1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
A disease with two faces? Re-naming ME/CFS
Persuasion Smith covers the bases on the misleading and disreputable name for our disease we've all been saddled with ...
Discuss the article on the Forums.

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

Discussion in 'Media, Interviews, Blogs, Talks, Events about XMRV' started by Jemal, Jan 28, 2011.

  1. Jemal

    Jemal Senior Member

    Messages:
    1,031
    Likes:
    60
    Dr. Deckoff-Jones has made a new blog post and it is about setting up a clinic at the WPI. It's a long post giving out quite some information.

    http://treatingxmrv.blogspot.com/
     
  2. Cort

    Cort Phoenix Rising Founder

    Messages:
    7,025
    Likes:
    441
    Raleigh, NC
    I think Dr. Deckoff-Jones has gotten this off to a great start. I love the honest talk and transparency. Here's my take from the XMRV Buzz page

     
  3. Gemini

    Gemini Senior Member

    Messages:
    398
    Likes:
    301
    Cort,

    Glad Annette Whittemore's vision of Translational Medicine...bench to bedside to bench is in your piece.

    TM is NIH Director Collins' biggest initiative this year, he plans to create an entire Institute for it and have it up and running by yearend. Perhaps we should support his TM effort and encourage him to support WPI's, financially that is, with federal grants?

    "A Government Niche for Translational Medicine and Drug Development," Science 10 Dec 2010 describes Collins' plan and the Clinical and Translational Science Awards that support clinical research.
     
  4. Nielk

    Nielk

    Messages:
    5,477
    Likes:
    6,098
    Queens, NY
    Cort,

    For your information, Dr. Derek Enlander in NYC accepts Medicare and a few other insurances.

    I can truly say that he is totally committed to the patients well being and not interested in milking them.

    Nielk
     
  5. eric_s

    eric_s Senior Member

    Messages:
    1,925
    Likes:
    73
    Switzerland/Spain (Valencia)
    In the blog it says that the WPI and the clinic are two different legal entities. I would be interested what the legal structure of the clinic will be, or is, if it is already founded.
     
  6. Recovery Soon

    Recovery Soon Senior Member

    Messages:
    380
    Likes:
    37
    AMEN. He is a Saint and so are his assistants.
     
  7. acer2000

    acer2000 Senior Member

    Messages:
    613
    Likes:
    270
    Its not true that "most CFS docs" don't take insurance or medicare. Many of the well known (mainstream) ones do. Some of them also run regular clinics, which might offset some of the costs associated with providing extended patient visit/evaluations for their CFS patients. But just from personal experience, I have seen two of the best know CFS docs in the country (Peterson, Lerner) and they both took at least some insurance policies and medicare.

    It sounds like the WPI has their reasons for not doing this, and time will tell if this decision will work out for them. Maybe this will give them freedom to do some things that the other docs haven't been able to do. I am optimistic and hope they can make more progress, because we sorely need it. But just because they chose to do it that way, doesn't mean the same is true of the other "CFS docs".
     
  8. TheMoonIsBlue

    TheMoonIsBlue Senior Member

    Messages:
    442
    Likes:
    54
    So any news on a "waiting list" to be seen at the clinic? Will they be taking patients first that have been referred from other ME/CFS docs? Patients who already have positive XMRV results? It would be helpful to know if a patient shoud have certain tests beforehand, or if comprehensive testing for all sorts of things including XMRV/MVL's can be done right at the clinic.
     
  9. August59

    August59 Daughters High School Graduation

    Messages:
    1,483
    Likes:
    408
    Upstate SC, USA
    Hunter Hopkins Center does not take insurance or medicare. They will give you insurance forms to file, but they do not handle anytihng inhouse. This was based on my experince in 2008.

    I think Dr. Klimas takes it at the Medical Center (very long wait time), but not at her private practice.

    Dr. Peterson doesn't take insurance or medicare does he??

    I think that if they file insurance or medicare they are limited on office visit time and limited on lab test that are covered.
     
