From Fatigued to Fantastic!
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Phoenix, AZ 85021-1461
800-999-CLOT (800-999-2568)
www.hemex.com
Blood testing, including CFIDS coagulation blood profile/immune system activation of coagulation (ISAC) panel test and hereditary thrombotic panel to see if heparin therapy may help.
*High Tech Health Saunas
www.hightechhealth.com
Sweating can remove toxins, especially if you shower immediately after, and can be helpful for health. Many of the newer saunas are what are called “far infrared,” and a half hour three to seven times a week can help detoxification. I use and recommend the one from High Tech Health.
Institute for Molecular Medicine
15162 Triton Lane
Huntington Beach, CA 92649
714-903-2900
Fax: 714-379-2082
www.immed.com
For mycoplasma and chlamydia PCR testing, HHV–6 testing by Dr. Garth Nicolson.
**Integrative Therapeutics, Inc (ITI)
Wilsonville, Oregon
800-931-1709
Cathy Leet, representative
920-737-8828
I feel that this is the best company in the United States making products for health practitioners only, and I am so impressed with it that I asked it to make my End Fatigue line of products. These include the Energy Revitalization System vitamin powder and B complex, which can replace more than thirty-five different vitamin tablets a day; Daily Energy B Complex; Pain Formula herbal mix; Adrenal Stress-End; and Revitalizing Sleep Formula. ITI actually voluntarily registered with the FDA so that its products have to go through the same testing for potency and purity as pharmaceuticals. ITI has many excellent products, and Cathy Leet is excellent to work with.
**ITC Pharmacy
303-663-422
This mail-order compounding pharmacy does a superb job of quality control, and makes a wide range of bioidentical hormones, topical pain formulas, the sinusitis nose spray, and much more. Although there are many excellent compounding pharmacies, this is the one I recommend first.
**Bren Jacobson
Does excellent pastoral psychological counseling by phone ($95/hour) and also consults on how to use the best of natural and prescription therapies to treat difficult medical issues.
410-224-4877 bren.
jacobson@gmail.com
Steven P. Krafchick
Krafchick Law Firm
2701 First Avenue, Suite 340
Seattle, WA 98121
206-374-7370
Fax: 206-374-7377
www.krafchick.com
E-mail: klf@krafchick.com
An attorney who specializes in CFS/FMS private (not Social Security) disability cases, Krafchick has a master’s in public health from the University of Michigan and has practiced law since 1983. He represents people all over the United States in their long-term disability claims and has been doing Employee Retirement Income Security Act (ERISA) LTD claims for almost fifteen years. The good news is that he is an expert in CFS/FMS, so you will not need to explain the illnesses to him.
Metagenics
100 Avenida La Pata
San Clemente, CA 92673
800-692-9400; 949-366-0818
www.metagenics.com
www.ultrabalance.com
Manufacturer of the UltraBalance Medical Foods line of products, including UltraClean, a hypoallergenic powdered food to use with bowel detoxification and elimination diets. Developed by nutritional biochemist Dr. Jeffrey Bland, this product is expensive, but it can help determine food sensitivities.
Partnership for Prescription Assistance (PPA)
888-477-2669
www.pparx.org
For assistance to help pay for or get free medications, if your income is less than $19,000 a year for an individual or $32,000 for a family of three.
**Pure Water
www.purewatermd.tripod.com
410-224-4877
443-949-0409
Consultant on health and environmental concerns, especially water, and distributor of Multi-Pure water filters.
Sinus Survival by Dr. Robert Ivker
www.sinussurvival.com
Contains tools such as nasal steamers to help with chronic sinusitis. His Web site has many other helpful tools and resources.
**Jacob Teitelbaum, M. D.
466 Forelands Road
Annapolis, MD 21401
800-333-5287; 410-573-5389
www.vitality101.com
Many of the products recommended in this book, especially hard-to-find ones, are available through my Web site. Among them are delta wave sleep-inducing CDs and tapes; D-mannose; stevia; thymic protein (Pro Boost); Fatigued to Fantastic! Energy Revitalization System multivitamin, amino acid, and mineral formula; Daily Energy B Complex; Adrenal Stress-End, End Pain; and the Revitalizing Sleep Formula. It also carries many of the Ultraceutical products. At the Web site, you can sign up for free e-mail newsletters that will keep you on the cutting edge of developments in CFS/FMS and effective pain therapies and a second newsletter on general health. There is also a computer program that will tailor a treatment protocol to your case and an extensive list of CFIDS/FMS support groups.
A word about Fatigued to Fantastic! products: I direct any company making my formulas to donate to charity all of the royalties that I would have received. I also never accept any money from any natural or pharmaceutical product companies.
*To Your Health
800-801-1406
FMS products. Margy Squires and Dave Squires are sweethearts and a wonderful information resource as well.
**Ultraceutical Products
This line of natural products is used at the Fibromyalgia & Fatigue Centers, and is also available at www.vitality101.com.
