Sunday, August 30, 2009


It is important for a CFS/ME patient to have a sympathetic doctor - a doctor who knows something about this disease. Often it is good to have a number of doctors. But first it is important to have one doctor who is willing to be flexible in treatments, and willing to sign requisitions for testing. Additionally, a patient might want to have a good allergist, or a doctor who knows something about gut dysbiosis - and another one who knows something about thyroid and adrenal problems. The list goes on. This Patient Advocate believes that finding and keeping a supportive doctor is difficult. Most doctors have never heard of CFS/ME, and if they have, they are disbelieving. The same holds true for lyme disease patients. It is really important to find help. This CFS/ME illness exists beyond most doctor’s learning - and beyond their experience. This PA has talked to many doctors and many of them are mute when you tell them the situation - and we know for sure that doctors are not usually at a loss for words. Finding good doctors is a major problem for the patient with CFS/ME.

There are a number of doctors who will deal with CFS patients, or who even specialize in this illness. They are willing to spend long hours with the patient. Most doctors are willing to spend ten minutes with a patient. Such a formula does not work with this illness. Instead the CFS doctor has to be more like a 19th century doctor. The CFS doctor works with symptoms, tests - and mostly with trial and error. Without a good doctor the CFS patient is at a great disadvantage.

If the patient is ambulatory, he or she can travel to a CFS doctor. In NYC, there are a number of known CFS doctors: Susan Levine, Derek Enlander, Leo Galland and others. People can say different things about each of these doctors - and they do- but each of them will wrestle with this disease – and that is admirable. In CA, there are doctors such at Hortoff, Chia, and Montoya. Cheney is in North Carolina, Shoemaker in MD, Patricia Salvato in Texas, Guyer in Indiana, Vrchota in MN, and Lerner in MI. There are others in the UK, Australia, NZ, and Belgium. This is not a complete list.

In general, these doctors are expensive. Sometimes insurance will cover costs of the physician and the tests. At other times, insurance, whether private or Medicare, will not touch these expenses. It is a running battle to get any refund. Most testing and treatment possibilities are seen as “experimental”. No one knows what causes this disease. There is no recognized pathology, no clear diagnoses and certainly no confirmed treatment. Consequently it always comes as a surprise when Medicare or private insurance will reimburse something. Their choices seem almost whimsical. There is no logic to any financial relief for this disease. Obamacare, in whatever form, will not make a dent in the problem of CFS/ME expenses. It is a difficult situation to get one’s mind around, but the patient (and the PA) are on their own here. Economics determines what tests and treatment are undertaken. CFS/ME is a very expensive disease.

The situation for a housebound CFS patient is more dire. This Patient Advocate is not aware of any doctors who will make home visits. Certainly in MN, with its managed care, home visits are off the table. It is difficult to get anyone with knowledge of this illness to come into the home. de Meirleir, based in Brussels, will make home visits in Norway and Australia. Ironically he is the best possibility to come to MN. He is interested in going where the action is. Others do not bother, and only see CFS patients who can struggle to their office. Of course, these doctors are afraid of having their licenses revoked for one reason or another. This is not an idle threat.

Various doctors offer phone consultations. These are less medical diagnostics, and more educational sessions designed to discuss possibilities. These phone consults, which are expensive, allow the patient or the PA to learn the specific options of treatment. Much of this treatment is general in nature, involving acupuncture, supplements, diet changes, resting and pacing programs, thyroid dosing or balancing gut ecology. It is like the 19th century - try this, try that. This instruction can be woven in with more specific diagnostic recommendations that will come from a doctor close at hand.

The PA, over time, has kept his eyes and ears open for doctors who might be helpful. Some doctors are more available that others. For instance recently this PA tried to contact Dr. A. Martin Lerner. The PA had heard of Dr. Lerner and his practice for a number of years. Dr. Lerner, an elderly gentleman, has the most experience in antiviral treatment for CFS. Dr. Lerner himself had CFS, and treated it with antivirals. The PA has seen Dr. Lerner give presentations in London in May 2008 and in Baltimore in June 2008. The PA wrote Dr. Lerner seeking a consultation with him at his office. Dr. Lerner replied, saying that this would not be possible. Eventually Dr. Lerner will produce a treatment DVD for other doctors and the PA will keep an eye out for this.

Other doctors will talk to the PA on the phone and in this way the PA will seek guidance - as the options are so limited. These conversations are not so much to get answers, but to confirm the direction of treatment. The PA is like a doctor’s assistant, or a fancy delivery boy, gathering information to present to his own patient’s doctor. In this fashion, the PA has bi- monthly phone consultations with one CFS specialist, phone consults or visits with his daughter’s physicians every few months, and educational phone consults with various thyroid specialists. These phone consults are helpful in setting direction for home treatment. However they are not a substitute for getting to a doctor’s office. If the patient is homebound the possibilities are limited.

In this way and others, the Patient Advocate will operate in the world between the chronically ill patient and the medical professional. The PA might talk to doctors, nurses and other medical personnel. The PA does many mundane things like ordering supplies, providing food and money, orders tests, follows up on tests, looks for interpretations of test results, looks for additional testing operations, and looks for additional monies to pay for this situation.

The PA will seek out contact with CFS doctors. In this regard the PA scours the field and identifies the more important or more knowledgeable physicians or researchers. The field of CFS is sufficiently small that the average PA will have no problem learning the ropes. This particular PA has struck up relationships with various people. The circumstances vary from situation to situation. The PA has established a telephone relation with a well-known CFS doctor. This doctor is open to phone consultation, which is very expensive. This doctor knows about the disease and various treatment modalities. He is cautious in his approach in using anti-virals. The PA has been talking to him regularly since August of 2007. The PA went to his office in June 2008 and will do so again.

This Patient Advocate travels to UK for the annual conference in London. During this trip he arranges for consultations with various CFS experts. These conversations, along with the cutting edge information in the conference itself, gives the PA a sufficient amount of actionable information in one area or another. In preparation for these visits, the PA arranges and copies the necessary test results. These must be arranged in a legible form. It is necessary to make selections based on what the PA thinks might be essential for a particular doctor to look at, in order to make some suggestions. The PA is looking to establish a relation with various doctors who have seen a great deal of this disease. The PA is looking for information and advice in various areas: viral treatments, gut dysbiosis, thyroid regulation, diet and exercise, sleep, and so forth.

So far, the Patient Advocate has been presenting the nitty-gritty of the life of a PA. The picture that he presents demonstrates that this occupation takes time – lots of time. It also takes lots of money. We have seen that the patient is incapacitated and cannot support herself in any way at all. We have seen that the patient lives in another city, a thousand miles away. All this costs money. What about food? What about supplements? Who pays for the heat? Where does the money come from to pay the doctor? It has been reported that an hour conversation with a good doctor costs $535, or a conversation with the thyroid specialist - $4.50 a minute. Who pays for this stuff? Where does them money come from? What about medicine, what about the phlebotomist? Surely insurance covers these expenses. Surely the PA and the patient don’t have to pay everything out of pocket? Who could afford such things? It is unthinkable. Certainly the government should help pay for this? No, the government does not pay a cent. No, insurance will also not pay a cent. You are on your own. Choices have to be made. These choices can have great consequence for the patient.

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