Dr. Deckoff-Jones talking about setting up a clinic at the WPI

floydguy

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You can't please all of the people all of the time. I hope they don't compromise their values in what they think needs to be done for superior treatment and research. That won't help in the end. In the short term many people will probably be left out but in the longer term it will be more beneficial. A lot of people seem to think that money grows on trees. I am sure they could put together a cheaper business model but it would end up looking like the equivalent of a Fibro and Fatigue Center.
 

eric_s

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What JenBooks said.

The WPI is doing exciting work, but there are many other docs and clinics out there, most of them are not 'name' docs. But even Klimas' clinic in Florida takes some types of insurance, plus she has a better track record than even Cheney -- actual recovered and recovering patients. Rare yes, but true.
Hi Dannybex. I would be very much intrested in the track records of different CFS docs. Are there any reliable numbers available? Or how do you come to that conclusion? Any info would be much appreciated. Thanks.
 

eric_s

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Well said 5150.

Human Disaster is a great term.

Merry, I am bitter. All the assets I use to have now Drs. have them, and I am still ill. I wish we were living in the old west, when shooting people for breaking their word was accepted.
If they really have broken their word, you don't have to accept it. The problem is wheter you can prove they have promised you something they didn't keep.
 
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We don't yet know who they will hire, for what money, and how experienced those doctors will be in treating an extremely complex illness with many different causes. The best doctors out there have clocked years of experience, and are still daunted by the challenges and only occasionally successful. To assume that WPI out of the gate is any better--what is that assumption based on?
 

floydguy

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We don't yet know who they will hire, for what money, and how experienced those doctors will be in treating an extremely complex illness with many different causes. The best doctors out there have clocked years of experience, and are still daunted by the challenges and only occasionally successful. To assume that WPI out of the gate is any better--what is that assumption based on?
Yeah, it's probably worth waiting to see what they come up with. But on the other hand you can count on that hand how many "best" CFS doctors there are. They are not playing in a crowded field.
 

Daffodil

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the difference will likely be that the WPI will try things others may be afraid to, like rituximab or something a little new or risky..?
 
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the difference will likely be that the WPI will try things others may be afraid to, like rituximab or something a little new or risky..?
You might be right about that, Sue, and that would be interesting, but I hope only the absolute sickest-refractory-to-all-other-treatment patients get "compassionate" use experiments, because they can backfire.
 

floydguy

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You might be right about that, Sue, and that would be interesting, but I hope only the absolute sickest-refractory-to-all-other-treatment patients get "compassionate" use experiments, because they can backfire.
I hope that remains between them and their patients and are not bullied by those who are "concerned" about what they deem appropriate.
 

acer2000

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the difference will likely be that the WPI will try things others may be afraid to, like rituximab or something a little new or risky..?
I know this might not be exactly what you meant, but I actually hope they don't just "try stuff". CFS docs have been doing that for years and nobody has kept good track of what works and why, and what doesn't and why. I really hope some real clinical trials are done and papers written measuring objective markers of functioning.

I am sick of the ad hoc approach that has been used in the past. I understand why it was done (no research), but now with the WPI we have an opportunity to do actual research. So it should be done.

For instance, some people anecdotally feel better on IVIG, or LDN, or whatever. But someone needs to study whats actually going on there in a real trial. Measure immune markers, pathogen levels, cognitive functioning, exercise capacity - against a placebo arm. Its the way science works for a reason, and its the only way to move the field forward.
 
C

Cloud

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I had a great GP a few years ago who took Medi-Care and she also billed the patient a cash co-pay with it. She had to label the co-pay as payment for a separate service....a service which she did provide during the same visit...."Holistic Counseling" (which Medi-Care didn't cover). So, for a 1/2 hour visit, she billed Medi-Care for the portion of the services they covered, and me a $25.00 co-pay for the rest. This allowed her to afford to continue accepting Medi-Care. But, the rules may have changed since then. Also, billing both (rather than one or the other) Medi-Care and Medi-Caid, may be a different story.

Dr Peterson does bill Medi-Care. And let me tell you, I have never seen such a master of medical justification for insurance coverage of services; Nothing is denied coverage with him. He also allows credit to us with financial limitations. I know he has gone through some very rough financial times in the past caring for patients who couldn't pay.
 

