“I can make more generals, but horses cost money.“
As expected, there are many comments and letters this morning about money. Many ask that reconsideration be given to accepting insurance assignment. I have promised transparency and money is always one of the hardest things to talk about openly, but here goes.
For a number of excellent legal reasons, the institute and the medical practice are separate entities. There is NO money to float the expenses of the clinic while waiting for collections. So if there is no cash coming in immediately, we can’t open. It’s that simple. We have no subsidy. We may be able to revisit accepting insurance later, but for now, if it isn’t fee for service, there will be no clinic. I wanted to accept insurance. Everyone at the WPI wanted to accept insurance. It isn’t possible at this time.
The idea that the institute should fund large scale clinical trials is not realistic, since the government has no interest in funding XMRV research and the drug companies won’t go to work until the detection/causation issues are worked out. The funds actually need to flow the other way, from the clinic to the institute. The reality is that the patients are going to need to fund the research. Not fair, but true. So yes, once again, the patients get screwed. Money has a way of highlighting difficult reality.
People have asked if we could charge a higher copay for Medicare/Medicaid patients. It is illegal to balance bill federal insurance. Also accepting Medicare/Medicaid is an all or nothing proposition. You have to play completely by their rules or opt out all together. They don’t allow a middle ground. The government thinks a 20 minute visit is adequate, particularly since there is no treatment. We are not going to fix the system; it is broken and cannot be fixed in it’s current form.
I am assuming that everyone realizes that paying the provider is only part of paying the bills. Even if I could figure out how to fund the startup, and even if we used PAs instead of doctors on the frontline, the numbers don’t come close to working out. Personally I prefer PAs, because in general I don’t like doctors and, as a group, PAs tend to be more compassionate and detail oriented than doctors. However a physician is still necessary to supervise and bill for PA services. Also insurance won’t pay for anything telephonic and that will likely be a significant part of follow-up care. Mid-level practitioners would make it possible for ongoing care at a distance to be less expensive.
There is clearly a huge need for a consultation service for patients who can’t leave home. It is illegal to prescribe for a patient that has not been physically seen within a period of time, as it should be, but we will interface with local doctors to help encourage appropriate care. Eventually, we would like to partner in some way with like-minded local physicians to become satellites of sorts. Care needs to be available everywhere. All suggestions will be considered.
Lots of mail about how to get cheaper doctors from overseas or other kinds of discounted help. People have made suggestions such as using PAs for poor people and doctors for rich people. I can tell you clearly now, nothing like that is going to happen. The providers will be of the highest caliber or we will not open. There will not be two tiered care. I am unwilling to deal with the administrative difficulties of a sliding scale. But there will be a wait list for free care. The physician group will donate a percentage of time to patients who cannot afford to be seen – percentage to be determined when we have some real numbers to look at. We will ask that patients who can afford it donate for patients who cannot pay. Any ideas about how to fund for this group of patients is appreciated.
Rest assured that I too have lived the downwardly mobile life of a CFS patient. When I left practice, we had substantial savings that is now gone, having spent an unbelievable amount of money on $500/hr doctors and uncovered IV antibiotics for two people. I am determined not to do that to others. I hereby promise that nobody is going to get rich on the budget I’m putting together. Salaries will be fair, but we are looking for people for whom it is more than a job. The purpose of the clinic is to treat individual patients, but because of the translational medical approach that will be engendered by existing in concert with the research lab, there is a bigger purpose as well.
There will be no attempt made to “entice” patients to travel to Reno in order to make money, as someone put it in an email. Success would mean no need for patients to travel. Time will tell whether we offer anything new and different or not. I share the dismay of many as to how ineffective prior attempts at improving outcomes have been. 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. My impression is that the chronic Lyme patients are sicker and have more pain than the CFS group. That may have something to do with Borrelia burgdorferi infection, or it may have more to do with all the antibiotics these patients have been exposed to. Which doesn’t mean that antibiotics aren’t an essential part of treatment for some. As I’ve said before, I am not against the use of antibiotics, any more than I am for the use of antiretrovirals. I am for what works that doesn’t harm. I am in favor of making all treatment options available and tracking response in collaboration with the research lab. The goal is to develop a coherent approach to treatment that is finally informed by research and understanding the nature of the disease.
>Dr Jamie, thank you for sharing these thoughts with us.
