Sept 10: CDC 'conference call' including Unger and Lipkin

[WillowJ]

Center for Infection and Immunity/ Mailman school of Public Health/ Columbia University has nonprofit status and seems to have some ability to direct donations. Maybe we could talk to Dr. Lipkin and Gilbert Smith (mentioned on the site) and get a code.
http://www.cii.columbia.edu/donate.aspx?Axul69

 

[vli]

But what fund ?
It would be easier to raise money if we had a tax exempt organization ( like us -- Phoenix Rising ) that had had a research fund or some mechanism for donations to be earmarked for specific things. This time Lipkin. But perhaps in the future something else will come up and funds need to be raised fast and It's so much easier to ask friends and family to donate if it's for a tax exempt charity ( gives it more credibility and a benefit for them )
Is such a mechanism already set up w/i PR ? If not, can it be ? Should it be ?

beaker, these are all my Qs too, and i confess i know zero about fundraising. I've posted a poll here asking. http://forums.phoenixrising.me/inde...h-raising-funds-for-prof-lipkins-study.25213/

 

[Sasha]

I agree that this could be less of an issue than is thought. but to fix this historical problem, they'd have to cut some other disease, which would be awkward.

I don't believe so - they'd have to take a tiny bit off lots of diseases. I don't see the problem. A hundred diseases get a 1% cut so we end up with !00% of the average. I don't see the big deal.

There is a case to be made for re-allocating among existing projects based on disease burden, but they don't have our QALYs down right.

That's interesting - have you got a reference?

I also think is it not a very large percentage of a federal budget to just add new funding for us (seriously, 12 million is nothing in a federal budget and would make a real difference, although it should be $150 million or more)

Totally agree. The sequestration issue isn't it - it's unfair distribution of the sequestrated funds.

 

[Sasha]

I have been visiting with various local Congressional offices in my area. $6 million was viewed by the staff in those offices as "decimal dust" in one staff's words -- e.g. it's practically NOTHING in the world of US gov't spending. We do need to work in a well-coordinated way to get funding for CFS research.

Very good point - what seem like huge sums to us are nothing to govt and we have a realistic chance of successful advocacy if we pursue them.

 

[vli]

It did occur to me while listening to Prof L that he has way more influence (I'm assuming) than other ppl trying to get federal money like say, Dr Chia. I'm not familiar with the phrase "passing the hat"--when he said that did he mean he wasn't going to spend the precious little resources/time he had to try to get funds from the US gov (and is asking us to pressure gov)?

 

[Sasha]

You are absolutely right that an application from Lipkin, especially with cohort samples in hand, should be successful. I wonder if he has submitted an application? The next CFS SEP meeting to score grant proposals is next week.

I think it would be great if a small team of advocates who understand funding mechanisms could get together with Lipkin and work on a letter for congress people. He is a hugely successful scientist with no doubt a spectacular record of getting funding and knows not only how the system is supposed to work but how it actually works and where it would be useful to put pressure, and how. We've got to put his expertise together with our numbers.

We've been having a fascinating discussion with Prof. Jonathan Edwards about the UK Rituximab trial on this thread and it's interesting how his views on how funding works at his level are different from how the rest of us might view it. I really do think we need advocates working with Dr Lipkin on this to make use of his experience and expertise in getting funding. We need to work with him so we can best help him to help us.

This is separate from the definition issue, to an extent. My point is only that a broken definition (Fukuda) is a significant barrier to quality research. A better/clearer definition with wide support would promote better research. But the advocacy efforts to get a definition are in a separate stream from efforts to get more funding.

I agree it's a major issue but I don't think all research funding must stop while it's sorted out. NIH have announced no funding moratorium while that happens. In particular, I don't think it needs sorting out in order for Dr Lipkin to get the rest of his study funding.


jspotila - I'm hoping there might be a few (one or two or three) well-qualified advocates who will pick this up with Dr Lipkin in the next few days and produce a letter for people to write to their congress people. I don't want to load you down with stuff, even though you'd be a great candidate - but if you're not up for it, I'm hoping you might know people who are!

 

[Sasha]

I'm not familiar with the phrase "passing the hat"

It means he's holding his hat out upside-down and passing it round so people can drop money in it - I took him just to mean he was asking for money.

There's a literal scene of passing the hat in the movie Cowboys & Aliens.

 

[currer]

I wasn't able to listen to the talk so have picked up what info I can here.

One thing that strikes me is - if Lipkin thinks the disease causing agent is infectious this could help us to get funding for research.

