processing these samples has been caused by the necessity of proving there was no contamination in the lab of the samples in the original paper thank you, again CDC! But I am still waiting for results. The doctor and study coordinator at his office keep telling me there is no hurry and the testing they do as part of the study will be so much more thorough and resource consuming than anything I can get through a commercial lab so I should wait They are also not going to initiate treatment anyway, so just sit tight something I find discouraging and a bit infuriating since Im totally bedridden at this point. I have emailed WPIs clinical trials email address to try to get more information on what their timeline for processing these samples may be, and if I should order the test from VIPdx or not. They have not responded. I called the phone number for their admin offices on the website, which was the only one I could find, but there is no answer. I called VIPdx this morning and their recorded message says they are not sending serology test kits at this time. My understanding is if you are positive via serology, Mikovits considers you positive and stops testing. Do I have that right? If so, they may already know that many in the cohort are positive without expending a great deal of their resources, but we wont know because they are not going to give the doctor results until the whole batch is done. The study coordinator already knows she is positive. She works there and they are not treating her. But then again she manages working though very part time, and perhaps I have less to lose because Im already bedridden.

    Im being thwarted everywhere I turn. I didnt push being tested until late July because I thought I already was being tested. I talked to my doc then and he deflected me then with the arguments Ive already reiterated above. I feel that without a positive test I cant push them into prescribing ARVs for me, which I feel Im a good candidate for. WPI seems unreachable via email or phone. VIPdx is not answering their phone either, but a recorded message says they are not sending serology kits at this time, even though I thought someone on PR said they were yesterday.

    I would appreciate your input and hearing of your experiences.

    -Susan
  2. InvertedTree

    InvertedTree Senior Member

    Messages:
    157
    Likes:
    5
    Hi Susan-

    I'm in the same boat as you. I could have written this post myself! We must have gotten into the same study at the same doctor's office. I can't believe its been almost 10 months since we were tested and they told us it would only be a couple months at the most to get the results.. I saw awhile ago on facebook that some guy who is an attorney has gotten involved. I guess he is gathering info about this and will be filing some sort of complaint. I can't find the posting now but it was on WPI's page.

    I too have been unable to get any sort of response from emails, phone calls to WPI.

    I also tried talking to my doctor (the one who is head of the study) and got nowhere. All he said was it seems that the WPI stopped doing the testing once they realized they weren't getting the results they wanted. The lawyer on facebook said that WPI told him there wasn't even a study done! Yet here we are all 180 of us still waiting for results from last October.

    I too am trying to find out what my result is so I can take them to a doc and get on ARV's. It feels unfair that we have waited this long especially when it seems things are finally happening!

    What makes it worse is that we all paid money to be tested. It wasn't a lot but according to WPi we never should have paid a thing. I believe the WPI and find this doctor's office to be getting increasingly flaky.

    If you find anything out let me know and I'll do likewise.

    -L
  3. illsince1977

    illsince1977 A shadow of my former self

    Messages:
    356
    Likes:
    21
    If it is the same doctor, then we need to organize and put pressure on them and WPI. Your post, yesterday's publication of the Lo/Alter study and VIPdx saying on their phone message that they are not sending out serology kits at this time makes me wonder if not only the doctor, but WPIs methods and the validity of the test might not be in question at this point.

    It all sounds flaky to me. This practice of doctors has prescribed medications based on scantier evidence of disease in the past and now they're being conservative? It doesn't make sense. I have been trying to give everyone the benefit of the doubt, ...but... It doesn't feel like they're fighting for us. Guess we have to take care of ourselves, but that's nothing new.
  4. InvertedTree

    InvertedTree Senior Member

    Messages:
    157
    Likes:
    5
    It is the same doctor's office. I agree that something isn't right. I also agree 100% that they've prescribed off-label medications with scantier evidence than this so it makes no sense that they won't try prescribing ARV's especially since there are large numbers of people wanting to take ARV's.

    It seems that something has changed there because I as well as a couple other patients (who have since left this office and found other doctor's to work with) have the same feeling-that they aren't fighting for us. I'll send you a PM.
  5. taniaaust1

    taniaaust1 Senior Member

    Messages:
    7,474
    Likes:
    4,232
    Sth Australia
    Maybe they dont see it as a rush due to right now all the treatment of it is experiemental and those drugs are very hard core to be experiementing with. So even if you get a postive, they still may not want to just go prescribing these drugs all over the place (unless they had things organised to do a study with them).

    It must be hard on the WPI trying to do all they are currently doing, with desperate patients on their back.

    They may of possibly stopped sending out test kits seeing they are part of a group (FDA, CDC etc) trying to get a properly agreed medically recognised by all one... if i was them, i'd have things on a hold if that was about to occur. That should be on the way.
    .....

    Is it normal to pay to be part of a study?? All the studies ive been in have PAID ME!! or given me the tests free. Ive had SPECT scans, MRIs and all kinds of things free due to being in studies.
  6. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

    Messages:
    3,885
    Likes:
    756
    Concord, NH
    I had my blood drawn 2 weeks ago as part of a study, but they have still not found it! I am rather functional, not bedbound, and trying to avoid that by all means!
  7. Lanya

    Lanya

    Messages:
    5
    Likes:
    0
    San Francisco Bay Area
    I'm in this same study, and I hear this week from the practice that the results from the WPI are imminent and that an ARV trial is also in the works. Whether to believe that, I don't know. I guess the proof will be in the pudding.

    Until the PNAS paper, I think it would have been hard to push forward with ARVs, not impossible though on a case by case basis. Giving off label ARVs is of a different category than treating with say, valtrex or doxy or supplements of various kinds.