Patients need to put pressure on governments to fund research, education to physicians and competent health care.
I am a chemotherapy nurse, It wouls be an honor to work for WPI, but I got to get well first.
>Thank you for the honest talk about the very difficult subject of money. I appreciate the honesty. I think this is a great way to begin the work of the new Neuro-Immune Disease clinic.
>When my daughter became disabled at age 15, her college fund went unused. It is still intact ten years later. I will pay out of pocket from that fund for care at the WPI. Remember folks that this is not going to be like going to other big name clinics to which you must travel, who charge oodles and gobs and then send you to the psychiatrists. Despite being an expensive thing to do, this will actually be worth it. Sign me up.
>Every word I read convinces me more (as if i needed convincing) that we have fund somewhere finally where we can be safe, cure or no cure. No more humiliating doctor visits.
>Thanks for these answers to my questions and others, Dr. Deckoff-Jones!
I'm happy to know that there are some of us who can pay for care. Lilly mentions that she will use her daughter's college fund. My home equity was my childrens' college fund. It was the best I could provide. The disease took it all. I have nothing to pay for curing or educating either of my children.
Many of us had hopes, they're deferred, we wait. That's life with ME.
I'm happy to know that the WPI is doing all that it can to extend care to the many patients in my situation or worse.
I understand that it will take time for the clinic to fund the research and also be able to provide free care for those who can't pay, and I'm very grateful to the medical professionals and administrators who will work to make this happen as soon as possible. I am confident that the WPI is doing all it can to make care available and equitable to all patients.
I don't know what the relationship is between other campus clinics and the university but I'm sure you are doing everything possible to make sure that any available resources from the university will be accessed to help make the WPI strong in both research and clinical care. And of course it is in the best interest of UNR to provide whatever support it can, considering the medical progress and prestige brought by the work of the WPI.
Your plans to collaborate with like-minded physicians everywhere will certainly help bring care sooner to those of us who must wait.
One request: would it be possible for you to maintain a public list of those physicians as they come on board?
>Thank you Dr. Jamie for your honest feedback. Your care of patients is obvious and I will do anything in my power to get there to see you for treatment. Thank you for all you are doing! And much love and continued good wishes for your health to continue to improve.
>Thank you for always being honest.
As a person in the UK, it is desperately sad that there is so much to overcome to help people obtain the medical service they deserve.
I'm certain the strategy you have in place will eventually pay off.
>Thanks Dr. Jaime for being honest with us, that's not something most of us are used to!
>This situation is absolutely deplorable. That patients have to fund research, their medical work-up and treatment, not to mention offset all the costs of their diability (and in some cases family members) is beyond description. The only word that comes to mind is genocide. What's happening to ME patients is a violation of international human rights on several fronts.
Thank you so much for trying to work around the politics of ME setting up your clinic as you are, but it is not a solution. I think it is time to gather the international ME community and put a campaign into high gear for ME research funding, clinical trials for medications, and universal access to treatment. The idea that ME is being approched by nickle and dimeing poverty stricken sick patients is immmoral and criminal.
Kudos to WPI for trying to work within the current framework, but we desperately need to usher in a new political paradigm and approach to ME. Patients, researchers, and clinicians need government and private sector collaberation ASAP!vWe need a strong loud campain NOW!
There are 17 million of us and one WPI. It all sounds logical.
Your transparency makes me feel really, really good.
If Jamie could hire people to see us back to back, 24/7 with no rest and no followups, we would all be seen in 93,150 years. Ninety-three thousand, one hundred fifty years.
See the logic? We have to get local doctors to be so useful that you don't have to travel anywhere.
>still hurts… no matter the brutal truth.
>The money can't come solely from patients.
One reason we impoverished and exhausted patients do all the awareness-raising work we do, is to get more legislative and public support for public and private grants to cover the research.
We already are doing all we can and we keep doing more than we can. Our contribution might make a difference, I hope. Certainly there aren't enough paying patients and wealthy contributors within the ME/cfs community to fund all the research and pay for all us poor ones to be seen.
>Thanks for your honesty. However it doesn't change the fact that it is incredibly disappointing to those of us that already live on the margins financially that we will not be able to find help through the WPI.
Haven't we patients had to fund enough agencies, institutions, doctors?
I for one am tired of constantly being asked for more money.
