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Let's "adopt a sequence" (with funding) of an XMRV isolate!

Discussion in 'Action Alerts and Advocacy' started by KnightofZERO, Apr 15, 2010.


Is this "adopt a sequence" idea a good one?

  1. Yes this is a capital idea!

    24 vote(s)
  2. No, we should spend our energy for (Make a Thread)

    2 vote(s)
  1. KnightofZERO



    Here is the link to the Cause Page set up on Facebook by XMRV Global Action:
    "Adopt A Sequence."
    This has the advantage of allowing Automatic Monthly Donations.

    A suggestion from Shelley:

    ---Hi Everyone!

    This idea is inspired by a blog post made by gracenote part of which is below:

    "" (I) think this is less about egos, and more about politics and money — research money.

    Dr. Mikovits says they are "attempting to isolate and sequence XMRV from as many people as possible"
    and that it's costly, around $2,500 per isolate.
    She says WPI hasn't been able to get funding: (...)
    "You can get research $$ if you're looking at a prostate cancer patient and XMRV.
    You can get millions of research $$ if you want to look at the immune response to XMRV in monkeys.
    You can get NO research $$ to study XMRV in patients with ME/CFS."

    As you can see it cost about 2,500 dollars as of now to sequence an XMRV isolate.

    What are some Benefits to Sequencing an XMRV Isolate??:

    By understanding the sequence of a genome of an organism in theory very many aspects of that organism can be deduced from the ground up! See Genome .

    (For human genomes, in theory you could answer questions such as why specific organs have the structure and function they do if you knew how to interpret the genome sequence. Obviously for humans this "interpretation" is not anywhere near that far advanced at this point)

    By knowing the genomes of more XMRV isolates someone can gain an understanding of:​

    • Variation of XMRV (how genetically different is the virus from patient to patient). This is a big question that needs to be answered before one can develop standardized treatments.

    • Potential Resistance to Treatment: by knowing the degree of variation a researcher can make deductions about the virus's ability to mutate and resist a given treatment.

    • If a researcher determines the sequence of the virus from the same patient at several different times that researcher will get a sense of how the virus evolves over time in that type of patient (for example maybe a patient with a mutation in the RNAseL pathway). This is important for designing treatment.

    • Sequencing XMRV isolates over time from the same patient provides information on process of infection and pathenogenesis of the virus. Does infection go through several stages? Does it only go through one stage? Is the cell type which is initially most affected the one that remains the most affected?

    • What organs are likely to be affected by the virus. Viruses use receptors on their surface to bind to specific receptors on cell types and this determines what types of human tissue they (can) infect. For instance HIV uses CD4.

    • Is it a causal factor in ME/CFS?: This would seem to a separate issue but they are connected. By knowing what types of tissues a virus is likely to infect, by knowing what cells it is likely to infect, one can check to see if those cells are in fact infected in ME/CFS patients. If the implicated cells & tissues show abnormalities and infection this provides more evidence for causality.

    • As a corollary: by knowing the sequence information a researcher can gain information about the virus's "lifecycle" and make hypotheses about what types of immune responses are most necessary to control the infection. A researcher can then check the status of the impairment of these immune responses in ME/CFS (either by doing new studies or searching the literature).

    • By determining which immune responses are needed to control the infection one can then make hypotheses about how at risk the XMRV infected healthy population (3.7% from Science Study) are likely to develop ME/CFS. Suffice to say some % of this population may be at high risk and determining the sequences of viral isolates will help determine which infected people are at high risk and which are at low risk. This will probably relate to genetic factors in each of these individual's immune responses.

    • Sequence information will help give information on XMRV's virulence (aggressiveness). Are there different types with one being more aggressive or are all the XMRV isolates alike in aggressiveness? (only one type). This will also help determine how "at risk" the healthy population infected with XMRV is (not only for ME/CFS but for any complications from the viral infection generally).

    • How was the virus introduced to the human population? When was it introduced? Was it introduced just once or at multiple times? By analyzing the degree of variability in different XMRV isolates (through sequencing) researchers are able to make gain knowledge that will help in answering these questions.

    Now I'm positive with all the people on the board, we could make this number through donations. So this is a thread for people who have made, or are going to make, a Donation to the Whittemore Peterson Institute.

    Most of us are poor, to say the least. However, if we were to donate only 5-15% of the money we spend on supportive treatments, vitamins and the like per month (whether the donation is one-time or monthly) we could easily get above and beyond $2,500!

