Your OMF gift tripled this week!

If i had 350,000 in income i would be jumping for joy. And once the PEM from that activity hits i would have a helper making sure i am taken care of.
Realistically though if anyone had that kind of income they would be loaded even after the taxes.
If it were me i would make some donations to OMF but few if any of us is realistically going to have that kind of money.

 

Well, I just appreciate that whoever made that donation chose to do so. I guess I was trying to convey my opinion that, in addition to being generous, it was smart.

 

In the UK we have 'gift aid'. You sign a consent/declaration statement to the charity when you donate which gives them the right to reclaim the income tax paid by the donor. That's the basic idea. I'm hazy on the details because I'm not a tax payer.

 

I am a huge fan of Michael VanElzakker's work and integrity.

You can Donate towards specifically funding their Exercise Challenge study investigating post-exertional malaise in ME (CFS).

"Our fundraising goal reflects the total cost to enroll ten ME/CFS patients in our study".

 

From OMF:

 

https://twitter.com/user/status/1059913922537574400

 

I’m thrilled OMF are still successfully fundraising on top of the good work already ongoing. I also think there’s a snowball effect with more people learning about them and them funding really inspirational stuff. Since the awesome pineapple funds I think they have funded an extra 2 centres of excellence, one at Harvard. Given the NIH would only fund a measly 3 out of a possible 10, it’s great they have managed to step in. We need money pouring in to research and I’m glad it has been promoted on this forum, it’s just a shame many of us have no significant income, I feel guilty if I donate and guilty if I don’t.

I know someone made the point of posting on a forum designed to discuss science but the striking thing for me has been the real lack of significant papers on ME/CFS that seem to be published. I’m struggling to think of anything this year. Hopefully that will start to change soon as we see some fruits but we need many trees planted both from private and state funds. Solve are using the same methods, I support them too. And isn’t it good some wealthy people are donating significant funds to stimulate this and help “little donators” like me feel they can make a difference.

 

As posted in the Solve CFS/ME Initiative triple matching thread:

For those that use Facebook, I definitely encourage utilizing the Fundraiser platform on there if you're interested in raising money for OMF or Solve ME/CFS Initiative during this period of triple matching.

Not to try and pump my own tires by any means but just wanting to share that it's a platform that can help in this way. I put one up just for my birthday recently and was able to raise a quick $2,300 (from friends and family who wanted to help support) which by no means is much but every little bit helps, especially with triple matching. Even if you can't donate (we know the well-documented financial struggles we experience in this illness), others may be inclined to help.

I share in hopes of others that may be inspired to do the same.

 

From Linda Tannebaum:

It is my pleasure to share with you the unprecedented successes of Triple Tuesday OMF. This Triple Tuesday was our most successful yet. We did more than meet our goals, we surpassed them — raising more than $1,500,000!

We're grateful for the groundswell of support from the global OMF family and our generous anonymous matching gift donors from the United States and Belgium. We received over 3,000 donations from 32 countries. Thank you so much for being a part of the OMF family, and supporting our critical research to find answers for ME/CFS. Together, we will end ME/CFS.​

 

$1.5M from 32 countries is amazing.
But 3000 donors is a bit disappointing.

 

That's a great result for OMF.

OMF aren't the only ME charity who've been having a fundraising drive at this time, which is also the lead up to christmas, which is a time of extra costs for some people. Many will be donating elsewhere or just don't have the money. Lots of non -ME charities fundraise at this time. I notice even Wikipedia is asking for money right now. For me it's always the worst time so I'll admit I find it all a little irritating. There's 12 months in a year! I also think too much of the donation money is from the ME community. The more people we can get donating from outside the community the better, yet another problem we have.

 

Well 3000 of them at most!

Using the figure of 3000 then I think not enough is coming from the ME community.

I can understand all the reasons why people may not donate but if they don't donate when their money will be tripled then I think something needs improving. (from within the ME community )

 

Maybe it's evidence that there aren't millions of people missing....numbers of patients could well be hugely exaggerated...maybe I'm alone in my opinion but I think M.E is far less common than it's made out to be. Like in Ireland, last estimate was 14,000 out of a population of
4.5 million. We are a small country. The number of people with motor neuron disease in our country is about 350 people. We have an M.E Ireland Facebook page with 500 members. I'd never heard of the disease and my husband knows of nobody with it. We do know people with motor neuron disease. Maybe the M.E community isn't a large community at all.

 

The estimates are based on studies that interviewed thousands of random people and then further investigated ones that might have ME and diagnosed them. That method makes me think the numbers are basically correct, it's just that most people probably aren't diagnosed, especially in countries where recognition isn't high.

 

So what needs improving?

I'm tempted to say the that ME world doesn't revolve around OMF.

OMF have done very well in the amount they've raised. That's great! They're not actually asking for more money than that at present, though I'm sure they'd be pleased toget it. If more than 3,000 people donated to them do they need that extra money right now that other charities need badly? OMF, with it's large profile in the community, are not the only ME charity and just because they have a triple thing going on doesn't mean they actually need more of us to donate to them on this occasion. The tripling thing only went up to a set limit anyway which was exceeded. Job done, for now.

Those 3,000 people probably aren't donating to the vital work other charities are currently seeking funds for and that's fair enough - other people are.

edit for punctuation

 

This!

 

Personally I didn't donate to the OMF, or, for that matter, to anybody else during this time of matched donation, but I do donate on a monthly basis to other ME causes with the idea of trying to have a wider impact, rather than my donations going to the same organisations as everyone else.

Many things.

The patients who are donating already need to have more disposable income in order to donate extra. Those patients who want to donate but can't need disposable income. The wider public need to be convinced that ME causes are worth donating to, and to have disposable income available in order to do so. That'll probably do for starters.