Back to work

I’ve accepted the position of Director of Clinical Services for the WPI, or the Center for Neuro-Immune Disease as the clinic will be called. I am currently recruiting in earnest. Physicians, nurses, PAs, practice manager. We are planning to open in May, but that is of course completely dependent upon finding the right doctors. A few good men or women. If you are out there reading this, please get in touch. It’s a phenomenal opportunity to be part of something unique from inception. The space is amazing and Judy’s lab is down the hall. I’m still too sick to rely upon this body to see patients scheduled a long way in advance, but I have a background in Emergency Department administration, physician recruiting and management. And I know the enemy intimately. In fact, all of my experience, as a doctor, a patient and the mother of a patient, seems a part.

I see it as a primary care emergency. There are already a huge number of patients on an interest list, even though a trip to Reno is a daunting proposition for most. My mail is full of tales of unbelievable neglect by the medical profession and the care that has been rendered has often been more harmful than helpful in hindsight. Most are lacking a local physician with even a basic understanding of their illness. 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.

Since many patients will be traveling to be seen, and many have never had a chance to tell their story to a doctor who wasn’t trying to escape from the room, first visits will be two hours, revisits an hour. For those needing long distance follow-up by Skype or phone, it will be available with your physician or physician extender. Continuity of provider will be a goal, but there will be continuity of care that will allow transitioning easily to a new doctor if there is no chemistry or if there is staff turnover. We are forming a Physician Working Group to help us think about a decision tree. Consensus is too much to expect, but I’m sure we will learn a lot and it will shape the thinking of our doctors. Patients should be able to expect a uniformity of approach, but not a cookie cutter protocol.

I’ve looked hard at accepting insurance and unfortunately have concluded that it isn’t possible to offer quality care to this group of patients at current reimbursement rates. Medicare/Medicaid simply won’t pay the bills. Private insurance generally doesn’t cover out of state care anyway and patients are going to come from overseas. Any way we structure it will be unfair to somebody. Whatever fair physician fee we will need to charge, the travel costs will be the biggest chunk anyway. I have read rumors on the internet that range from the WPI is going to see patients for free to it’s going to cost some crazy amount. It looks like it will have to be a cash practice, hourly fee to be set, but I can say for sure it will be at the lower end of the CFS/Lyme/alternative doctor fee scale. We will provide a superbill and documentation to support a claim. Fully operational, the clinic should generate income that will be donated back to the WPI and the research, percentage of gross to be announced at year end. We intend to have a fund for patients who otherwise cannot access care as soon as we are in the black.

When I started this blog, it was pretty much of a personal rant from the perspective of a disabled doctor. I have a bigger responsibility now, but I want to continue to share my experience openly. One of the many unusual things about the people running the show at the WPI is the clarity of their intention to help. A major intention of mine is to end any feelings that there is something worth knowing that is secret. Secrecy in the face of a public health emergency is a travesty. Anything but collaboration to ameliorate the unbelievable suffering is intolerable. Going forward, what we learn will be incorporated into the thinking of mainstream physicians everywhere so that care will be available locally. At this point the treatment options worth considering are limited. With a large patient volume and a group of physicians sharing with each other and with the scientific team, it should be possible to look at these options systematically.

Down the road, I’d like to be able to offer comprehensive care, including an extended stay to begin rehab, though it’s just a twinkle in my eye at this point. We will offer the opportunity to be seen on more than one day during a trip. We’ve traveled for care to be seen for an hour and it’s a miserable experience. There’s a wonderful opportunity in Reno for someone to take on a Ronald McDonald type house, if you are out there reading this.

We are in the special position of being a startup, so we’re going paperless. I’m looking at Electronic Medical Record systems now. We will be able to search charts horizontally, by medication or other intervention, symptom, particular abnormal lab result, pretty much anything we want. Many who write want to help in some way and there will be collective value in contributing to our database. The doctors on the frontline will be sharing with the best and most experienced clinicians and scientific minds from around the world; they will know what the current options are and how to think about them for a given individual. My vision is to create what I needed fifteen years ago when I first became ill, and again seven years ago when it happened to Ali and my husband. We were never even diagnosed properly due to the incredible ignorance surrounding this disease. We are going to change all that.

Leaving for Reno again on Monday night. I’ll do the wheelchair thing and use oxygen in the plane this time. Pace myself while I’m there. Grumble. Grumble.

