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Nitric oxide and its possible implication in ME/CFS (Part 2 of 2)
Andrew Gladman explores the current and historic hypotheses relating to nitric oxide problems in ME/CFS. This second article in a 2-Part series puts nitric oxide under the microscope and explores what it is, what it does and why it is so frequently discussed in the world of ME/CFS....
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Very important!

Discussion in 'Action Alerts and Advocacy' started by Frank, Jun 15, 2010.

  1. citybug

    citybug Senior Member

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    CFIDS Emergency Relief Services also in Chase Giving

    I see 19 votes there. Maybe your computer pulled up the earlier page?

    This is a great group that has helped out people with great need for a long time. I hope people keep voting for it.
  2. Dolphin

    Dolphin Senior Member

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    That's good.

    No, I don't think that was it. I have just saved my "my votes" page to show what was shown (it's not important). It had PANDORA at 362 votes but CFIDS EMERGENCY RELIEF SERVICES, INC at 1. I also went to various other pages which didn't make sense as I said e.g. charity down as 1 vote but there were photos for a few voters.
    Anyway, glad it's fixed.
  3. citybug

    citybug Senior Member

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    I am contacting friends directly to get at least 10 more votes. If everyone got 10 more maybe we would have it.
  4. Dolphin

    Dolphin Senior Member

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    Chase Community Giving have changed it so that the positions do represent the positions i.e. no more 1st, 1st, 2nd.
    One can only see the top 200 now and then those in "my votes" or going to a particular charity.
    PANDORA is on 48th.
    181 votes is cut-off for 200th.
    NJCFSA is in 401st on 96 votes (up to 99 really). It will need a boost to get up there.
  5. citybug

    citybug Senior Member

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    This is the partner of PANDORA Patient Alliance in building the NEI Center if you have more votes.
    http://apps.facebook.com/chasecommunitygiving/charities/223930161-the-lanford-foundationlifelyme-inc

    The NEI Center has it's own website.
    MISSION STATEMENT

    The NeuroEndocrineImmune (NEI) Center™ is a community, patient-driven grass roots project of P.A.N.D.O.R.A. in partnership with the Lanford Foundation–Lifelyme, Inc. It will be the first research center to incorporate biomedical engineering, scientific, and clinical research and integrate patient computer-aided disease diagnosis and treatment (CADDT), which was specifically designed for multisystem illnesses and complex diseases. Guided by medical scientists and clinical researchers, with pertinent social services, the center staff will enhance the quality of life for millions of patients worldwide. The Center and its satellite locations will strive to facilitate cooperative and authoritative educational resources in clinical research, medical ethics, accountability, and patient/caregiver education, with the goal of providing new, integrated treatment programs for complex chronic illnesses.

    NEWS & INFORMATION

    06-10-2010 - New Jersey SR-20, supporting the the establishment of the NeuroEndocrineImmune (NEI Center™. goes for a full vote and as in the New Jersey Assembly is unanimously passed. Thirty-eight senators voted unanimously on this important resolution supporting our Center.

    Please like Chase Giving at Facebook, then search Patient Alliance or go to www.chasegiving.tk to vote.
  6. beesknees

    beesknees Senior Member

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    I thought it would be a good idea to make a list of all the CFS charities and how they are doing. I'll try an update it every couple days. What's great is there are 20 Cfs/Cfids charities, so we have one vote per charity ansd we can can use our gift votes for Pandora.

    1. Patient Alliance (Pandora) 456 votes
    2. New Jersey Chronic Fatigue Syndrome Association- 101 votes
    3. American Association for Chronic Fatigue Syndrome -64 votes
    4. National CFIDS Foundation- 57 votes
    5. National Chronic Fatigue Syndrome and Fibromyalgia Association -35 votes
    6. Blackhills Chronic Fatigue CFS and Fibromyalgia FMS Support Group- 29 votes
    7. Massachusetts CFIDS Associtaion- 25 votes
    8. Central Virginia Chronic Fatigue Syndrome and Fibromyalgia Assn -23 votes
    9. CFIDS Emergency Relief- 21 votes
    10. CFS Knowledge Center Inc. - 20 votes
    Wisconsin Chronic Fatigue Syndrome Association- 20 votes
    11. Connecticut Chronic Fatigue and Immune Dysfunction Syndrome- 16 votes
    12. Manasotta CFS/ CFIDS Support Group- 15
    13. Chronic Fatigue Syndrome and Fibromyalgia org of Georgia- 12 votes
    Greater Tallahassee Fibromyalgia Syndrome and Chronic Fatigue Syndrome- 12 votes
    14. Tacoma Gig Harbor CFIDS and Fibromyalgia Support -11 votes
    15. CFS/ FMS Support Group of San Antonio -11 votes
    16. Chronic Fatigue Syndrome Crisis Center- 10 votes
    17. CFIDS and Fibromyalgia Self Help Program- 5 votes
    American Blue Ribbon Awareness for Myalgic Encephalomyelitis -5 votes
  7. citybug

