Volume 13, Issue 3 -- Summer 1999




 

CCCA CALENDAR

SAT. SEPTEMBER 11 ... DR. PATRICIA KONGSHAVN
Wed. October 6, 6 - 7 PM Newcomer/Share Meeting
Sat. Nov. 13, 1 - 3 PM Group Meeting
Wed. Dec. 1, 6 - 7 PM Newcomer/Share Meeting

Newcomer/Share Meetings are held at: Lyon Real Estate 1st floor Board Room at Lyon Village, 2580 Fair Oaks Blvd. Sacramento.

Group Meetings are held at: MedClinic, 3rd floor conference room, 3160 Folsom Blvd. (at Alhambra), Sacramento.

**Please Note: Some people are chemically sensitive, so we ask that you not wear any fragrances to the meetings. Thank You!**

 

CCCA MEETINGS

September 11 Meeting

Dr. Patricia Kongshavn To Speak

This September meeting should prove very interesting. One of Dr. Paul Cheney's (a prominent CFIDS doctor now in North Carolina) treatment ideas for CFIDS has to do with the glutathione deficiency that has been researched in the immune cell functioning of PWCs. He has given several presentations about this issue, and he often suggests a whey-protein-concentrate supplement to his patients to help reduce the deficiency. Some people have found an increase in energy levels and a decrease in other symptoms from this supplement.

Our speaker for September is Dr. Patricia Kongshavn, author of Glutathione Deficiency in CFIDS. She is an immunologist and researcher who has also studied extensively the glutathione connection to CFIDS. Her speech is subtitled: A Breakthrough in Cell-Defense: Whey Protein Concentrate Increases Glutathione Precursors and Intra-Cellular Cysteine Uptake, and will present to us a discussion about the immune system and how it functions and how it is compromised in PWCs. She will explore the glutathione research done by herself and others. Dr. Kongshavn will present scientific evidence that establishes glutathione as a key component in treating CFS, and will also show parts of a video presentation by Dr. Cheney. It should be very informative, both about the immune system in general and about this particular deficiency. She was instrumental, along with her research partner, Dr. Bounous, in the creation of the whey-protein concentrate (called Immunocal) that some have been taking to combat the deficiency.

We are very lucky to have such an internationally known researcher and doctor coming to talk to us, and I hope it will be useful to all of our members. Please come

and support each other, share with others, and share in the opportunity to hear this speaker and find out a potential source of benefit to PWCs.

Our Saturday meetings are usually designed around a speaker. The speaker will begin the meeting, starting at about 1pm. Her presentation will last approximately an hour, with time for questions at the end. Afterward, we generally open the floor to group sharing of questions and concerns and experiences, giving all who wish a chance to speak or to share. In all, the meetings usually last about two hours. It is a good place to meet other PWCs, share information or get answers from them about your concerns and generally support all of us going through this difficult illness.
(Ed. note - see reprint of the CFIDS Assoc. list of helpful treatments elsewhere in this newsletter.)

Free Parking At The Saturday Meeting!

The meeting will take place at 3160 Folsom Blvd. - on the Northeast corner of Alhambra, right off the Capitol City (Business-80) freeway. From either Folsom or the next street north, turn into the parking structure and find the elevator in the middle of the structure. Park, go up the elevator to the 3rd floor, and follow the signs to the meeting room! It's easy. Free parking and no stairs!!

 

CCCA GROUP NEWS

CCCA Member's Personal Experience With Immunocal

One of our members, Bob P., is familiar with the glutathione issue, and has been taking the supplement recommended by Dr. Cheney. He summed up the issue about the deficiency (as he understood it from another presentation) as follows:

1) The 2-5A RNase L disrupts cell enzyme function and makes CFS a toxicity disorder.

2) Glutathione is the central detoxification molecule for the cell and is also an important anti-viral agent.

3) PWCs are Glutathione deficient.

4) Lightly denatured whey protein can be used to build up the Glutathione system to help impaired primary detoxification systems in PWCs.

