Letter to Dr. Coffin

[Navid]

Then why invite him to speak @ the state of knowledge of ME/CFS?? Seems like he was there just to dispute Judy. Why only Judy? Why weren't there opponents there of other researchers? Say, someone disputing Chia or klimas or light? Why is only Judy being disputed? When all research can be called into question for any reason...because Judy's research has made the most headlines? Hogwash .seems odd they just had a non cfs expert to dispute Judy.

this is a great point dsd? we need to ask vernon and mangan this. noone elses theories are set in stone as fact, why were they not challenged....especially that pesky little natelson. i think coffin/stoye and the cdc are covering something up.....sorry to say this...i am usually quite optimistic and hopeful that the truth will bear witness and set us free but more and more i lose that hope with this disease and the retroviral connection....there is too much attempted burying going on.

thanks

 

[eric_s]

But i think Natelson's work about proteins in the spinal fluid could be extremely helpful for us, so i don't think we should be bashing him. I also didn't like his "it's the brain, it's the brain" line again and again, but i hope they will pursue what he has found. He and others.

 

[ukxmrv]

Eric, even when he doesn't find any consistant viri in spinal fluid and brings that up at a meeting in a way to try and discredit XMRV?

Sometimes people we hope are on our side say and no foolish things. In lots of ways the meeting was like a bunch of show-ponies competing for their own pet interests.

Lets hope that he does better in the future. I'd certainly not single him out and launch a campaign. Just note it, and see what he does from now on.

 

[Sing]

Competition or Cooperation

Looking at all this from a general perspective, the purpose of such a conference is cooperative--sharing knowledge and expertise with the purpose of advancing understanding and research into ME/CFS. But, these scientists also work in a competitive framework, not only with some of their ideas, but in terms of research opportunities and funding. The structure, experience and training of these doctors and scientists, and their world, is competitive, AS WELL AS cooperative.

I don't think we need to go into despair and anger over signs of competition--this is part of it. And it helps motivate some people to work harder and get ahead with their approaches.

But, the most useful thing we can do is to try to encourage cooperation as well as to stimulate motivation. Thanking people, telling them over and again about our reality and needs--these are motivators. Not putting people down is important as we want them working FOR us. Maybe they have a piece of the puzzle yet to be discovered.

Let's try to stimulate cooperation, knowing that the course won't always be smooth or logical. Keep these show ponies, or race horses or team of draft horses--whatever the metaphor--moving in the same direction!

 

[ukxmrv]

I don't know if they are are moving in the right direction, Sing. Sometimes a bad dominant horse can pull over an entire waggon. Just to keep that metaphor going...

I'd rather single out and thank the researchers who do appear to be making progress and try to cull the ones who aren't helping.

By all means, we should be encouraging them to co-operate, but when they aren't doing so and don't appear to ever be in a position to help us, then we should be saying so.

If you read "and the Band plays on", you'll see that the same rivalries are in play.

Also in "and the Band plays on" patients were fighting neck to neck, but there were still good doctors who were willing to investigate/help. We need to find these doctors and stop wasting time and resources on the no-hoper's.

PWAIDS managed to set policy (see the Larry Kramer "we are not crumbs" speech and they didn't use a soft-softly approach. We need to use methods that will work for us.

 

[Sing]

Thanks, ukxmrv, for going on with the metaphors-it helps me understand as that is how I think. I appreciate what you said and it makes a lot of sense.