Isn't the WPI already making a boat load of money off all of us paying the ridiculous amount of money for testing through VIPdx?
>Some local doctors will learn from wpi and after a bit may be able to function independently to a certain extent. This knowledge will raise awareness around the world with doctors and governments. WPI is that light in the darkness to look to and the wider their reach the more governments will realize they need to have centers of excellence to follow the direction of wpi. Once we get a marker to show a person has cfs/me some doors will fly open I hope.
>For those patients who wish to help fund the WPI, a group of us in the UK have started Count ME In, a campaign asking for as little as $1, £1, €1(more if you can afford it) on the 20th of each month. Little & often each month will grow to hopefully a lot over the course of the year. Out first run on 20th Jan raised $626/£400/€470 direct to the WPI. We hope each month this will grow as more people join.
For more details see http://bloggingnotjogging.blogspot.com/2011/01/count-me-in.html
Or join the Count ME In page on facebook.
I feel strongly about this.
I know you see the logic: we have to get local doctors to be so useful that you don't have to travel anywhere.
We need research so that there are things that we can be treated with. I think the most important purpose for the WPI clinic is to feed clinical experience back to research.
Next, in my guess, is to feed experience back to clinical education and support. There are also other reasons like providing existence proof, role models, visibility, etc. Not just to treat a tiny proportion of the 17 million sufferers. We cannot wait 93 thousand years.
WPI can't give us what we need without research.
We cannot expect all of our needs to be filled by WPI's clinic. It is outright impossible. Jamie is doing the best she can.
So while I know nothing of starting up a medical facility, I don't see a flaw in the logic. Jamie has done the preliminary math and looked at the bureaucracy. She has backed it up with her reasoning.
This is unlike the entire US industrial-medical-government establishment. We have people who are thinking about all of us, not just the relatively healthy and wealthy.
Jamie knows what it is like. There is stuff that sucks and she knows it.
I am able to trust WPI more than I have been able to trust any institution ever. Jamie's transparency increases that trust even more.
I genuinely never thought that I would ever see this in my life.
Please donate to WPI if you can.
Back to Jamie:
You probably didn't want us to take this out of context, and I won't repeat it elsewhere, but "… in general I don't like doctors …" is yet another reason I like your attitude. :)
To everybody: I hope to have a blog post up soon.
>Let's do what we can to help Dr. Deckoff-Jones and the WPI get this clinic up and running. Setting up this clinic is itself a monumental task – and it is being undertaken by a partially ill, recovering patient. The larger community is very lucky to have Dr. Deckoff-Jones engaged in this grand effort – as her motives are pure, she is open-minded and she has profound insights into the parameters of this nasty illness. Dr. Deckoff-Jones will need help getting the right people to run this clinic, in the right proportion and with the right attitude. There are many variables and we need to help her so that she does not falter at this task.
At the risk of repeating myself – it is not going to be easy to get this clinic running and running smoothly. On the one hand the clinic is a marvelous opportunity to create a model clinic for ME, while, on the other, the road ahead is perilous.
It is also important to remember that the WPI has pledged to strive towards treatments that can be exported internationally. They have willingness to share data and information to other centers and clinicians, and they have already forged relationships in this manner. This outreach can only become a reality when the treatment clinic opens and various approaches to treating this illness are attempted. Successful treatments are not going to be established overnight. But once they are established, the WPI has no intention of having every patient moving to Reno to get treatment. The protocols and parameters will be exported.
In time the insurance problems will be figured out. First we need the clinic to be in operation and treating patients. The WPI clinic has to start somewhere, and we need to help with our moral and financial help.
I think all of your decisions about money are good ones, the best that could be made in our broken medical system. Thank you for explaining your struggles in coming to these decisions. We are so lucky that you have stepped forward to get the Center for Neuro-Immune Disease off the ground. I like the sound of it: Center for Neuro-Immune Disease. Center for Neuro-Immune Disease. Wonderful.
>What is the cost of being seen at WPI? What will be the outcome of that session? What course of treatment will be recommended most often?
>If we were alcoholics, drug addicts, bulimia
or anorexia afflicted there would be "insured"
treatments available, even rehabilitation
clinics to enter for a cure. How utterly
insane that there is nothing for ME/CFS sufferers.
