CFS/FMS Doctor Locator
How A CFS/FMS Patient Can Interview a Doc
Your life is on the line here. Therefore, you must be as tough as nails when it comes to interviewing and selecting a CFS/FMS Doc to work with. If the Doc does not pass muster, do not waste your time, money and life go interview another one. Some can be difficult to deal with. The typical primary care physician (PCP) thinks they are as good as the next PCP down the hall, and thinks the patient is confused if they start to "babble" about something concerning medicine they do not recognize. And they are sometimes very tough when it comes to capturing your business. Many Doc's will not talk to you unless you agree to pay them $300 to $400 for an initial evaluation. And after spending the doe, who wants to run to another interview and run up another $300 bill? It is recommended that you not allow a Doc to capture your business unless they are willing to first be interviewed, either by phone or in person (either is fine), and at no charge! And if they cannot agree to this, run like hell.
Also, keep in mind that many Docs are burned out. Many are overworked. Many are called out of bed, in the middle of the night, in the cold, in the snow, to address difficult issues, only to get yelled at by patients because the patient is hurting and the Doc did not make them feel well. Many Docs have many sick and unhappy customers that are not getting better so good. Many Docs are not given the time or money to do a good job. This is frustrating. So don't be surprised if some of these "stressors" are seen in their behavior, sometimes in the form of ambivalence, sometimes in the form of contempt for sick patients, sometimes in the form of disinterest, sometimes in other forms. Many are taught by their employers to not go there, yet the forces that put them there still exist, and some end up there. A CFS/FMS Doc that does good work, is very honest with patients initially about what they can expect and how much it will cost, is very honest about what they know and what they don't, who is not under tremendous financial pressure to pull in business and make money, who is not working long hours, who does not have too many patients, and has a good understanding of what to do, might be, on an emotional level, in very good shape. So, keep in mind that not all Doc's are burned out. Some are doing terrific.
Try to find a Doc that is willing and able to spend time with you, and is willing to work with you in a very difficult and long struggle. This website encourages the patient to ask themselves if they have the wherewithal to struggle through 5 to 25 tests in order to beat this thing. Another question is whether your Doc can do it. Many cannot. Therefore, it helps to find a strong horse that will go the distance with you. The Doc's that specialize on CFS/FMS tend to be aware of what it takes and are willing to go the distance. Other docs, that are close to or in burnout, in many cases, shut down long before the finish line.
So, when you go to interview a CFS/FMS Doc, toss many good questions at them and write down what they say. Interview several Docs (that means more than one), and select the best. Interview people in your region, CFS/FMS specialists outside your region, and also Internet based Docs. The Internet Docs may be much better than the local guy/gal, since he/she may be more of a specialist in CFS/FMS, their rates may be lower, and they may be in a position to spend more time with you. So have an open mind with respect to location. Some of these CFS/FMS clinics are designed to have people travel, check into a local hotel, get tested for several days, and then go home after dropping several grand. This may not be such a bad idea. In summary, you get to interview your various options and decide. It is recommended that you spend some decent time finding a decent CFS/FMS Doc. The future of your life could depend on this.
For an example CFS/FMS Doc interview, please click here.
To interview the Doc, tell whoever answers the phone at the clinic that you are looking for a new Doc and would like to interview their guy/gal at no cost, either in person or via phone. Most clinics completely drop the ball at this point. Most of them tell you it takes big money to get access. If this is the case, don't get discouraged, get off the phone, go inquire at the next Doc, and be opened minded about the Internet CFS/FMS Docs or traveling to a good CFS/FMS clinic.
The following is a list of questions that one might consider for an interview:
* What is your education background? Where have you been certified? How long have you been practicing?
* Tell me about your experience with CFS/FMS patients.
* How many approximately CFS patients have you had? How many FMS patients?
* What are your success rates? What happened to them? Are they OK?
* Tell me about the kinds of things you have tracked down, the methods you used to make your diagnosis, and your treatment approach.
* What is the cost of the initial evaluation, the cost of subsequently appointments, and typical amount of time before you can be seen?
* Are you available for email correspondents?
* What medical testing labs do you work with?
* Have you ever run the following tests? If so, approximately how many times have you run each? And how much do you charge for each?
+ Porphyrin Analysis Test (e.g. Mayo Clinic Lab)
+ Lactulose/Mannitol Small Intestine Permeability Test (any lab)
+ Hair Test For Heavy Metals (any lab)
+ Fungi Antibody Test (any lab)
+ ELISA Food Allergy Test (any lab)
+ Organic Analysis Test by Metametrix Labs
+ Liver Detox by Great Smokies Labs
+ CDSA with Parasitology by Great Smokies Labs
* If someone complains of CFS/FMS, are you willing to Rx them an antifungal drug for 45days, and discontinue use if there is no significant improvement?
