Jarred Younger said in 2018 that his work on brain inflammation will be complete by 2019 Oct and that the details will be published definitely by Dec. But nothing is coming from him. He is part of OMF but of late it looks like he is working on his own. Is this just me getting this impression or what ? Is he still part of OMF ? What happened to his work on the herbal cocktail for brain inflammation ? He made a presentation "Brain on Fire" in a European seminar(Dont remember which seminar) remotely but then no details of his work is available. No actionable information is coming from him. Any update on that ? Do we have to google and find out what is happening ? Jonas Berquist gives a video update of 2 mins in which they show the Mass spectrometer and say they are working on kynurenine. Why not give the details of what they are testing in the spectrometer and also why not deadlines of the experiment ? I am fed up with OMF. They say as part of their achievement they conducted symposiums. Please dont waste people's money on symposiums. You can publish those presentations as vidoes on Youtube and use the scarce resource on testing the FDA drugs with the nanoneedle chips.
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- Thread starter AndyPR
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MonkeyMan
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He actually has less than a year. The timeline he gave in Dec 2015 was 3-5 years.
MonkeyMan
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Well put, Raghav. I have the same sentiments and questions. OMF may have brilliant researchers but they leave us in the dark far too regularly. Their mantra is "Hope" but how can we patients be hopeful if there is no communication, no regular updates, no sense of urgency as far as testing treatments that can help us patients??
Turning back the clock a little farther. It was June of 2011, when Ian Lipkin came to the Whittenore Peterson Institute in Nevada to give a talk about pathogens and ME/CFS. At the time, Dr. Lipkin felt if he just had enough money he could use his world class virus hunting skills to solve the mystery of this illness just like he had done for a number of other confounding illnesses.
A hand was raised from the back up the lecture hall to ask a question. “How much money do you think that you need to be able to unlock the mystery of this illness? He replied - one million dollars. While he was not making any guarantees just a guess based on his expertise and the new technology (high through-put next generation sequencing) that he was sure would be a game changer in his hunt. (Unfortunately, the video of that lecture no longer appears to be available online. I thought it might be a nice addition to the 35+ year collage of ME/CFS research adventures, but it seems to have disappeared ,along with his million dollar guess.)
Coming up on nine years and many millions of dollars later (remember the Hutchinson Foundation multi-million dollar donation to ME/CFS research, plus a few million from other donations and government grants). Maybe he is closing in on the answer, but so far those guesses, timelines and funds spent on research are not looking so promising. Here is to hoping that Prusty, Davis, Younger, Hanson, Naviaux etc... might be making some better guesses.
MonkeyMan
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This may not be the exact video you mention, Wally, but it's from about the same time.
It seems that when researchers like Lipkin decide that they are not going to make headway against ME/CFS, they quietly throw in the towel and shift their focus to other diseases.
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@MonkeyMan - The video was from about a year earlier and I think it was either on the WPI website or the University of Nevada’s website. It was actually a pretty good lecture that even a non science geek could follow to learn about the world of virology. Judy Mikovits and Frank Ruscetti were also in attendance at this lecture. It was just a couple of months later when Judy Mikovits would be fired from her position at the WPI.
wigglethemouse
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Here is a transcript and video of the ME/CFS talk Ian Lipkin gave to the CDC in September 2019. The team posted it on their newly launched website this week. The video has been available on YouTube for a while.
https://cfsformecfs.org/2020/03/25/a-microbe-hunter-turns-to-me-cfs/
In the Q&A (not on transcript) Lipkin made a point to state that the NIH funded research centers only received 15-20% of the funding they were promised. This means they can only do small discovery studies.
This is from the subtitles of the YouTube video posted in December
https://cfsformecfs.org/2020/03/25/a-microbe-hunter-turns-to-me-cfs/
In the Q&A (not on transcript) Lipkin made a point to state that the NIH funded research centers only received 15-20% of the funding they were promised. This means they can only do small discovery studies.
This is from the subtitles of the YouTube video posted in December
Sorry it’s no excuse. Even without any NIH money if a lab is truly interested in a disease they will be able to do one paper every couple years, just by using their other funds. I doubt his lab will come up with anything, even small discovery work, in the next year or so, making it 3 years without one ME paper.
