Pledges (moved from General Wiki Pages)

These are pledges by us to organizations contingent on their making requested improvements.

Please add in your own pledges. You can edit (change) them here at any time. Together we can make a huge difference!

Pledges are listed in the first section by the request for improvement (eg. use "ME" only) and in the second section by the donor. (pledgers pls put your username in parentheses next to your pledge in the first section). Please see pledger listings in the second section for any specifications re contingencies.


I. Donations Listed by Contingency:

A. That the organization use only the term "ME" (see pledger listings below for specifications)

World Health Organization (WHO):
$3,000 (including requiring it in the US International Classification of Diseases (ICD) 10 CM (over the US government's objection); to a research org) (justinreilly)
$1,200 (match justinreilly up to $1,200 total donation limit per year; to research) (gregf)


UK Government:
$3,000 (to suitable government sponsored ME research) (justinreilly)
$1,200 (match justinreilly up to $1,200 total donation limit per year; to research) (gregf)


US Centers for Disease Control (CDC):
$12,000 ($7k for use by CDC; $5K for causing it to be used in US ICD 10 CM without having to be forced by WHO) (to a research org) (justinreilly)
$1,200 (match justinreilly up to $1,200 total donation limit per year; to research) (gregf)


US National Institutes of Health (NIH):
$1,000 (to suitable NIH sponsored ME research) (justinreilly)
$1,000 (match justinreilly up to $1,200 total donation limit per year; to research) (gregf)


US HHS CFS Advisory Committee (CFSAC):
$750 (to a research org) (justinreilly)
$750 (match justinreilly up to $1,200 total donation limit per year; to research) (gregf)


Chronic Fatigue Initiative:
$750 (justinreilly)
$750 (match justinreilly up to $1,200 total donation limit per year) (gregf)


Stanford Chronic Fatigue Initiative:
$500 (justinreilly)
$500 (match justinreilly up to $1,200 total donation limit per year) (gregf)


OFFER:
$100 (justinreilly)
$100 (match justinreilly up to $1,200 total donation limit per year) (gregf)


International Association for CFS/ME (IACFSME):
$100 (justinreilly)
$100 (match justinreilly up to $1,200 total donation limit per year) (gregf)


Coalition 4 ME/CFS
$100 (justinreilly)
$100 (match justinreilly up to $1,200 total donation limit per year) (gregf)


Rocky Mountain CFS/ME Fibromyalgia Association:
$25 (justinreilly)
$25 (match justinreilly up to $1,200 total donation limit per year) (gregf)


Dr. Lucinda Bateman and her clinic:
$100 (to OFFER; includes respectful request that Dr. Bateman use only "ME" in communications) (justinreilly)
$100 (match justinreilly up to $1,200 total donation limit per year; to OFFER) (gregf)


Prof. Nancy Klimas and her clinic:
$500 (to Prof. Klimas' research; includes respectful request that Dr. Klimas use only "ME" in communications) (justinreilly)
$500 (match justinreilly up to $1,200 total donation limit per year; to Prof. Klimas' research) (gregf)


Dr. Jacob Teitlebaum and his clinic:
$500 (to research; includes respectful request that Dr. Teitlebaum use only "ME" in communications) (justinreilly)
$500 (match justinreilly up to $1,200 total donation limit per year; to research) (gregf)


Prof. Charles Lapp and Hunter-Hopkins clinic:
$100 (to research; includes respectful request that Dr. Lapp use soley "ME" in communications, current clinic name is very good, also thanks for calling his newsletter the "ME letter") (justinreilly)
$100 (match justinreilly up to $1,200 total donation limit per year; to research) (gregf)


Dr. David Bell and clinic
$100 (to research; includes respectful request that Dr. Bell use soley "ME" in communications) (justinreilly)
$100 (match justinreilly up to $1,200 total donation limit per year; to research) (gregf)


Fatigue & Fibromyalgia Centers clinic chain:
$100 (to research) (justinreilly)
$100 (match justinreilly up to $1,200 total donation limit per year; to research) (gregf)


chronicfatigue.about.com:
$100 (to research) (justinreilly)
$100 (match justinreilly up to $1,200 total donation limit per year; to research) (gregf)


phoenixrising.me:
$100 (to research) (justinreilly)
$100 (match justinreilly up to $1,200 total donation limit per year; to research) (gregf)


mecfsforums.com:
$100 (to research) (justinreilly)
$100 (match justinreilly up to $1,200 total donation limit per year; to research) (gregf)


Treating XMRV blog (Dr. Jamie Deckoff-Jones)
$100 (to research) (justinreilly)
$100 (match justinreilly up to $1,200 total donation limit per year; to research) (gregf)


CFS Central blog
$50 (to research) (justinreilly)
$50 (match justinreilly up to $1,200 total donation limit per year; to research) (gregf)


CFIDS Association of America:
Refrain from criticism (justinreilly)



II. Pledgers

justinreilly

Why I'm making pledges:

Orgs that give out money, such as CAA, don't just give it blindly to researchers and trust they will do a good job because those researchers are professionals. If a researcher wants money, they have to submit a proposal to the org and jump thru whatever hoops the org puts up. And this money wasn't earned by the org- this money is ours, scraped together from social security checks.

