OMF, Ron Davis and James "DNA" Watson launch END ME/CFS Project

[Sasha]

WOW!!

I am really impressed and happy about this! So many world class scientist on the same board and the same track. I cannot believe they got Watson. If he is going to promote serious biomedical research for ME, we could get very big funding!



Good news. I am going to donate money immediately!

I agree - this is fantastic news. Those guys are going to be really connected (and I mean that in a non-Mob way).

Excellent use of smileys, by the way! Very apposite use of the happy boffin.

 

[Seven7]

includes key players (Ron Davis and Linda Tannenbaum) who have children with severe ME,
Couldn't ask for better!

TX! that clarifies and address my concerns

 

[Gingergrrl]

I just looked at Linda Tannenbaum's website "NIDA" at www.nidalliance.org and watched her video where she was speaking about her daughter who has ME/CFS. It was a powerful video and she and her family have done a tremendous amount of work to raise funding for OMI and OMF. I have no doubt this new esteemed board of researchers and fundraisers will find the missing link whether we ever get a shred of help from the government or big pharma.

 

[catly]

This is excellant news. I just gave to Ron Davis' research at Stanford. For those interested in a little more information about him you can find it here. I really think he is determined to find the answer to ME/CFS because of his son and he is an excellant talent to have on our side, as is Watson and the other names on the OMF list. OK where's the happy dance emoticon?

 

[Snow Leopard]

Seem to be a lot of geneticists on the board...

I understand Ron Davis is very serious about this, given his son has CFS. Putting your geneticist mates who have Nobel Prizes on the board might help I guess, in terms of an appeal to prestige. I'm just wondering what sort of contributions they will actually make. Watson has had rather controversial beliefs over the years (towards women and ethnicities), I'm wondering if he has put that behind him.

 

[knackers323]

This is great. Now we just need Bill Gates or similar to get on board.

 

[Sean]

Great news.

I think the back of the psych school's dominance has been broken, and they are now being sidelined.

(Can't honestly say I am the greatest fan of James Watson, he is not always the most ethical nor politically wise of people. He can also be a little too certain of his views, and we patients know where that can lead.

But he can command the attention of governments, big money, and the scientific community, so I can live with his role, albeit cautiously.)

 

[Sasha]

Seem to be a lot of geneticists on the board...

I understand Ron Davis is very serious about this, given his son has CFS. Putting your geneticist mates who have Nobel Prizes on the board might help I guess, in terms of an appeal to prestige. I'm just wondering what sort of contributions they will actually make. Watson has had rather controversial beliefs over the years (towards women and ethnicities), I'm wondering if he has put that behind him.

I haven't followed his career and hadn't been aware of that but I doubt those issues would come into play in his role on the scientific board (and even if they did, there's a whole board to squelch that kind of thing). I don't think they're going to come up in the context of biomedical ME/CFS research. I think that his major contributions are going to be the prestige of his name and his scientific network, as well as any specific expertise he might bring to the research question (I'm not sure how hands-on any of the scientific board would be on the actual research and suspect it might vary from person to person).

 

[knackers323]

Or why don't we set up one of those crowd funding campaigns?

 

[Sasha]

Or why don't we set up one of those crowd funding campaigns?

A crowdfunding campaign is usually for a specific project, such as the Norwegian and UK Rituximab trials, the OMI B12 trial, the two documentaries, or Dr Lipkin's microbiome project, that have been costed and have a target.

At present, I don't think that END ME/CFS have announced any such specific projects.

Given that the OMF set up a (successful) crowdfund for the B12 trial, I imagine they'll set up one for any specific projects that END ME/CFS want to do, if a crowdfund is appropriate. Linda Tannenbaum is a great fundraiser.

 

[Battery Muncher]

Wow! When I read this last night, I became so overexcited that I crashed a little...

I can see why people would raise concerns re: Watson's political/ethical views. But I probably agree with Sasha here - not a fan of them myself, but worth putting up with them in exchange for the sheer amount of prestige, credibility, and legitimacy that he lends to this project.

As we all know, it has been incredibly hard to get people to take this illness seriously as a biomedical/ physical illness. So to have 3 Nobel Prize winners on board - including someone credited with one of the greatest discoveries of the 20th century (i.e. the structure of DNA) - is absolutely remarkable.

Obviously, nothing has really happened yet, but this leaves me full of hope and gratitude.

