List of Tests for End ME/CFS Project's Big Data Study - Phase 1

[Hip]

@BurnA
Yeah, I'm not really wanting to wade into the argument / discussion here, but just reflecting upon what is said.

I think there is a tendency in ME/CFS patients, including myself, to think that we need to escalate the research into ME/CFS to highest levels of government. Perhaps we feel that once government has got involved, that's bringing out the big guns of research.

But in reality, government involvement is probably not the sort of genius level, intellectually piercing mindset that we are hoping for.

ME/CFS I think would be best brought forward with small innovative teams of brilliant minds in universities or perhaps in some pharmaceutical companies, rather than in government.

 

[BurnA]

@BurnA
Yeah, I not really wanting to wade into the argument / discussion here, but just reflecting upon what is said.

I think there is a tendency in ME/CFS patients, including myself, to think that we need to escalate the research into ME/CFS to highest levels of government. Perhaps we feel that once government has got involved, that's bringing out the big guns of research.

But in reality, government involvement is probably not the sort of genius level, intellectually piercing mindset that we are hoping for.

ME/CFS I think would be best brought forward with small innovative teams of brilliant minds in universities or perhaps in some pharmaceutical companies, rather than in government.

No worries wade in as far as you like!

I certainly don't have that impression though - that we need to escalate research to the highest levels of government,
i just want to get better sooner.

If we all have a chance of getting better sooner then we shouldn't spurn that opportunity just because it means a potential collaboration with a government agency.

PS i find it funny that you say

government involvement is probably not the sort of genius level, intellectually piercing mindset that we are hoping for.

There is far worse than the NIH out there - just look on this thread

We need to be discerning enough to judge research not by who is funding or performing it but by deciding if it is beneficial for our community.

 

[Hip]

I certainly don't have that impression though - that we need to escalate research to the highest levels of government,

Escalating the research to government has been an assumption that I have unthinkingly had; but reflecting on the discussion on this thread, it is making me re-examine my assumption.

And it is making me think that we should pay more attention to the structural side of organizations involved with ME/CFS, because some structures are more conducive to innovation.

If we all have a chance of getting better sooner then we shouldn't spurn that opportunity just because it means a potential collaboration with a government agency.

I can see that collaboration could work better, because depending on how it is set up, you may have the best of both worlds: the forward-driving innovation of a small organization or group, with the resources of a larger organization.

 

[Janet Dafoe]

I'm afraid collaborating would lead to about a year of meetings before actually doing anything. Think about the schedule for the study Lipkin supervised on XMRV.

Ron is not interested in going to a year of meetings before doing anything. That is not the idea. He wants to help make the study even better, more inclusive, more informative, and combine data to get more informative results. He wants to do tests on their samples that they can't or aren't doing. He wants to analyze the data together. And whatever else he comes up with if he can work with them. But where is the money for this? Roadblocks at every turn. (I'm Janet Dafoe, btw).

 

[Justin30]

@Rose49 I feel for you and your family and pray we all get answers this harm has stop I am in the hospital right now for ME related issues and have been hear for 2 days and they are just clueless......

A massive fail by goverments and health authorities..

I hope more large donations come forward to solve this mess. I hope the NIH Steps up.

Thank you to you Ron and everyone one at OMF.