The WPI's NEW Clinical Board

[George]

From Dr. Deckoff-jones blog at http://networkedblogs.com/bLuda

I just posted the first paragraph to whet your appitite. (grins)

I have been given the incredible opportunity to chair the newly forming Clinical Advisory Board for the WPI. This group will interface with a Scientific Advisory Board to interpret the unfolding science for medical purposes. It promises to be an unprecedented fusion of diverse talent. The WPI is committed to sharing any clinically relevant scientific information that may advance our current approach to the disease. Patients need meaningful treatment now, not in a few years. From my perspective as a patient, progress seems excruciatingly slow, but I am hopeful that we can bridge the gap from the lab to the clinic and bypass years of avoidable suffering. All options must be considered, no stone left unturned. Sooner rather than later.

 

[camas]

That's a wonderful pairing! It's great to hear that Dr. Deckoff-Jones seems to feel well enough to take on this big job for the WPI.

 

[caledonia]

Very, very cool.

 

[alex3619]

Hi, I really liked a reply by Joey that basically said we can learn from Dr Deckoff-Jones as a patient, clinician and researcher, but also as a person. She went out on a limb for herself and her daughter, but took us along for the ride so we could glimpse our future.

Joey said: Many patients respect you a patient/researcher/physician, but many of us can also learn from the person.

Bye, Alex

 

[Mark]

What Alex said.

And also, the good Doctor is a forum member - to her further credit - so good news for our "inside voice"...

 

[Nielk]

Congratulations to Dr. Deckoff-Jones! How exciting.
Being a Dr. and patient and having recovered enough to take this post is amazing.
Now she can be an integral part of the solution.

I wonder if she would advise all patients to get tested at this point?

 

[Cort]

Nobody is going to like my interpretation.

I think Dr. Jones has done an admirable and really very cautious job in interpreting hers and her daughter's results with anti-retrovirals and I really applaud her for her objectivity in how she's done that. The patients love her, of course but I think what the WPI needs now is for buy-in from the medical community.

I think the medical community would really like to see would be a practicing immunologist or HIV physician experienced in anti-retroviral therapies chairing the WPI's Clinical Advisory Board.

Dr. Deckoff's credentials are that she's a physician who's been treated with anti-retrovirals by another physician and gotten better and that she's a sober individual.....not that she's spent years learning how to treat retroviruses or that she herself has treated CFS. I don't think she has any experience treating CFS. How can someone who's never treated people with CFS head their Clinical Advisory Board??? The fact that she's known because of her blog - as good as it is - will not help. Obviously if Dr. Peterson was still associated with them he would be chairing that board and he would be perfect but he's not. My guess is that this will land with a thud with the medical community.

I think she gives great advice; she's been very careful to delineate the positives and the negatives of antiretrovirals at this point - I admire her alot for that. And she's been through the wringer with Lyme - she knows the territory and is invaluable that way. I just don't know if strategically, if this is a good idea for the WPI right now...I hope it works but I worry about it.

 

[LJS]

I agree with Cort, WPI reputation in the science community is awful. A quick search of science blogs and you will find many skeptics and outright opponents of the WPI for the way they have handled themselves. They need to hire people respected in the science community not just people respected in the patient community to really make the impact that is needed.

On the other hand she may be there just to advise on the experience she has had with her own treatment. There may be true HIV and CFS experts on the panel that have not been released yet, I sure hope so.