    I would also like to hear any news anyone has, or if anyone gets their results back from this No. California study.
  8. Forebearance

    Forebearance Senior Member

    Messages:
    361
    Likes:
    99
    Great Plains, US
    Could you be a little bit more specific about which study this is?
    I did get my results back from Dr. Gordon's study. But i didn't pay to be in it.
    So I'm guessing your study must be a different one.
  9. illsince1977

    illsince1977 A shadow of my former self

    Messages:
    356
    Likes:
    21
    Apparently there was a first group of 20 patients who got their results a while back. Then a second group of which I am part. I have no idea how many people are in the second group.

    Forbearance, what were your results? Are you XMRV positive?
  10. Lanya

    Lanya

    Messages:
    5
    Likes:
    0
    San Francisco Bay Area
    Dr. G's study has about 200 people in it total, a mix of CFS patients and healthy controls. As I understand it, most of us are still waiting for results from WPI.
  11. Doogle

    Doogle Senior Member

    Messages:
    196
    Likes:
    28
    I talked with VIPdx Tuesday and they said they are accepting serology tests but that they are so swamped they haven't changed their phone message. My blood using their kit for PCR and serology testing was shipped to them Wednesday.


  12. Forebearance

    Forebearance Senior Member

    Messages:
    361
    Likes:
    99
    Great Plains, US
    I was one of the last people to be included in Dr. G's study. I sent in my blood sample in late March or early April. I was told that VIP stuck all the samples from the study in a freezer as they arrived, and then sent them all at once over to WPI at some point. So if this is the study you are talking about, maybe it was just random luck that I got my results back already.

    My results were "slightly positive by serology (antibodies)".
    As I wrote elsewhere, I can think of three things this might mean:
    I only have a few XMRV viruses in my body.
    Or my body isn't fighting back very hard against the XMRV viruses it has.
    Or they still need a more accurate test for XMRV.
  13. Daffodil

    Daffodil Senior Member

    Messages:
    2,654
    Likes:
    637
    slightly positive? thats so weird! either you've been exposed or you havent..i dont get that.
  14. illsince1977

    illsince1977 A shadow of my former self

    Messages:
    356
    Likes:
    21
    I got my results yesterday and am XMRV positive by culture.
  15. Forebearance

    Forebearance Senior Member

    Messages:
    361
    Likes:
    99
    Great Plains, US
    Hey Susan, I'm so happy you got your results! Finally, huh?
    Are you glad to know you're positive?
  16. illsince1977

    illsince1977 A shadow of my former self

    Messages:
    356
    Likes:
    21
    Thank you Forebearance. I am beyond thrilled and apprehensive all at once. I'm sure all of you understand, as no one else can! What a fantastic thing this community is!

    I feel spurred to action and at the same time afraid that either treatment will not be forthcoming or will not work. I'm sure you have all had the same thoughts!

    However, possibly having 33 years of life destroying illness explained would be a revelation, wouldn't it?

    The dilemma is even I can't be certain it will have been explained until treatment conquers it! In the meantime I am borrowing and donning the mantle of Judy Mikovits et al, Doctors Lo and Alter et al, Jamie and Ali Deckoff-Jones, and my darling Ken's certainty. If Ken hadn't believed in mine being a physical illness instead of the psychogenic one that my whole family and I had been pushed into accepting, then I wouldn't be at this juncture now. If all the researchers weren't so confident, I couldn't be either. If Jamie hadn't blazed the treatment trail I wouldn't feel I had any options or any confidence that XMRV might be causal or curable.

    All of you have given me courage, too. I would never have believed in there being any hope for a cure for this if I hadn't derived some modicum of certainty in the possibility of there being a possible common etiology or even multiple common etiologies (there's that uncertainty creeping in again!) because our experiences/symptoms are so similar.

    When it comes right down to it, we have probably all had our confidence in our own ability to know ourselves battered by an indifferent or downright malevolent medical community. I know when I was first ill I knew I was suffering from an infection. I was thrown off that trail because doctors believed more in their tests than in my word, and I could not point to a viral onset. I just thought that since I was pregnant at the time that for some reason being pregnant was just overwhelming and had somehow damaged me! Now that line of reasoning seems unforgiveably idiotic - and yet, I must forgive myself!

    Now I wonder if the lowered immunity of pregnancy was the insult to my immune system that allowed XMRV to take hold. Perhaps it's all useless speculation on my part since I'll never know for sure, but surely all of you must wonder all the time, as well. How can you help but wonder what caused an all consuming illness?

    Goodness, the test results have certainly gotten the writing juices flowing. I hope I put the inspiration to good use. Thank you all for listening.
  17. xrayspex

    xrayspex Senior Member

    Messages:
    659
    Likes:
    70
    u.s.a.
    Susan, I think I know how you feel, I finally got my culture results back last week after 2 months waiting (sent in individually no study) xmrv+
    at first I was super excited felt like I had an answer
    but now I am a bit deflated as one of my pcdocs seemed unimpressed and sent me a cbt/exercise dutch study that worked for fms the next day
    I am still glad to know but wondering what it means for treatment, tired of paying out of pocket
    Please keep posted on what you decide to do
  18. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

    Messages:
    3,885
    Likes:
    756
    Concord, NH
    Time to find a new Dr! Wow, what an idiot CBT can be helpful, but exercise? WTF!
  19. xrayspex

    xrayspex Senior Member

    Messages:
    659
    Likes:
    70
    u.s.a.
    ggingues lmao
    talk about a buzzkill and going in a different conceptual direction SIGH I tried all that junk in the 90s been there done that nope not crazy, NEXT
    thang is, I need him now for one script and one sign off.......
  20. aquariusgirl

    aquariusgirl Senior Member

    Messages:
    942
    Likes:
    91
    will insurance reimburse us for the cost of these VIPdx tests even at out of network rates?

See more popular forum discussions.

Share This Page