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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, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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Some great ideas here! Helen, I didn't know about the Bring On the Votes page on Facebook. That's a wonderful idea! And you got 28 votes in just a short time! I checked and saw that many people come on there with many posts. I think I'll give it a try. Also, Tuha, I like your idea of engaging people who are doing online chat at Facebook. Had not thought of that. My young relatives are worn out with my requests to vote in past contests, so I'm not asking them in the first round. But I do plan to ask them in the second.
I'll change my privacy settings so that anything I place on their wall will be viewed by all their friends and as many people as possible. While I keep my no. of friends small, the young relatives have hundreds of friends. Unfortunately, not too many of my older relatives are on Facebook.
Nielk, that last point of mine wasn't aimed at you specifically, just thought it was interesting/worth posting.
The bit in bold is my point. In my last substantial post, I was just expressing my frustration at some people with ME/CFS. I've been involved in asking for money from people with ME/CFS on the internet and people would say they have no money - it was likely true for some but hardly true for all who said it/didn't donate (and don't donate to the cause in general - although I think a broader group are now donating with the WPI). I just get frustrated that some people with the illness won't do some things for the cause sometimes.
I'll change my privacy settings so that anything I place on their wall will be viewed by all their friends and as many people as possible. While I keep my no. of friends small, the young relatives have hundreds of friends. Unfortunately, not too many of my older relatives are on Facebook.
How does a person do this? Perhaps a thread should be started just for the "mechanics" of Facebook and perhaps another for wording to post on Facebook soliciting votes? Sorry, I get lots of email and only have so much time, with work etc.., so I need simplified protocol to help get more votes!
GG
PS If someone could email me simple directions, that would be helpful also, since this thread is getting to be very long with many posts everyday!
RE: people donating to research.
I did say I accept some people have little or no money. But I see people spending tens of thousands on their illness across their illness not giving anything (from what I can make out). They may think they have no money and they may indeed have less money than when they were working. But it looks to me than many do have some money. Anyway, as I say, more are giving now (through the WPI) than have been in the past. But I still reckon that around the world, a lot more could be raised. With so many million affected, there is potential for a lot to be raised. And research doesn't have to be a cure to be useful.
I agree that healthy people could contribute a lot either through donating themselves and/or fundraising (for example). But I'm not sure how focused a lot of people are on encouraging people they know to fundraise, etc. Perhaps there is a bit more of a focus now with the WPI.
Anyway, I was just saying this in the context of a lot not taking part in this competition which costs them nothing financially except a very small amount of effort. Last year, PANDORA only just made it with 1600 votes which included some bonus votes (i.e. less than 1600 voted). And they cover lots of conditions. The enthusiasm of the WPI supporters this year has been great.
I don't know for definite but apart from a "feeling" that it's from scratch, a couple of things suggest to me it's likely to be the case:A question someone asked me to which I cannot seem to find a clear answer in the official rules:
Do the votes from the first round carry over to the second round or does it go back to zero votes and voting starts again from scratch in the second round?
Yes, people making a special effort gives me a boost too - and there have been quite a few examples in this thread.I too occasionally am frustrated with what little people are willing to do but then someone comes through on something and I am encouraged by it.
It should be remembered that even for big well-funded surveys and studies (medical, political, marketing, etc.), that the response rate of people filling out/ answering surveys is surprisingly low -- usually less than 50% -- unless some prize, incentive, etc. is involved. I remembered a long time ago, I surveyed 100 or so students on a matter (no prize involved) and got a 50% response rate and everyone was surprised by that.
In terms of contributing, usually what works for me is designating a certain amount from my account to be deducted and given to a charity ahead of time. This is how I contributed to my retirement fund and funds to charities each month before I became ill with CFS. At the end of the year, I'd end up donating several hundred to charities but because I never had the money in the first place (as it was given to the charity right away), I didn't really feel like I "lost" money or felt deprived.
Any non ME/CFS charities you like? I'll vote for them in Chase Giving if you'll vote
I know other people can have other causes close to their hearts apart from ME/CFS. I have 7 votes left.
I'll vote for one of the ones below if somebody who hasn't voted so far votes for the WPI and/or the CAA.
The ones in the bottom 50 are probably the most vulnerable to not getting in the top 100 i.e. missing out on $25,000 and also missing out on Round 2 when another $2.5m will be given out.
http://apps.facebook.com/chasecommunitygiving/
The first number is the position.
The number at the end is the number of votes.
On the site, one can click on the name to get more info.