* If someone complains of CFS, are you willing to Rx them Wellbutrin SR for 45days, and discontinue use if there is no significant improvement?
* If someone complains of CFS, are you willing to Rx them Provigil for 30days, and discontinue use if there is no significant improvement?
* If someone's liver phase I is upregulated, and phase II is not keeping up, what would you do about it?
* When you receive a test result back from a lab, do you automatically send a copy to the patient? What does one need to do to get a copy? Within what period of time is it sent?
* Do you have an administrative assistant that I can communicate with via telephone? Via email? How long will it take for them to respond? Will they always respond?
* What are your two favorite books on CFS? Two Favorite FMS books?
* What is your favorite CFS web site? Your favorite FMS web site?
* What do you think about the www.BeatCfsAndFms.org web site?
* Would you be willing to copy much of your past patient test data, remove the patient name, and send it to a researcher who compiles your and other Doc's data and places it on the Internet to be studied by all, after you have gotten a release from the patient along with having them fill out an extensive questionnaire and after you have been compensated for compiling the data (by the research study), to help CFS/FMS research? I want to get a sense as to friendly you are at helping the world.
* Will you fill tubes of blood for tests which the patient acquires and manages? At what cost will you draw the blood?
* Are you compatible with the patient's HMO/Insurance company?
* I'm going to give you a hypothetical situation. You have a patient with the following symptoms: (list your symptoms & past diagnosis in several sentences, be brief). Question #1: What do you suspect? Question #2, if you had ___ dollars to spend, how would you spend it? Lets say that completely well is 100% and half functional is 50%. Question #3, If you had to guess as to how much better you could get this hypothetical case, in terms of percent functional, given that they are at ___ % today, and do this in ____ months given that budget that I just mentioned what would you guess as to the functionality gain?
Run Like Hell If This Is Not A CFS/FMS Doctor
If the Doc does not have significant amount of experience with at least 65% of the above questions, run like hell. Remember, your life is on the line here. Don't just sign up with a Doc without first asking tough questions. If you feel you are not capable of asking tough questions, hand the phone to someone who can, and let them write down the answers. Remember, your life is on the line here.
To Finding a CFS/FMS Doc In Your Area
To find a medical specialist in CFS/FMS to interview, try contacting the following organizations via email or telephone and ask them if they know of a "Chronic Fatigue/Fibromyalgia Specialist in your region". The CFS/FMS testing companies will sometimes refer you to a Doc in your area that uses their tests.
http://www.co-cure.org/Good-Doc.htm -- Excellent CFS/FMS Doc List
Below is a list of CFS/FMS clinics. We do not endorse any clinics since we are not in a position to qualify them (you need to do this, as best you can).
If you are a Clinic and wanted to be listed here...
If you are a CFS/FMS clinic and you want to be listed here, please email ClinicList@BeatCfsAndFms.org, place "BeatCfsFms Clinic List" in the subject field; and include your name, address, email address, web site URL (optional), telephone #, FAX #, and a sentence that says you promise to be available for interview, by patients, via telephone or in person, once, initially, for free. If you would like your answers to the above questions published at this web site, then please include that text in your email and we will post it here. Supplying this text will allow you to get off the phone faster when being interviewed, and help you sell your wares with greater ease.
The Best CFS/FMS Doc's in The USA...
CFS/FMS Docs with the best reputations are Dr. Bell, Dr. Majid, Dr's Bock, Dr. Conley, Dr. Cheney, Dr. Galland, Dr. Lapp, Dr. Rothfeld, and Dr. Teitelbaum. If you hand them the tools they need to do the job (e.g. adequate funding for tests; e.g. $3K to $8K), they can probably do a decent job. Dr. Galland may be the best in the nation, yet he may also be the most expensive in the nation -- non-millionaires need not apply. Dr. Galland is in a league of his own. He was at one time the Director of the Giselle Institute, a research institute affiliated with Yale Medical School, and he is now involved in developing tests to see things that Doc's have never seen before, and making these available to physicians world wide as a co-founder of Great Smokie Labs. Galland's book, "Power Healing" is excellent.