5) Toxins and immune activation states both can induce endogenous micro-organism replication rates under glutathione deficiency, so in the immune activation state called CFS we see a lot of endogenous viral activation such as EBV, CMV, HHV-6, etc. (Glutathione deficiency produces a pro-viral effect).

6) If the Glutathione deficiency drops low enough, it participates in cell or apoptotic death.

7) Cheney views Glutathione Deficiency as the major issue in CFS.

He also sent a summary of his experience with the supplement, and some other positive testimonials from his Internet correspondence (with permission).

Bob, PWC, writes: "I started the Immunocal and immediately felt some improvement in my energy levels. I have been on the Immunocal now about 5 months, and I would estimate my energy levels are 50% recovered - more when I am not dealing with other health issues. Every once in a while I stop taking the Immunocal, and my old levels of fatigue return within 48 hours."

"The Immunocal is not a cure-all. While it works to support the liver and the immune system, I still have flare-ups involving problems with those areas. But my energy level recovery I still regard as a small miracle."

Phyllis, PWC '72 and disabled FM/ME/CFIDS '90, writes 3/99: "I have been fortunate enough to be given a few boxes of Immunocal (HMS90 in Canada) to try out. I thought that I should share my experiences with it...At two doses a day plus one cap of malic acid the effects for me were immediate. I started to feel energized. My pain levels went down and my endurance went up. Being so sick for so long the benefits to me are amazing. My head is less congested and I can hobble around longer without having a crushing collapse."

"My daughter, Melody, is also a PWC, and had been practically bedridden since before Christmas and I gave her some of my Immunocal. She is no longer bedridden. Melody is taking one a day and I gave her a month's worth."

Suzanne in Montreal, PWC for 15 years, wrote 5/99: "I had been ill for many years and then met Dr. Buonous (who [along with Dr. Kongshavn] invented the Immunocal) and I was part of the original trial run on CFS here in Montreal at McGill University. After about 2 months I was able to get up, walk, and imagine vacuum and wash my own floor...what a feat that was. Then I improved a great deal, I am not cured but am much better like 65% better and this years about 75% better. For me it is a miracle."

Please note - the speaker is NOT presenting a discussion about a product, but about the immune system, the glutathione deficiency in the immune system, and how that plays into the symptoms of CFIDS. However, our speaker, Dr. Kongshavn, is separately involved in trying to get the concentrate available as a prescription, which will help those who have insurance prescription coverage if they wish to try it, and she may or may not discuss that. The concentrate called Immunocal is available at the retail and wholesale levels from distributors. Two sources will be noted at the meeting for those interested in pursuing this potential source of the product

(Ed.- Please keep in mind that, as a nonprofit organization, we do not offer these speakers with an endorsement of their ideas or products. We simply attempt to bring you information. We can not endorse the research, the product or the sale of the product in any way. Some have found the information about the product and it's reason for potential benefit to the CFIDS community very helpful. It is in this spirit that I let you know that if, after listening to the presentation about Glutathione, you are interested in trying the supplement spoken about, there will be people there with information available on how to obtain it. -JW)


CFIDS NEWS

Social Security Administration signs new CFS ruling!

On April 30, 1999, the Social Security Administration (SSA) issued a ruling clarifying that persons with medically documented CFS can be found to have a "medically determinable impairment." The ruling provides guidance to disability claims processors for applying SSA policy to applications for Social Security Disability Income (SSDI) benefits that result from disability due to CFS. While the new ruling will hardly "open the floodgates" for CFIDS patients to garner disability benefits, it should make it easier for disabled CFIDS patients to acquire benefits at an earlier stage in the SSA appeals process.