As I said before, based on Lipkin’s rhetoric and actions, I personally feel he’s more interested in what he can do for Ian Lipkin and his lab than what he can do for us. Otherwise we would see him carving out funding from his other sources for his ME research and we would see at least a (slow) stream of papers every couple years. He’s helping himself not us and as I said in my frustration earlier in this thread that the NIH funding was better deserved by Davis and other OMF researchers!
As I said before, based on Lipkin’s rhetoric and actions, I personally feel he’s more interested in what he can do for Ian Lipkin and his lab than what he can do for us. Otherwise we would see him carving out funding from his other sources for his ME research and we would see at least a (slow) stream of papers every couple years. He’s helping himself not us and as I said in my frustration earlier in this thread that the NIH funding was better deserved by Davis and other OMF researchers!
Spent 10 seconds looking at the headlines when I Googled "Judy Mikovits WPI". I recall people saying that ME was a controversial research area---
There's another way to generate hypothesis when you don't understand a disease---
One of the things which is bugging me about the search for answers in ME is that there hasn't been a demand for a Genome-wide association studies (GWAS). There's an application by Chris Ponting in the UK; hopefully, there will be good news on that in the near future and a there's a proposal to do a study in Norway - see*.
There's a joint presentation here by Chris Ponting and Kristian Spreckley from the UK Biobank which gives some information (there's a bit around 16 minutes 44 seconds he demonstrates the power of increasing the number of people in the study --- resolution improves). The introduction to the Norwegian study gives some information on GWAS studies generally.
If you Google something like "GWAS study alzheimers gingivalis" then you'll see that these studies have helped to identify the cause of one form of Alzheimer's.
Vicky Whittemore, at an Invest in ME Conference a few years ago, highlighted that recently (in another rare disease) a gene had been discovered and that this would pave the way for drug treatments etc. I wonder if she was giving a hint --- look for funding for a gene study! Probably wrong!
Given Ron Davis's involvement why no call for a very large GWAS study? Possibly NIH wouldn't fund a "fishing expedition" of this nature.
@Ben H @Janet Dafoe (Rose49) @Simon
*https://www.ukbiobank.ac.uk/2019/12...ty-and-identify-biological-pathways-involved/
Jessie 107
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I am no longer donating to Omf, too many promises and nothing yet to offer us.
Frustrated no drug trials even yet started,
Ron mentioned ages ago that they think they have found drugs that will help us, but where is the urgency?
Frustrated no drug trials even yet started,
Ron mentioned ages ago that they think they have found drugs that will help us, but where is the urgency?
Can't think of anyone in the world more motivated than Ron Davis to understand and find treatments for ME.
OK I'd like more updates, I've stopped checking the website for updates --- pick up the email notifications. However, media stuff takes people away from science (Robert Phair - misquoted).
@Ben H
Janet Dafoe
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I can’t imagine any lab with more urgency than Ron‘s. They are all working around the clock on all these different projects. Ron has way more ideas than he has funding for. The hold up on anything that he said he’s wanted to do is funding. So, to stop donating isn’t really the best idea if you want answers out of that lab.
Thanks Janet please pass on our regards and thanks to Ron, and all of those involved.
Yes, public funding (NIH etc.) which reflects the disease burden, i.e. number of people affected and severity, has never been delivered for ME.
Please give us project wise timelines once the lockdown is over. If the project fails no problem just say so and share the project status with us at least on a weekly basis. A simple tweet will do. With the corona pandemic funds will not be available in the near future for ME/CFS research from NIH. So please do projects which will give us immediate relief. If Harvard collaboration needs funds in millions then put it on hold and test the nanoneedle and give us something tangible. Thanks.
Interesting that "With the corona pandemic funds will not be available in the near future for ME/CFS research from NIH". That was my reaction i.e. regarding the European Union Commission but then I was in contact with someone who said that this may not be the case --- the coronavirus work needs funding now so the first place to look is money which has been allocated to other things which cannot be delivered. So the coronavirus work may be funded by pooling various unspent project/grant public money.
Lets hope so i.e. funding will be available from public sources EU Commission/NIH ---.