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Plea from Dr Bell to donate to the WPI

Frickly

Senior Member
Messages
1,049
Location
Texas
Flybro, I don't know who's email address that is it but does not familiar. Please use the web address below if you would like to contribute. If you need to contact someone with a question about donations, please use the web address below.

You can donate directly through the WPI website at http://wpinstitute.org/

Or pick anyone of the following causes on facebook. All funds donated through these causes go directly to support WPI. You can also easily set up a monthly donation.

XMRV Global Action http://www.causes.com/causes/421525

Cure 4 ME http://www.causes.com/causes/399439?m=18eac145

Blue Ribbon Campaign for ME/CFShttp://www.causes.com/causes/275904?m=18eac145
 

flybro

Senior Member
Messages
706
Location
pluto
Phew Andrew thanks, I think i weent thru the WPI site too

Frickly, it was only when i got the paypal thingy in my email that i noticed where it went.

and its the same as Andrews, so I'm sure it must be right.

But if anyone knows soemthing differnt and dblades@wingfieldnevada.com is not the right recipient SHOUT.

I asked becasue I expected it to have a more WPI like email addi on my patpal recpt.
 

citybug

Senior Member
Messages
538
Location
NY
I gave $10 which is all I could afford this month. When I sent out my letter to most of my email contacts I was very nervous, but now I have the pleasant sensation that ten more people could be donating $10 because of it. I spoke to one friend who said I shouldn't be worried at all about the mailing. She gets them for other diseases from other friends. She was quite happy to read the information.
I liked including the NCI page link since it so official and describes the WPI contribution, and the nevada newsmakers interview on youtube is still my favorite video.
 

Frickly

Senior Member
Messages
1,049
Location
Texas
Thanks Kdp!

$1662.00 Total In One Time Donations!
$270.00 Total In Recurring Monthly Donations!

These are only the numbers I could add up as some did not state how much they will be donating.
:D:D:victory::victory:
 

Dolphin

Senior Member
Messages
17,567
Of course it's good if people donate. I'm doing it myself. But certainly a lot of responsability also lies with people in governments or public institutions. Because even apart from the money, you need personnel and technical assets to do research. Especially in Europe a lot of that is to be found in universities, which are generally public corporations. And unless private donors can also create research institutions (which they can, as in the case of the WPI, but i think this is something that hardly exists in Europe) they will still have to rely on governments or at least people employed by public institutions. So i think we need them either way. But all the additional money helps of course.

What i wanted to say is this. The people affected by a condition are usually the least capable group to donate. They often can't work and if they can, they will probably not be able to make much more than what they need to get by. So they will have to find other, more potent donors, in addition to themselves, to be able to really move things.
And they should be careful. Once again, it's good to donate, but i would not want anyone to be in a situation, where they get into serious troube, because they gave away something that they would have needed for themselves. If you're healthy you can easily handle some problems. If you can't afford to repair your car or pay the fuel or pay a taxi, you can walk, no problem. With us it's different. If you can't pay your electricity bill or your rent and they cut you off from electricity or you lose your apartment or house, a healthy person can handle this, for someone with CFS, it might be life threatening. So even if it's important to donate, i think people have to make sure that they can take care of themselves first and then see what is left to make a donation.

Me myself, i hardly spend any money on doctors or treatment. I've never had any form of treatment because i was not aware of any treatment that might help. And so it also does not make sense to go see a doctor often. I get a check up about once a year to make sure everything is fine and that's about it. If i see a doctor apart from this, it's mostly because i have to so to calm my family or to get a paper for government, university, military etc.
And in our health care system we are forced to pay for insurance, so i have to pay that anyway, no matter if i go see a doctor or not.

But i agree, we as individual persons should take responsability, of course. It's never good to just wait for someone to fix things for you, this will put you in the position of a child or someone unfree.
Thanks for your thoughtful post.

I have a good idea who has donated in my country over the years. Maybe not so much in the last couple of years but more in the past. I don't believe there is a problem with people giving to research money they can't afford.
One can not say the same thing with what people spend on treatments of one sort or another, many very speculative or only likely to give short-term or symptomatic relief.

It should not be forgotten that surveys show nearly everyone in the countries I know do give to charity.

I know in my country, in any one year, over 95%, probably closer to 99% of the people with ME/CFS are not supporting ME/CFS research.
Before we started collecting money, there might have been a handful of the people in the country giving to research (in other countries).
These people are clearly supporting some causes but not ME/CFS research.

People were waiting around, giving out that nothing was being done not recognising that they have the power to make a difference.

While some people may only have basic government disability payments, a reasonable percentage can be on insurance type payments where you get 2/3 (say) of their former salary. And of course, these people dont have some costs associated with working.

But what I want is people realising they can make a difference raising money. Donating themselves in only one way of doing this. There can be ways they can fundraise and/or encourage family members to fundraise or donate.

Some parents, spouses/partners, siblings and others can be willing to support. And if one gets one of these people to give a monthly donation, it can add up to a LOT longer term.