The ruling had been in development for over a year. A unique aspect of this ruling was that SSA's Office of Disability appropriately involved The CFIDS Association of America from the earliest stages in drafting and refining the ruling. SSA became convinced of the need for the ruling when an internal survey of CFS-related applications revealed that numerous awards made at the hearing level could have been approved earlier in the review process. The inappropriate delays not only posed serious problems for the applicant, but created unnecessary expense for the agency. The POMS manual, the "bible" of SSA adjudicators, will be revised soon to reflect the policy stated in the ruling. In July SSA will begin training its personnel to ensure that the ruling is used correctly at all stages of the disability process.

Overall the new Social Security Ruling should improve disabled CFIDS patients' outcomes in the SSDI process. It is binding on adjudicators at all levels -- initial application, reconsideration, and administrative law hearings -- and it applies when SSDI recipients are periodically reviewed (for Continuing Disability Reviews or CDRs). The "Social Security Ruling, SSR 99-2p.; Titles 11 and XVI: Evaluating Cases Involving Chronic Fatigue Syndrome (CFS)" should become a critical reference in any CFIDS patient's application for federal disability benefits.
(The CFIDS Monthly Update, June '99)

A complete copy of the Ruling is available on the CFIDS Association's website at www.cfids.org, under the heading "Disability", or by sending a self-addressed business-sized envelope with 77 cents postage to the CFIDS Association at PO Box 220398, Charlotte, NC 28222-0398 with a request for "SSA Ruling".

Highlights of CFS Coordinating Committee's April 21 and 22 meeting

The Department of Health and Human Services Chronic Fatigue Syndrome Coordinating Committee (DHHS CFSCC) met April 21-22 in Washington. As always, the agenda was packed and CFIDS Association Executive Director Kim Kenney influenced nearly every aspect of the proceedings.

CDC prevalence studies: At the CFSCC meeting, Dr. William Reeves reported on ongoing CFS research efforts at CDC. Analysis and follow-up of the data from the epidemiology study in Wichita, Kan. continues. Based on statistical estimations, CDC believes that CFS is about 20% as common in adolescents as it is in adults. Among Caucasian women, the overall prevalence of clinically evaluated CFS is nearly 0.4%, said Dr. Reeves, while "CFS-like"* illness is found in approximately 1.6% of the population. CDC has found that the CFS case definition is a good screening tool for finding possible cases of CFS in the community, but it is not a diagnostic test and medical work-ups are crucial for establishing the diagnosis. Dr. Reeves' report to the CFSCC will be posted on the CDC's website at www.cdc.gov/ncidod/diseases/cfs/cfshome.htm

CDC next plans to launch a national surveillance study with over-sampling for youth and minorities, which have been difficult to identify in prior studies. They will also study the population at large for geographical differences and possible clusters of CFS, as well as socioeconomic and occupational changes related to having CFS.

Name change: At the last CFSCC meeting, Kim Kenney was assigned responsibility for developing a set of criteria by which a new name for CFS could be chosen, as well as a plan for forming a workgroup to choose a new name. As always, Ms. Kenney delved deeply into the project, surveying more than 150 scientists, doctors, patients and advocates from the United States and around the world. With their input, she continually revised the criteria prior to presenting them to the CFSCC. (For more information on the name change criteria, please see the May/June '99 issue of The CFIDS Chronicle.)

Physician education: On April 21, the CFSCC held a half-day workshop on the challenges of educating health-care providers about CFIDS. Dr. Gene Kallenberg of the American Association of Medical Colleges talked about incorporating CFS in medical school curriculums, Dr. Michael Crouch of the American Association of Family Practitioners discussed educating current healthcare providers, and Dr. Michael Scotti of the American Medical Association presented information about continuing medical education opportunities.

The buzzword of the day was "evidence-based medicine" which is a movement in medical care to base health care decisions on the evidence available. Just because there are no standard medical tests for CFIDS, that does not mean there is no evidence, we were assured. Rather, development of an evidence-based approach to CFIDS would mean comprehensively surveying all the evidence available about CFIDS: peer-reviewed medical papers, experiences of clinicians and patients, etc. Academics, clinicians and patient leaders would be involved in the acquisition and analysis of the evidence.