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49 thoughts on “Back to work

  1. >Very exciting times!!! Jamie, do you envisage that it would be at all possible for those of us who cannot get to Reno (I am in Australia and can't even ride in a car let alone a plane) to receive guidance through the clinic via our own local Dr? I know my Dr would be very keen to work with the new clinic in order to better help his patients here ….

  2. >Hooray, hooray! We only have to wait till May!

    My excitement is getting the better of me. You see, I have been dreaming of a treatment center like the one you and WPI are going to be opening for more than 20 years.

    Thank you for sharing so many of the details here. This is a new day for people with M.E. and other neuro-immune diseases, and with the new WPI Center for Neuro-Immune Disease, it is going to be a much better day!

    Patricia Carter
    XMRV+, 24 years M.E.

  3. >Good luck, Jamie!

    You're right on the medical neglect part — when I was seen by an insurance company consultant, he muttered something about how did the doctors expect me to get better without treatment, and noted that their refusal to even give me something as basic as sleeping pills had resulted in such severe physical deterioration that I would never recover enough to return to work.

    Confirming what I'd been thinking myself — how DARE they accuse me of "not wanting to get well because then I'd have to return to work" when, in fact, I was telling them exactly what to prescribe that WOULD get me back to work! The problem was never me, it was always doctors who refused to write even reasonable prescriptions, apparently unwilling to accept that untreated illnesses are guaranteed to get worse.

  4. >Thank you Dr Jamie, for expending what energy you have on behalf of the patient community.

  5. >Hi Jamie,

    Thank you for telling us your ideas on how you are going to put this together. I know that whatever you decide will be good.

    4 decades sick, bedridden except bathroom.

    By the way, do you have ideas for people who are bedridden and housebound?

    Samuel Wales

  6. >This sounds really hopeful. I can't wait to see that what comes out of it. I highly doubt the Veterans Administration will work with you but I am glad for all of those you will be able to reach out and help!

    God bless you!

  7. >Good of you to update the community. Very happy about transparency going forward. Altogether very hopeful! Don't wear yourself out here!

  8. >Thank you so much for everything. Your stories. Your blog. Your work. This is such and exciting time. I hope to make the trek out there once the clinic is up and running.

  9. >Good news/bad news. Mostly good news, and I'm thrilled that the clinic is getting closer to being a reality and that you are heading up the effort. I'm also very grateful to you for keeping us all informed.

    The bad news is of course that Medicaid/MediCal/Medicare won't be accepted. I know that there are other clinics that are part of the UNR system of care which do accept public insurance.

    You write, "We intend to have a fund for patients who otherwise cannot access care as soon as we are in the black." For the WPI to do accept these health plans covering many of the poorest of us would at least help to defray the cost of seeing us. So many of us who have been paupered by this illness.

    Even the low end of specialists' fees are so far beyond what I can pay. I'm a sick single mom with two sick teens, trying to survive on disability. And I know I'm not anywhere near being the most disadvantaged ME/cfs patient. I know there are those have no health coverage at all, and those who are homeless. Can you consider a sliding scale?

    Believe me, I hate to find any fault at all with what is otherwise a dream come true for so many. I just know you folks can not only build it (and they will come) but you can build it better. Please reconsider.


  10. >This is very exciting news. Congratulations, Jamie!

    My admiration and respect for you and the good people at WPI grows with each new announcement – hope continues to add up – thank you for your dedication, courage and tenacity, you are an inspiration. May you grow stronger in health and wisdom every day.

    I plan to be in Reno and be a patient one day soon.

    15+ years ME/CFS (have lost track of how long)

  11. >Exciting things.

    But… You need to figure out how to take Medicare or insurance. Many of us haven't worked in years and are barely getting by on SSI. Just because other CFS clinics take only cash doesn't mean it's the right thing to do. Dr Lerner and Dr Peterson take insurance and Medicare and they still run clinics… Most CFS patients have Medicare as their only coverage and desperately need help. Please reconsider the decision not to take insurance/Medicare.

  12. >Can you look into offering consultation for treatment with GP's internationally? Also, how about creating an on-line best-practise knowledge center for physicans and patients? This would help create international standards for diagnosis and treatment of ME.

  13. >Congrats and all – it's very exciting. Thank you so much for sharing your visions with us, Dr. Jamie!

    I agree. I became very disheartened when I read you wouldn't be taking Medicare and also hope and pray you will all reconsider.

