• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

(Anon poll) How many ME/CFS+related groups have you voted for in ChaseCommunityGiving

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

  • 1 group

    Votes: 0 0.0%
  • 2 groups

    Votes: 0 0.0%
  • 3 groups

    Votes: 0 0.0%
  • 4 groups

    Votes: 1 4.8%
  • 5 groups

    Votes: 0 0.0%
  • 6 groups

    Votes: 3 14.3%
  • 7 groups

    Votes: 1 4.8%
  • 8 groups

    Votes: 0 0.0%
  • 9 groups

    Votes: 6 28.6%
  • 10 groups

    Votes: 7 33.3%
  • 0 - but I will definitely vote for one or more on or before Nov 22

    Votes: 1 4.8%
  • 0 - but I may vote for one or more on or before Nov 22

    Votes: 0 0.0%
  • 0 - I don't intend to vote

    Votes: 2 9.5%
  • 0 - I dont have a Facebook account

    Votes: 0 0.0%

  • Total voters
    21
  • Poll closed .

Dolphin

Senior Member
Messages
17,567
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.
 

Jill McLaughlin

Senior Member
Messages
196
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.
 

Tuha

Senior Member
Messages
638
Jill, may I ask you one question? Have you voted for WPI in the last Chase Community Giving contest?
 

Aileen

Senior Member
Messages
615
Location
Canada
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.
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.


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!!!
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?!?!
 

*GG*

senior member
Messages
6,389
Location
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
 

Dolphin

Senior Member
Messages
17,567
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
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.
 

Jill McLaughlin

Senior Member
Messages
196
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.

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?!?!
 

Aileen

Senior Member
Messages
615
Location
Canada
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.
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.
 

gregf

Senior Member
Messages
144
Location
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".