    citybug Senior Member

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    When you look at Leaderboard/my votes can see friend's votes and click on the ones you haven't voted for yet.

    A couple people I asked to vote didn't want to accept the cause application (where facebook says will have access to your friends names). This just sets up the application, then it asks you if you want to post it on your page or contact friends, all optional.

    Please vote so they stay in top 500.
  8. beesknees

    beesknees Senior Member

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    The latest update on the CFS charities. Keep it going. Were going great!

    1. Patient Alliance (Pandora) 665 votes
    2. New Jersey Chronic Fatigue Syndrome Association- 125 votes
    3. American Association for Chronic Fatigue Syndrome -80 votes
    4. National CFIDS Foundation- 68 votes
    5. National Chronic Fatigue Syndrome and Fibromyalgia Association -49 votes
    6. Blackhills Chronic Fatigue CFS and Fibromyalgia FMS Support Group- 47 votes
    7. Central Virginia Chronic Fatigue Syndrome and Fibromyalgia Assn -36 votes
    8. Massachusetts CFIDS Associtaion- 34 votes
    CFIDS Emergency Relief- 34 votes
    9. CFS Knowledge Center Inc. - 29 votes
    Wisconsin Chronic Fatigue Syndrome Association- 29 votes
    10. Chronic Fatigue Syndrome and Fibromyalgia org of Georgia- 27 votes
    Greater Tallahassee Fibromyalgia Syndrome and Chronic Fatigue Syndrome- 27 votes
    11. Connecticut Chronic Fatigue and Immune Dysfunction Syndrome- 24 votes
    12. Manasota CFS/ CFIDS Support Group- 19
    13. Tacoma Gig Harbor CFIDS and Fibromyalgia Support -17 votes
    14. Chronic Fatigue Syndrome Crisis Center- 12 votes
    15. CFS/ FMS Support Group of San Antonio - 11 votes
    American Blue Ribbon Awareness for Myalgic Encephalomyelitis -11 votes
    16. CFIDS and Fibromyalgia Self Help Program- 7 votes
  9. shannah

    shannah Senior Member

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    Just received this message from

    ME-CFSCommunity.com

    A message to all members of ME-CFSCommunity.com
    As virtually all of us know, brainfog is an ever present impediment in our daily lives. Mine is even on display for all to see in a video.

    So please allow me this meager excuse for why I have been so late in establishing our legal entity (cfsKnowledgeCenter) as an authorized charity with the Chase Community Giving program. I even managed to screw up our Chase profile page and leave most of it blank.

    Late or not, I want to ask you to please take the few steps necessary to simply cast a vote to help us raise money through this wonderful program.

    It won't cost you more than a few minutes of your time, but those few minutes can help keep our ME-CFSCommunity alive and growing.


    http://apps.facebook.com/chasecommu...2-cfsknowledgecenter-inc?vote_successful=true



    Please click HERE to help us . . . then, go a step further and ask your family and friends to do the same.

    Thank you for your consideration.

    Dan Moricoli


    Visit ME-CFSCommunity.com at: http://cfsknowledgecenter.ning.com/?xg_source=msg_mes_network
  10. Dolphin

    Dolphin Senior Member

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    Small correction: it's the top 200.
  11. Frank

    Frank Senior Member

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    I'm afraid only PANDORA will make it in the top 200 or you would have to set-up some very strong and big campaign for one of the others. Even PANDORA is not yet there, i'm guessing they still need about 200 votes to be sure. PANDORA is at 62 now. Please keep asking friends to cast a vote.
  12. Dolphin

    Dolphin Senior Member

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    (In case I forget) It might be worth storing the final votes to see what the thresholds are in future. So we could say: last time you needed x to get top position, y to get fifth position, z to get 200th position. There may be a use e.g. in an initial E-mail blast.
  13. Frank

    Frank Senior Member

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    Pandora has dropped and is now ranked 72th, hope we will get there. Just collected 6 extra votes.
  14. shiso

    shiso Senior Member

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    Yeah, at this point it looks like the best we can hope for is for PANDORA to stay in the top 200 charities for $20K in the time remaining in the competition, while multiple theater and dance troupes, cat/dog rescue groups, and more well-organized patient groups with diseases surpass us each day.

