NIH 5 years strategic plan webinar with dr Lipkin

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Sean

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The rest of us have to keep pushing our own political reps. Definitely.

But the action at the moment is in the US, and they have by far the biggest potential pot of money, and researchers, to throw at this. Where the US goes on this, the rest of the world will eventually follow.
 
SOC

SOC

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Sean said:
Where the US goes on this, the rest of the world will eventually follow.
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With money and research? Or will they just establish policy once there are results from US-funded research?

We need ALL patients to advocate within their own countries not just for policy based on US-funded research, but for funding their own ME research programs. Norway and Norwegian patients are doing well in this regard. Other first-world countries with sufficient money need to be pushed harder to contribute funding for ME research. We are so far behind the curve in research we need all the funding we can get from ALL possible sources. We shouldn't put 90% of our eggs in the US-funding basket. If the US funding path fails (I'm looking at you, CDC), we need other research streams continuing. Diversify, diversify.
 
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Sean

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SOC said:
With money and research? Or will they just establish policy once there are results from US-funded research?
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Influences money, research, and policy. Certainly here in Australia.

I agree that patients everywhere have to advocate to their own government as well. Australia does a fair bit of medical research, for our size. But our government spends less than $100 000 a year (for a population of 24 million,) on medical research into ME/CFS. (Approx. 75 000 USD, 65 000 EUR, 45 000 GBP.) Don't know how generous that is per capita compared to other countries, but it is a tiny amount in absolute terms. :thumbdown:

But right now the critical action for ME/CFS is happening with US funding decisions. That is where the big funds and most researchers are.

Just following the money & talent. :whistle: :hug:
 
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waiting

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Dr. Lipkin made mention, several times during the webinar, that the big problem is lack of funding -- I can't recall the latest info on NIH funding -- has the total funding been reduced?
 
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shahida

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I(magine if as many as possible gave a pound a month (say), maybe via direct debit for the columbia university Lipkin study, if they can afford it. It could be publicised. I know there was the fantastic effort lat year but that could only be sutained for so long. The problem as always is trying to get the vast bulk of ME-ers to realise what's going on politically- it tends to be the same crowd making the efforts again and again. we could raise enough for his potential study in a year, theoretically .
 
Scarecrow

Scarecrow

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shahida said:
I(magine if as many as possible gave a pound a month (say), maybe via direct debit for the columbia university Lipkin study, if they can afford it.
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The problem is that Columbia is not set up for this type of fundraising.

The minimum donation is ten dollars, I believe.
 
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shahida

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Thanks for the info scarecrow. Im so frustrated at the thought that if we got more PWME aware and they donated, we could get a few projects funded.. But how???????
Is it possible to watch the lipkin seminar?
 
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shahida

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i dont't know really. i was thinking of putting an ad in my local me newsletter again if it was a 'something' that's being done; maybe a post on PR? I just saw Dr Hornig's presentation on the IIME DVD and she said they only have enough money to collect sample, no analysis. V. sad. I'm no expert!
 
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Bob

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shahida said:
i dont't know really. i was thinking of putting an ad in my local me newsletter again if it was a 'something' that's being done; maybe a post on PR? I just saw Dr Hornig's presentation on the IIME DVD and she said they only have enough money to collect sample, no analysis. V. sad. I'm no expert!
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The crowdfund team isn't working full time any more, but we are still putting info out on our social media, so I can tweet it. If you want to highlight it in your local newsletter then that would be great. :thumbsup:
 
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RL_sparky

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shahida said:
i dont't know really. i was thinking of putting an ad in my local me newsletter again if it was a 'something' that's being done; maybe a post on PR? I just saw Dr Hornig's presentation on the IIME DVD and she said they only have enough money to collect sample, no analysis. V. sad. I'm no expert!
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@Bob Do you know if Columbia now has enough funds to do the study? Didn't the Chili Challenge take place after IIME? If I remember correct someone donated $500,000. with the Chili challenge so if I'm remembering things correctly they should be able to do more then collect samples. I could be wrong, I'm so brain fogged at the moment.
 
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Bob

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RL_sparky said:
@Bob Do you know if Columbia now has enough funds to do the study? Didn't the Chili Challenge take place after IIME? If I remember correct someone donated $500,000. with the Chili challenge so if I'm remembering things correctly they should be able to do more then collect samples. I could be wrong, I'm so brain fogged at the moment.
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It's quite difficult to keep up with because they've got a number of different projects on the go, and the projects are constantly evolving or being extended. So i don't quite know where we are. Last year's crowdfund raised enough to carry out a complete study of the microbiome of the oropharynx, and obviously the $500,000 donation will make a huge difference, but we haven't had confirmation that they've actually received it, or what it's being used for. We're hoping for some updates soon. The Invest in ME conference took place on 29th May and I think the $500k donation was announced on 2nd July. So, yes, you're right, the conference info is out of date now, and the latest donations will make a big difference, once confirmed.
 
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WillowJ

WillowJ

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waiting said:
Dr. Lipkin made mention, several times during the webinar, that the big problem is lack of funding -- I can't recall the latest info on NIH funding -- has the total funding been reduced?
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Congress is working on increasing the dollar amount. I do not know how much of a real increase this is compared to inflation, but I think this year it sounds like more.

However we won't see any of it unless something changes.
 
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Bob

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Bob said:
It's quite difficult to keep up with because they've got a number of different projects on the go, and the projects are constantly evolving or being extended. So i don't quite know where we are. Last year's crowdfund raised enough to carry out a complete study of the microbiome of the oropharynx, and obviously the $500,000 donation will make a huge difference, but we haven't had confirmation that they've actually received it, or what it's being used for. We're hoping for some updates soon. The Invest in ME conference took place on 29th May and I think the $500k donation was announced on 2nd July. So, yes, you're right, the conference info is out of date now, and the latest donations will make a big difference, once confirmed.
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We have an update re the Lipkin crowdfund: http://forums.phoenixrising.me/inde...hallenge-as-donations-top-0-75-million.39371/
 
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