Is ME/CFS a Rich Man’s Disease?

[AngelM]

As soon as I saw the post on this forum about Dr. Shikhman in San Diego, I called his office to get on the waiting list. BUT because I am not a resident of California, I was refused an appointment.

I can’t afford to travel the world seeking an audience with a CFS doctor, but because I have a daughter living in San Diego (Pacific Beach), I’ve always considered it a viable option for a CFS specialist. I can visit as often as I like, stay as long as necessary, and the trip is an easy one. Non-stop flight and only a few minutes from the SD airport to my daughter’s house.

So you can imagine my disappointment (and confusion) when I was refused. I don’t know how good a doctor Dr. Shikman is. Like any professional, there is no way I can know that in advance. But he accepts both my primary and secondary insurance—my health insurance pays the same whether I live in Oklahoma or Tinbuktu—so I thought Dr. Shikman seemed worth exploring. Though I don’t personally reside in San Diego, my daughter and her husband have a permanent address there, own their own home, and have lived in SD for more than 15 years. So I am feeling discriminated against—like I’m a homeless person being refused permission to walk into a public building until I can show proof of state residency.

No matter how many times I explained my situation to the receptionist, she was adamant that unless I was a California resident (and could prove it), I could not make an appointment. Maybe there is a logical reason for this rule that I am unfamiliar with. But, at the moment, I am upset and disappointed at getting such a negative response over a dimple phone call.

I’ve been knocked down by one obstacle after another in my journey to find CFS treatment, but have never run across this particular problem before.

Is ME/CFS a rich man’s disease? I certainly can’t afford the hefty private-pay fees most ME/CFS specialists now ask. And a $550 to $1200 deposit just for the privilege of making an appointment a year in advance? There is something fundamentally wrong with that. I can fully understand paying for an appointment if I am a “no-show”—that is only fair. But these are physicians, not Gods.

Since many CFS specialists recommended by OMF and related foundations both reside and conduct their research within the state of California, am I SOL? And if ME/CFS is a rich man’s disease, I think that point needs to be addressed honestly and openly, not skirted around and ignored. Just sign me “Beyond Frustrated and Close to Fed Up With what the ME/CFS System has Become.”

 

[rel8ted]

Yes, I know the doc fees are high. I'm pretty sure I'm gonna be hated for this, but I do not blame them for the deposit policies. They have bills to pay and need to make a certain amount of money. If a patient is a no show and their credit card info has changed or the card declined, how easy is it for them to get the no-show fee? Let's face it, since most of us are not exactly wealthy, we are a financial risk to that office. They are well-educated professionals there to (hopefully) give us their very best help and advice and to guide us through our care. I'm sorry to say that this is not a fairness issue. Would I love to pay less? Sure. Could I get the same expertise and quality of care for less? No, and I am absolutely certain of that. In addition to their own salaries, these doctors have a staff of nurses, phlebotomist, and clerical support, cleaning team, attorney, accountants, continuing education, someone to run their website, legal fees, insurance, rent, and the expense of very expensive specialized testing equipment to maintain. (I have the choice of having a tilt table at my ME doc's office for $5xx or getting it at place my insurance covers it for much less).

I do not feel like that is an unfair choice. It is just simply a decision I am able to make. I don't have the energy to make the almost 4 hour drive to my ME doc's office more than once a year, and I don't want to double the cost of my next visit, plus add another night in a hotel. That means I go to the place I don't like, and it's ok. I know it's easy to get frustrated, but there are a lot of costs associated with healthcare that most folks do not even consider. Somehow, our society has decided that it is unfair to charge what your service is worth if you are in the medical field. I'm not pointing fingers at anyone personally, just saying that Americans as a whole have started to view medical professions through that lens. Yes, doctors make a large salary, but they paid ton for their education, and have a lot of expenses. I am not wealthy. Every time I swipe my card at the ME doc office, it hurts. I do not have insurance to covers any portion of those visits, except some limited lab work. I was sick over 20 years before we could even afford to pay for that, and I am sure many on here cannot afford that luxury still. In my case, we were SO willing to give up other things to be able to afford (and sold a few things to raise some of the money) that ME specialist in hopes of improvement that although the fee hurts, I don't begrudge them for charging it. I consider it a luxury that some would love to have.

