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Posted to Co-Cure Mon, 3 Jul 2000 23:53:12 -0400 by Ray Colliton

Thriving with Your Autoimmune Disorder - a book review

Thriving with Your Autoimmune Disorder
A Woman's Mind-Body Guide
by Simone Ravicz, Ph.D.
New Harbinger Publications, Inc.
ISBN 1-57224-189-6
Paperback 370 pages
U.S. $16.95

In the Preface, Jay A. Goldstein, M.D. writes:

"Thriving with Your Autoimmune Disorder, by Dr. Simone Ravicz, is an excellent, well-written, comprehensive survey of a complex yet common phenomenon. It is the best book targeted to the educated layperson that I have read on this topic. I cannot cite a more sophisticated and comprehensive work by a nonphysician.

"I specialize in treating patients with chronic fatigue syndrome (CFS), also known as chronic fatigue immune dysfunction syndrome (CFIDS); fibromyalgia syndrome (FMS); and related disorders, which I term “neurosomatic.” Dr. Ravicz discusses diverse research, clinical experience, and opinion about such illnesses, fortunately omitting a vast body of useless research that has hindered advancement and would be of no use to the reader. I congratulate her on her review of the literature and her synthesis. Thriving with Your Autoimmune Disorder will be an informative guide for patients and their families.

"Many books on the subject belong in the junkpile. This one should be in your bookcase."

He's right. Borrow the book from your public library, or buy a copy at your local book retailer or favorite online book site. But read the book. If you or a loved one has a chronic illness, this is one book that must be read.

And - despite its emphasis on women - men will benefit from reading Dr. Ravicz's book also.

The author has divided her book into three main sections. In Part I she discusses Women and Autoimmune Disorders and Related Conditions, with special emphasis on stress and the immune system, reclaiming your healing energy, the Mind-Body connection and the power of the diagnosis.

Part II is a discussion of these specific autoimmune disorders: Multiple Sclerosis, Rheumatoid Arthritis, Systemic Lupus Erythematosus (SLE), Sjogren's Syndrome, Graves' Disease and Hashimoto's Thyroiditis, Type I Diabetes, Fibromyalgia Syndrome and CHRONIC Fatigue Immune Dysfunction Syndrome.

Part III is the soul of the book: Coping Strategies. Dr. Ravicz has chapters on Mind-Body Techniques, Enhancing Your General Coping Skills, Working with Others, and Tools for the Journey.

This book is informative. Most importantly, it is empowering.

[More information about this book is available by clicking here]

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Posted to Co-Cure Wed, 12 Jan 2000 21:17:04 -0500

Communicating with Your Doctor

In a recent study, physicians got poor marks for involving patients in medical decision-making. Find out the implications for CFS patients and what you can do to improve your communication with your doctor.

http://chronicfatigue.about.com/health/chronicfatigue/library/weekly/aa011200a.htm

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Posted to Co-Cure Mon, 25 Oct 1999 19:49:59 +0200 by Dr. Marc-Alexander Fluks

CNN transcript on CFS: Sick and Tired

Station: Cable News Network (CNN)
Date: Oktober 24, 1999
Programme: CNN & Time
URL: http://cnn.com/TRANSCRIPTS/impc.html (home page)
http://cnn.com/CNNPromos/cnntime (home page 2)
http://cnn.com/TRANSCRIPTS/9910/24/impc.00.html (text)

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Posted to Co-Cure Sun, 24 Oct 1999 12:10:48 +0200 by Mette Marie Andersen, M.D.

Prevalence of CFS

Hello all,

In order to compare the CFS prevalence figures published using the CDC and the Oxford criterias respectively, I have constructed two tables on my page for a quick overview.

This is the page:
http://www.cfs.inform.dk/Prevalence/prev.cfs.html

Cheers,
Mette

CFS News & Information
http://www.cfs.inform.dk

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Posted to Co-Cure Wed, 20 Oct 1999 12:45:55 -0700 by Lisa Lorden

Flu shot article updated, plus new poll

Hi Everyone,

After hearing from an infectious disease specialist in response to my flu shot article, I've incorporated his comments. You'll find the updated article at
http://chronicfatigue.about.com/health/chronicfatigue/health/diseases/chronicfatigue/library/blpollflu.htm.