Private money can also lead to releasing some other sorts of money or resources, either at the same time as the study or the study providing pilot data which allows the researchers to apply for bigger grants.
This hasnt worked so well in the UK where there seems to be a bias but certainly in the US, smaller studies have gone on to release more dollars from taxpayer-sources.

One needs also to support existing researchers in a field or they can leave. In Ireland, there arent really researchers interested so its not so easy to access any sorts of government funds (i.e. just re-iterating the point that one needs to keep researchers in the field).
 

Kati

Patient in training
Messages
5,497
After watching Dr Unger's presentation at the CFSAC today, I just donated another 20$ to WPI because I am petrified that the CDC CFS program while reclassified in the high consequence pathogen division, they are still so unclear about the disease cohort that they started looking at metabolic syndrome.

This is scary, people. I wonder how long it will take them to find an new "leader" for the CFS program, and who this person will be.
 

fred

The game is afoot
Messages
400
I wonder how long it will take them to find an new "leader" for the CFS program, and who this person will be.

Some British chap called Wessely has applied, apparently.

simpsons-the-scream-4900914.jpg
 

Frickly

Senior Member
Messages
1,049
Location
Texas
Thanks Flybro and Kati!

$1702.00 Total In One Time Donations!
$270.00 Total In Recurring Monthly Donations!

These are only the numbers I could add up as some did not state how much they will be donating.
:D:D:victory::victory:
 

frenchtulip

Senior Member
Messages
760
Sent mine in

I finally sent in my $10.00 to the WPI. Also made a donation to the CFIDS ASSN. for research. Did my advocacy letters using the CFIDS ASSN. letter templates. Hope to make a Sock-It-To-M.E./CFS sock tonight. I am celebrating ME/CFS Awareness Day.
 

Hope123

Senior Member
Messages
1,266
If they are able to, people should try to donate to the WPI and the CAA or other small non-profits/ foundations interested in CFS research. The reason is, speaking as as a past participant in academia, in order to get NIH and other big government grants that help launch and sustain big research projects, researchers need preliminary studies to show goverments/ big pharma/ etc. "Hey! This idea has merit and is important and you should fund it." Without preliminary evidence, the bigger funders are usually not attracted.

Right now, a common rationale for not funding more CFS research is that "there isn't enough preliminary data to do a larger study looking at abnormal biomarker A,B,C, etc." But if researchers could put forth interesting preliminary results, they are more likely to get NIH funding. In fact, the NIH funding applications have an area entitled "Preliminary Results" where researchers are supposed to justify why their project deserves funding.

It's always been odd to me that the gov't doesn't fund more preliminary research but money actually is tight overall at NIH. (Side rant: US spends 50% of budget on defense.) For example, only 15-20% of all submitted projects get funded by NIH. And even putting in an application requires months of preparation. This is partly why the US is actually losing physicians to the clinical world who might make great researchers. Money-wise and dependability-wise, research doesn't pay for most physicians.
 

Frickly

Senior Member
Messages
1,049
Location
Texas
Thanks frenchtulip!

I hope everyone checks out "Sock it to ME/CFS" it's a great idea and launches tomorow!

$1712.00 Total In One Time Donations!
$270.00 Total In Recurring Monthly Donations!

These are only the numbers I could add up as some did not state how much they will be donating.
:D:D:victory::victory:
 

Frickly

Senior Member
Messages
1,049
Location
Texas
Thanks You!

Someone has donated $1000.00 in response to Dr. Bell's letter and this thread! This person would like to remain anonymous. Thank YOU! :D

$2712.00 Total In One Time Donations!
$270.00 Total In Recurring Monthly Donations!

These are only the numbers I could add up as some did not state how much they will be donating.
:D:D:victory::victory:
 

leelaplay

member
Messages
1,576
Someone has donated $1000.00 in response to Dr. Bell's letter and this thread! This person would like to remain anonymous. Thank YOU! :D

$2712.00 Total In One Time Donations!
$270.00 Total In Recurring Monthly Donations!

These are only the numbers I could add up as some did not state how much they will be donating.
:D:D:victory::victory:

woowho

thank you everyone
 

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
That's awesome Shrewsbury! Thanks so much for keeping track. We have such a wonderfully responsible, caring and committed community here. I'm very proud to be a part of it.

:victory::sleepy::In bed::victory::hug::D:wheelchair:​
 

citybug

Senior Member
Messages
538
Location
NY
Wow. Thank you anonymous. That takes us over $3000 for this month so far, and the monthly contributions are over 3000 a year ($2160 for eight months this year)!!
 

Frickly

Senior Member
Messages
1,049
Location
Texas
Thank YOU!

We have another anonymous donation for $300! Thank you so much! :D

$3,012.00 Total In One Time Donations!
$270.00 Total In Recurring Monthly Donations!

These are only the numbers I could add up as some did not state how much they will be donating.
:D:D:victory::victory:
 

Jerry S

Senior Member
Messages
422
Location
Chicago
That's awesome Shrewsbury! Thanks so much for keeping track. We have such a wonderfully responsible, caring and committed community here. I'm very proud to be a part of it.

:victory::sleepy::In bed::victory::hug::D:wheelchair:​

What starry said! Woo Hooooooo!