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What are we waiting for really?

Discussion in 'Action Alerts and Advocacy' started by _Kim_, Apr 16, 2010.

  1. _Kim_

    _Kim_ Guest

    [note: gracenote posted this on the WPI Throws Down the Glove article. This absolutely deserved it's own thread. Wow]
     
  2. gracenote

    gracenote All shall be well . . .

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    When I asked Dr. Mikovits what we could do to help, she suggested the following ideas (these are not direct quotes, and some of these points have been posted elsewhere):

    What can you do?

    Fundraise. Right now fundraising for the WPI is the most important way for supporters to contribute.

    Contact your government. Make your voice heard by your government!

    Ask why the NIAID is not allocating money for the more than 10 million Americans infected with XMRV while spending billions on the less than 1 million Americans infected with HIV.

    Demand that NIAID immediately put resources into XMRV, an HIV-like virus that is destroying American families. Afterall, these are your tax dollars being allocated.

    XMRV is real. Every infected individual and family deserves the same attention that an HIV infected individual or a cancer patient receives.

    Engage your advocacy groups. Every single advocacy group and website should be saying that the WPI, NCI and CC did the most rigorous research possible to show that XMRV is associated with CFS and demand that, as taxpayers, their governments not deny them for one more day!

    Get creative in your protests. It might be time to borrow a chapter from the early AIDS movement in order for your voices to be heard.​

    XMRV is REAL. It is a new infectious human retrovirus; that fact has NEVER been questioned. Doesnt every infected individual and family deserve the same attention as an HIV infected individual or cancer patient? THIS is the question that should be posted WORLD WIDE.
     
  3. citybug

    citybug Senior Member

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    I wrote to senators and congressmen and will do so again, and gave the small amount of money I can to WPI. I think we need to ask them to give directly to WPI and other centers for excellence for ME/CFS. I think we need to write again since representatives were concentrating on health care reform until recently. I think most of our letters have been general, or concentrating on one aspect or another, but I think we need to say fund WPI.
    I want to circulate a CFS awareness day May 12 letter with a link to their email, but my email list is not very big. I put one in the advocacy section, will look for where it is.
    Asking for money for XMRV in general is going to go to the CDC. CDC and NIH will suck up the money. They have their own federal XMRV Scientific Working Group going now for the blood bank studies. Stage one looking at the tests, stage 2 more prevalance stuff we don't need (they've spent 25 years already on that) then stage 3 CFS studies. We need to skip 2 and go to 3 with some speeded up HIV status.
    I'd like the CAA to back a study at WPI (like to test 10 blood samples from several CFS doctors around the U.S, like WPI has done in UK) and to aid them in fundraising, lobbying and everything else. I was trying to work on a post for the CAA discussion when I saw this. What is the CAA doing to support WPI? I was looking over their site and everything was looking better than I thought except for this area (and a couple others). They are reporting and congradulating, but where is the helping hand? Are they in competition for research funds?
    I would like to do more, but crash from one email. We need some fundraising help from WPI, letters to circulate, pins to buy. I want a WPI lab coat. I guess they are working on grants. Has everyone given $5 for every Judy Mikovits video they've watched?
    On the other hand I think many people are still scared to get their hopes up. Without the antibody test we can't test ourselves for sure, and the polls show negatives. WPI will be the leader in ME/CFS research for years to come and deserves our support now, but I think money will turn around with one positive confirmation study or the antibody test.
     
  4. citybug

    citybug Senior Member

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    I think we should all lie down on a sidewalk wherever we are with a sign Research XMRV, fund WPi. If you have a group spell out XMRV with your bodies. Do it in front of CFSAC meeting in DC. Now I wish I had a brochure to hand out from WPI, if I did this. Or sat at a table. Maybe we need to start sitting out at tables for donations.
     
  5. Kati

    Kati Patient in training

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    This is a very important thread, and I would like to se the title being a bit more precise and catchy KIm, Like: "What are we waiting for: time to support WPI!!"
    Please pass the word around, our life as we know it is on hold and will be on hold until science has figured out XMRV.
     
  6. HopingSince88

    HopingSince88 Senior Member

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    Take It To The Top

    I just went to the White House website and left this message for Michelle Obama:

    "Dear Ms. Obama,

    I am writing to you as a concerned mother.

    Late in 2009 Science, a highly respected research journal, published a study (done by The Whittemore Peterson Instute-Univ. of Nevada-Reno) reporting on a novel retrovirus, named XMRV.

    Since this announcement, there has been a great deal of political football about this retrovirus. In the din of the media sound-bites over some studies having difficulty finding the virus an important message is being lost: there is a new retrovirus; it is pathogenic; it is being found in sick people.