    Think of it this way – many with Medicare/Medicaid wouldn't be able to travel. You are right, that is the biggest expense. So I would think the bulk of your patients will not be Medicare beneficiaries. But you would be offering equal opportunity to the very disabled you are trying to heal.

    I also have a supplement which covers the 20% Medicare does not. Maybe you also charge a reasonable out-of-pocket co-pay, so you can recoup a little more money? Just an idea.

    Continued good wishes on your and the WPI's success. Look forward to more installments. And thank you for considering our suggestions.

    Love to all, hugs,

  14. >Best wishes going forward!

    As far as EMRs, there are many. Something to consider is being able to drill down into the data (relational database). Not all data is the same!

    Would love to see a connection between Cerner Corporation, Patientslikeme, and WPI. Cerner has the the horizontal time lines views you mentioned, world-wide presence, structured clinical documentation, relational database, etc.

    Patientslikeme has a global online capabilities and pharmaceutical partners.

    Can't wait to hear more!

    ~ JT

  15. >Please Please reconsider on taking Medicare and Insurance. Most with CFS are broke and cannot afford to pay for doctors out of pocket. I'd guess 90% of CFS patients fall into this category. Please reconsider. I am desperately ill with CFS and cannot afford to see doctors who don't take insurance.

  16. >I'm so very excited about the opening of the clinic…but I'll add to the chorus of pleas to reconsider the issue of Medicare and insurance. Those who are most in need of WPI's services are those who are likely to be least able to afford it.

    That being said, how does one get "in line" for an appointment?

    ~ KL
    (16 years and counting…)

  17. >Thank you for all of your hard work for us patients with CFS.

    My heart sank when I read that you won't be taking insurance or medicare. How can you set up a clinic for a patient population who is so disabled and likely on social security disability and then not take their primary means of paying for health care which is Medicare?

    Please reconsider your stance on insurance and medicare. PLEASE

  18. >Wonderful news, and thank you so much for keeping us informed. Yes, how do we "get in line"? (I have a feeling it's going to be a very long one!)

    25 years….

  19. >You are fabulous. Is there any possibility of care without travel, including for the first appointment? For many of the sickest, travel is a tremendous risk of possibly irreversible setback.

  20. >In my experience, private insurers cover out of state doctors. When I had private insurance (UHC and then BCBS) I never had an issue seeing a doctor who wasn't in my state.

    If funding is an issue, I would much rather the WPI ratchet up their solicitations for outright donations instead of forgoing insurance/medicare in order to cover costs/research. The reason being is that donations to charitable nonprofits are tax deductible unlike doctors fees.

    Also, seeing as there have not been controlled drug trials of drugs for XMRV yet, I'd like to see WPI focus on setting up such research rather than treating patients in a clinical setting at this point in time. Trials would kill two birds with one stone. Costs could be covered by drug companies for patients who are in the WPI trials and we will get valuable information about the best treatments for CFS/XMRV. The WPI is in the unique position to lead the research to find new treatments that will actually work.

    And honestly, without knowledge from controlled clinical trials, what new treatments would be available anyways? Expert CFS doctors have been using current treatments with little success for years. Thank you for all you guys are doing, but lets not put the proverbial cart before the horse. :-)

  21. >Thanks once again for the update. :)

    I second the question about appointments without travel. It seems like travel would be an even greater barrier than expense for those who need care the most … even for people who live 15 minutes away from the clinic.

  22. >…"end any feelings that there is something worth knowing that is a secret"…profound and thank you! Of course we have all been speculating, waiting anxiously for news, and trying to figure things out from the silence…only natural.

    I will stop worrying; you've got us covered! A claim form, especially for all the labs, should be accepted by most insurance companies, and can be appealed if turned down, so that would cover a lot of the cost of being seen.

    I do like the idea of clinical trials first; maybe they could be done along-side the testing and evaluations? (Note, I don't say treatments, as that will be an individual choice, I suppose.)

    I like that idea of a Ronald/McDonald house; but,who would shovel the snow? :)

    Have got to poll my doctors as to which would like to learn how to ski!!!

  23. >Jamie, this is wonderful news for all of us. As others have specified, what would the chance be of some sort of international collaboration. In many ways the world is quite small due to internet/skype communication etc. It seems in some respects long journeys are not particularly necessary. This could also generate extra $$
    Good luck

    Clive (UK)

  24. >Hey people, this announcement is just the beginning. The WPI are in the red, they are going to use the synergy of treating patients who can afford to pay to create the database and treatment results that will enable their methods to spread out far and wide. We have hope, we've waited so long, most of us will have to wait a little longer, but it is coming!

