1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
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A Little Poisoning Along the Road to ME/CFS
Looking at my symptoms, many of which are far less these days and some are gone, it would be easy to figure that I'd just been dealing with some heavy-duty menopausal issues.
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(Anon poll) How many ME/CFS+related groups have you voted for in ChaseCommunityGiving

Discussion in 'Action Alerts and Advocacy' started by Dolphin, Nov 17, 2011.

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How many ME/CFS +related groups have you voted for in ChaseCommunityGiving (Nov '11)?

Poll closed Nov 23, 2011.
  1. 1 group

    0 vote(s)
    0.0%
  2. 2 groups

    0 vote(s)
    0.0%
  3. 3 groups

    0 vote(s)
    0.0%
  4. 4 groups

    1 vote(s)
    4.8%
  5. 5 groups

    0 vote(s)
    0.0%
  6. 6 groups

    3 vote(s)
    14.3%
  7. 7 groups

    1 vote(s)
    4.8%
  8. 8 groups

    0 vote(s)
    0.0%
  9. 9 groups

    6 vote(s)
    28.6%
  10. 10 groups

    7 vote(s)
    33.3%
  11. 0 - but I will definitely vote for one or more on or before Nov 22

    1 vote(s)
    4.8%
  12. 0 - but I may vote for one or more on or before Nov 22

    0 vote(s)
    0.0%
  13. 0 - I don't intend to vote

    2 vote(s)
    9.5%
  14. 0 - I dont have a Facebook account

    0 vote(s)
    0.0%
  1. Dolphin

    Dolphin Senior Member

    Messages:
    6,872
    Likes:
    6,169
    People have 10 votes in the latest Chase Community Giving (Nov 8-22, 2011). One charity rep was worried that some people might think they only have one vote. This poll might give an idea of the problem (as well as being another plug for the contest!). Although it seems unlikely any of the groups will win $100,000 at this stage, many could win $25,000 if they get 500+ votes* (say) in the remaining five days.

    * it is hard to know what will be required. It doesn't look like the current 7 in prize-winning positions ($25,000 each) will all get prizes unless there is an increase. The top two are in a stronger position but anything less than 1500 votes (in total over the two weeks) is still probably fairly vulnerable.
     
  2. cfidsurfer

    cfidsurfer

    Messages:
    49
    Likes:
    2
    Sarasota,FL/PA/NJ.
    Voting ends at noon EST.

    BTW, for you last minute voters; I think voting might end on the 22nd at noon EST.
     
  3. Jill McLaughlin

    Jill McLaughlin *****

    Messages:
    196
    Likes:
    5
    I will not vote for or support ME/CFS groups. There is no such thing as ME/CFS. ME/CFS is a made up term that can mean anything. Research on ME/CFS will be the same mixed cohorts or worse and will yield the same meaningless conflicting results, and for which there will be no biomarkers or treatment.


    Today is the deadline for comments to NCHS. To prevent the elimination of ME as a diagnosis from the ICD

    Contact: NCHS <nchsicd9CM@cdc.gov>
    Donna Pickett <dfp4@cdc.gov> ASAP!!!
    ASAP!!!

    Sample letter to NCHS:

    Dear Sir/Madam,

    I am an ME patient and have an ME diagnosis
    or - as a patient/family member/stakeholder in this
    matter, I strongly object to the combination of ME and
    CFS under ICD code G93.3. NCHS has coded ME
    and CFS accurately and separately in the original
    intent for ICD-10-CM. Please keep the ME and CFS
    codes/classification/diagnoses separate.

    ME has been coded at G93.3 and should not
    be changed or subdivided as in NCHS Option2.

    The classification for ME should be and remain as G93.3 under
    Diseases of the Nervous System. Based on science and policy,
    it is not clinically valid to classify CFS at code G93.3 as the
    Coalition 4 ME/CFS proposal has recommended. Such changes
    should not be made to ICD-9 or 10CM or to the future ICD-11.
     
  4. Esther12

    Esther12 Senior Member

    Messages:
    5,387
    Likes:
    5,903
    I voted for all the CFS charities listed in one thread (6?) and then a few non-CFS ones.
     
