If you had $100 million to donate to researchers, how would you divide it?

[RL_sparky]

Well I am far from understanding your post and the "inconsistency with the result" you mentioned

I just thought you were referring to Dr. Naviaux's work in the recent Metabolomics paper that he published? I might be missing something else he is working on that your aware of and I missed which I seem to do quite often these days.

 

[pattismith]

I just thought you were referring to Dr. Naviaux's work in the recent Metabolomics paper that he published? I might be missing something else he is working on that your aware of and I missed which I seem to do quite often these days.

Yes I was refering to this paper, I thought it was bringing great hopes to us. What is wrong with his work in your opinion?

 

[RL_sparky]

What is wrong with his work in your opinion?

Nothing is wrong with his paper. The only issue is when you test the same patients using the commercial service from the company Metabolon there getting different results so there is some tweaking needed.
I don't know if the metabolomics work will lead to a biomarker but if not there are others making progress on this front.

 

[pattismith]

Nothing is wrong with his paper. The only issue is when you test the same patients using the commercial service from the company Metabolon there getting different results so there is some tweaking needed.
I don't know if the metabolomics work will lead to a biomarker but if not there are others making progress on this front.

really! I hope this problem will be fixed, I'm so sorry to learn this...

 

[Jesse2233]

I think the difference between Naviaux's / Armstrong and Davis' results came from the severity of patients. Naviaux and Armstrong tested moderate to mild patients (they were able to make it in to the lab), whereas Davis tested severe patients who were unable to leave bed. It would make sense that the metabolites would be different as more pathways are disrupted for the severe, and Davis and Naviaux will no doubt get to the bottom of it.

 

[Marky90]

I could solve it for a small fraction of that amount. I am not kidding.

I got 10 dollars, spend it well!

 

[Jonathan Edwards]

Some fun food for thought

I think everyone is missing out the most important, perhaps the only one with good enough recruitment infrastructure to produce reliable dat: the LSHTM UK ME Biobank.

If the Biobank had 10M dollars that would just about make it viable for the foreseeable future. I would the put the other 90M into a fund to which researchers could apply for grants, peer reviewed by all those listed so far.

My main concern about research at present is that it is not usin population based cohorts. Without that you can end up with all sorts of spurious answers.

 

[Daffodil]

@RL_sparky ..i just meant i wouldnt give it to lipkin without a clear timeline as to when research would begin again, in ersnest. i know there is a lot more to the lawsuit than meets the eye.

 

[pattismith]

I think the difference between Naviaux's / Armstrong and Davis' results came from the severity of patients. Naviaux and Armstrong tested moderate to mild patients (they were able to make it in to the lab), whereas Davis tested severe patients who were unable to leave bed. It would make sense that the metabolites would be different as more pathways are disrupted for the severe, and Davis and Naviaux will no doubt get to the bottom of it.

If one of them find the biomarker(s) for our disease, it would be nice to give their name to the syndrome, it would solve the problem of the appellation as well!

 

[Murph]

If one of them find the biomarker(s) for our disease, it would be nice to give their name to the syndrome, it would solve the problem of the appellation as well!

I'd be very happy to be able to say that I used to have Davis-Dafoe disease. "But I'm fine now!"

 

[Groggy Doggy]

I would start by hiring the best team possible to work with big pharm/NIH/FDA to get them onboard to start drug trials with repurposed Rx's ASAP.

Reason #1)
It's ridiculous that people have to spend their own money, each month, on treatments that are helping them remain independent. This can lead to loosing their entire savings account, their home, and eventually bankruptcy.

Reason #2)
And the folks that expend almost all of their available cognitive energy getting their health insurance to pay for some treatments, know that this situation is unsustainable in the long run. They have to enjoy their independence now, in the moment, fearing the insurance pre-approval can be taken away any time. This eventually leads to reason #1

GD

 

[unto]

I would give 70% research on new pathogens, as I'm too convinced
That ME / cfs is an infectious disease probably caused by a virus that
It remains active all the time (albeit with tall and low always contagious)
Then Chia, Mikovits, Davis ... 30% on therapies