I have been thinking of TB patients in times
past that entered sanitariums to "take the cure"-
someplace quiet, peaceful, good clean air and
climate, healthy food and healthy environment
where they stayed for six months or so and were
cured. These TB patients rarely recovered on
their own, but were often cured in these good
sanitariums. Think of Eugene O"Neill who speaks
to this in "Long Days Journey Into Night" and
was a success story.
>I sincerely appreciate you being forthcoming about your reasoning, but I still disagree with not taking insurance. Dr Klimas, Peterson, and Lerner all take insurance and/or medicare. They can run clinics and have for years. They offer the current state of the art treatments for ME/CFS (which admittedly there aren't many and the ones they have don't work). If they can do it, the WPI should be able to do it.
If the WPI sets up a clinic now, before there is any research on new effective treatments, how are they going to be any different than these other clinics? What are they going to provide in a clinical setting to patients that the current CFS doctors can't given the state of knowledge in the field? Will that be worth paying out of pocket for?
I'd much rather the WPI put off opening up a clinic at this time and focus on research. We desperately need research into the cause and treatment of CFS. Its what we currently lack most. Given your unique knowledge on XMRV the WPI is best positioned to focus on research that might move the field forward. Thats something that WPI can do that none of the other CFS clinics can. Once we have the knowledge to more effectively treat patients for XMRV, then set up a clinic.
Most startups don't (and aren't expected to) make money from day one, many take outside funding to get off the ground. Perhaps you can lean on the UNR insurance contracts or for seed funding to get you up and running. You are part of the University health system, surely they can help?
What I worry is that in the scenario you describe the financial risk of starting a practice is shifted completely to your patient population in effort to bootstrap. I don't think thats fair when the patient population is generally in dire financial straits.
>Tight integration with research is a great model, IMO.
If you are the first to go there, you might not get anything that Cheney et al. won't do, but your experience will help research.
IMO WPI are thinking about this carefully and we can trust them as people.
>(Not to mention the benefit to clinical education — Perhaps the sufferers will be teaching the new physicians and that knowledge will get put on a website someplace for local physicians to access.)
>I expected nothing less than total honesty and transparency in this space. And yet, I was surprised at what a breath of fresh air this post was. No spin. Just a clear presentation of the facts and a reasoned conclusion. Yes, this makes me feel like I can trust WPI even though I had no reason to distrust them before.
>I guess we need to get the medicine RIGHT first, then we can work on getting it AFFORDABLE.
>I agree with the posters who ask for insurance, and note other high profile CFS clinics and doctors that offer insurance.
I also disagree that earning $250-300/hour, or $500-600,000 a year is not getting rich. To a doctor, that's a moderate salary, but to the rest of America, that's rich. And certainly to CFS patients on disability, that's a fortune. The inequity is heartbreaking.
I also agree with the posters who ask what will be new to offer, for such a high out of pocket cost? Since by admission of this blog ARVs have been overall disappointing thus far in the small anecdotal "pilot" trials, and since all the other possible treatments, from Valcyte, to Valtrex, Famvir, Deplin, glutathione, Vitamin D, Actos, LDN, etc, can mostly be available from CAM practitioners who do take insurance, what is to be gained for the patients who fund this effort from, according to comments from the last two posts, their college funds or life savings? I have friends on all the above treatments, a mix arrived at in consultation with their doctors over time, in various parts of the country, from doctors who do take insurance.
I agree with the posters who say it is too soon. Timing is everything. Once there is consensus among the scientific community on a test, and once drug companies begin to start research, perhaps the timing would be better. I wouldn't think it was too soon if there were actual unavailable treatments that were highly effective and nobody would prescribe.
But that is not the case. And considering the high profile studies that are now underway, it is *not* the case that the powers that be want to bury XMRV. Yes there is controversy, being played out in the journals, but that's typical of any major scientific finding whether it's a fossil in Africa that may herald a new human ancestor, or a murine retrovirus. That's how the scientific method works and that's all to the good, as sometimes what looks valid and real turns out to be invalid and not significant.
Continued in next comment, as the blog won't take a long comment.
>Continued from previous comment…
Meanwhile, other very important aspects of this disease for many–how are they being dealt with? There is far too little research and there has been far too little for 40 years on a virulent and disabling spirochete, borrelia burgdorferi, that is the causative issue for many of us. No good treatments are being worked on. You're just lucky if you can take high doses of oral and intravenous antibiotics and antimalarials in tandem for years, and get better without your gut or system collapsing.