    (I would just like to say here that the White House knows well what it is like to have a lot of noise planted in the media by opponents to distract the people from the truth. It is my hope that you can recognize this same tactic at work here.)

    Many of these people who are sick are children or adolescents. More are adults who have been ill since childhood. Weve lost a generation of sick children, adolescents and young adults. As time marches on we may be passing this retrovirus from mother to child, expanding this pathogens reach into yet another generation of innocents. I realize that science moves slowly, but time is of the essence, and this issue needs an advocate in the White House to make sure that we are doing all we can to move the science along as quickly as possible.

    The CDC/NIH are already working to see whether this pathogen has slipped into the blood supply, an important first step. In Canada, individuals diagnosed with ME/CFS (many have XMRV) are being banned from contributing blood. Ontario has added a new code to their medical coding system for ME/CFS as an neuro-immunologic disease, because they find the evidence on XMRV to be so compelling.

    However, the U.S. does not seem to be pursuing this new pathogen very vigorously. We dont seem to have put funding into how XMRV is transmitted, what its effects are on its human hosts, and how we might possibly treat those infected with this newly discovered threat. Those researchers that are currently working in these areas desperately need more funding.

    It is estimated that the number of people infected with XMRV may be as high as 10-fold the number infected with AIDS. It is imperative that XMRV gets the same kind of funding that AIDS does.

    Please take time to familiarize yourself with this new health threat, and how you can make a positive impact on families stricken by it."

    (Hope I got all the fact right. I will also send to my 2 senators...both are women.)
     
  7. jspotila

    jspotila Senior Member

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  8. Otis

    Otis SeƱor Mumbler

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    Does anyone have better luck with paper letter to congress vs. using their website. So far the web form roure has only served to get me on fundraising email lists.

    Also, when it comes to getting study money I think I read on another thread that there were funds available from the bailout (AARA) that might be tapped. I'll try to research this weekend but if anyone knows more please post. We should also be contacting HHS, I think. Here's a link.

    http://www.hhs.gov/ContactUs.html

    Perhaps WPI can sell labcoats to raise $. Wearing one would definitly be a conversation starter and raise awareness.

    Otis
     
  9. Kati

    Kati Patient in training

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    As a suggestion and immediate action, how about each member of this forum write a testimony for the incoming CFSAC. This would be a great way to ask for research money for XMRV.
     
  10. Adam

    Adam *****

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    Great letter Hoping. I must do something like this too. Is it okay if I use your letter as a rough template for UK letter to Prime Minister (whoever that maybe come 6th May)?
     
  11. Koan

    Koan Be the change.

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    Kati,

    What a fantastic idea!

    ETA What appeals to me about this is that it focuses our efforts at one target. I think it would be a good use of our efforts if we each wrote our personal story - the public version, of course - and inundated specific targets with them.

    In this way we can deluge those we wish to reach with our reality. Rather than just the occasional letter, or even many letters, if we could rain thousands of stories of lives lost to this illness on our targets it may, by the sheer weight of words, make some kind of impression.

    EAgainTA I'm usually not in favour of the personal story route, feeling there are more productive approaches like look out for the blood supply, but if the stories are used in a very specific way, again and again, all over the world, again and again, in great waves of human misery...

    maybe
     
  12. HopingSince88

    HopingSince88 Senior Member

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    Adam,

    You may use whatever portions of my letter you wish.

    (paper letters probably are more effective...I will have a go at that too).

    Hoping...
     
  13. Robyn

    Robyn *****

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    xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
     
  14. kit

    kit

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    Can we somehow take advantage of the current Sarah Myhill petition (1500 signatures, including personal stories in less than a week!) and bring these to the attention of our Senators, Reps, President, Vice President, and Prime Minister, tying in that specific issue with the broader issue that we need funding for research. All we need to do is cc these people. I like the idea of writing to Michelle Obama. How about the Queen? Many people are too sick to write, including me often . . . can we make a petition that demands funding for XMRV? Then circulate it to CFS, Fibro and Autism forums? Then post it to the above heads of state?
     