  10. 5150

    5150 Senior Member

    Messages:
    169
    Likes:
    57
    shouldn't the CDC pay the bill?

    everybody who is sick and financially depleted has to come up with the money to try to get well again, while the CDC's indifference and neglect is the root cause of the real problem. it really is true that "life isn't fair".

    good luck to everyone who is impoverished from this fiasco; we will be fortunate not to die before we can afford the care (not an exaggeration).

    i know the WPI is going to help as much as possible, but there is no way they can treat all who are unable to afford the cost. And yes, the CDC should pay the bills/and hell will freeze over first.

    best wishes to all of us in surviving this god-forsaken human disaster.
     
  11. Merry

    Merry Senior Member

    Messages:
    1,358
    Likes:
    615
    Columbus, Ohio, USA
    Anyone willing to estimate the percentage of ME/CFS sufferers in the US who are able to pay for care from CFS specialists?

    Only the wealthy or the newly-ill middle-class with substantial savings?

    I'm wondering who will be able to take advantage of the care the WPI will offer. I'm not bitter, just curious.

    I realize that those who do seek that care are offering themselves up to be experimented on. So what clinicians learn from treating those with money will eventually help the wider community.
     
  12. paddygirl

    paddygirl Senior Member

    Messages:
    163
    Likes:
    20
    Betting the farm

    Hi Merry

    I don't think it's accurate to divide patients that way.

    I have my name down with the WPI for treatment and have done since early last year.

    I'm in my fifties and have a badly paid part time job but a small mortgage. I made it a priority to clear as much of it as possible over the years when my children were growing so that when I reached this age I could have some security if I lost my job or had some other catastrophe. I also didn't trust the government as I had seen a few economic meltdowns in my time.

    The best laid plans etc.. I now struggle to work at all and spend my time not working in bed.

    I will go to my bank and raise money on my house to fund initial treatment at WPI, as I think if I continue to decline as I am I stand to lose much more. Yes I am 'lucky' to have that choice, but I'm paying a price for my governments criminal bad management of the economy and total neglect of this illness.

    I think that any success WPI have in treating myself and others will filter out very quickly to the wider community, at least that is my hope for us all.

    Paddy
     
  13. Daffodil

    Daffodil Senior Member

    Messages:
    2,929
    Likes:
    909
    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..)
     
  14. jenbooks

    jenbooks Guest

    Messages:
    1,220
    Likes:
    114
    WPI has stated clearly that the cash flow from the patients will in part go to the research arm. How that's done if they're legally separate, I don't know. I assume they have figured out all the paper loopholes. I assume that's why insurance doesn't work as a model--they can't just generate income to cover treatment, they need to fund research (or feel they need to).

    Personally it puts me off, that unable to get grants, they are asking patients to pony up. If translational medicine means, Patients pay top dollar out of pocket...well...

    But at least they should be clear about exactly what the research projects are, what the "N" will be (if possible, ie how many are being studied), project their costs, and what percentage of patients' money will fund each study. If that's not transparent, it doesn't seem right to me.

    At this point, since ARVs have been underwhelming, and since any other treatments are available from other docs who do take insurance, people who go there are probably above all donating their cash and bodies to the future, in the hopes that WPI will come up with something new or different.

    I would love to know why Peterson left, though.
     
  15. Merry

    Merry Senior Member

    Messages:
    1,358
    Likes:
    615
    Columbus, Ohio, USA
    Thanks for your imput, Paddy.

    As I said, I am just curious. And my post was not meant as criticism of WPI or other medical practices that specialize in treating ME/CFS patients. Nor am I passing judgment on people who take advantage of whatever medical care they can get.
     
  16. grant107

    grant107 Jean

    Messages:
    92
    Likes:
    0
    Ormond Beach, Fl
    Only WPI is doing real studies for this illness. If I am going to a clinic it will be WPI because I love the fact that the money I spend will go directly to research.
     
  17. boomer3

    boomer3

    Messages:
    29
    Likes:
    1
    WPI is the only clinic to go to because my payments will go to research.
     
  18. Crappy

    Crappy Senior Member

    Messages:
    110
    Likes:
    9
    TX
    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.
     
  19. dannybex

    dannybex Senior Member

    Messages:
    2,285
    Likes:
    584
    Seattle
    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.
     
  20. Daffodil

    Daffodil Senior Member

    Messages:
    2,929
    Likes:
    909
    this is PURE speculation, but i wonder if peterson's leaving had something to do with ampligen and his long-standing relationship with hemispherex?
     

See more popular forum discussions.

Share This Page