Anyway, the state of medicine is deplorable generally. We have the top 5% in terms of high tech and research, and otherwise we rank appallingly low. Medicine is run as a business here, and doctors in this country expect the privilege of becoming rich. It's not the case in other countries. They don't earn anything like the salaries doctors here become accustomed to and think they deserve. Why do they deserve it? Aren't we all contributing to society in the best way we can? It's truly sad.
In the end, though, those who make the choice will do so of their own accord. So why should I protest? The people who do spend their money to fund WPI's research at this point, and perhaps be guinea pigs in some way or another, will make their free choice to do so. The sad part is the obvious class system inherent in this decision. I'd like to see a post on exactly what WPI expects to offer patients in terms of treatments in the next year. A list of treatments. So people can understand what it is WPI thinks it has to offer that other caring, integrative physicians don't or won't. (If it's ARVs that some people really want and can't get, they should consider that so far ARVs have been fairly unsuccessful. Jamie is a self-admitted success story at the positive end of the curve, and she also admits to collapsing in LAX, and relapsing for a week or two on her return, after a week in Reno. Her improvement is wonderful, but it's clearly partial and perhaps tenuous if pushed too hard.)
In addition, I'd like to know what the research agenda is for the next year or two. What will they be testing patients' blood for? Do they want to monitor the effect of Deplin or glutathione on the virus, as those are two interventions apparently Judy Mikovits mentioned (but are easily available from any CAM practitioner). Are they planning to emphasize ARVs in spite of the fact that at this point the response is underwhelming?
>You are doing an amazing job. Thank you a thousand times. Let's all keeping working on the activism to change the situation and on recruiting more activists.
>I really think an all out political campaign is necessary. When is the film "What about ME" due to be launched by the way? Won't this help raise public awareness? Is the film maker and those involved waiting for more public interest before the film is launched? Are they waiting for definative XMRV research to make a splash in the media to maximize their campaign? I do see the logic in this.
What can we do to draw attention to the need for ME reserach funding now so patients don't have to pay for this peice of their care? How can we bring ME out of the bedrooom and into the livingrooms of the international community? The direction we should take for ME in my view is poltical not financial. WPI needs way more than our money. Perhaps it is best if we support approach ME finacially and poltically at the same time in a balanced way.
Please….we need to stay on top of politicians around the world and fight for change in ME policy. Any chance of a wealthy celebrity who is willing to come on board and be a public figure for a human rights based campign would be helpful. How about several celeberties from around the world….like we see for cancer and AIDS. It seems unless our profile is elavated and awareness is raised among the public patients aroudn the world will be left with spotty care, stigma, and everything else we cope with. A two toer system will dvelop for thsoe who can affor and those cannot….like already is happening.
Again….kudos to WPI for trying to work around the politics they are faced with. I think we need to organize collectively to confront poliics effectively too that is all.
>Dear Dr. Jamie,
I'm sorry to see a couple of comments from people who seem to think that doctors should be economically punished for treating people with complex neuro-immune disease–that doctors should work for free or that the clinic should be free.
I just heard from a doctor friend–a primary care internist–who understands the insurance dilemma and agrees with your decision to operate on a cash basis. He wrote:
"She certain lays out the huge problem that they would have in paying for the services they will provide within the insurance system.
"On a reimbursement level, this illness is a more extreme example of the dilemma of primary care practices. There is no structure within the insurance payment system to pay a physician who treats many people with complex problems, which involve multiple organ systems and care coordination across multiple specialists, family, daily living issues, and the other impacts of the illness.
"Some physicians try to make up for this by doing (unnecessary) high reimbursement procedures or testing in the office to compensate for the negative cash flow of caring for complex people.
"To put it in economic terms, there is a disincentive to treating people with more complex problems. Or put another way, physicians who treat sicker people are economically punished (paid less) compared to physicians who confine their practices to simple problems ('colds and sore throats').
"The adjustment of reimbursement within medicare or private insurance for 'case mix' is almost non-existent.
"As she describes it, this is a 'primary care emergency', but one which has been smoldering for many years now."
You rock!! Thanks for the updates and transparency!
>Thanks for keeping us updated-it's very much appreciated by us patients.