Bottom line is, I don't believe any doc goes into treating ME patients "for the money." We are intense, complicated cases. Most of them could probably easily make much more in a specialization somewhere else. If they did not have compassion for us, they would likely be somewhere else. In my mind, it is doubtful that they are setting their fees high to cause harm.

I know it is frustrating, but there is always another way, if we are just determined enough to find it, and look with eyes wide open. Is there a way you could "establish residency" at your daughter's or is there another ME doc closer to home that you could be comfortable using?

 

[Gingergrrl]

I have never heard of Dr. Shikhman (sp?) but you absolutely do NOT have to be a resident of CA to go to OMI or the Center for Complex Diseases (CCD) and they see patients from all over the US and all over the world.

I know they are in No. CA (not San Diego) but just wanted to mention that they do not have any rule re: where patients live. My only guess re: the doctor in San Diego is that he either cannot practice, take insurance, or prescribe meds outside of the state (although I do not know why)?

 

[Darla]

Seems to me if the doctor really cared about caring for an ME patient and had room in his schedule to take on a new patient, there'd be no residency requirement or four-digit deposit for an appointment. There are other and more worthwhile ME specialists in CA, aren't there? I've never heard of Dr. Shikhman, and he doesn't sound promising.

 

[AngelM]

Yes, I know the doc fees are high. I'm pretty sure I'm gonna be hated for this, but I do not blame them for the deposit policies.

You are definitely not hated. I very much respect your honesty, especially since it is so rare. And, believe me, I see your point. I don’t mean to seem like I am throwing myself a “pity-party.” So if it sounds that way, forgive me. It will pass. I am a a human yo-yo on this forum. I can be over the moon one days and in the deepest, darkest pit the next. I absolutely refuse to have my life defined by this illness, I don’t want to spend every waking hour looking for viable and affordable medical treatment for this crazy illness, or searching for a doctor with enough knowledge to respect that symptoms that can only be defined as “physical,” more than likely are. However, for now, it seems I’m stuck in the role of Sisyphus.


You are absolutely correct that the few dedicated doctors who care for people with rare chronic illnesses have more expenses invested in treating their patients than run-of-the-mill family doctors. They spend more than a quick ten minutes with each patient, order more off-insurance tests, explain protocols more thoroughly than physicians bound by the restraints of insurance companies and administrative imperatives. And I would ‘t hesitate to “sell the farm” if I found a CFS physician I could put my faith in. Pay whatever fees he or she charged—rob a bank, if necessary, because it would be worth every penny just to know that, for once in your life, you were being heard. As it is, decades of this illness, hundreds of doctor visits, repeated lab work, countless referrals to useless specialists, painful, expensive and intrusive (not to mention, totally unnecessary) tests, have nearly bankrupted me, as well as, caused me to lose all faith in the medical profession. Here is the latest example: I flew to Colorado last year to see a highly-touted neuro-immune specialist at the University of Colorado. because my PCP found an abnormality in a blood test that indicated the possibility of Myasthenia Gravis. To be honest, I was thrilled. At last an abnormality! Maybe I actually have a disease that can be treated. One week, and $7,000 in travel, lodging, and miscellaneous medical expenses later, I was told that the abnormality had been found in error, and that I was perfectly healthy. I remember my daughter saying: “Mom, isn’t that great news? There is nothing wrong with you.” And I smiled and nodded. But the truth is, I was disappointed. I wanted there to be something wrong with me, because just being told you are perfectly healthy does not mean you feel one iota better than you did when you walked in the door. The only difference is that you are thousands of dollars more in debt. Nothing substantial changes because a renowned specialist blesses you with the knowledge that, in his or her learned opinion, you are well.

My issue (and frustration) with this new culture of private pre-pay specialists is this: How can you know that, after spending thousands of dollars for a first-time appointment, tests, travel, food, lodging, etc. that you will actually be better off than you were when you walked in the door? The only thing you can predict with any accuracy is that you will be physically exhausted from the trip, and your savings account will have inched closer to zero. So the pressure is greater than ever to find the right doctor right out of the box. No room for experimentation. Throw the dart, and hope for the best.

I don’t know the answer, or if there is an answer for those of us who live in middle America, and/or in the dark ages of medical science. I only know when I began this journey forty years ago, I had the financial resources and stamina to see the few doctors then available for PWCFS. And now that more progress has been made in the treatment and understanding of CFS, there are fewer doors open to me. So, yes, I’ll say it—that doesn’t seem fair!