 

[Snow Leopard]

I don't want to pick on James Watson too much, but keeping in mind his most recent idea is this:

Exercise benefits people with high blood sugar because it causes an elevated level of oxidative stress.

http://www.theguardian.com/society/2014/feb/28/dna-pioneer-james-watson-theory-diseases
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(14)60393-7/fulltext (editorial)
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(13)62365-X/fulltext (Hypothesis by Watson)
https://www.scribd.com/doc/210808738/Watson-Type-2-diabetes-as-a-redox-disease-Lancet-2014-pdf (Hypothesis by Watson)

It is an interesting idea for sure, but I'm not sure where this puts him on the map with regards to CFS and ME (note the opening sentence of his article).

 

[Sasha]

Wow! When I read this last night, I became so overexcited that I crashed a little...

Calm down! Calm down!

 

[Sasha]

I don't want to pick on James Watson too much, but keeping in mind his most recent idea is this:

Exercise benefits people with high blood sugar because it causes an elevated level of oxidative stress.

http://www.theguardian.com/society/2014/feb/28/dna-pioneer-james-watson-theory-diseases
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(14)60393-7/fulltext (editorial)
http://www.thelancet.com/journals/lancet/article/PIIS0140-6736(13)62365-X/fulltext (Hypothesis by Watson)
https://www.scribd.com/doc/210808738/Watson-Type-2-diabetes-as-a-redox-disease-Lancet-2014-pdf (Hypothesis by Watson)

It is an interesting idea for sure, but I'm not sure where this puts him on the map with regards to CFS and ME (note the opening sentence of his article).

I'm no judge of bioscience - I don't think his views on ME/CFS are known but I can't see OMI tolerating anyone for an instant, let alone putting them on their scientific advisory board, if they had weird ideas about the benefits of exercise for PWME (if I've understood your concern correctly).

 

[Gingergrrl]

As we all know, it has been incredibly hard to get people to take this illness seriously as a biomedical/physical illness. So to have 3 Nobel Prize winners on board - including someone credited with one of the greatest discoveries of the 20th century (i.e. the structure of DNA) - is absolutely remarkable. Obviously, nothing has really happened yet, but this leaves me full of hope and gratitude.

I didn't know anything about Watson's prior statements on women, minorities, etc, and Googled them last night and now see why he is controversial! However, OMF did not put him on the research board to make political speeches, and I agree with @Battery Muncher that he was included for name recognition and the scientific prestige that he can bring. If someone (especially a doctor) does not believe in ME/CFS and then sees that Watson (who discovered DNA!!!) is on the board, it will cause them to pause, and re-think about their views for a minute.

He is now 86 years old and could do anything he wants with his time but is willing to help us. If he starts to express views that do not support OMF's goals and purpose, I am sure they will re-think their choice.

 

[Never Give Up]

I am excited and impress BUT I would love to understand how this came about. Lately I am just not clear on intentions from the different groups, their motivations, who is associated with who. Can we trust this group or is it Pharma or Government behind it????

You know, once researchers identify and replicate findings of the mechanisms and/or causes of ME/CFS we want big pharma and governments to put big money into developing effective treatments.

 

[Iquitos]

This is great. Now we just need Bill Gates or similar to get on board.

http://www.gatesfoundation.org/

"All requests for funding must be submitted through our online portal to an open grant opportunity. Please visit our web site to learn about who and what we are able to fund and not able to fund. Funding requests sent to this email address or via postal mail will not be reviewed or considered."
(Response to my email to the foundation.)

Also see: http://biomedicalmecfs.blogspot.com/ Letter to Bill Gates

His blog: www.Gatesnotes.com

 

[knackers323]

The foundation says it won't donate to health problems in developed countries.

Does cfs happen in underdeveloped countries? This may be a way we can get him to help.

 

[Sasha]

@Marco posted that Cort has written a blog post about this:

http://www.cortjohnson.org/blog/2014/10/11/end-mecfs-mega-chronic-fatigue-syndrome-project-begins/

 

[Sasha]

@Marco posted that Cort has written a blog post about this:

http://www.cortjohnson.org/blog/2014/10/11/end-mecfs-mega-chronic-fatigue-syndrome-project-begins/

“What is needed is a total attack on the problem.” – Ron Davis PhD

I love that quote. Total war!