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Communication is vital to a successful relationship between patient and doctor. We hope that individuals will contribute positive and constructive messages that might help to improve these ongoing relationships. If you would like to contribute an article for this page, please contact us through our on-line form or by sending an email message to co-cure-mod@listserv.nodak.edu.


“It's good to see the difference that a single person can make
even just by posting an article to a list... or a webpage...”


Let's Work Together Index
CFS & FM Good Doctor List
Links to Outside Articles
Articles

The CFS & FM Good Doctor List

New Instructions Re: CFS & FM Good Doctor List

The CFS & FM Good Doctor List, a listing of doctors recommeded by CFS and fibromyalgia patients for CFS / CFIDS / FM patients, has been in process for many months now and continues to grow as patients submit the names of their family physicians and specialists.

If you would like to contribute to this list, please complete the on-line form or send an email message containing the doctor's name, full address, telephone number, and specialty or interest in CFS and/or FM. We recommend that you obtain permission from the physician to have his/her name included in the listing.

This list is now available online.

The listing is divided by country and state/province/region and, for quick reference, these are summarized within an master index file called DOC_LST. All available physician listings are indexed within the DOC-LST. If the country, state or province does not appear in this index, this means that no physicians have yet been recommended for that area.



Links to Outside Articles

“What Your Surgeon Should Know” by Devin Starlanyl, M.D.

The NIAID branch of the NIH has published Chronic Fatigue Syndrome Resources for Patients as part of a publication entitled Chronic Fatigue Syndrome: Fact Sheets and Brochures.

How to Find a Fibromyalgia Specialist By: David A. Nye MD Nyeda@cnsvax.uwec.edu.

Doctor-Patient Communication Tips. Stephen Barrett, M.D., Quackwatch Home Page.

If you would like to find out about your doctor, the AMA has a Web site which offers biographical data on more than 650,000 physicians. The address is: http://www.ama-assn.org.

If you want to check for disciplinary actions against a doctor you can go to Medi-Net, but there is a fee of $15 for one doctor and $5 for each addtional doctor. The address is: http://www.askmedi.com.


Articles

We are accepting articles for publication at the Co-Cure Website. If you would like to submit a constructive article on improving communications between patients and their physicians, please send it to the Co-Cure Webmaster co-cure-mod@listserv.nodak.edu.


Lois Randall March 25, 1997.
Personalized Pain Scale (communicating with your doctor)
(Posted with permission to the Co-Cure List March 25, 1997 by Arie van Buuren.)

We've talked a lot here about lack of communication between ourselves and our health care providers. I realized, for myself, that I didn't have a pain vocabulary. I didn't know how to express how I was feeling consistently. I realized that there's no consistent way to do it because everyone's definition and experience of pain is difference.

I'd like to pass along a solution that worked for me. I made a pain 0-10 scale that applies only to me. The regular 0-10 scales just don't fit, for me. And I had to keep upgrading them every couple of years because my increase in pain made them obsolete. Some say 10 is comatose. Well, some days my pain's darn near a 10, but I'm not in a coma, I'm in a considerable amount of pain. That's what 10 means to me. To be asked to compare it to “the worst pain I can imagine” is ridiculous. That's an emotional and intellectual exercise and has nothing to do with reality!

So I made a scale that tells what I mean when I say 2 or 6 or 10. I use a descriptive word, and then give an example of what brings it about.

I added a short paragraph afterwards that tells the health care professional a little about me. For instance, I wrote something like: “My preferred method of coping with pain is [staying as active as possible]. I see a pain psychologist once a week. I am part of a chronic pain support group... I exercise three times a week, pain permitting. I am currently taking the following medications: ....”

I printed it out and gave a copy to my doctors and psychologist (and to any new doctor I may see, whether for pain or not). The result was an incredible improvement in communication and understanding. Now they understand what I mean when I say my pain is an 8 or whatever. And they understand what 8 means to me: (“Hard to tolerate: concentration difficult; able to perform tasks of an undemanding nature.”)

I'll be making some additions and adjustments to it, and am working on a template of sorts where you can make your own personal scale, choosing your own descriptive words and examples. This helps doctors tremendously, believe me.

Have a gentle day, all,
Lois

E-Mail: lrandall@wavecom.net or dragonrider@psicorps.com

Copyright© 1997 Lois Randall
lrandall@wavecom.net


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Katherine Carrington, California, USA, February 18, 1997.
Somedays are Better than Others
(Posted to Co-Cure List February 19, 1997.)

Some days are better than others. That was the first line of a book that I had intended on writing one day. That day was about 15 years ago and before I became ill with something that no–one yet has been able to define or to cure.

Today I am using that line for another purpose entirely. The beginning of a small and probably little read article on a website that is attempting to put patients and doctors together. Together, in the hopes that one day there will be a cure. Together, in the hopes that one day there will be an open dialog between patients and physicians.