 

[Insomniac]

Perhaps it was a blessing in disguise that this Dr Shikhman didn't see you because of that California only rule.

Y
My issue (and frustration) with this new culture of private pre-pay specialists is this: How can you know that, after spending thousands of dollars for a first-time appointment, tests, travel, food, lodging, etc. that you will actually be better off than you were when you walked in the door?

I have been recommended to go to OMI but I am too ill for the long flight there. What you have just written is exactly what goes through my mind all the time.

 

[confetti11]

@AngelM

Everything you're saying...one of the most heartbreaking things about dealing with this condition. The money, the finances, the suffering. The lost dreams, lost relationships, the isolation, lost hope. You ask for help and then people won't look you in the eye later after they say no. Or they just ignore your pleas. Or you don't want to look them in the eye. If you're single and alone without a very significant savings or inheritance, it's like descending into a hell that very few could begin to fathom.

 

[pamojja]

Is ME/CFS a Rich Man’s Disease?

I think it is not specific to ME/CFS, but with all chronic conditions where you're send off the doctors office prescribed medication till the end your life with no improvement but often deterioration to be expected (CVD, cancers..). AND being a patient not satisfied with that, wanting to look deeper and getting better results.

As in my case with a PAD with a 60% walking-disability 10 years ago. Additional to medications for life was recommended an invasive vascular graft (paid by insurance), where I wasn't satisfied with the risks/benefits ratio.

Instead did it by educating and self-treading myself with orthomolecular medicine, with the help of a regular GP who cooperated as far as he could. Took 6 years till experienced remission from the walking-disability (ME/CFS symptoms still to work on..).

So in the end, by not choosing the poor outcome of insurance-paid medicine, since 10 years ago I probably paid as much as the vascular graft would have costed my insurance out of my pocket for orthomolecular medicine. For me almost a fortune. But couldn't afford specialists on top of it too.

On the other hand, money clearly isn't everything. For example my GP tells me he knows of no other of his patients, who is taking my health as much in my own hands. And so many I know of my age group with chronic conditions financially well-settled - really believing the poor outcomes of insurance-paid medicine without a splinter of doubt.

So it really needs both, some money and not believing a disease to be incurable.


But then it's all so relative again. For example remember in Myanmar with a appendicitis surgery locals had the choice between the often deathly government's done. Or a private for a 100 bucks. Which almost nobody there can afford.. Really unnecessary deaths in almost every family there.

 

[geraldt52]

...How can you know that, after spending thousands of dollars for a first-time appointment, tests, travel, food, lodging, etc. that you will actually be better off than you were when you walked in the door? ...

You won't.

I'm 35 years in, and have spent an ungodly amount of my own money on doctors who were all sure they had the answer. None of them did. There weren't any refunds. I've been done with chasing illusions for more than a decade now. I'm no worse without specialist care than I was with.

I'm skeptical when any doctor holds themselves out as a CFS specialist, at some ungodly price, when it isn't even known what CFS is. I think a lot, maybe most, of the treatments being offered are just nonsense, or playing Russian roulette with pharmaceuticals. I'd like to see some published results, however informal or small, validating the success rate by CFS specialists. There aren't any. Why not? It isn't that difficult to do a small informal study and make the results public.

I can't tell you what to do, but I'm going to hang on until someone actually figures out what this is, perhaps even for a treatment that has passed the muster of a blinded study. Fortunately, there are people now working in that direction in ways that were non existent for decades.

 

[Learner1]

This is a very difficult disease and unfortunately, we seem to be in a race against time and running out of resources before we get well. I feel fortunate to have only had this for 3 years, when there has been a plethora of new research coming online, and am hopeful that using the latest info will allow us to find a path to wellness.

I am seeing a top ME/CFS specialist in California who is in another state from where i live. He has done a lot to help me, though he is out of network for my insurance and I pay out of pocket. He is up on the latest research and discusses cases with colleagues drom his long career. However, he doesn't know everything and is humble enough to admit it, though he has been learning from some of the other info I've brought him from my other providers.