  15. serenity

    serenity Senior Member

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    here in Austin i & most of my family & friends worked at / work at the Dept of Health & Human Services. (used to just be called the Health Dept or Dept of Health so forgive me if i use those terms - i am so used to them.) anyway, no one there that i know knows anything about XMRV.
    i know they may not work in the right departments to have heard of it, but i still find it shocking that they dont' even know about it. at all. i asked, they don't. i'm not sure what i can do about that. these are friends & family - & none of them believe in or "get" my illness. it's not like i can ask them to lobby for me, they would only get mad at me for talking about my problems again.
    sigh
     
  16. michal

    michal

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    This is the great thread. This is the question which is in my head all the time but I dont know the answer - What are we waiting for?!? I think we spend too much energy in the discussions like if XMRV is the reason of CFS and so on. I think this is the question for researchers but they dont have too much money for research so it takes forever to make a progress. So I think this should be our initiative to try to get some money for them. We can send them our private money what would be also great but we should also try to make an effort on government to found CFS research. I think in this effort we need better coordination. If for example now 2-3 people will write to Michelle Obama maybe all 3 letters will finish just in a garbege but imagine if she would get the thousands of letters in the same day - we need the numbers - we need to be visible. I think in the internet age, the best way how to be better coordinated is just throught internet. Maybe the emergency action group which was founded some weeks ago is a good possibility. Imagine if there would be 10.000 or even 100 000 people. We could just write an email to them and they could react to an action. but till now there are just 200 people. Its sometimes difficult for a personne to look for an CFS action - if you are in emergency action list - you just get an email and you can react - its so easy. Sometimes I have impression that it takes us forever to react to something or to get the numbers (I checked the petition about a new Neuro-imune centre in US and after some weeks there are only 600 signatures. the end of the petition is in 200 days. If it will continue like this, there will be maybe 5000 signatures. I ask myself if the government will found for millions of dollars a centre if there will be only 5000 signatures - I dont think so. I ask myself where are all CFS patients)
    I think I will stop to read the articles about XMRV and I will try to do other things. I decided to do at least one hour a day something for CFS. I sing the petitions, I prepare the petition for CFS in EU, I collected the money for CFS research with my friends and family and I am trying to motivate other CFS patients in my country to do the same, I try to cooperate with some doctors and i would like to do more even i am often too tired- So please think about and if you have an idea how to make our better coordination or which action could we do just write it even if you think that its stupid - I think here are a lot of smart people. if we dont want to spend our life in beds we have to do something.
    I would like to say also big "thank you" to all US people and the people from other develop countries - you are doing for us (from other countries) a lot. You send a lot of money for CFS research, you try to force your governement to found CFS research.......its all the time the same but it has to start in these countries and then it will go slowly also to other countries. So I cross my fingers for you so much. I would also like to do more with my country but sometimes its so difficult - We dont have any CFS group, any CFS web side, no doctors for CFS sickness, no CFS research and our government steal all money because of corruption - sometimes I think shame of my country but I will try to improve the situation.
    So hopefully the situation will change soon and on the end everyone of us could answer the question - what are we waiting for?!?
    michal
     
  17. Kati

    Kati Patient in training

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    Dani, think outside the box... Leave the science article in the lunch room. In doctor's offices. Come out of the closet on facebook. Do a bottle drive. It's time to pass into action.
     
  18. PoetInSF

    PoetInSF Senior Member

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    Wow. This makes the Tea Partiers look like amateurs and Judy is now openly turning to politics, scientific process be damned. But then, that's how they conducted their business from the beginning.
     
  19. CBS

    CBS Senior Member

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    What are we waiting for?

    I'm stepping out on a bit of a limb (so what's new?) and I know that this might not sit well with everyone here but it is not my opinion that we are waiting for the WPI (or even the Cleveland Clinic or the NCI).

    In the world of research, the WPI has already come up with a very big hit but many questions have been raised (many by studies with minimal attention to design and the WPI has responded/engaged with the authors of those studies in ways that have generated a lot of heat from both sides - and no, I'm not blaming the WPI for feeling frustrated but I think that they need to trust the scientific process as much as the rest of us).

    So, will the next great study that moves us closer to an answer on what role, if any, XMRV plays in CFS come from the WPI? I seriously doubt it. What more can they say that they haven't already said? A study (or series of studies) from independent groups (Columbia Univ. Univ of Utah, Emory, Abbott, GSK, ARUP, University of Montreal - Dr. Jolicoeur, HHS, or even the CDC) would be far more powerful.

    So support these groups and push federal officials to devote resources to the problem. But also know that right now we are in a period where a huge amount of money has been spent (probably as much if not more in the last 6 months than has been spent on CFS in the last 6 years). Our present problem with XMRV isn't funding, it is patience and, while I don't think this is likely; what do we do if XMRV doesn't turn out to be a central issue (perhaps another co-infection) in CFS?
     
  20. michal

    michal

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    I think even if XMRW doesnt turn out to be a central issue - WPI ist right that we need more funding. even if there was an improvement last months with funding (but i am not sure) its still not too much compare to other sicknesses. I think even if XMRV is not a cause this ist just a normal scientist process and the researchers have to find out if its true or not. But if there will be no money - they cannot confirm it and so a lot of CFS researchers dont know on which they should focus.
     

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