    Here is the link:

    Also if you think it is too difficult to donate straight-out consider these options:

    * Google Checkout
    * Ebay Giving Works

    Most allow you to give while doing something else which you would do anyway (Search Engine, Sell on Ebay) Some of these might not work as yet, for example WPI isn't registered as a charity with Ebay as of this post though I submitted it to be registered (though it is on IGIVE).

    As much as possible I'd like to limit posts in this thread to:

    A.) To people posting their donations together with any personal remarks or remarks regarding research:
    I.) Use format:
    (I. Amount you donated/plan to donate)
    (II. Your personal remarks)
    B.) To people with alternative ideas:
    (Please make your own thread but feel free to post in this one directing people to your thread for advocacy/research.)

    If everyone likes this idea-- I can tabulate the total every so often and post it in the thread or on this page.

    Also if there is anyone who is well off and who would like to match everyone in the threads donations (or match half etc.) please PM me and I will update this page with that information.

    Note: The name I usually post under is "Sunnyslumber" I'm using a different name since "Sunnyslumber" really lacks giving any connotation of energetic action ;)
  2. KnightofZERO


    To go first; Monthly I spend about $50 on supplements and vitamins and about $120 on medications. So I donated $18.
  3. Robin

    Robin Guest

    That would be cool if we could fund a whole sequence from this forum! There's often 400+ people here, it's certainly possible. But fundraising is such an uphill battle. :(

    I don't take supplements but I made a small paypal donation, and am going to look into my budget to see where I could maybe do monthly giving.

    ETA Oops!

    I.) $15

    II.) Well, it's not out of my nonexistent supplement budget, but, I guess I can go without the takeout I was going to get tomorrow night. :)
  4. KnightofZERO


    I.) See #2


    Thanks Robin for your reply and for donating! :D I will probably post it on the other large board I know the Prohealth one, so that raises the number of people also. I agree its an uphill battle but think us actually being able to see posts from others showing they donated will encourage us that we aren't acting in a vacuum :Retro smile:
  5. spindrift

    spindrift Plays With Voodoo Dollies

    I.) I donated $20.00

    II.) "adopt a sequence" This is the most unusual thing I have adopted, so far :D

    @ Robin
    The way I take this is we donate the 10% of out monthly supportive treats once not every month.
    KnightofZERO please correct me if I am wrong. But if someone can give every month, great.
  6. Kati

    Kati Patient in training

    Adopt a sequence- Great idea.

    I just gave 20$- In the past I have given donations when webinars were offered on XMRV and ME/CFS as "entrance fee". It's better than going to the theater and get a bad case of PEM and OI.
    I have also given donation for when Dr Judy has answered my e-mails!!! Perhaps others that have e-mailed Judy should consider giving some $ for each e-mails they have recieved?

    I will think of more ideas to adopt a sequence... I wonder which group we could target that would understand what it means... I wonder if Vincent Racaniello would mind advertising for us, would that be a conflict of interest for him?

    Another suggestion, perhaps we could ask Cort to put this in the front page and get a sticky on it so people see it prominently. There could also be an invitation for visitors to give a small donation to use the forum and benefit all of us PWC.
  7. txfriend


    Monthly from all would help...

    I'm giving $25 monthly with a credit card thru the XMRV Action Network. I am also getting a little money from the recent sale of a tiny rental home; I managed the property, getting half the proceeds. I plan on giving 10% of my share: it's my 'tithe' US.
  8. Knackered

    Knackered Guest

    I just sent $10. I'll send more later and I'll post when I do

    There's 220 people online now, if we all put in $10 or more we'd reach $2500 today.
  9. fds66

    fds66 Senior Member

    I just sent a little money - least I could do for them
  10. citybug

    citybug Senior Member

    As soon as I check my credit. I did $20, a couple months worth.
  11. Jerry S

    Jerry S Senior Member

    I think txfriend's idea of a monthly contribution is a good one. Budget calculations are beyond me at the moment, but $10 per month sounds about right for now.

    Thank you noble KnightofZERO and all the other contributors. Let's give that sequence a good home!
  12. Knackered

    Knackered Guest

    I agree, $10 a month seems fair, I'll do the same.
  13. Jerry S

    Jerry S Senior Member

    Done. PayPal doesn't have a monthly payment option, so I paid 6 months in advance. Next payment October 15. Little Sequence is going to need some maintenance.
  14. Robin

    Robin Guest

    Andrea Whittemore-Goad linked to this page on her facebook page, and is going to ask the powers that be at the WPI if she can put it up on their page too.!/profile.php?id=100000648344765&ref=ts (you need to be her friend to see it.)

