Llewellyn King interviews Dr. Lipkin: ME/CFS Alert, Episode 95

[Ember]

Dr. Lipkin comments on his involvement and on funding levels:

I actually started very early with ME, although we didn’t know that it was ME at the time. When I was a resident in neurology at University of California in San Francisco in the 80s, I saw some of the first cases referred by Dan Peterson in Incline Village And then in the mid to late ‘90s I was asked by the Centers for Disease Control to investigate whether of not Borna viruses could be the cause of what was then known as CFS. And then more recently, as you alluded to, the whole XMRV controversy, which came about, you know, in the late 2000s [sic]. So I’ve been interested and sort of on the outskirts, if you will, on the periphery of this field for a very, very long time. And I have tried at various points to get into it in a more substantial way, but the resources weren’t there (3:05 – 4:00).

It’s critical, I think, that you realise that there was no funding for any sort of work, really, in ME/CFS. So the fact that we’ve got people like me and others who are now doing this, although we may seem like we’ve been involved in this a long time, we’re really not. We’ve had no resources to do anything. And these centres do include new people who help...who are fresh to the field and have the ability to make contributions. If in fact, more money had been allocated to support these centres.... There was a lot of good science that was left on the table that could have been picked up. There were applications out of Stanford; there were applications elsewhere. None of that, you know.... And hopefully we’re going to see that there’s going to be an expansion of the program (6:40 – 7:30).

 

[bertiedog]

Thanks for putting this video up, it sounded very similar to Mady Hornig's one and both are very encouraging but it does sound like drugs to treat the condition and available to doctors are still a long way off (not sure if they still work together?)

Personally I hope that at least they can come up with some recommendations regarding the gut in the not too distant future because we could probably act on that instead of the trial and error we have to do at the moment.

Pam

 

[RYO]

I think we should be encouraged that ME / CFS research is getting of the ground but the sober reality is that there is a tremendous need for disease advocacy and fund raising.

 

[Ember]

It does sound like drugs to treat the condition and available to doctors are still a long way off....

Dr. Lipin’s projection seems to confirm Dr. Klimas’ comments here:

So where are we in ME/CFS? You know, you’re looking at this thing and you’re saying: ‘Our NIH RFA is nice. It’s all about pathogenesis and what are the underpinnings. And yeah, you need to know that stuff to design clinical trials. But where is the mechanism to do a clinical trial?' (1:12-1:25)

She adds:

About eight years ago, I had my first systems-biology data in ME/CFS. I was ready to start doing this modeling then. And you know, we’ve done a lot of work; it’s not that we’ve been idle. But we’ve done it, you know, smoke and mirrors and relatively small funds. But we are...in the ME/CFS world, we have the models. We know what to do. We are ready for human clinical trial. (2:00-2:25)

 

[RYO]

Dr Lipkin's comments about Hutchins foundation are interesting. It appears their resources have been instrumental in positive developments for ME/CFS field. Are the Hutchins family from Massachusetts? Does this also partly explain strong advocacy group based in MA and the support from MA legislatures?