In addition, I've added a flu shot poll to the site to measure how many CFS sufferers are receiving flu shots and whether they are concerned the vaccine might make them feel worse. Please cast your vote! You'll find the poll at:
http://chronicfatigue.about.com/health/diseases/chronicfatigue/library/blpollflu.htm.

It only takes an moment, and you'll instantly see the results collected thus far. Your participation is appreciated!

Best to all of you,
Lisa

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Posted to Co-Cure Sat, 30 Jan 1999 00:21:25 -0500

CFIDS for Psychologists

Understanding Chronic Fatigue Syndrome puts CFIDS in terms mental health professionals will understand; this book review is by Katrina Berne, PhD, the author of Running on Empty:

Understanding Chronic Fatigue Syndrome:
An Empirical Guide to Assessment and Treatment

By Fred Friedberg, PhD, and Leonard A. Jason, PhD
1998, American Psychological Association, Washington, D.C.

Dr. Berne's review can be read at http://www.co-cure.org/cfids.htm

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Posted to Co-Cure Mon, 7 Dec 1998 12:18:00 MET

Report of National Task Force on CFS/ME [UK]

The report of the UK National Task Force on CFS/ME is available on-line from the archive of the ME-NET list.

*In order to download a copy, surf to
http://listserv.surfnet.nl/SCRIPTS/WA.EXE?A2=ind9812a&L=me-net&H=1&O=D&P=12102

Or send the command line,
GETPOST ME-NET 6841
to,
LISTSERV@NIC.SURFNET.NL
to obtain a copy by e-mail.

* Electronic version: Sjaak Smeenk and Marc Fluks

* Info: Title: NHS Services for people with Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis
Autor: The National Task Force on CFS/ME
Date: September 30, 1998
Published by: Westcare
155 Whiteladies Road
Clifton
Bristol BS8 2RF
United Kingdom
Tel: +44 (0)117 923 9341
Fax: +44 (0)117 923 9347.
Price: 14.95 pound including U.K. p&p.

* Contents:
1. OVERVIEW
1.1. Introduction
1.2. Nature of chronic fatigue syndrome/ myalgic encephalomyelitis
1.3. Intervention
1.4. Current CFS/ME services
1.5. Service development
2. BACKGROUND
3. AIM AND OBJECTIVES
4. RECOMMENDATIONS
5. THE NATURE AND EXTENT OF CFS/ME
5.1. The Reality and Severity of CFS/ME
5.2. Name
5.3. Definition
5.4. Clinical features
5.5. Causes of CFS/ME
5.6. Prevalence of CFS/ME
5.7. Numbers to be Served for an Initial Minimum Service
5.8. Prognosis
6. SERVICE PROVISION: EVIDENCE AND GENERAL CONSIDERATIONS
6.1. Are there effective treatments?
6.2. Principles governing service provision
6.3. Published studies
6.4. Should services provided be confined to those for which there are favourable randomised control trials?
6.5. Clinical Consensus
6.6. Key interventions
6.7. Maximising the acceptability of local services.
6.8. Should nothing be done?
Summary
7. A MULTI-DISCTPLINARY APPROACH
7.1. The multidisciplinary team
8. PRIMARY CARE
8.1. General practitioners
8.2. Diagnosis and assessment
8.3. Managing CFS/ME in primary care
8.4. Paramedical professionals
8.5. Patient organisations
8.6. Referral
8.7. Research
8.8. Summary
9. SECONDARY CARE
9.1. Assessment
9.2. Service provision
9.3. Service delivery
9.3.1. Outpatient services
9.3.2. Domiciliary services
9.4. Respite Care
9.5. Benefits and employment concerns
9.6. Voluntary sector
9.7. Paediatric services
9.8. Research
10. TERTIARY CARE
10.1. Inpatient services
10.2. Residential Rehabilitation Courses
11. EXISTING SERVICE PROVISION
11.1. Task Force Survey
11.2. Central register of CFS/ME services
11.3. Establishing a new outpatient CFS/ME service.
11.4. Current designated CFS/ME services
12. COST
12.1. Providing a Service
12.2. Costs and Benefits
13. TRAINING
13.1. Medical and paramedical disciplines
13.2. Trainers
13.3. Commissioners
13.4. Employers
13.5. Benefits Agency
14. CONCLUSIONS
15. PERSPECTIVES
APPENDIX A: TASK FORCE SERVICES GROUP MEMBERSHIP
APPENDIX B: SERVICE LEVEL AGREEMENT
APPENDIX C: DEFINITION OF CFS
APPENDIX D: GRADES OF DISABILITY
APPENDIX E: NON- PHARMACOLOGICAL TREATMENTS
APPENDIX F: STAFFING ASSUMPTIONS AND COSTS
APPENDIX G: FURTHER INFORMATION
REFERENCES