    My mom is going to match my $15 donation. Yay mom! so add her to the tally. :)
  15. dancer

    dancer Senior Member

    Midwest, USA
    Thank you for this thread. It was just the reminder I needed. Send my paypal donation in to WPI just now. Let's keep asking friends and family, too.
  16. InfertilityMom

    InfertilityMom XMRV positive

    Reno, NV
    I love the idea of donating something every time Dr. Judy replies to an email, but boy am I in debt then, nearly 3 years worth!!! LOL

    We donated about $400 over the course of last year, much of it I did personal "fundraising" for through my own blog, asking friends to help send me to the to the I Hope You Dance dinner and things like that. Since I got sick just after my 18th birthday (thus have almost no work history over the past 20 years) I don't have nearly enough "quarters" to qualify for SS disability (though I'm well-qualified from the medical standpoint). Like you all, money is tight here, but I'm planning to do another $60 one-time donation after our tax refund comes in.

    Since someone mentioned that Paypal doesn't have a monthly option, check out their "subscription" area. I know I have a small monthly payment set up to someone that way, but i don't recall the details, if it has to be initiated by the other party and you accept, or if anyone can do it from their own end???

    Please keep Andrea in your prayers as she is supposed to interview today (and has been down really sick) and Dr. Judy and her husband and they are supposed to fly to Europe tomorrow but may be delayed by the volcanic ash.
  17. michal


    I did a small money collection between my friends and familie and I collected 1000 EUR, which I sent to more organisations. If I remember good I sent to WPI 200 EUR.
    I will do the same initiative next year.
  18. Frickly

    Frickly Senior Member

    From XMRV Global Action Cause


    The Whittemore Peterson Institute is "attempting to isolate and sequence XMRV from as many patients as possible. This is a costly undertaking, around $2,500 per isolate. The Whittemore Peterson Institute is having a difficult time funding this undertaking.

    You can get research $$ if you're looking at a prostate cancer patient and XMRV.
    You can get millions of research $$ if you want to look at the immune response to XMRV in monkeys.
    You can get NO research $$ to study XMRV in patients with ME/CFS.

    Please join us in our support of The Whittemore Peterson Institute by "ADOPTING A SEQUENCE". By donating 5-10% of your monthly expenditures on supportive treatments and vitamins we could easily raise above and beyond $2,500.

    Please consider:

    Making a "one time" donation of 5-10% of your monthly supportive treatment expenditures.
    Making a "monthly" donation of 5-10% of your monthly supportive treatment expenditures.
    Ask your family, friends, colleagues, acquaintances and church if they are willing to match your donation.

    How to donate:

    Click on the WPI Donate button located on the XMRV Global Action cause page.
    Post a message at the bottom of our cause page with the following information: Amount you donated/plan to donate to The Whittemore Peterson Institute in name of the ADOPT A SEQUENCE campaign. Dont forget to include information on matching donations you are able to procure. This way we can keep track of our progress.

    We would like to say thank you to the Phoenix Rising Group for starting this initiative, specifically, KnightofZERO and Gracenote. To follow this thread please go to
  19. Robin

    Robin Guest

    If only it were that easy! Fundraising is tough with this illness because many of us are financially dependent, or living near or in poverty. It's understandable why people find it so hard to give.

    I think this thread got a good start. Let's keep it going!
  20. SeaShel

    SeaShel Senior Member

    I sent $25 today and set up the bill pay in my checking account to automatically send $25 each month.

    Doing it this way, I was able to designate Adopt a Sequence as my "account" number so WPI knows what the donation is for, and hopefully they are getting a wee bit more of my money not having to pay the PayPal fee.

    One thing WPI could do to improve their donation set up is to have a Memo or Note area. A friend made a nice donation to them as a Christmas present to me, and there was no way for him to designate that the donation was in my honor and so he had to tell me himself instead of a note coming to me from WPI. (Not all givers are comfortable with that).

    A small issue in the big picture, I know. But when you are in desperate need of $$, anything you can do to make non-patients more likely to give is a plus. I'll be sending an email to the contact listed on WPI's site mentioning this.


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