SUPPORT GROUPS AND INFORMATION SOURCES
*American Botanical Council
P. O. Box 201660
Austin, TX 78720
800-373-7105; 512-331-8868
Supplies information on specific herbs and publishes Herbalgram, a magazine with information on helpful herbal remedies.
BioSET
P. O. Box 5356
Larkspur, CA 94977
877-927-0741; 415-927-0741
www.bioset.net
Offers an allergy desensitization technique that also employs detoxification and enzyme therapy.
Chronic Fatigue and Immune Dysfunction Syndrome
Association of America
P. O. Box 220398
Charlotte, NC 28222-0398
800-442-3437; 704-365-2343
Fax: 704-365-9755
www.cfids.org
**Fibromyalgia Coalition International
913-384-4673
www.fibrocoalition.org
An excellent information and advocacy group formed by Yvonne Keeny.
*Fibromyalgia Network
P. O. Box 31750
Tucson, AZ 85751
800-853-2929
www.fmnetnews.com
Guild for Structural Integration
P. O. Box 1559
Boulder, CO 80306
800-447-0150
For practitioners of the Rolf method of structural integration.
International and American Association for Chronic Fatigue Syndrome (IACFS)
P. O. Box 895
Olney, MD 20830
www.AACFS.org
An umbrella organization focusing on scientific research.
**International Coalition for the Advancement of Fibromyalgia/CFIDS Treatment (ICAF)
www.icafcoalition.org
This group is dedicated to representing patient needs first. It is a new umbrella organization of patient, business, and practitioner groups that is directed by patients. Its goal is to evaluate new therapies and supply the most accurate and useful information available to patients.
The organization also has excellent DVDs of lectures by me and other excellent speakers.
Myalgic Encephalitis Association of Canada
246 Queen Street, S
uite 400
Ottawa, Ontario K1P 5E4
Canada
613-563-1565
An excellent source of general information for CFIDS and fibromyalgia patients, as well as a good source of important information for Canadian patients.
**NAET
6714 Beach Boulevard
Buena Park, CA 90621
714-523-8900
Fax: 714-523-3068
www.naet.com
Supplies information about the Nambudripad allergy elimination techniques (NAET), including help with locating practitioners.
National CFIDS Foundation
103 Aletha Road
Needham, MA 02492
781-449-3535
Fax: 781-449-8606
www.ncf-net.org
An excellent national patient support group and educational resource.
**National Fibromyalgia Association
Lynne Matallana, director
2200 Glassell Street, Suite A
Orange, CA 92865
714-921-0150 www.fmaware.org
This is a must-join group for fibromyalgia patients. Along with ICAF, one of the two organizations I would consult first. Their magazine FMAware is also on the recommended list.
National Myalgic Encephalitis/Fibromyalgia Action Network
3836 Carling Avenue Highway, 17B
Nepean, Ontario K2H 7V2
Canada
613-829-6667
National Organization for Seasonal Affective Disorder
P. O. Box 40133
Washington, DC 20016
www.NOSAD.org
National Sanitation Foundation (NSF) International
P. O. Box 130140
789 North Dixboro Road
Ann Arbor, MI 48113-0140
800-NSF-MARK (800-673-6275); 734-769-8010
Fax: 734-769-0109
www.nsf.org
An independent, not-for-profit organization that tests and certifies drinking water treatment products.
Nightingale Research Foundation
383 Danforth Avenue
Ottawa, Ontario K2A OE3
Canada
www.nightingale.ca
An organization dedicated to the study of ME/CFS. Dr. Byron Hyde also offers expert legal counsel.
Qigong Research and Practice Center
P. O. Box 1727
Nederland, CO 80466
To receive information on qigong, send a self-addressed, stamped envelope.
Restless Leg Foundation
P. O. Box 314JH
514 Daniels Street
Raleigh, NC 27605
507-287-6465
www.RLS.org
For information on restless leg syndrome.
Rolf Institute
205 Canyon Boulevard
Boulder, CO 80302
303-449-5903; 800-530-8875
For information on and referrals to a Rolfing practitioner in your area.
Trager Institute
440-834-0308
www.trager-us.org
For referrals to Trager instructors, tutors, and practitioners.
APPENDIX F
Surviving the Disability Insurance Process
Although most of you will be able to recover enough to live a full life, some of you may have been too ill for your bodies to handle the stress of returning to the workplace—even if you are well enough to enjoy day-to-day life. Usually, I find that people try to return to work too early rather than too late, as this is a disease of overachievers.
Although many disability companies are reputable, some are not and will try to deny benefits for CFS/FMS. For those of you dealing with this problem or with Social Security disability, you’ll find helpful articles at www.scottdavis.com. If you need assistance with a private disability insurer, I recommend Steven P. Krafchick, JD (see Appendix E: Resources). Below is an article he has written, which I think you’ll find helpful. Check with your local CFS/FMS support group to find out which attorneys in your area are knowledgeable about the illnesses.