Food & Drug Administration (FDA): Dr. Marc Cavaille-Coll spoke briefly about Ampligen, the drug that is in Phase III FDA testing for CFIDS. As of April, 64 US patients have received Ampligen under a cost-recovery study, in which patients pay for the drug. The placebo controlled Phase III study began last October, and six study sites have signed up to participate. Ultimately, 200 CFIDS patients will be enrolled at no cost in the study, half receiving Ampligen and half taking a placebo.

Kim Kenney asked Dr. Cavaille-Coll why Ampligen has not received fast-track status, which would expedite the drug's approval. For a drug to qualify for fast-track status, it must show serious promise in treating a serious or life-threatening aspect of an illness which has no other treatment. Kim made the point that CFIDS therapeutics should qualify for fast-track status, since there are no effective therapeutics for this serious illness, but Dr. Cavaille-Coll declined to elaborate, citing FDA confidentiality rules which prevent the agency from discussing the status of individual drug applications.
(The CFIDS Monthly Update, June '99)


Articles…

Disability Case Reviews
by Ken Casanova

Once you have been approved for Social Security Disability (SSDI or SSI) and are receiving benefits, Social Security, periodically, will conduct a review of your case in order to determine your continued eligibility for benefits.

The purpose of a review is to determine whether the individual remains totally disabled: that is, the individual is still unable to do any work, even part-time sedentary work on any predictable basis. If Social Security finds the individual is no longer disabled the benefits will be discontinued.

When a review begins, you will receive a letter announcing the review. Although the letter may not state that you are required to take any action at this stage of the review, once you receive the letter (if you are still disabled) you should immediately contact your physician(s) in order to obtain a current medical report/physician's letter. The letter/ report should comprehensively document the following:

1.) Your continuing diagnosis(es). Your doctor(s) should document, in detail, the chronicity and severity of your major symptoms and should provide a full assessment and prognosis of the continuing severity and chronicity of your disabling illness(es). The doctor should also report on any failure of improvement and treatment since the award of benefits.

2.) Your doctor should document how the continuing seriousness of your illness and symptoms totally disable you from working. He/she should also document how your illness severely limits your ability to function in the primary areas of your life: personal care, household duties, family life, social life, etc.

The same general instructions that apply for medical reports submitted in the various earlier application stages, apply for the type of documentation to be included in doctors' letters for reviews.

You should maintain a continuing relationship with your physician(s) and providers so that you will be in a position to document in a timely fashion your disability during a review. Urge your doctor to prepare your report as soon as possible. If you can, obtain a copy of the report and submit it to Social Security as quickly as possible. If not, try to make sure your doctor submits the report as soon as possible.

It is of utmost importance that Social Security obtains the letters/reports before the agency makes an initial decision on your review. Often individuals are initially found not disabled because the state agency does not receive the medical documentation quickly enough. It is much better to get re-approved immediately rather than having to go through appeal stages even though you are likely to be reapproved at a later stage if you can provide the necessary documentation.

If, after the initial review, you are told that you have been found not disabled, you should appeal immediately in writing for reconsideration. You may have all your benefits continued until a decision on reconsideration is made, but only if you specifically request in writing that your benefits be continued, and only if you do so within 10 days of the initial rejection decision. (You have 60 days to file for reconsideration, but if you want your benefits continued, you must act within 10 days.)

During reconsideration you will be asked to attend a face-to-face hearing with the person reconsidering your case to explain why you feel you are still disabled and to submit any further documentation of your disability. If you did not provide the necessary documentation at the initial review stage, be sure to obtain and submit the documentation at this time. Although you may be told the reconsideration hearing is informal, it is in fact a serious, legal hearing - it is possible to make a mistake at this hearing that your attorney will not be able to correct at a later stage. Therefore, individuals are advised not to attend reconsideration hearings without representation by an experienced disability advocate or attorney.

Very often disability benefits will be reinstated at the reconsideration stage. If you are again turned down, you should immediately appeal for a hearing before an administrative law judge. This appeal hearing is similar in nature to the appeal hearing that occurs during the application process. You should definitely have an experienced attorney or advocate represent you at the hearing.