  5. Dolphin

    Dolphin Senior Member

    Messages:
    6,872
    Likes:
    6,169
    If lots of people were doing 6, it'd be great.
     
  6. Tuha

    Tuha Senior Member

    Messages:
    823
    Likes:
    987
    Jill, may I ask you one question? Have you voted for WPI in the last Chase Community Giving contest?
     
  7. Aileen

    Aileen Senior Member

    Messages:
    608
    Likes:
    493
    Canada
    Jill, I cannot speak for the organizations, but I have been around for 25 years so I have seen quite a bit regarding name changes. The names of these organizations generally have more to do with public recognition than with acceptance/preference of a particular name. One of the goals of many of these groups is to help people who may have this illness get a proper diagnosis. If the media and much of the medical literature is using one name and your group is using another, the public is going to have difficulty getting to you. You aren't going to be much use to people if they can't find you. That is why many have cfs in the name.


    Does it not occur to you that some of these organizations that you are refusing to vote for (fund) are trying to mount a campaign to do just that but are having difficulty in part due to a ... lack of funds?!?!
     
    anne_likes_red likes this.
  8. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

    Messages:
    4,123
    Likes:
    978
    Concord, NH
    I have voted for 5 or 6 groups? and was waiting out to see who should get my last votes to help them win!

    GG
     
  9. Dolphin

    Dolphin Senior Member

    Messages:
    6,872
    Likes:
    6,169
    Good

    Apart from the 5 in your signature, two others still in contention are:

    - (81st position) Enterovirus Foundation, Inc. San Francisco, CA http://bit.ly/lzhRfi http://www.enterovirusfoundation.org/ FB http://www.facebook.com/EVForg (Dr. John Chia and Andrew Chia are involved in this research foundation which was set up by a patient with ME/CFS from what I heard)

    - (61st position) Rocky Mountain CFS/ME and FM Association Denver, CO http://bit.ly/s5fAJh http://www.rmcfa.org/index.html FB http://on.fb.me/uqyE5r

    I don't rate the chances of others (outside the top 7) but anything is possible. But I think it's safe to use up 7 now - I can't see 4 new ones coming into the top 100.
    You could try the links for the seven and see if you says you've already voted or not.
     
  10. SpecialK82

    SpecialK82 Senior Member

    Messages:
    897
    Likes:
    475
    USA
    I voted for 6 (?) groups also, waiting to see if we will be trading votes with any other orgs...
     
  11. Jill McLaughlin

    Jill McLaughlin *****

    Messages:
    196
    Likes:
    5
    Aileen, I agree with what you are saying and understand the problems with the terminology and confusion. You have to call it something! But you try to sort it out and solve it, not make it worse. I am referring to the groups of a small # of unqualified patients/lay pple who tried to influence federal policies and change ICD codes based on a good deal of inaccurate information. It is time we held them accountable. We have paid the price for failing to do so for far too long.

     
  12. Aileen

    Aileen Senior Member

    Messages:
    608
    Likes:
    493
    Canada
    Ok, fair enough. But you said a "small number". Do these people really take in all of the organizations in the potential money in the Chase contest? What about the cfsknowledgecenter? It is a website, 2 actually, that give our community a chance to connect with each other. They have made and are continuing to make a series of videos to help patients with info, exercise, yoga is upcoming ... They haven't tried to influence any federal policies. Why punish them? Can't you vote for them? And what about the Enterovirus Foundation? That is research. No lay people there.
     
    helen41 likes this.
  13. gregf

    gregf Senior Member

    Messages:
    137
    Likes:
    36
    Sydney Australia
    I have worked hard and patiently to convince patients that using the name ME is an easy and effective tool to fight our cause. I have even donated money to help this.
    But the number of patients saying "chronic fatigue" seems to have increased.
    On Twitter the #CFS tag is overtaking the #MECFS tag.

    So I feel I am wasting my time and money and have withdrawn from donating either.
    I will not vote for any organisation that promotes "CFS".
     

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