    Hang on in there xxx

  25. >Thank you Jamie for this update. And yes I'm with you regarding clarity of intention, collaboration and sharing of information.
    Let's hope it reaches far to the rest of us in other continents.
    All the best with the journey to Reno!

  26. >Fantastic news Jamie. Wishing you all the best!!! Can't wait until the clinic opens up. The whole field will change overnight!

  27. >Patients and WPI are at odds here – what patients want for "treatment" is far beyond what WPI can provide-a thread strongly advised people not to travel to see a famous doc. I speak from experience; I went to Klimas's clinic expecting that she would have SOMEthing to offer after all her years, but she had nothing. Her notorious disorganization was so harmful even though her manner was kind. We don't need another doctor trying to hold the hands of individuals; we need you to perform the research that will help millions. The emotional involvement of WPI people may be clouding their judgement.

  28. >Great news! I don't care if I have to travel around the world, you will see me in Reno as soon as I am able to get myself there. Best regards from Norway!

  29. >What a disappointment. It sounds like just another place that's going to gouge patients for money. We patients are already broke. We are on SSI and Medicare.
    I hope they find a way to accept Medicare. Otherwise this is just another expensive place that has nothing to offer in the way of real treatment.

    I was hoping the WPI wouldn't turn out this way and I had hoped they would not let money cloud their judgement. I was wrong.

    What about clinical trials?

  30. >I agree about the trials. If there have not been controlled XMRV clinical trials yet, how will the treatment be any different than other "CFS" clinics that have largely come up blank for useful treatments despite years of trying? I would much rather see the WPI spend their limited resources to focus on research for CFS/XMRV drugs first, then open a clinic second. Otherwise, what treatments will they even offer us that are any different?

    Please don't take this the wrong way. But as much as its nice to have a CFS Dr who really listens and validates my illness, its not worth the travel and expense to have a 2 hour appointment if their isn't a chance of being in a trial or getting a new treatment that really works. :-(

  31. >Thank you for taking on this challenge!!
    I'm praying that the waiting list is not long.
    I'm praying that my daughter can be seen.
    Please…. hurry!!

  32. >It is beginning. I, too, am a medicare patient. I know that a simple 2 liter saline infusion is billed out by the University clinic in Madison as a $400 event. The cost is not the saline and equipment. It is use of the room for 2 hours and the nurse.

    SO…if a PRIVATE clinic gets medical code crafty, they bill twice for the same day, but use one hour with 4 billing codes( SALINE and tubing, ROOM, NURSE, MD and the second hour with 3 billing codes, excluding the saline and equipment. Even with this fancy billing and the correct codes, medicare will pay less than half of the cost of the infusion charge.

    THE POINT IS…WPI would need several employees. Someone has to do the medical coding, someone has to do the actual billing and send the works to medicare. Lastly, someone has to take in money from medicare for each patient and check for mistakes, then resubmit. How can the WPI clinic survive the Medicare paperwork? Looks like I won't be going to Reno either, but WPI knows about all of us out here. I trust they will not forget that the majority of people will never go to Reno. As far as research and clinical trials, it is those grants that help pay for the clinical part of an operation like this. Clinical trials start out small and we hear about them….but they need to grow with more research money and take place in other parts of the country. I think this will happen because times are changing with XMRV…even if a small % of people have been tested. I am 31 yrs sick. We have waited so long and within the last few years I have seen more progress than in the previous 25 years.

    BTW, my friend has private insurance and once the company has detailed forms from the out of state facility, they pay 90 – 100%. The problem is most people cannot float the charges up front. So I guess we all hang on.

  33. >We all know the desperation for treatment. But if we let WPI do the research, then when they have a treatment, they will make it known and we can ALL get it from our local docs. I really hope they will do this rather than try to be clinicians, despite everybodies pleas for help. Research is their strength.

  34. >You can't do clinical trials without doctors and somebody's got to pay the doctors.


  35. >Just want to further the recommendation of possibly treating patients from afar. There are so many of us bedridden and unable to travel at all — more of us than I think most people realize. I cannot even make it to local doc appt's just 10 minutes away. I have received emails from many others in the same situation. I know this is a difficult thing to accommodate, but I do hope that such an accommodation will be considered at some point.

