Article: The Patient Side: WPI Clinical Director Dr. Deckoff-Jones Talks

You can view the page at http://forums.aboutmecfs.org/content.php?361-Dr.-Deckoff-Jones-Talks-on-the-WPI-clinic-treatment-CFS-cfids

 

All beginning to come together for you there Cort - it's lovely to read.

 

Thanks Enid.. After all the controversy over XMRV we forget about the other side and how exciting and innovative the clinical side of the WPI is......They really aim to make a difference...It's a real testament to Annette Whittemore's vision.

 

Thank you for this interview.

 

Thank you for this interview.

Thanks. I was inspired by Dr. Deckoff-Jones recent blogs. She has another one out...I love this part!

For me, the illness is like living with a very strict Zen master. If I engage in any serious hand wringing, I get a rap across the knuckles. Emotional PEM (post exertional malaise) is almost instantaneous for me. Tough teacher.

http://treatingxmrv.blogspot.com/2011/02/11-months.html

This is so true for me...you almost have to be a Zen master with this thing...if any doubts creep - instant PEM (or rather post-exertional relapse)....Its like the monkey is always waiting to jump on your back if your concentration lapses or get upset....

 

Thanks for doing this interview Cort. We are so lucky to have a medical reporter like you doing this work.

 

Then there's this:

One of the things I've learned about the lay of the land is that scientific research happens in individual labs that generally don't share with one another. The credit and intellectual property issues preclude much cooperation. I have a great deal of trouble with it, because real collaboration between scientists that wanted to help each other might illuminate rather than obscure the truth. Physicians are similarly isolated, but the reasons are different; it's more about being over-worked, unsupported and disengaged. For most, the reasons why they became doctors are no longer anywhere in sight.

What a rough road to scientific collaboration. Yet it can be done...I think it was the Alzheimer's coalition that showed that....they took a field that was in despair and shot it forward - because they collaborated; they came together, agreed on their central vision -and then once that was in place - everything else just worked out... It can be done - but it takes people committed to a bigger vision than their individual accomplishments.

As always very perceptive and honest blogs from Dr. Deckoff-Jones

 

Some more from Dr. Jone's Blog

http://treatingxmrv.blogspot.com/2011/02/11-months.html

People write and ask me if I agree with this or that piece of the politics, but the medicine and science is all I can handle. As an observer, I am struck by the divisiveness in the ME/CFS community, when so many worthy common enemies abound. I am a newbie to the politics.

Isn't it crazy how we tend to get sidelined into 'politics' - into choosing favorites? Who is up and who is down? Instead we could be looking at the ultimate goal and making sure everybody is aligned with THAT vision...but we get side tracked......and then we lose our power as a community. We forget what we are hear for..

 

For all the nonesense that has surrounded us - we do seem to be getting somewhere.

 

More from Dr. Deckoff-Jones blog

I am not typical of ME/CFS, by history or current clinical picture. I could still exercise for the first ten years of my illness and my symptoms were primarily neurological and vascular. Ali had a history of acute Lyme and subsequent crashes which responded to antibiotics. Neither of us had a viral onset to our illnesses. Childbirth and puberty were our triggers.

I really do think that she is right that despite our differences that we do end up with some common endpoints. I thought the idea of vascular spasms was very interesting. I know a couple of different people who are having esophageal spasms, abdominal spasms and a arterial spasms..For me I think the 'spasm' in its broad sense - of a system that just won't calm down - that does not know how to work properly and smoothly - fits.....

I just read about Dr. Dantini - who had gradual FM onset - and ended up being treated successfully antivirals. Would that that were true for all of us but it does illustrate the many different paths there are.

What is the core? That is the question...Whatever it is, XMRV or another pathogen or whatever, I think it must involve the ANS.

 

Thank you Cort, Great interview. Her last line says it all.

Having made 27, 8 hour trips to Tahoe in 2009 for Tx with Dr P, and seeing many others do the same, I became well aware of the need and opportunity for some kind of housing cooperative. People come from every corner of the earth and many need to stay for months. Purchasing a large house with many rooms would be a great investment for this purpose. Renting one isn't a bad idea either.

 

Thank you Cort, Great interview. Her last line says it all.

