Article: The Patient Advocate Covers the Invest in ME Conference

You can view the page at http://www.forums.aboutmecfs.org/content.php?148-The-Patient-Advocate-Covers-the-Invest-in-ME-Conference

 

Thank you Chris. You achieved what set out to do here - give us a flavour of the day. Nice insights.

I'm left with mixed feelings I guess. I don't know whether to cheer, cry or shout.

Mikovits and Chia top of the bill.

The Usual Suspects in their wake.

Hooper - British Bulldog still in there scrapping (with no prizes)

Kerr - hope he swallows his pride and throws his lot with WPI

Huber - can't see Brigitte doing an encore.

 

I am very surprised by the bad reputation the patient Advocate gave to Dr Klimas- was this warranted? It sounded like a few of you that were there thought that she's done really well...

 

I thought his comments about Nancy Klimas were unfairly harsh. She has done interesting immune research and she is still interested in being involved in research (she is involved in some way in the Biobank project, as well as other things). She is primarily an MD, and is not a research scientist, so she could just have stuck with seeing patients and not got involved in research.

Though I agree that research needs to be the priority to move things forward for us. (Published research, for example will carry more clout than clinical opinion, or "anecdotal" data - well it is supposed to, unless it gets ignored, but I don't think the biomedical stuff can be ignored forever. And more people will potentially benefit from published research, than if you have a clinic without any involvement in research, where only the patients who see that doctor benefit.), I don't see a conflict between what she is doing and advancing research.

If anything, from what I can gather (I could be wrong), having the clinic, means it will be easier to have more defined patient cohorts for research. I think she was also trying to train in other doctors to work at this clinic (or one anyway) which is good as it will mean more doctors who can carry on the work.

I have not met Nancy Klimas but have seen quite a few of her talks on video/DVD and she always came across as genuinely interested not self-important. Maybe the reviewer has not come across some of the pompus asses we have come across!

But other than that I thought the review of the conference was really interesting.

Orla

 

Thanks for posting Cort, great conference - more Science - less said about the Huber the better.

 

Thank you Chris, for sharing your reports of these conferences - many of us would like to attend but just can't, and I'm grateful to be able to hear the latest from the ME/CFS researchers and clinicians through your reports. Thanks again.

 

Klimas - not in it for commercial gain at all

I too didn't think Nancy deserved to come under such harsh criticism. She has been with us from day one, speaking the truth and at times being the only one to garner any funding out of the NIH, because of her high quality work. I think it makes perfect sense to step out and run a clinic - who else is gonna do it - the govt???. She gets to see more patients this way. She has been and continues to be one of the few totally committed , in there for the long haul drs around - that have managed to keep their jobs. She is a hero in the history of this illness. This mustn't be forgotten.