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Posted to Co-Cure Thu, 10 Dec 1998 13:26:34 -0500

Article on FMS-related Death

The Register Guard of Eugene, Oregon [USA] reports the October death of a young woman with FMS. The death was apparently a result of an accidental overdose of pain-killers. The article also details the woman's long-time battle to find help for her disease.

http://www.registerguard.com/news/19981206/1c.cr.sidestreets.1206.html

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Posted to Co-Cure Tue, 17 Nov 1998 22:42:01 -0500

Chronic orthostatic intolerance articles online

Both articles mentioned by Rick Holland are available online in full text as part of a trial full-text service from the American Heart Association. Good find, Rick!

Editorial
Chronic Orthostatic Intolerance: Part of a Spectrum of Dysfunction in Orthostatic Cardiovascular Homeostasis?
by Krzysztof Narkiewicz, MD, PhD; Virend K. Somers, MD, PhD
http://circ.ahajournals.org/cgi/content/full/98/20/2105

Clinical Investigation and Reports
Chronic Orthostatic Intolerance: A Disorder With Discordant Cardiac and Vascular Sympathetic Control
Raffaello Furlan, MD; Giris Jacob, MD, DSc; Marie Snell, BS; David Robertson, MD; Alberto Porta, MD; Paul Harris, PhD; Rogelio Mosqueda-Garcia, MD, PhD
http://circ.ahajournals.org/cgi/content/full/98/20/2154

If you have any problems, start at the page: http://www.ahajournals.org/, click on Circulation and then on the issue of Nov. 17, 1998 (this is the current issue as of the date of this posting.)

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Posted to Co-Cure Tue, 3 Nov 1998 08:00:24 EST

Englewood CFS Program Opens to Adults

Englewood, NJ. The KIDS Fatigue Management Program, which opened earlier this year at New Jersey's Englewood Hospital and Medical Center, will now offer complete evaluation and treatment for chronic fatigue in adults.

"We have been contacted from all over the country, not only by kids, but also by adults with CFS," said Dr. Richard Bruno of the Fatigue Management Program. "There are just too few specialists who treat chronic fatigue for us to treat kids and turn adults away."

The Fatigue Management Program, developed by Dr. Bruno nearly a decade ago to treat chronic fatigue in polio survivors, has been used by the British Chronic Fatigue Centre for six years and has been found to be effective in reducing symptoms and increasing function in adults as well as in children.

HERE'S HOW THE FATIGUE EVALUATION PROCESS WORKS:

Step 1) Call and talk to Dr. Susan Creange, a specialist in health psychology, about beginning the process: 201-894-3652;

Step 2) Ask for all of you doctor's records, blood work and other tests you have taken and send them to Dr. Creange. If you haven't had any blood work or other tests, we will arrange for you to have only the necessary tests when you see Dr. Jerald Zimmerman, a specialist in physical medicine and rehabilitation and Chief of the Department of Rehabilitation Medicine, for a physical examination.

Step 3) Your records will be reviewed by Dr. Creange, Dr. Zimmerman and Dr. Richard Bruno.

Step 4) Dr. Creange will make an appointment for her, Dr. Bruno, and Dr. Zimmerman to meet you.

Step 5) After the evaluation, you will fill out daily activity and dietary logs for a week and come back to take neuropsychologic tests of how well you can concentrate and think of words you want to say. You will also be asked to buy a pedometer. On the logs you will note how you feel, what you do, what foods you eat and how many steps you take during the day to help find triggers for your symptoms;

Step 6) After all your test results are in, the doctors will meet with you to talk about what is triggering or maintaining your fatigue and suggest a treatment program.