Because ME will become a growing problem as the agent is being transmitted through the population, (and we know that it passes from parent to child in many families) and because presumably anyone in the population could catch it!

So it ought to be seen as a public health priority. And they ought to put measures in place ensure that people with ME do not unwittingly pass on the disease to others.

Which means that they need to find out HOW it is transmitted.

We know that ME affects large numbers of people and that the numbers are growing.

The psychologisation of this disease has led to mistaken complacency in what could be an urgent public health issue.

This could be useful if we need to get funding for research

 

[heapsreal]

is there a way we can put a donations fund/bank account that belongs to here and then when we reach a target we pass it on to lipkin. i think if we aim for small targets at a time eg say $10k maybe reasonable for this site??

I wonder if we can get some guides from lipkin on cost of certain specific studies eg spinal tap study so we can aim towards that or gives us an idea of what we have done.

We as in us PR folks can post things on other sites, facebook etc to get people to donate to the PR lipkin study??

 

[vli]

is there a way we can put a donations fund/bank account that belongs to here and then when we reach a target we pass it on to lipkin. i think if we aim for small targets at a time eg say $10k maybe reasonable for this site??

I wonder if we can get some guides from lipkin on cost of certain specific studies eg spinal tap study so we can aim towards that or gives us an idea of what we have done.

yes opinions/help on these questions please!!!

 

[aimossy]

I would like to know about all the significant studies with the most promise and robustness and where I can donate to them.

 

[vli]

One thing that strikes me is - if Lipkin thinks the disease causing agent is infectious this could help us to get funding for research.

Because ME will become a growing problem as the agent is being transmitted through the population, (and we know that it passes from parent to child in many families) and because presumably anyone in the population could catch it!

thing is, even though Lipkin compared us to the aids patients of the 80s there is like I said one significant difference: WE'RE NOT DYING OF IT. People may dislike my saying it but we're not dropping like flies due to ME, hence, there has never been that fear associated with aids as there is with us, and that is also because there're CLEARLY many many married PWCs whose spouses are not sick! There're also of course PWC parents with children who've NO ME.

 

[vli]

I would like to know about all the significant studies with the most promise and robustness and where I can donate to them.

well as far as researchers go i don't think anyone's held in greater esteem than Prof Lipkin...

 

[alex3619]

I don't know the technical details, but I was told our "lower function" is of a completely different type from that of people who are just deconditioned.

It would be nice to find out how it differs from deconditioning.

 

[aimossy]

and how to donate etc. I mean far out how much do people end up spending on supplements like I have that have often made me worse. Thanks to all who have informed on the conference call.

 

[alex3619]

I was under the impression that one day testing is sufficient to find your aerobic threshold, but the PEM results specific to ME (and differentiated from deconditioning) are shown on Day 2. Hence while a one-off exercise might help in determining your limits for pacing and such, a two-day exercise was needed to differentiate between deconditioning for research, diagnostics, and/or proving disability.

I am not sure about this first day being enough to find the AT. If the AT declines on day two, you want to exercise under the second AT, not the first.

 

[aimossy]

im still learning about the programmes of studies going on. this one sounds good! I would like to donate to this one and will donate to one at home here that I think is also good.made my decision, just need to find out how.

 

[vli]

aimossy if you like u can vote/throw ideas around here.

 

[Gemini]

Am transcribing Lipkin now (03.00 in the morning!). Insomnia has it uses after all - who would have thought?

We should get an article out as soon as humanely possible

Thanks so much for transcribing! Thought I heard Dr. Lipkin say with conviction he believes an infection is the "cause" of ME/CFS. It would be great to have this quote as he did not find active infection in blood or CSF. It also would be great to have a transcript of the list of infections he tested for so we can ask him follow-up questions like whether the cause might be an infection not on this list or whether he thinks a triggering infection is the culprit, i.e., the hit-and-run theory whereby his plans to test for past infections is really important.

 

[Nielk]

I am not sure about this first day being enough to find the AT. If the AT declines on day two, you want to exercise under the second AT, not the first.

I think that our biggest issue is the difference between day one and day two. On day two, ours seems to dip really low compared to controls and there is no other way to show this but, to take the test on the second day.

There is no excuse for totally eliminating this two day testing from the CDC study. Who else is better equipped to study this than CDC?? Even if it is on a small group of patients who are able/willing to take part. Dr. Snell was able to pull together tests subjects. How much does it cost to put up 50 patients in a hotel overnight?