1 DRUM CORPS INTERNATIONAL INC Indianapolis, IN 4,050
2 YOUTH EDUCATION IN THE ARTS Allentown, PA 3,987
3 INTERNATIONAL WOLF CENTER Ely, MN 2,967
4 Whittemore Peterson Institute for Neuro-Immune Disease Reno, NV 2,381
5 Joyful Heart Foundation New York, NY 2,198
6 SCV Santa Clara, CA 1,884
7 The Blue Devils Concord, CA 1,409
8 WILDLIFE CENTER OF VIRGINIA Waynesboro, VA 1,270
9 ARCADIA EDUCATIONAL FOUNDATION Arcadia, CA 1,257 10 GLOBAL KIDS INC New York, NY 1,187
11 VINEYARD COMMUNITY CENTER Westerville, OH 1,168
12 WINTER GUARD INTERNATIONAL INC Miamisburg, OH 1,116
13 WILDLIFE WAYSTATION Angeles National Forest, CA 1,094
14 DOGS FOR THE DEAF INC Central Point, OR 1,035
15 MUSIC FOR ALL INC Indianapolis, IN 984
16 Petfinder.com Foundation Tucson, AZ 815
17 The CFIDS Association of America Charlotte, NC 767
18 AMIGOS Houston, TX 763
19 MENC: The National Association for Music Education Reston, VA 760 20 NORFOLK BOTANICAL GARDEN SOCIETY Norfolk, VA 710
21 Asha for Education New York, NY 683
22 SPCA of Westchester Briarcliff, NY 674
23 Break the Cycle Los Angeles, CA 645
24 JEFFERSON COUNTY PUBLIC SCHOOLS OUTDOOR EDUCATION LAB SCHOOLS FOUN Arvada, CO 611
25 CROSSMEN DRUM AND BUGLE CORPS OF DELAWARE COUNTY PA Voorhees, NJ 610
26 CGAUXA St Louis, MO 554
27 NJ SEEDS Newark, NJ 553
28 PARENT-CHILD CENTER INC Riviera Beach, FL 497
29 THE ARBOR SCHOOL Houston, TX 496
30 One Heartland Inc. Milwaukee, WI 473
31 The Anti-Cruelty Society Chicago, IL 458
32 JCC ROCKLAND INC West Nyack, NY 457
33 FARF Eugene, OR 454
34 SPARTANBURG CHARTER SCHOOL Spartanburg, SC 440
35 GLASSMEN JR DRUM & BUGLE CORPS INC Maumee, OH 435
36 GENDER SPECTRUM CHARITABLE FUND Orinda, CA 431
37 CASS COMMUNITY SOCIAL SERVICES INC Detroit, MI 419
38 International Rett Syndrome Foundation Cincinnati, OH 412
39 SOAR CHARTER ACADEMY San Bernardino, CA 403 40 CVLS Chicago, IL 388
41 San Diego Community Housing Corporation San Diego, CA 375
42 Chicago Coalition for the Homeless Chicago, IL 363
43 National MPS Society, Inc. Durham, NC 356
44 Water Missions International Charleston, SC 345
45 Save-A-Pet Grayslake, IL 344
46 The Lustgarten Foundation Bethpage, NY 341
47 IMMIGRANT SOCIAL SERVICE INC New York, NY 333
48 Autism Society of America, INC. Bethesda, MD 315
49 EPILEPSY FOUNDATION OF FLORIDA INC Miami, FL 311 50 CCF Alexandria, VA 304
51 TWP Fort Collins, CO 289
52 PET HELPERS INC Charleston, SC 281
53 BLACK ENSEMBLE THEATER CORPORATION Chicago, IL 275
54 Elephant Sanctuary Hohenwald, TN 268
55 YouthBuild Philadelphia Charter School Philadelphia, PA 258
56 CENTER FOR CONSERVATION BIOLOGY INC Williamsburg, VA 257
57 Charleston Animal Society North Charleston, SC 254
58 CRUSADERS SENIOR DRUM & BUGLE CORPS INCORPORATED Methuen, MA 243
59 MT HOOD KIWANIS CAMP INC Portland, OR 243 60 WBGO Jazz 88.3FM Newark, NJ 240
61 NATIONAL MULTIPLE SCLEROSIS SOCIETY Oakhurst, NJ 239
62 Binder Park Zoo Battle Creek, MI 238
63 The Children's Shelter San Antonio, TX 235
64 A.I.F. New York, NY 232
65 GRASSROOT SOCCER INC Norwich, VT 231
66 WOMEN MAKE MOVIES INC New York, NY 223
67 The Akshaya Patra Foundation USA Stoneham, MA 223
68 Children of the Night Van Nuys, CA 223
69 Peace Over Violence Los Angeles, CA 222 70 SYMPHONY SILICON VALLEY San Jose, CA 218
71 Wheeling Symphony Orchestra Wheeling, WV 210
72 Baltimore Child Abuse Center Baltimore, MD 209
73 TIGER STRIPES EXOTIC ANIMAL SANCTUARY INC Quitman, GA 195
74 Resurrection Project Chicago, IL 193
75 HISTORIC CHARLESTON FOUNDATION Charleston, SC 192
76 The Shakespeare Center of Los Angeles Los Angeles, CA 189
77 Junior Achievement of Northern Indiana, Inc. Fort Wayne, IN 182
78 CRISIS MINISTRIES Charleston, SC 179
79 Florida's Vision Quest Orange City, FL 179 80 THE LITTLE LIGHT HOUSE INC Tulsa, OK 174
81 Shelter Network Burlingame, CA 174
82 PROJECT SAGE HORSE RESCUE INC Valley Stream, NY 171
83 Kansas City Repertory Theatre, Inc. Kansas City, MO 170
84 IWS Chicago, IL 168
85 PSLS Rockford, IL 164
86 CCS Fort Worth, TX 161
87 NHLI Arlington, VA 160
88 GUIDE DOG FOUNDATION FOR THE BLIND INC Smithtown, NY 159
89 Gulf Coast Women's Center for Nonviolence Biloxi, MS 158 90 SOUTH CAROLINA COASTAL CONSERVATION LEAGUE INC Charleston, SC 150
91 TREHAB CENTER INC Montrose, PA 139
92 SANDY PESZYNSKI BREAST CANCER FOUNDATION INC East Hampton, CT 138
93 MobileMed Bethesda, MD 136
94 SCA Charleston, SC 132
95 FOCUSDRIVEN -- ADVOCATES FOR CELL-FREE DRIVING Spring Lake, MI 131
96 EHLERS DANLOS NATIONAL FOUNDATION Gadsden, AL 130
97 Cooperative Ministry Columbia, SC 130
98 SafePlace Austin, TX 129
99 CPE Washington, DC 127
100 DETROIT INTERNATIONAL JAZZ FESTIVAL FOUNDATION St Clair Shores, MI 127
Nobody has contacted me so maybe this is a flop. Although at least it gave me a chance to plug it again, in a different way.I'm trying vote swapping on ME/CFS forums!