HERE'S HOW THE FATIGUE MANAGEMENT PROGRAM TYPICALLY WORKS:

The heart of the program is managing your activities so that you don't do too so much that you are exhausted or do so little you're not enjoying life. You will continue to keep daily logs and meet with Dr. Creange once a week to create a lifestyle that helps you to manage your fatigue and conserve your energy. You will come to the Fatigue Management Group meetings that let you meet other people with fatigue who are working to manage their symptoms. Dr. Zimmerman will oversee your medical care with the treatment team;

Dietitian: An important part of fatigue management is a good diet, so you will meet with a dietitian who will look at your food logs and help you to eat well, especially by increasing protein intake early in the day;

Occupational Therapy: People who are very fatigued sometimes have trouble sitting to work for long periods, or get very tired doing simple chores and activities. You may see an occupational therapist, who evaluate how you use your body to do activities, your posture and help you find ways to conserve energy to decrease fatigue and muscle pain;

Physical Therapy: You may see a physical therapist, who may teach you non- fatiguing exercises (like stretching) to reduce pain and help you to increase your ability to stand, work and walk using less energy for a longer time;

Your treatment team will meet with you and your family during the 5th week of the program to talk about how you're changing your life and managing your symptoms.

Follow-Up Clinics: The Fatigue Management Program usually lasts for about 6 to 8 weeks. For one month after graduation from the program you will continue the daily logs. You will return for Follow-Up Clinics at 1,3, 6, and 12 months after graduation. At the Follow-Up Clinics you will meet with your treatment team to discuss how you are managing fatigue with lifestyle changes. You and your treatment team will talk about any changes to your self-care and exercise plan and any new issues. You can also call or meet with the treatment team at any time you need to.

Once you graduate you are encouraged to continue attending the Fatigue Management Group to help you to continue to maintain your lifestyle changes.

Insurance: Most health insurance companies and Medicare/Medicaid typically pay a large part of the charges for medical evaluations, blood work, tests, therapy sessions and psychotherapy. You may need a referral from your personal physician if your managed care plan or HMO is to authorize evaluation and treatment. We will always work with you to obtain authorization for evaluation, treatment and assistive devices. Please bring your HMO referral/authorization and co-pay with you to the evaluation and treatment sessions.

For more information or to start the evaluation and treatment process please call Dr. Susan Creange at 201-894-3652 or write us at CFSENG @ AOL.COM.

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Posted to Co-Cure Sun, 27 Sep 1998 04:53:49 -0400 by Dennis Gersten, M.D.

DSM, Diagnosis

Dear Co-Cure,

As a psychiatrist, I can't help but respond to the article on DSM and how psychiatric labeling is somewhat arbitrary, affected by the pharmaceutical industry, and not a valid approach for people who want support with everyday stress, and not-so-everyday stress.

I agree with just about all of it. I have watched diagnoses come and go since I began my psychiatry residency in 1975. "Neurosis" existed back in 1975. It no longer exists. Even as a general idea to talk about among us shrinks it has disappeared.

Feeling and emotion have also largely disappeared from psychiatric conversation, conferences and books. A friend of mind attended a psychiatric conference years ago in which the words "emotion" or "feeling" were never mentioned - and that conference lasted for several days.

While it is true that the pharmaceutical industry has come up with some medications that really are helpful and at times miraculous, in my practice, Prozac and its kin are at the bottom of my "prescription list." At the top of my list are:

1. Listening
2. Trying to understand my patient at the deepest level possible. Out of that understanding arise hope and trust. Hope and trust are the foundations of healing.
3. Mind-body techniques, including mental imagery, meditation, and breath techniques.
4. Nutritional testing. I put amino acid testing and supplementation of missing amino acids at the top of my list.

There are people who respond to Prozac and who don't do well on Tryptophan . . . and vice versa. Conversely, I have treated people who responded to no psychiatric meds at all, but found Tryptophan to be what their brain was looking for.

Without going into the details, it is clear that the removal of Tryptophan from the market in 1989 was strictly political, driven by the AMA-FDA-Pharmaceutical industry complex.

As a general concept, I have found that the distinction between mental problems and physical problems is blurry at best. Just about everyone is metabolically depleted, way out of balance. People seeking treatment for CFS (physical problem) or stress and depression (psychological problem) will both have significant metabolic problems.