List Of CFS/FMS Docs
CFS Clinics in Boston, Chicago, Washington DC and Denver
Dr. Majid Ali, MD (well known CFS doc)
Institute of Preventative Medicine, TEL 973-586-4111, Denville, NJ
Dr. David Bell, MD (well known CFS doc)
TEL 716-765-2099, EMAIL: email@example.com, Lyndonville, NY
Drs. Kenneth & Steve Bock, MD (well known CFS doc)
Rhinebeck, NY TEL 914-876-7082, or Albany, NY TEL 518-435-0082
Dr. Paul Cheney's Clinic (well known CFS doc)
http://www.fnmedcenter.com/ccis/ EMAIL: firstname.lastname@example.org
TEL 910-457-7133, Bald Head Island, NC 28461
Dr. Edward Conley's CFS/FMS Clinic of Michigan (well known CFS doc)
http://www.cfids.com/, cfsDr@cfids.com, TEL 810-230-8677, FAX 810-230-7855
Dr. Leo Galland, MD (well known CFS doc)
133 E. 73rd St, NY, NY 10023; TEL 212-861-9000
Dr. James Jones, MD
TEL 303-398-1195, email@example.com, Denver, Co; Nat. Jewish Res Center
Dr. Charles Lapp, MD (well known CFS doc)
TEL 704-543-9692, Email: firstname.lastname@example.org, Charlotte, NC
Dr. John McFadden, Tupelo Pain Clinic
Tupelo Pain Clinic (fms specialists); 320 South Gloster St; Tupelo, MS 38801
TEL 601-842-2959; FAX 601-842-2898; email@example.com
Dr. Devin Mikles, Sedona, AZ
TEL 520-203-4844; FAX 520-203-4497, web: www.choiceshealthcare.com, email: firstname.lastname@example.org. For Dr. Mikles's response to the above interview questions, please click here.
NJ Medical School, Dr. Natelson, Dr. Lavietes
Conducts CFS and GWS research and also practices medicine
Newark, NJ, TEL 973-676-7063, FAX 973 676-4661, email@example.com
Dr. Glenn Rothfeld, MD (well known CFS doc)
American Whole Health Clinic, Arlington, MA, TEL 781-641-1901, FAX 781-641-3963
Nubasx Clinic, Drs. Chiger and Ruesinik
5000 Peachtree Ind. Blvd. #100, Norcross, GA 30071, TEL 770-734-0101
Dr. Jacob Teitelbaum, MD (well known CFS doc)
Annapolis Research Center For Effective FMS/CFIDS Therapies, http://www.endfatigue.com
Treated over 2000 cfs patients, charges $5800/person, author of book "From Fatigue to Fantastic",
leader in CFS field, TEL 410-266-6958, FAX 410-266-6104, Annapolis, MD
CFS/FMS Internet Docs
Below is a list of CFS/FMS Internet Docs. We do not endorse any of these since we are not in a position to qualify them (you need to do this). This web site is going to define the term "Internet Doc" rather loosely. This is a person (e.g. MD, DO, nutritionist, etc) who is willing to work with you via email and telephone, far from your home, without seeing you in person. They will Rx you medical tests and make sure you get them and get a copy of the result. They may not Rx you meds since they are not seeing you in person and they don't want too get hollered at by the AMA (American Medical Association) who wants all Docs to thump on people's chest to check for fluid in the lungs and make sure the patient is not ocean blue and requiring oxygen, or pea green and requiring a powerful enema. They should be able to coach you on how to get Rx meds in your area, and they should be able to direct you to supplements that are cheap and easy to obtain. The advantage of the Internet Doc is they and you both can easily capture every word of interaction in a text file. Also, both parties can careful think about their response and take whatever time is necessary. The advantage to the Internet Doc is they get specific questions from patients instead of opened ended discussions that can last a long time. Some Docs may want to charge you for email support, telephone support, and medical test that are performed by some of the main medical test labs. Paying for email support is actually a good thing. It implies they are responsible for producing a well thought out response and the rate of emails should not be too much of a problem provided the Doc is not too busy and is comfortable typing (some Docs type very slow and are not good here). The technical support at Microsoft cost $35 per incident (i.e. issue) and is excellent. They spend plenty of time with the caller/emailer, and provide some of the best and most talented support in the computer industry. Compare this with free tech support, where you wait on the phone for 30min to get some burned out kid that is way overworked and only has a few minutes to spend with you. If you need help, who would you prefer?
If you are a Doc and wanted to be listed here...
If you are an Internet "Doc" and you want to be listed here, please email OnLineDocList@BeatCfsAndFms.org, place "BeatCfsFms OnLineDocList" in the subject field, and include your name, address, email address, web site URL (optional), telephone #, FAX #, and a sentence that says you promise to be available for interview, by patients, via telephone or in person, once, initially, for free. If you would like your answers to the above questions published at this web site, then please include that text in your email. Supplying this text will allow you to get off the phone faster when being interviewed, and help you sell your wares w/o doing much work.
MediConsult -- On Line Doctors
America's Doctors -- On Line Doctors
CyberDocs -- On Line Doctors
810 Glenwood Dr; Lafayette, Co 80026
EMAIL: firstname.lastname@example.org, TEL 303-545-5983
http://bcn.net/~stoll, TEL (800)464-7034, FAX (850)769-1436
BeatCfsAndFms Home ©Copyright 1999 gsw. All rights reserved.