If you are turned down at reconsideration, after you have been afforded an opportunity for a face-to-face hearing, your benefits will be discontinued. If this happens, you should file an appeal for an Appeal Hearing. If you win, your benefits will be restored. If you requested that your benefits be continued through reconsideration and you do not win after further appeals, you are generally required to repay the benefits you received following the initial rejection. However, you may apply for a waiver so that you will not have to repay. The waiver may be granted if you can convince Social Security that you asked that your benefits be continued in good faith - that you believed that you continue to be disabled. Moreover, Social Security can take ability to pay into account in seeking repayment.

Frequency of reviews

When you are first accepted for disability your certificate of award tells you when you can expect your first review. Generally, how often your case is reviewed depends on likelihood of improvement and the severity of your condition. The following are Social Security guidelines on the timing of reviews:

Improvement expected: If improvement can be predicted when benefits begin, the first review will occur in 6-18 months.

Improvement possible: If medical improvement is not predicted but is possible, review about every 3 years.

Improvement not expected: If medical improvement is not likely, review will happen every 5-7 years.


(Mass CFIDS 1999 Spring Update)

 


RESEARCH

Trying To Work With CFIDS

Dr. Norma Ware of the Harvard Medical School did a study of 50 CFIDS patients who were working at the onset of their illness. Twenty-five subjects managed to remain employed by devising means of hiding or working around CFIDS. Some conserved energy by using free time to rest. Others worked less, did easier tasks, and eliminated travel. Dr. Ware concluded that businesses could help persons with CFIDS remain employed by creating a flexible schedule that allows for breaks, re-arranging of tasks and working from home when necessary.
Source: "Sociosomatics and illness course in Chronic Fatigue Syndrome," Ware. (Psych Med 60: 3 94-40 1, 1998.)
(The Mass. CFIDS 1999 Spring Update)

 

Don't You Wish That There Was A Simple Blood Test That Identified FMS?

In the February 1999 issue of Journal of Rheumatology, Russell Wilson, Ph.D., President of Autoimmune Technologies in New Orleans, LA, published the first study on the use of a lab marker for FMS. The report, 'Anti-Polymer Antibody Reactivity in a Subset of Patients with Fibromyalgia Correlates with Severity," identifies a new antibody (anti-polymer antibody or APA) in approximately half of all FMS patients. Splitting up FMS patients into "mild" and "severe" symptoms, a positive APA reactivity test was found in 30% and 61 %, respectively. In other words, the greater a person's pain severity, the higher their odds were of being APA positive.

What about the presence of APA reactivity in other autoimmune diseases or the general population? Wilson and colleagues analyzed the blood of people with rheumatoid arthritis, lupus, systemic sclerosis, polydermatomyosis, and osteoarthritis -- all diseases with symptoms that may often be confused with FMS. A positive APA Assay occurred in only a small portion of people with these diseases. In addition, the presence of anti-polymer antibodies in the general population was only 17%. As for people with CFS who did not meet the criteria for FMS, Dr. Wilson said that the APA positivity was elevated at around 30%, but this value is less than that found in FMS patients. This could reflect a problem of poor diagnostic criteria for CFS.

Dr. Wilson didn't just magically conjure up the APA Assay one night in the middle of a Mardi Gras celebration. Back in 1995, researchers involved in the silicone breast implant fiasco were looking to identify an antibody in the blood of implant patients who experienced body-wide symptoms. An antibody to a high molecular weight antigen, now called the APA, was found in the blood of both the symptomatic breast implant patients and people with FMS. Dr. Wilson has persisted with the work on the APA Assay, making it into a simple test kit and working towards applying to the FDA to request that it be approved as a diagnostic aid in FMS.