Cort

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i think peterson takes insurance. dr. lerner takes medicare (i think). dr. brewer takes insurance (in fact he takes only insured patients). dr. levine in NYC takes insurance.

even if WPI doesnt take insurance, dont some insurance plans allow you to claim something? (i'm canadian so i don't know..)
My sense has been that most practitioners leave it to patients to file and that insurance does cover standard tests and doctors fees (with limits) and that most of the rest is up to the patient. Glad to hear some practitioners still handle the insurance side. My first doctor had an employee who had an office of her own and whom, I believe, spent much of her time doing insurance....
 

leaves

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Klimas makes a special receipt that you can send to your insurance, mine reimburses it and I believe Medicare too
 

Cort

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, my
I know this might not be exactly what you meant, but I actually hope they don't just "try stuff". CFS docs have been doing that for years and nobody has kept good track of what works and why, and what doesn't and why. I really hope some real clinical trials are done and papers written measuring objective markers of functioning.

I am sick of the ad hoc approach that has been used in the past. I understand why it was done (no research), but now with the WPI we have an opportunity to do actual research. So it should be done.

For instance, some people anecdotally feel better on IVIG, or LDN, or whatever. But someone needs to study whats actually going on there in a real trial. Measure immune markers, pathogen levels, cognitive functioning, exercise capacity - against a placebo arm. Its the way science works for a reason, and its the only way to move the field forward.
My sincere hope and guess is that they are set up to analyze treatments methodically;... They have a research arm which means they have the capacity to statistically analyze their data; this, in my opinion, is what has been missing in this field for so long. Dr. Peterson and Dr. Cheney and Dr. Klimas and the others have been doing great work for so long but because they don't have the infrastructure to analyze it's all anecdotal, and Dr. Peterson's case, it's mostly unknown to the public - except for enticing bits of information given to us by his patients.


This was one of the (several) encouraging things in Dr. Deckoff-Jones blog

Whatever care they have had has been idiosyncratic, hit or miss. Whole families need to be hooked in to appropriate care. CFS parents with autistic kids. There's never been a systematic approach to either illness.
They want to hook together the NEIDS in CFS families...Think how exciting it would be to uncover similar findings in people with CFS and family members with autism and other disorders....Think what THAT paper would look like! That could really open things up - and its clear that's the kind of thing that they want to do. They want to systematically plough through things. None of our doctors, working by themselves in their little offices have been able to do that. This could be a big deal.
We could really use well grounded analyses of the use of anti-viral's, etc. in this disorder. I would imagine that is a core mission of the WPI...Of course that takes the money to hire the people to do that....
 

Cort

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We don't yet know who they will hire, for what money, and how experienced those doctors will be in treating an extremely complex illness with many different causes. The best doctors out there have clocked years of experience, and are still daunted by the challenges and only occasionally successful. To assume that WPI out of the gate is any better--what is that assumption based on?
It'll be interesting to see who they hire. What the WPI provides, in my opinion, is the opportunity to move things forward much more quickly because they have the infrastructure. Nobody else has a research lab connected to a medical clinic.

Dr. Deckoff-Jones did refer to the limited treatment options, as I remember...I think Jenbooks is right...They'll be stuck in the same way other doctors are stuck. It's not like they have a magic bag of goodies that the other doctors don't have. Over time, though, I think the clinic/research collaboration will pay dividends and we will see new treatments and new ideas coming out of the WPI....They will, given the funding, open up the disease on the research end and apply their understanding on the treatment end.

With regards to insurance and all - it sounds like they didn't have any other choice about how to do this. I was happy to see they will have a pro bono program.
 

Cort

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I really like this:
I really like this - she has a large vision and alot of good ideas.

Medical decision making will be influenced by continuous interaction with the research lab and physicians around the world. We're going to keep track of a large number of patients, so there is an opportunity to contribute to the greater good of the community. We are going to have doctors who are not wedded to their particular black box protocol and who are willing to consider all therapeutic options for each individual they care for, whichever neuro-immune disease cohort you fall into.
 

5150

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Above all else that WPI has for us, is Judy Mikovits. Her background in developing drugs, her obvious staying power in the face of adversity, the steadfast committment to patients, and the depth of her intellectual knowledge about our disease: all unmatched by anyone else.

The level of trust that most patients have in in her is at the top, and why not? What she and Annette have accomplished is awesome, and would be even more so were it not for the unimaginable political maze that has emerged. I have felt from the first time we talked that she is our best hope, and it's a huge weight that she has accepted on our behalf.

At some point in this battle, one must turn to trusting someone else to provide the answer to "what's wrong?". I choose Dr. Mikovits as my last best hope, and know that whatever the WPI implements will be the leading edge of treatment. I trust her.

Now if we can just remove the bozos who are getting in the way, we can all recover.

Cheers,

5150