ME Global Chronicle #10

[RL_sparky]

I received my email copy of the ME Global Chronicle today and on page 42 there is an interview with Prof. Alan Light. He had the following to say in the interview which I had not heard anything about before. He mentions studies that are spending hundreds of millions of dollars?? Anybody have any idea what he is talking about in the below comment?

http://let-me.be/request.php?19

Q: But that’s a new development then?
A: Very new. In the past there were so many grants being funded in many areas
and chronic fatigue syndrome was receiving no funding at all. This past year there
were at least three major groups that got a substantial amount of money which is
something that just hadn’t happened. And I tell you right now that the top scientist
who ran the genomics institute at Stanford is really starting to work on the Chronic
Fatigue project There’s a group of scientists that start working on this project
big time and bringing lots of money into this and there’s at least two
independently funded studies from major donors. They are spending now
hundreds of millions of dollars. Which has just not been done in the past.

 

[Gingergrrl]

It sounds like he is talking about Ron Davis (of the human genome project) and the team of scientists at OMF who are part of the End ME/CFS Project but he mixed up all the names! And no one has given them hundreds of millions of dollars, that I am certain of although it would be amazing.

 

[Esther12]

Simon also mentioned this here:

http://forums.phoenixrising.me/inde...ssive-new-newsletter.28579/page-2#post-588198

 

[RL_sparky]

Thanks for the reply's!

@Gingergrrl : I was also thinking he was probably talking about the End ME/CFS project but was confused by his comment on hundreds of millions of dollars.

@Esther12 : Thanks for pointing out that Simon had brought that to our attention as I completely missed that!

 

[Sasha]

If this thing about hundreds of millions of dollars is true, I think they could at least let a few patients roll around in the banknotes before it gets spent on research!

I haven't heard about this money from any other source than this, though - I'd love it to be true, but...

 

[NK17]

Hundreds of millions of $??!?!

I doubt that is a correct figure, but wish I was wrong and as all of us PwME, I really hope this will become reality and would do anything in my power - very little - to see this happen!

Having watched the latest video/webinar from the Dutch group, in which Prof. Light talks about his gene expression's studies on PwME, I have to say that he sounds and look quite selfconscious in front of the camera. By saying this I'm not in anyway detracting from his very important research and findings.

@RL_sparky I'm planning to read the ME Global Chronicles today.

 

[Bob]

"They are spending now hundreds of millions of dollars."

I think 'millions' might be realistic, but 'hundreds of millions' seems like an error.

Nice to read about his optimism.

 

[Nielk]

Maybe when he is stating hundreds of millions, he is talking about the full genomics project at Stanford? Not the specific "Chronic Fatigue project?

 

[NK17]

Maybe we should point the "error" out to the nice people/patients that put together TGC (Global Chronicle), so that they can make a correction or at least say that at the moment there is no official figure of funding for ME previously known as CFS.

What do you think?

I also wish that, as in this specific case, some researchers who try to work in the very neglected field of ME research, would be more careful with the words they use and more accurate with the facts that they report.

Most of them are, but some, especially some clinicians/researchers, are a bit vague and cryptic.

 

[RL_sparky]

Maybe we should point the "error" out to the nice people/patients that put together TGC (Global Chronicle), so that they can make a correction or at least say that at the moment there is no official figure of funding for ME previously known as CFS.

I emailed Rob Wijbenga and he said he was going to follow up with Prof. Light and get some clarification and would include it in the next edition!

 

[Bob]

Maybe when he is stating hundreds of millions, he is talking about the full genomics project at Stanford? Not the specific "Chronic Fatigue project?

Yes, and also the big immune project by Mark Davis, who is also part of the End ME/CFS project.
(Ron Davis is the geneticist, and Mark Davis is an immunologist - they're both part of the End ME/CFS project.)
In relation to Mark Davis' work, there's a large study of 600 ME/CFS patients underway.
A 600-patient study is very large, so that would probably be costing quite a few million, but not hundreds of millions in itself. But if added to the costs of Mark Davis' wider project, then the sums would be much bigger.
http://forums.phoenixrising.me/inde...-hard-to-find-immune-signature-in-sick.36931/

 

[NK17]

I emailed Rob Wijbenga and he said he was going to follow up with Prof. Light and get some clarification and would include it in the next edition!

Thank you

 

[Sidereal]

Ron Davis is the geneticist, and Mark Davis is an immunologist - they're both part of the End ME/CFS project.

Very confusing. I keep thinking they're the same person.

 

[alex3619]

My reading is that the genomics institute is spending hundreds of millions, and working on CF or CFS. CFS is not the only thing they are working on though. Alan Light himself considers the CF syndromes to be a number of different diseases, with different treatments needed for different subgroups.

 

[NK17]

Very confusing. I keep thinking they're the same person.

Very easy to confuse them and get confused .
In any case they both are true stellar scientists and only good things can come out of their research.

 

[Bob]

Very confusing. I keep thinking they're the same person.

Me too! And every time I work out that they're different people, I forget by the next time I read about one of them!

 

[Bob]

Here's some information about where large amounts of money are being invested via the OMI/OMF, the Stanford Genome Technology Center, the Edward P. Evans Foundation, and the CDC Multi-site Study:
http://forums.phoenixrising.me/index.php?threads/andreas-kogelnik-information-on-omi-and-omf.37062/

They discuss a number of interesting ground-breaking research studies (past, ongoing & planned), new equipment, new techniques, large genetic research studies of 800 patients, and a control cohort of 10,000 individuals. Also, they discuss huge DNA data-processing projects, and large online databases & research investigations of 3,000-5,000 patients. So, some big money is being spent. Definitely many millions of dollars.

 

[Anne]

Thank you @RL Sparky for contacting the Chronicle - I think a clarification is needed!

We are nowhere near "hundreds of millions of dollars", I don't think....

The Chronic Fatigue Initiative got 10 millions over a few years. Montoya at Stanford I think got 5 millions from a private donor. Open Medicine Foundation/Institute has apparently received funding from the Evans Foundation and some private donors, but does anyone know how much?

Here's info on the study the OMF want to do on the severely ill:
http://www.openmedicinefoundation.org/wp-content/uploads/2015/04/Big-Data-Study-long-version.pdf

About this study they say: "Our goal and plan for this initial study is to raise $1 million." Their big "End ME/CFS Project" needs much more.

It would be interesting to figure out how much of what the OMF are planning is funded and how much is still only "hopeful plans" - does anyone know?

Meanwhile, as we know, high-profile scientists are getting their ME/CFS research applications turned down by the NIH. Prof Lipkin's big gut microbiome project was turned down twice and has had to be postponed/cancelled (thankfully the amazing crowdfunding effort saved the day somewhat). Montoya has stated he would want to do a larger study on Valcyte, but has received no funding for that.

We are a long way from hundreds of millions of dollars, by the looks of it, right? Many hopeful developments, but still a major lack of funding. If we could get NIH to increase ME/CFS funding from 5 million dollars a year to 100 million or 250 million (on par with other diseases), THEN we'd be getting somewhere...!