Discussion in 'General ME/CFS News' started by aimossy, Aug 12, 2014.
Fantastic that a big hitter like Dr Komaroff is supporting this.
And if Dr. Komaroff donated we should all donate!
I worry that people don't really understand this research
I'm worried about that too,
my feeling is that they think this is simply "another" study about M.E.
Instead this is a much superior level of research that will be a milestone in M.E. research,
To search a cause in the microbiome does make a lot of sense,
ask De Meirleir! He is treating people trying to modify their microbiome and he has good results,
But what we need is a world class group of researchers to investigate this,
we had isolated clinician researchers doing hypothesis for several years about M.E.,
Did we have any results?
They are good but NOT enough,
We need the best of the world,
That's what we have now,
Lipkin and The Center for Infection and Immunity at Columbia ARE the best,
We just CAN'T miss this opportunity!
I completely agree, @goldberg. This is a study that could identify the very foundations of our disease. It's a fantastic opportunity for us.
504 people deem this research worthy, its not about the amount of money that makes me feel sad or whether people agree with any hypothesis or what they are researching, its about support from this community for good research and researchers in general. If we got 10,000 donations of 1$ it sends a message of support.
So far this says only 504 people support getting good researchers involved in ME/CFS...THAT is what makes me feel sad right now. There is 10,000 or more people on Phoenix rising not all active though I'm sure. How many involved in the online community, not that many compared to the amount estimated to have the illness so that doesn't help.
Hello ME organisations...where are you? Get behind some researchers who have the ability to promote ME/CFS in mainstream research it can only help the cause in general. To me it is basic logic.
To anyone who thinks it's not worth donating $5 because that's all they can afford... it really is. It sends a message, like @aimossy says.
Do it now! Especially if you haven't donated before. Do it now, and see how it feels to join in and give a boost to the researchers and be part of the solution to our problem.
Thing is @Sasha people wont donate because someone said they should, they will only donate if they deem it important enough.
In a way this crowdfund shows us as a community what we may be capable of together. If we did actually manage as a whole to get behind something and achieve something big like this, it also tells us that we can achieve other big things as a whole research wise. Maybe we will punch through that wall of stigma from government bodies with their funding purses when good researchers find fantastic evidence. I personally think it is our only way forward.
Do you guys know why Lipkin's study was turned down for NIH funding? I haven't heard this anywhere, although I've been too sick to be on the boards much in the last few months. I feel like we always hear half the story - researchers (in the case Lipkin) says he got turned down, but didn't he get reasons? and tips to improve his request? Lipkin knows how to get money from the gov't, I can't believe that the same people who sit at the CFSAC meetings can't help him through any obstacles. NIH has said in the past that the budget figure does not mean that they can't spend above that target.
Back in May, Dr. Lipkin spoke with Mindy Kitei at CFS Central about his difficulties in getting funding ...
Dr. Lipkin: I have been in competition now twice to get funded, and the people there who reviewed me gave me abysmal scores. And the critiques of my work were unfair, and one of the people who critiqued my work said, in fact, that this is a psychosomatic illness.I was floored.
The critiques also said "that everybody knows that this is a herpes virus infection of peripheral blood mononuclear cells so there’s no reason to look at the gut."
Reason enough to donate, IMHO.
The interview is here:: http://www.cfscentral.com/2014/05/candid-conversation-with-dr-ian-lipkin.html#links
I think some have worried about why the NIH have not funded.
I also wonder if people on the NIH committee that decide who get funding really don't understand the research themselves. It's ground breaking new stuff that is really high powered and honestly the other thing is their own prejudice. Their track record of the studies they have funded is not that great so if they don't fund something I personally feel that is not really a reflection of the study being not good enough, but I could see how people would feel concerned.
Some people may think that if Lipkin and Hornig are so good and the NIH will not fund, maybe something is fishy in the research? I think that's an understandable response because it would be normally a rational thing you would think to fund researchers that are so skilled.
I saw something broken down on the studies they have funded for ME/CFS. I'm sure it was from Jenny Spotila and it was eye opening and factual, and in that the studies they have funded it was clear that some of these studies, firstly would have got us nowhere and secondly some of them didn't even seem to have anything to do with ME/CFS
Based on Lipkin track record and based on the NIH judgment on what needs doing or funding I would trust Lipkins opinion over the NIH decision making process any old day. This is just my personal opinion based on my thoughts on it I respect peoples concerns about it all.
The issue of the NIH not funding high-quality ME/CFS research has come up at the CFSAC over and over again. Researchers on CFSAC (such as Mary-Anne Fletcher, who works with Nancy Klimas) have repeatedly said that when they submit proposals to the NIH on other disease areas that they work on, such as HIV, they get funded, but when they put in proposals on ME/CFS they get rejected.
Clearly, there's no reason to think that the quality of their proposals falls when they submit in one disease area rather than another: the problem seems to lie with the NIH rejecting high-quality research proposals for ME/CFS. Dr Lipkin's experience, and the comments he got back on his proposal, confirm that it's the NIH reviewers of ME/CFS proposals that are the issue, not the proposals themselves.
There's been a lot about this on Jennie's blog. Anyone who has followed CFSAC for the past few years will have seen this issue come up over and over again.
As it says here:
ME/CFS has been neglected by the US government for decades. MS has a similar disability profile to ME/CFS but affects only 4 people for every 10 with ME/CFS. Nevertheless, it typically receives about $115 million in research funding from the National Institutes of Health (NIH) each year while ME/CFS receives $5 million: so in proportion, MS receives roughly 60 times as much funding as ME/CFS. In 2014, the NIH will give$3 million to ME/CFS and $18 million to study male-pattern baldness.
Thanks all for your feedback. Yes I do know that people have brought up to CFSAC that they aren't getting funded, etc., but then several different times someone from NIH will say that the money is there but no one is submitting proposals. I can't remember the NIH rep's name before Susan Meyer, I want to say Eleanor something or other, continually stated this at many meetings.
I think that our community should complain loudly (letters/petitions) about the treatment that Lipkin's proposal received to the people that oversees this review panel. For example, if someone didn't believe that CFS is organic then why not let Susan Meyer dig into it?? I know that she has said that she's been bullied internally for being on CFSAC but then she has to go to her superiors, etc. to stop the discrimination on the review board. It may be difficult to for us on the outside to attack the low scores that Lipkin's received as we aren't privy to much of that info, but we can definitely make noise over lack of belief of CFS.
I am too sick to organize anything, just throwing in my two cents.....
You're absolutely right. The numbers are very low and it would really help if the ME organisations promoted this regularly Well anyway, thanks to this thread the number has risen to 505 now. I just sent in a donation.
Thanks for the reminder
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