    I understand why people don't want to be on FB in the first place, but it seems lame to me that there are 4,000+ fans of FB's CAA page and 2,500 fans of FB's WPI page - so people who are already on FB publicly supporting ME/CFS on FB - and no doubt many other patients who are not CAA or WPI fans who are FB - and there are only 718 votes for PANDORA, the only ME/CFS organization in the top 200. Why the vote count is not higher is puzzling to me, given there are thousands of us.

    In case there are people reading this here who are on FB but who are not participating due to visibility concerns, there is an option you can choose under "Preferences" once you "Like" the Chase Community Giving application to hide your voting activity from others. Your voting activity also does not appear on your wall or profile. Chase does get your FB user number and information in your profile, but that is the case with any third party application on FB. There are those that may care about this, and that's completely understandable. But I just wanted to point out the visibility option, in case that was deterring people voting. Thanks.
  15. frenchtulip

    frenchtulip Senior Member

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    Post on other related forums

    I will be looking for some CFS-related forums, where I can post info about the contest and P.A.N.D.O.R.A. I sent an email asking the CFIDS Association to include information in their July CFIDSLink. I sent info to www.fightingfatigue.org, but am not sure if that's the kind of thing they can post. Posted on the ME/CFS board at www.dailystrength.org. Will be looking for other places. Perhaps local support groups could help get the word out.
  16. Tuha

    Tuha Senior Member

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    I think its still not sure that we will get in the top 200. There is still a lot of days and the last days we are going down. We have just 250 points more than the 200 th organisation. Its not so much. We are crying all the time that there is no support of CFS research and when there is a possibility how to improve it from our side - we are not activ. Then its also our big mistake. so people please vote at least for pandora. if you already voted - ask your friends. always when i visit someone or someone visit me and there is internet - i ask him to vote and it works with 90 % of the people. sometimes its embarassing but we have to forget about - its not so important.

    if you dont have facebook - just make it. there are and there will be a lot of cfs activities through facebook. you dont like it? - me neither i use it only for cfs support activities. and if you dont want to show your identity - you can just do facebook account with fictional name and noone will know thats you.

    I just checked the new petition for XMRV and there are after one day already 200 supporters. pandora has after one month 700. How is it possible. is pandora not important for us? what is important for us? why do we support one activity and another activity has small support? can someone explain it to me? its really demotivating also for the cfs patients who are activ, for cfs researchers, for cfs advocates - maybe they will be so frustrated that they will give up. then our futur will be on the end. but this discussion is mybe for another thread.
  17. frenchtulip

    frenchtulip Senior Member

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    Tuha, I think people don't realize how easy it is to vote and perhaps they think their vote isn't going to make a difference.
  18. citybug

    citybug Senior Member

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    Please remember to vote for Patient Alliance (Pandora) for new NEI research center, and other cfs research centers. I think we have to bump up the thread few times a day so people see it in the new posts. They are ranked at 77 now. French tulip thank you for continuing to seek out the other forums.

    Please vote. It's $20,000.
  19. Dolphin

    Dolphin Senior Member

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    Maybe somebody could keep track of how much the votes for 200th position go up each day. It is now 519 and I think it was 499 yesterday. So 20 in one day. While PANDORA only went up 7 votes and have dropped to 82nd. It could still be close unfortunately.
  20. Tuha

    Tuha Senior Member

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    2-3 days ago PANDORA was 300 votes before the organisation on the 200 th place. now we have only around 220 votes more - so we lost a lot. there is still a lot of days to vote - till 13. july.
    I think a lot of organisations will accelerate their efforts on the last days and they will get many votes. we have to do the same because i am really afraid that we will lose by only some votes and this will be really frustativ and the people will even vote less for the next time. so please if you didnt vote, find 5 minutes and go to vote - it can help us. not only the things about xmrv are important - we have to support all cfs activities.

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