Having made 27, 8 hour trips to Tahoe in 2009 for Tx with Dr P, and seeing many others do the same, I became well aware of the need and opportunity for some kind of housing cooperative. People come from every corner of the earth and many need to stay for months. Purchasing a large house with many rooms would be a great investment for this purpose. Renting one isn't a bad idea either.

27 Trips 8 hour trips....all that traveling....almost as if you were from the dark side of the moon (covers head in shame at terrible joke)...where's my tam o shanter when I need it ?? there we go.....:headache::headache:

 

For anyone who's on a Mac - are the images showing up yet?

 

If you mean the emoticons with the ice-bags on their heads, yes, they're on my Mac. Very cute.

And thanks, as always, for your level-headed comments. (As well as everything else you bring to this magical wonderland that is Phoenix Rising ...):victory:

 

Thanks for the great interview! Dr. Deckoff-Jones is inspiring. The clinic sounds wonderful.

 

For anyone who's on a Mac - are the images showing up yet?

Nope, no images at this time.

Aren't they great, at the WPI? That is such a clear, wide ranging vision. It gives me great hope

Thanks, Cort, for bringing us Dr. Jamie and her wonderful plans.

 

Nope, no images at this time.

Aren't they great, at the WPI? That is such a clear, wide ranging vision. It gives me great hope

Thanks, Cort, for bringing us Dr. Jamie and her wonderful plans.

Darn - no images! Yes, Dr. Jamie has presented big vision for CFS treatment - the size off which we have not seen before. Increasing the number of patients seen, the fancy software, the outreach into the professional community.

This is a small and scattered field; cliques don't work - walling off other physicians and researchers doesn't work - the needs are too great. I hope everybody can become aligned with those goals, put their differences aside and work together.

 

Doing better by avoiding doctors, expensive treatments...?

Thanks. I was inspired by Dr. Deckoff-Jones recent blogs. She has another one out...I love this part!

For me, the illness is like living with a very strict Zen master. If I engage in any serious hand wringing, I get a rap across the knuckles. Emotional PEM (post exertional malaise) is almost instantaneous for me. Tough teacher.

That rang a loud bell with me too Cort, but I thought this statement was very telling:

“One of the most upsetting things to absorb from the epidemiological study that is my mail is that the patients who have avoided doctors and expensive treatments have generally done better than many who have pursued endless aggressive experimental treatments.”

Odd that she would find that 'upsetting', but I think it's an interesting quote for several reasons: First of all, there may be a connection with the quote you posted. There can certainly (for some patients) can be a lot of 'emotional PEM' connected with going from doctor to doctor, pursuing endless treatments, not to mention the obvious physical PEM.

Secondly, the people in our local support group who tend to do better, gradually but consistently improving over time, have been those who for the most part stay away from various forums (sorry!) and/or have found that constantly checking for news, etc., online about CFS makes them worse.

And lastly, about 5 years ago we had a guest speaker at our support group -- a psychologist (wait...) who also had CFS, and had a practice specializing in counseling patients w/CFS or fibro. Her main piece of advice was 'active resting', or I think some call it 'preemptive' resting, where one takes frequent breaks or naps throughout the day, even if one feels like they don't need to that day. (Isn't that the main way Martha Kilcoyne recovered?)

Out of the 100 or so patients she counseled, almost all of them had improved anywhere from 10-40%. Only 2 had gotten worse over a period of several years. One just kept pushing and crashing, and the other was very wealthy, and flew around the country/world, going from specialist to specialist. The last I heard (about 2 years ago) both were extremely ill.

 

Thanks for this, Cort - it is one of the most hopeful things I have heard for a long time. It's really inspiring that they're so committed to knowledge-sharing. We really need this when there are millions of us worldwide and we can't all go to the WPI! Roll on the day when we don't need those Tam O'Shanters any more!

 

Forgot to mention in my excitement that one of the most interesting things for me was Dr Jamie's comment that ME/CFS is not a heterogeneous condition as we all think, despite the huge range of symptoms; rather there is heterogeneity in the underlying malfunctions such as widespread low-level inflammation showing up as migraine in one person and something else in another. I've never heard that thought expressed before.