I was however disappointed in the following quote:
"However, now all of a sudden, some expect the WPI to provide boutique care for what Medicaid will pay. And cure everybody of an incurable disease. On the first visit."
For those of us who have been sick for many years I think this statement is completely unfair. What we actually want is to be treated like we have a serious and complex disease. We want TREATMENT. Period. We have gone through our life savings, kids college funds, borrowed from everyone and still bedbound.
I don't know one patient ANYWHERE that is expecting "boutigue treatment". You make us sound like an entitled bunch of patients.
I ask you to not put us down simply because there are some that are disappointed that they won't be able to get treatment at WPI. For the past year its been the only thread of hope that we have lived on-to be able to get help from an institution that gets it.
I hope you understand how bad it feels to discover that it won't be possible for a majority of patients to get treatment at WPI.
Not that it makes a bit of difference but I will not be donating to them anymore and I will be telling friends and relatives to do the same.
I will however be referring people to donate to Dr. Klimas's clinic.
I enjoy your blog and think you would make an excellent MD but the WPI have said many times that no patient will be left behind.
That doesn't seem to be their philosophy anymore since they will only be providing care to the wealthy patients. This is why they won't see a penny from me anymore.
>About insurance: lets be real and not put our heads in the sand. Insurance will NOT work. That is what Jamie is trying to tell us. Has any of you ever read the code of conduct of an insurance company about the diagnostics and treatment of CFS? Don't you know that 99% of the tests will not be reimbursed simply because the keep very strict the guidelines of the CDC in mind? If you have not read it yet you should it will open your eyes. No treatment will be allowed or reimbursed because the same 99% in being considered experimental because there are no official guidelines from the CDC for treatment other than CBT and
GET. If you ave been diagnosed or will be diagnosed with a co-infection like say ,.. oh EBV you can not have CFS according to the insurance guidelines.
Same goes for Medicare.
WPI can not change the system, the government needs to change the system. Insurance means visits back to back in a hurried and way behind scheduled system of 10 minutes max per patient visit, that's all Medicare and insurance will reimburse and will allow. When you go to see your doctor you think he is setting the rules while the truth is the insurance companies set the rules in a dr.practice. How long he can spend with a patient which test he can ask for and which meds he can prescribe.
Who is going to battle with the insurance companies and Medicare for the WPI every time they don't stick to the rules of the game? Don't you think the eyes of all insurance companies are focussed on the WPI? Don't you think those companies are ready for the battle, have their ducks in a row and are waiting for the first person to submit their reimbursement claims? Why do you think so many companies are updating their CFS plans? Even if the WPI would be able to fight back and tell them why they are not sticking to insurance regulations it will be a loss of valuable time and resources because we already know the outcome.
If you have insuranvpce you will ave to submit the claims yourself and go to battle to get it reimbursed. Just sayin …
BTW as a regular insured person I don't think it's fair towards people who just get by on a paycheck and do have insurance to suggest to only see Medicare patients. That's a form of discrimination. It will be all or nothing.
>Who thinks that most doctors earn more than $500K per year? Internists typically earn less than $200K, and many less than $100K. I'm certain that the WPI physicians will be earning the low end of the scale.
As for Medicare, the penalty for not playing by the rules is not just an argument or delayed payment. They can, and do, send out the FBI, shut down your practice, fine you millions of dollars and, if they can, throw you in prison. It happened to a friend of mine, who in no way was trying to defraud anyone. They change the rules at will, and apply the changes retroactively. Even if they audit you and you apparently pass, they can come back years later and say you were in violation the whole time (happened to my friend). The "rules" are incredibly complex (think tax code). You can not treat Medicare patients in any way differently from any other patients. If you want to treat some patients "pro bono," then it is illegal to charge Medicare for treatment of any patients (in other words, all patients would have to be treated for free!).
Non-Medicare insurance is a nightmare for clinics, as well. Every insurance co. has different rules about what drugs or treatments they will pay for. So, for one patient it's OK to use drug X, but the next will have to pay out of pocket for it. Insurance companies refuse payment, and downgrade payments as a matter of course, and the physician must waste hours a day on redundant paperwork and phone calls to try to justify the charges and get paid. Meanwhile, the rules are a moving target. Clinical practices have to hire billing departments just to try to get reimbursement, and the payments are delayed by months to years.
I don't know how Klimas & Peterson do it. I suspect having had established practices before becoming CFS docs helped.