I also see a functional medicine doctor, who has expertise my ME/CFS specialist does not. He helps with my microbiome, hormones, nutrient status, mycotoxins and detoxification, as well as natural treatments like oxygen, artemisinin, curcumin, and vitamin C. Fortunately, he is on my insurance, though many of the treatments are not. Whrn I started seeing him I was sleeping 16 hours a day and totally brain fogged. Today, I sleep 8 hours a day and am clear headed.

I also have a dysautonomia specialist and 2 mitochondrial specialists who are helping fill in the gaps and offering expertise and thoughts I bring back to my other doctors.

All of this is after seeing more than a dozen doctors who wasted my time and money, who yelled at me, fired me, and offered psychotherapy and antidepressants as treatment when I was not depressed.

Being familiar with the research is helpful. Getting tests that allow a comparison to the research findings is, too. And carefully selecting doctors that can help are important, doctors that have good experience, think in 3 dimensions and outside the box, are willing to go out on a limb and try new therapies they believe in after doing their due diligence, eho go to conferences and exchange info with their colleagues and researchers.

Part of the problem is tgat we are all individuals with different genes and individual environmental influences causing us to fall into subsets. Much as we all yearn for the magic pill, from what I've been experiencing, its a matter of wisely testing and then prioritizing and treating the problems found. This will take time and money, more if badly or inefficiently done, which is more likely as we are still on the frontier of curing this disease.

 

[Learner1]

Regarding Dr. Shikman, I just looked at his site. He offers a lot of intensive treatments, many of which are delivered over a lengthy period of time to get results. He offers nutrient therapies, ozone, IVIG, Rituximab and other immune system drugs, physical modalities, etc.

So, you need to be able to show up on a regular basis for treatment. The clinic offers both diagnostics and treatment, which is different than the experience that most doctors offer.

Maybe you need to move in with your daughter.

However he doesn't say anytbing about treating ME/CFS.

 

[AngelM]

You won't.

I have to agree. Fifteen years ago, I did the same. I’d been insulted and dismissed by doctors (who, BTW, made statements to support their insults that have since been disproven by science) for decades. My family didn’t believe my symptoms were real, and why would they? I finally said F**k it. I refused to speak about CFS, read about it, or even mention it on medical history pages at doctor’s offices. It just wasn’t worth it. All I knew was that I had been diagnosed with Chronic Fatigue Syndrome by an infectious disease specialist who went on to do the research that scientists use as foundation for their work with CFS today. I just got lucky when I crossed paths with him.

A couple of years ago I realized that people were talking about CFS. Articles were being written about IT. Scientists were getting grant money to study IT. Documentaries were being made about people who had IT. Maybe it was time for me to come out of the closet. So I did. But, to my surprise, nothing had really changed—especially the prejudice and judgmentalism among the general population toward an illness with “fatigue” in its name. Research has taken off. But perhaps in too many directions? There are more CFS specialists, but good luck getting into see one.

Wondering if I wasn’t better off living in denial.

 

[AngelM]

@AngelM

Everything you're saying...one of the most heartbreaking things about dealing with this condition. The money, the finances, the suffering. The lost dreams, lost relationships, the isolation, lost hope. You ask for help and then people won't look you in the eye later after they say no. Or they just ignore your pleas. Or you don't want to look them in the eye. If you're single and alone without a very significant savings or inheritance, it's like descending into a hell that very few could begin to fathom.

I try not to think of everything this illness has cost me, because it is too depressing. And depression is a big part of this illness anyway—without dwelling on it. The greatest loss for me is “myself.” I don’t know who I am anymore. This morning, my son called to say he and my daughter-in-law were taking my ten-month-old grandson to the zoo, and would I like to go. I had to say “No,” though there is nothing in this world I would rather do than spend the day having fun with my grandson. But I can’t let myself think about it. If this was any other illness, I could live with it. I wouldn’t have to be ashamed of being sick, or constantly apologize for needing to rest. There is only one word that defines this illness and that is “loss.” Thank you for reminding me that I am not entirely alone.

 

[heapsreal]

After wrestling the cfsme beast awhile many of us realize no dr has the answer. Honestly i think if you can find a dr to help treat symptoms and some regular blood work to rule out the obvious stuff is about as good as it gets. Then if they are open to trying a few things great or as many do, they try/experiment with things themselves.