Some days are better than others. Some days, the sun is shining and the ability to get out and tend to roses is an actuality. Somedays, it is not. Some days are filled with pain and fatigue, where turning on the computer is as difficult as running the Bay to Breakers. Somedays, “vexatious” is an easy word to use... when describing the previous day, where you could not remember the word “cow.”

This day is the day that I invite you all to come together to decipher “Patient-speak” and “Doctor-speak.” In the paragraph above, what exactly is the patient saying? What exactly is the physician saying here?

“I have never seen a test result such as that one before. Why don't you come back in six months and we will talk about it.”

Co-Cure was established for the benefit of patients and physicians and researchers alike. To deposit information and retrieve it. To forge an alliance toward an understanding of disease and to communicate towards a cure. As months go on, I have come to understand that there still lays an abyss between all parties. Perhaps that lies in the very basic art of communication and perhaps that is a good place to begin work. Let's begin today.

Copyright© 1997 Katherine Carrington
akatherine2@earthlink.net


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Rika Kageyama (PWC 18+), Tokyo, Japan, February 18, 1997.
Hospital Information in Japan
(Revised from Co-Cure post of February 13, 1997.)

This is some strategies for CFS patients who live in Japan as foreign residents in order to see doctors in Japan. Even in my eyes (native Japanese), Japanese social system, ways to think, common knowledge, etc., are quite different from the ones of West. So, I write this hoping this could help some of you to be familiar with Japanese doctors easier.

(This information was based on my own severe “reverse-culture-shock” after coming back from the United States to Japan, so, you might find different points. I emphasize that this was written, under difficult condition, for the serious purpose ‘helping foreign patients in Japan’ only, NOT for other purposes.)

Rika Kageyama (PWC 18+)
Email kageyama@apic.or.jp
Tokyo, Japan
02/18/1997

  1. First of all, CFS is NOT well-known disease in Japan. Media keeps reporting that “CFS is curable disease within two years with anti-depressant and/or counselling.” (So, I strongly recommend to obtain and bring the book that I posted to Co-Cure list on Mon, 10 Feb 1997, “Subject: MED,NOTICE: Good CFS book in Japan.”)

  2. Most of the general practitioners can not speak/read English, so choose a general/university hospital in your town or close to your town. (Or, make sure before you actually visit the hospital whether English is available or not by telephone.)

  3. Do NOT choose “psychiatric clinic” for CFS in Japan: you might have bitter experience.

  4. Japanese doctors are busy (they have to see 80 – 100 patients a day). So, make a list of all of your symptoms and your concern that you want to ask to your doctors, every time before you go to see your doctors. (Especially, CFS like “not-well-known disease” are troublesome to all crazy-busy doctors, so, “written communication” would work the best, based on my experience.)

  5. General/university hospitals in Japan have a very severe “rule”: “Out-patients must arrive at their hospitals BEFORE 11:00 am for first visit, regardless how heavily sick you are.” (Of course, we, native Japanese have to follow the rule, too.) So, please be careful to arrive at the hospitals BEFORE 11:00. (Only your delay “for several minutes” can not be accepted and in this case, you WILL NOT BE ABLE TO see any doctors regardless your travel with your terrible condition.) If you can know that you will be late, then call up to the hospital on the way to the hospital from public telephone, explaining your reasons. General practitioners don't have such rule.

  6. Basically, general/university hopitals do NOT accept to see out-patients in the afternoon, except emergency cases. (Doctors must see their hospitalized patients in the afternoon.) Some exceptions exist. But, anyway, be careful for your first visit.

  7. All out-patients will be required to fill out a form that will be handed at reception, at their first visit.

  8. Prepare your mind to wait for 2 – 3 hours, before seeing your doctor at general/university hospitals. This is common phenomenon in Japan. (Recently, “appointment system” seems to be adopted from second visit, but, still you should prepare your mind to wait at hospital, at least, for 1 hour.)

  9. You might have to wait for 1 – 1.5 hours to get your medicine at pharmaceutical section at general/university hospitals, too. (Depending on the hospital: at some hospitals, you will get prescription from your doctor and bring the prescription to the most convenient pharmacy for you.)

  10. Native Japanese don't surprise to take “2 hours a way” in order to visit big hospitals. (2 – 2.5 hours a way is ordinary commutation hours in a big city, like Tokyo.)

  11. Because Japanese doctors have to see lots of patients a day (80 – 100), Japanese doctors have to weigh on function more than humanity. So, don't expect to get friendly attitude from doctors. (If you feel they are cold, then, interpret them as “special machines” that are called doctors. Then, you might be able to feel better to tolerate to keep seeing/talking to them).

  12. Explanation about disease/medicine/drug side-effects from doctors is still much less than Western countries, as far as I know. (for their lack of time and more other complicated structure of social/human relationship.)

  13. Japanese doctors consider about side-effect of medicine for CFS-like “NOT life threatening disease” and they have tendency to rely on natural healing power of patients. So, you might feel uncomfortable with doctors' attitude that do NOT prescribe anything to your each symptom regardless your request.