    Thank you for your continued updates, as well as your fight for a group of very neglected but extremely and severely ill patients.

  36. >Suggestion: Recruit families of the patients. They can rent a house/apt in Reno, and the family members who have needed skills can work in the clinic to pay their rent and the cost of testing and doctor's care.

    Many probably have family members who have some of the needed skills; receptionist, lab tech, PA, medical billing specialists, nurses, etc. Will the employees have medical coverage? If so, their kids up to age 26 are now covered in U.S. by the new health care act.

  37. >Clinical trials can be (and often are) run without (in house) doctors. They are initiated by drug companies or universities/institutes who have secured funding/IRB approval. They then solicit participants from existing practices (often at multiple sites) who have been determined by those practices to meet the criteria for the trial. And they pay for the trial. In the case of CFS, it would probably be patients from well known CFS practices.

    I'm not saying WPI shouldn't open a clinic at this point in time if they think that they have something to contribute to the care of CFS. But WPI doesn't need necessarily run its own clinic for XMRV drug trials to be done. Nor would it be wise or fair to only offer participation in such trials to patients who can afford to be seen at the WPI out of pocket.

  38. >The one thing we haven't known much about is WPI's fundraising. I'm sure they have been busy with writing NIH grants and AW can't do everything. It has been frustrating for patients who want to help. There are no easy to read brochures to give to people who are unfamiliar with the illness. Patients wanted cans to ask for neighborhood donations. We would sell candy or pens. Did WPI contact all the women's foundations, have cocktail parties with philanthropists or families at speaking engagements outside NV, buy mailing lists and send solicitations? They need another professional fundraiser to fill these holes and go national and if the clinic is a separate non profit entity it needs it's own. The research side will be able to sell their tests. The clinic supporting the research is what Cheney does and only the rich can afford it. Has WPI applied to HHS to be a clinic in their underserved program? How this will be different from paying to see Klimas or Peterson is that the first patients are volunteering to be guinea pigs for the research and new protocols. Having us pay for the research is wrong. We've already been doing that and can't have extras on our medical bills. First WPI needs a separate link to donate for the clinic. There will be different givers for a hospital or pure research. Don't opt out of medicare, then we get nothing back. In current climate we are maxed out on credit and can't do mortgage refinancing. Kathy Parker

  39. >I hate to see WPI naively trying to save the world with another clinic; look hard at the disappointment generated by the other docs doing this and the financial loss when no help was obtained.

    But if you must, one critical need is to supply a caretaker for someone who comes alone. For those of us who have slept overnight in our cars in the doctor's parking lot, or fell down the stairs in the airport, or crashed our rental cars, or who just went without food, traveling to a clinic was disasterous.

  40. >Jamie,

    Congratulations!! Your partnership with WPI and the potential of it, to me is like what happened when Dr. Judy joined WPI. My heart soars that you are heading there. I am so excited for what it means for you and your family, and how much it will do for us all with ME/CFS!

    Expect a visit from me when you get up and running.

    I so want to help! I'm thinking about how :)

  41. >jamie, i am truly very sorry you and your daughter have this monster…i just wanted to say i am impressed with your fight and if there is ever anything i can do for you just let me know…i have a very good contact on a new privately owned medicine that is non toxic and will kill anything in its path…it is an immune modulater and has been used with huge success in hiv and hep c and has wiped out every animal disease from virus,fungus and bacteria or toxin…it is in a liquid state i.v. solution and nasal spray…if something could be done there in vitro or possible vivo try and contact me when you have time…i also want you to know i am still not convinced about xmrv and i guess everyone has their own opinions but i am dead against aids drugs but i respect your decision…anyway once you find time i am sure mindi can forward my email address or i am sure the office at wpi has my email… plus i get 600 free minutes from u.k. to u.s. every month… to you and your daughter be well and best wishes aidan… aidan walsh southampton, u.k. p.s. can you give your daughter a hug for me, i also have a daughter 27 now but she is o.k. and i would fall to pieces if she came down with this…bye jamie…god's blesses i forgot,i have learned a lot from these sites and they have helped me aside from my great neuro-endocrinologist i had while in montreal dr. beverly pearson murphy who is a great friend…she should be at wpi and is just about to retire…jamie,she is a genius and published on cfs…she has success… www,watercure/com hope these sites help you both be well…

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