 

[Wolfcub]

@AngelM I am sorry about what happened. It is so disheartening. I know nothing about it really as I'm not even in USA, but it sounds like a nightmare. I thought it was bad here.
There surely HAS to be another decent ME specialist somewhere...? And maybe much better than that doctor who refused to see you for beaurocratic reasons. That is all we don't need when we are so unwell and life is hard enough.

 

[wabi-sabi]

Wondering if I wasn’t better off living in denial.

I wonder this too. I've been sick for 4 years, but only just got a diagnosis. I am lucky in that my family believes I am sick. As my mother said "I pushed on your forehead so I know you're sick." Yes, that sounds slightly odd, but that's my mother. You know the way mothers (hopefully) put their hands on your head when you're sick? that being said, I try to hide from them (and sometimes myself) how sick I really am.)

Any rate, getting a diagnosis was in some sense a relief, but also scary. I had been pretending to myself I wasn't sick until I got too sick to pretend. Now I'll be going to part time work due to fatigue (although also starting grad school).
Half of me wishes I could go back to pretending I wasn't sick.

The half that knows I sick is going back and forth between trying to see a specialist (wanting something like what @Learner1 has) and the other half of me is with @geraldt52 and just waiting for a real cure, because I'm not really sure even the specialists have an answer right now.

 

[AngelM]

@wabi-sabi— You are doing exactly the right thing. You’re not letting this illness define you. I’ve had CFS for decades, and though some years were harder than others, despite the ups and downs, I’ve had a wonderful life—More important, I’ve accomplished the things that count—like raising five amazing kids, watching them grow strong, and then go on to succeed in their lives in ways I could never have imagined. I think one of the things that saved me from CFS was my decision to return to graduate school, even though I had no idea how I would or could accomplish it. But I did—and you will, too. There are some things you just do—and if it gets a little tough along the way—you take a break. But you don’t quit.

I predict you are going to be fine, whether you luck into finding a great CFS specialist, or don’t. Because you are so much more than this illness. You and CFS may have to live together, but you don’t have to let CFS call the shots. Let CFS tap you on the shoulder now and then, not to keep you sick, but to remind you to slow down when you are pushing too hard, rest when your body tells you to rest, and to NEVER take your health for granted. These are rules everyone, not just PWCFS should live by.

And, yes, I’m a mother with her hand always on the foreheads of her children—and they are adults! Now it is my grandchildren who have to put up with me. Though I’ve become sneakier about it with age. I use my lips on their foreheads instead of my hand to check their temperatures. They think Mimi is giving them a kiss—but you can never give or get too many of those!

 

[AngelM]

After wrestling the cfsme beast awhile many of us realize no dr has the answer. Honestly i think if you can find a dr to help treat symptoms and some regular blood work to rule out the obvious stuff is about as good as it gets. Then if they are open to trying a few things great or as many do, they try/experiment with things themselves.

I think you are very wise. We’re all looking for that magic bullet, but while we’re looking, life is passing us by. There is a word I think they use in Alcoholics Anonymous—“Acceptance.” And it doesn’t mean “giving up.” Acceptance is something I have fought against for many years. But my battle for control of every aspect of my life, has only made me bitter. And it has often turned me into a victim—and I hate that. But if I am a victim, it was my choice, and not because I couldn’t get into see a particular doctor, or don’t have a trust fund to pay for everything I want.

Sometimes just reading what you write on this forum is a wake up call. And having a group of people kind enough to listen to you on your bad days without judging, is more powerful than any magic bullet.

 

[wabi-sabi]

And having a group of people kind enough to listen to you on your bad days without judging

Always happy to listen!

Thanks for the kind words. Most days I think I will be OK.It's just that fear of crashing and trying to figure out the energy envelope. New adventure, but that's what life keeps giving us!

And speaking of acceptance- chronic illness just changes a person. Things that you previously took for granted can no longer be counted on. Your body, your mind, your physical circumstances. I think of acceptance as the only way to handle this illness. We (or at least I) have imbibed such a cultural mentality that illness is something to be fought and overcome-look how we talk about cancer in our society- that when you have a disease that can't be fought, where fighting only makes things worse, it's very disorienting.

I'm really interested on the way our disease breaks all the rules on how illness and patients are supposed to behave. I think this has a great deal to do with why CFS keeps getting written off with patient blaming and why GET just won't die.

 

[E.man]

Isn't that how the US system 'works'.

I wouldn't go extending it to other jurisdictions.