  14. Even doctors who admit that CFS as real disease in Japan think (for now) that many causes are involved for “onset” of CFS: environment, allergy, life style, our immune power that changes day by day under various occasion, condition of our immune working when we happened to develop “flu-condition” toward onset of CFS, relation of psychological/emotional stress at time of onset and so on. (Dr. Kitani's team at Osaka University in Japan have done their best to find trigger and possible cause that connect variety of symptoms of CFS and they had actually suceeded to replicate BORNA virus with PCR technic from CFS patients in Japan (published) but, for the moment and as far as I know, no doctors believe that the cause of CFS is “one particular virus”, considering so many variety of onset period, location and developing way and so on.) So, do not be disappointed to hear words from doctors, “Do you best to power up your immune system” repeatedly. (Surely, we feel annoyed to keep hearing this words only, like a chant, though.)

  15. Headache and shoulder/neck stiffness/pain are VERY common symptoms that most of all Japanese “healthy” people have carried (probably, because of high stressful society and our life style), so, doctors seldom prescribe medicine for these symptoms.

  16. Basically, general practitioners are more limited to administrate medicine than the ones at “general hospitals.”

  17. Basically, no hospitals have translators for meeting with doctors.

  18. Instead of all the above (and more than above) incovinience, as long as you have medical insurance that is provided by our Health Ministry via your company or via company of your spouse, most of the cases should be covered, including dental case. (The treatments that Japanese insurance can not cover: Chinese Traditional Herbal Medicine (Exception: “Extracted granule form of Chinese Medicine” can be covered and can be prescribed at ordinary hospitals/clinics), Accupuncture, Massage, Chiropractice.)

    As for insurance: even with insurance coverage, we have to pay the following percentage of money respect to entire necessary costs:

    • For doctors: 10 % for employees, 30% for family of employees.

    • And, for prescribed Medicine: 10 % for employees, 30 % for family of employees.

    (This payment rate will increase from coming April.)

  19. General Medical Information Service by Tokyo Metropolitan Health & Medical Information Center: “Tokyo Medical Information Service” Telephone #: 03–5285–8181 (Weekdays: from 9 a.m. to 8 p.m., Free.)

    –They could provide referrals to medical institutions where treatment is available in a foreign language, and information on the Japanese medical system. (I've never used this sytem so, I do not know how much they know about CFS and doctors.)

  20. Most of the doctors in Japan are trying to be kind to patients from foreign countries so, don't be afraid of them!

Copyright© 1997 Rika Kageyama


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Rika Kageyama (PWC 18+), Tokyo, Japan, February 19, 1997.
Good CFS book in Japan
(Revised from Co-Cure post of February 10, 1997.)

This information is about the book that mentioned about CFS as virus related disease in Japan with serious tone (probably first one). I recommend the ones who live in Japan as foreign residents to obtain this book and to bring it to doctors in Japan. (Note: This book doesn't mention about medicines for CFS. But, at least, you could persuade doctors.)

Title: “Virus To Kansen No Shikumi” (in Japanese)
(“Mechanism of infection and virus” in English translation.)

Author: Satoshi Ikuta, PhD.

(1986-92 Associate Professor at Ilinoi Institute: 1978 graduated from Tokyo Pharmaceuatical University. 1980-83 researcher at City Hope Institute, 1983-84 PhD researcher at UCLA, 1984-86 PhD researcher at UCSD.) He is NOT medical doctor but he has studied life-science, especially, “DNA structure and synthesis.”

Publisher: Nihon Jitsugyou Shuppan-sha.
Date: 9/30/1996
Language: Japanese
ISBN 4-534-02513-0

The page that mentions about CFS: page 151-156

Short Explanation of this Book

In this book, the author pointed out about relation between viruses and chronic diseases (such as CFS, Hypertention or some psychiatric disease), besides explanation of basical knowledge of microbe, inventing process of microbe such as virus and bacteria, difference of bicrobes from molecule-level point of view, characteristics of cells that are infected by viruses, mechanism of our immune system, vaccination, mechanism of infection (antigen drift, antigen shift), relation between cancer and virus (proto-oncogene), bacterial disease that was actually cause by virus (chorela toxin and CTX fage) and mechanism of cocktail treatment of HIV. The viruses he dealt with in this book were: Orthomyxovirus (A type), HPV (Human Papiloma virus), Adenovirus, Herpesvirus, Poxvirus, Picornavirus, Togavirus, Paramyso-virus, Coronavirus, Arenavirus, Rhabdovirus, Retrovirus (HIV, HTLV, RSV), XV-40, and Eobora.

I quickly read through it and I got the impression that this book is very well packed and easy to understand with lots of visual explanation. (This kind of medical related book for general readers, that covers wide and deep level, has been rare in Japan.) I, native Japanese, will bring this book to my doctor, too.

I have no financial interest in this publisher, author, nor the sale or promotion of the book.

Rika Kageyama (PWC 18+)
Tokyo, Japan

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