Back to the concept of diagnosis raised in the article you posted:

There clearly are times when diagnosis is legitimate, namely with schizophrenia. Few will argue that this is a terrible disease, basically unaltered by compassion, loving understanding, etc. This is where the big gun psychiatric meds are essential.

When it comes to "psychiatric diagnosis for the purpose of billing insurance" I will go with the most innocuous diagnosis, such as "Adjustment Reaction with Anxiety." There is no stigma attached to this diagnosis.

There are, in fact, diagnoses that no psychiatrist will use because no one will get paid. In my opinion, at least half of the patients in psychiatric hospitals suffer from borderline personality organization (BPO), which is the outcome of childhoods that are extremely abusive or neglectful. Instead, for these people, the primary diagnosis will be one of these:

Major Depression
Schizophrenia
Schizoaffective Illness
Atypical Schizophrenia

These are diagnoses that doctors get paid for, that insurance pays for, and that hospital staffs respect!

When I worked with people with borderline personality in a hospital setting . . . without medicating them, their insurance disappeared at the speed of light. The staff of mental hospitals tend to have a huge bias against BPO, labeling these people as "manipulative" "demanding" "drug-seeking." I finally gave up hospital psychiatry after both MediCare and MediCal (MediCaid) stopped paying on almost all of my hospitalized patients.

Both physical and mental diagnosis are largely culturally driven. What we call Chronic Fatigue Syndrome, a Doctor of Oriental Medicine might call "Kidney Yang Stagnation." Schizophrenia, on the other hand, is colored by culture. The American schizophrenic has hi-tech delusions. The schizophrenic of indigenous Phillipines has voodoo delusions. And any shaman knows the difference between schizophrenia and voodoo or possession.

Finally, we get to the issue of the larger labels we use, such as "alternative medicine," and "complementary medicine." I recently read an article by Ranjan in the journal Advances in Mind-Body Medicine. He argues that none of these labels are appropriate. Alternative Medicine is only an alternative when seen from the perspective of traditional Western Medicine. One can not understand a different system of healing without entering into that system, without experiencing it from the inside. It is like studying something very far away and hard to see. The terms "Alternative or Complementary" make no sense to someone raised on Ayurveda, Chinese Medicine, or Chiropractic. The tools we use to examine are also determined by which system one is living in.

The particular kind of work I do with CFS and GWS includes extensive amino acid testing and supplementation. My approach is clinical. I may have a patient on a dozen different supplements, may be treating their candida with herbs and nystatin, and will use mind-body techniques to help them cope. I am not interested in finding out which amino acid is the most helpful. In other words, with a complex approach, you would have to run studies on large populations for a lifetime before you knew which single ingredient in the total program was most important.

Most of the research on CFS is still guided by the germ theory, the single causative agent, and the quest for the single magic bullet. We need to understand that that approach is not applicable to a concept of alternative or complementary medicine. It may be more appropriate to measure entire treatment programs rather than the isolated and dismembered components of that treatment program. The approach of a clinician in the trenches may be quite different from that of a researcher.

All of this is a reflection, on my part, of psychiatric diagnosis. Our concepts of diagnosis directly impact our concepts of treatment.

I thank you for posting the article on DSM. It has stimulated a lot of thoughts and questions on my part.

Sincerely,

Dennis Gersten, M.D.

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Posted to Co-Cure Sat, 3 Jan 1998 17:48:05 -0500

Personalized Chronic Pain Scale

Dear Co-Cure Members:
Trying to get across the amount of pain one is experiencing on the usual scale of 1-10 can be terribly frustrating. I hope you will be interested in the revision of a pain scale format I have been working on, "Personalizing your Chronic Pain Scale." It can be found at http://www2.rpa.net/~lrandall/painscale.html. I designed it to make communicating our pain experience easier and more accurate, especially to our healthcare providers. It has worked wonderfully well for me, and I am beginning to get positive feedback from various doctors and patients who are using the format and finding that it helps them to communicate and understand one another better.
Best wishes,
Lois

E-mail: lrandall@rpa.net Web Site: http://www2.rpa.net/~lrandall/index.html

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