My point is, this is our money that we could put to good use by spending on ourselves- for medical treatments, or delivered healthy meals, etc.- if we are going to give it to an org, let's make sure those orgs are doing the most possible good with our money by requiring them to improve (These orgs do the same thing with their grantees with our money). I feel we owe this to ourselves, to these orgs and to all pwME.

I don't want anyone to feel like I am trying to be their boss, and dictate what they can say with money. That's not the mindset I have. I realize that these contributions are chump change in the scheme of things; but it is the very best I can do. I'm stretching. I'm trying to put my money where my mouth is; I'm asking people to do what I feel is best for us all, so I feel it would be good to pitch in for the cause too if they are big enough to consider my/patients' opinions and take the effort to make a change.


Note on my pledges:

i don't anticipate writing out checks for $18K (especially anytime soon)- for example if CDC by some miracle changes the name tomorrow, then I will scrape together $7K and send it in, but then the other orgs will pretty much have to change their names, so I will reduce my pledges to them at that point.

If I had $18K sitting around, I wouldn't reduce my pledges at that point, but since that money would be putting me in serious debt (if i could get loans for that much anyway) and taking medicine and food off my table (as is the case for all of us), I'm going to have to be ruthlessly efficient in my giving.

So, I'm going to adjust my pledges downward or upward as circumstances warrant (but if an org changes it's name I will honor the current pledge I have up; so if every org changed their names at once, I would honor the full current pledges- $18K at this point; careful what you wish for, i guess!)

My contingencies (justinreilly):

1. Use "ME" (and "ME ('CFS')" or "ME (CFIDS)") exclusively.

Using "ME ('CFS')" or "ME (CFIDS)" in the name of the org is ok on a temporary basis for transition (the donation will be made over time in this case).

Please note that use of "ME/CFS" or "CFS/ME" isn't sufficient. Must use in org name and always when referring to the disease (except in quotes (and parentheses where possible) when necessary for clarity).

For example: the donation will be made to CFI when it changes its name to "MEI" and uses "ME" in communications.

This is practical. I do it with my own org, ME Law & Policy Center. You can google it to see examples. The letterhead is "Myalgic Encephalomyelitis Law & Policy Center." The first time I mention the disease in a letter I use "Myagic Encephalomyelitis ('Chronic Fatigue Syndrome')" to introduce readers to the term "ME." This provides clarity but makes it clear that "CFS" is a less desirable term by including it in parentheses and quotes after ME. After that I use ME exclusively including in the signature line, unless using "CFS" or "ME ('CFS')" is required for clarity as in my last sentence. If I can do it, you can do it!

Fun Fact: Having "CFS" in your domain name doesn't make you appear higher in a google search for "CFS"! This is because Google looks at your keywords/tags you list for google. Just add "CFS" and "Chronic Fatigue Syndrome" to your keywords/tags. Sites phoenixrising.me, CAA and PANDORA without "CFS" in either their org names or domainnames (internet address) come up at the top of google search results for "CFS." If they can do it, so can you!


$12,000 for CDC
- ($7k for use by CDC; $5K for causing it to be used in US ICD 10 CM) (to a research org) (justinreilly) (to a research org) for CDC to change "CFS" to ME.

$3,000 for
- WHO (including requiring it in the US International Classification of Diseases (ICD) 10 CM)
- UK govt

$1,000 (to a research org) for NIH.

$750 for each org:
- CFI
- CFSAC ($750 to a research org)
- Stanford CFI (to Neuro-Immune Diseases or the like- they treat & study more than just ME)

$500:
- OFFER

$250:
- International Association for CFS/ME (IACFSME)

$100 to ME research:
- Bateman's clinic
- Klimas' clinic
- Teitlebaum's clinic
- the Fatigue & Fibromyalgia Centers clinic chain
- chronicfatigue.about.com
- phoenixrising.me
- mecfsforums.com

I won't criticize CAA anymore if they use only "ME."

I will match any pledged donation that Justin makes, for an organisation that changes to using the name ME, and I am increasing my limit to $1200 per year.

Magnificent work Justin.

I thought this was a wiki so anyone could go in and change a 'post' to add their pledges. Going to look into it.