Long-Term Disability Claims Can Be Won, but Do Not Assume It Will Be Easy
Long-term disability insurance provides a safety net for anyone injured or sick and unable to work. Unfortunately, when people need to rely on this coverage to replace lost income, they often assume that a diagnosis and a statement from their doctor or doctors with copies of records will be sufficient. However, many people find that despite this unequivocal support for their disability, the long-term disability plan or the insurer handling the coverage denies the claim. Sometimes, even after granting benefits, the plan or insurer reexamines the claim at a later date and terminates benefits with little or no notice.
Denial or termination of long-term disability coverage can result in catastrophe for the unsuspecting claimant. Needless to say, it creates unwanted financial stress, leading to emotional stress, which often leads to worsening of physical symptoms. The downward spiral precipitated by the disability company’s unfair decisions hits you when you are down and least able to mount a fight.
Facing denial or termination of benefits, you should find a knowledgeable attorney. Pick an attorney wisely because few attorneys understand the traps that long-term disability plans lay for the unsuspecting. In most cases, it is wise to consult an experienced long-term disability attorney early in your claim. Definitely seek legal help before a final decision is made on your claim. If your insurer wants to interview you or have you see one of its hired doctors, or you suspect for any reason that it’s going to deny your claim, consult an experienced disability attorney. Get help with any appeal of a claim denial or termination. Do not go it alone. You may only have one appeal. Once a final denial with no claims appeal rights is made, the help an attorney can give will be limited, and your chances for a successful claim greatly diminished.
Claims can be terminated if your doctor incorrectly fills out a form or fails to fill out a form; if a new claims manager with something to prove comes on your claim; or if the economy shifts and insurers take measures to increase their bottom lines by rejecting and terminating claims. Nevertheless, disability claims can be won, but winning begins with what you do when you first apply for benefits and throughout your claim.
In making a claim for benefits, you need to follow some basic rules. First, get your doctor to recommend that you stop working and confirm that the doctor will continue to support your claim and is willing to fill out paperwork. Find out from Human Resources or the personnel department what your disability benefits include. Get a copy of your disability insurance policy or plan, as well as the initial paperwork that you, your doctor, and your employer will need to fill out to begin your claim.
Recognize, too, that while you are making a claim for long-term disability benefits, your life has not ended. At the time you make the claim, you are taking advantage of the coverage to give you an extended period of time to learn your true limits. You are not making an irrevocable decision that you will never work again.
If the basis for your claim is a diagnosis of chronic fatigue syndrome or fibromyalgia, there are some important considerations. Look at the limitations of benefits in the policy. There is usually a twenty-four-month limit to benefits based on a mental health condition. Insurers often try to wrongly classify CFS and FMS as mental health conditions. More recently, insurers and disability plans have added provisions limiting to twenty-four months benefits based on “self-reported” symptoms or conditions that are usually defined to include pain and fatigue. These can be overcome with some foresight and good claim preparation. In some plans and policies, insurers specifically limit coverage for disability benefits based on CFS or FMS to twenty-four months. These can only be overcome if a court finds them against public policy, or an insurance commissioner refuses to approve them. If there is such a draconian limit in your policy you will need to get your company to change it. The provisions are so broad that they provide illusory coverage. Most policies, if they grant benefits, will cover these conditions until you reach
age sixty-five of the maximum normal Social Security retirement age, based on your date of birth.
So, how do you win a long-term disability claim? The law that governs your claim will have a significant effect on how to win. Figure out what law applies, state law or federal ERISA law. State law, which typically applies to insurance you find and buy on your own, affords a much wider range of damages for wrongful denial or termination of benefits. The law favors paying benefits and making sure insurers live up to their promises. However, most large employers will have long-term disability benefits that will be governed by federal law: the Employee Retirement Income Security Act (ERISA). ERISA is the reason many attorneys do not handle these cases, because it is a complicated area of law. You do not get a jury trial. You usually cannot call witnesses. You cannot get punitive or bad-faith damages. ERISA law emphasizes protecting the money rather than paying benefits. In the remainder of this chapter, I boil down for you a few basics in presenting a CFS or FMS claim under an ERISA plan. These basics will also help in making a claim under state law–governed policies.
More important than determining which law applies, get a copy of your policy or disability plan and make sure you understand the coverage that you have. The policy should tell you which law will govern the plan. Usually there is ERISA language in the back of the policy if it is an ERISA plan. Check for the definition of disability. Usually a policy will cover you for the inability to perform the material and substantial duties of your own occupation for the first twenty-four months. This is typically not just the inability to do your job, but also to do a job in your occupation for any employer with a similar job. After the first twenty-four months the definition often changes to the inability to do the material and substantial duties of any occupation. The limits previously discussed often take effect at the same time the disability definition changes. Look particularly for the mental-health-condition limit. If it contains a limit to benefits “caused or contributed by” a mental health condition, be wary. Make sure you make very clear that your depression, for example, is not the basis for the disability but the result of your disability. Without FMS or CFS and the pain, fatigue, cognitive problems, and other physical problems, you would be able to work.