At the present time, only Autoimmune Technologies is allowed by FDA regulation to perform the APA Assay. This does not mean that you can't have the Assay performed; it just means that your physician must request the test and your blood sample be shipped to Autoimmune Technologies in New Orleans. An order form filled out by your physician as well as a check for $145 must accompany the blood sample. Order forms and additional information about the APA Assay can be obtained from Autoimmune Technologies' website. Their address is: www.autoimmune.com.

"If you are tested and you are APA positive, it indicates that you are currently mounting an immunological response related to your FMS," says Wilson. "If you are negative, it indicates that either this response is not currently occurring or that your FMS is not related to the production of these antibodies. It does not mean that you don't have FMS or that your illness is not severe."
(Fibromyalgia Network, April 1999)

 

Mycoplasma Treatment Doesn't Work So Well in CFIDS

Dr. Garth Nicolson recently reported that approximately 75% of GWS patients with mycoplasma infections responded to antibiotics and eventually recovered. He has found such patients tend to have one species of mycoplasma infection, rather than multiple species in their blood leukocytes. On the other hand, he's found less than 50% of CFIDS patients with mycoplasma infections respond to antibiotics. He thinks this could be due to their having multiple infections, only some of which are apparently related to mycoplasmas.

He recently finished a study showing that in 93 CFIDS patients that had mycoplasma-positive white blood cells, patients that had been sick longer than 6 years usually had multiple infections, including multiple systemic mycoplasmal infections. Thus he thinks that it may be much more difficult to eventually over-come the multiple infections seen in many long-term CFS patients that tend to be older. He points out CFIDS patients may have many other additional problems, in addition to a relatively high incidence of blood mycoplasmal infections.
Source: Prof. Garth Nicolson
(The Mass. CFIDS 1999 Spring Update)

 

Hydrocortisone Doesn't Help CFIDS

A recent study co-authored by Dr. Stephen Straus showed that low doses of hydrocortisone given to CFIDS patients don't help their symptoms very much. Worse, the low doses suppressed the entire adrenal system of the patients, making this an unacceptable therapy. In the same issue of JAMA reporting the study, Dr. Streeten wrote an excellent editorial on the need for the medical community to study fatigue conditions carefully and seriously.
Source: "Low-Dose Hydrocortisone for Treatment of Chronic Fatigue Syndrome," McKenzie et al. (JAMA 280 (12): 1061-1066.)
(The Mass. CFIDS 1999 Spring Update)

 

How Do Other Patients Rate Their Therapies?

A survey of the use and effectiveness of conventional and alternative therapies for FMS was presented at the November American College of Rheumatology meeting by Sumedha Dalvi, M.D., Ph.D., and Charles Pritchard, M.D., of Abington, PA. Here are the responses they received from the 117 patient surveys they obtained:

(Fibromyalgia Network, April 1999)

 

RESOURCES

From Fatigued To Fantastic

The updated paperback version of Dr. Teitelbaum's book, From Fatigued To Fantastic, is available at most bookstores. The publisher is Avery (ISBN 0-89529-896-1), the cost is $6.95 US (800-548-5757). Dr. Teitelbaum's website is at www.endfatigue.com.

Memory Minder Personal Health Journals

This 220-page journal offers some unique features for tracking symptoms. The majority of the book consists of journal pages with a special check list format that was designed to save time when recording your symptoms, and provide organized, consistent, and easily retrievable records. Categories cover daily recording of temperature, weight, blood pressure, blood levels, sleeping patterns, weather, medications, vitamins/herbs, physical activity, pain and tender point grid, review of symptoms in each body system and dietary intake. The layout allows for quick and easy use. You and your doctor will be able to follow symptom patterns over time, analyze the effectiveness of your medications, and assess the effects of diet and exercise on your symptoms. The book also contains sections on: personal medical history, medical tests, insurance and pharmacy information, heath care providers, and purchasing record.

This book is available from the Memory Minder Co., PO Box 23108, Eugene OR (800-888-3392). The book is $12.95 (plus $2.50 S&H for the first book, $1.00 for each additional book). Allow 4 weeks for delivery.

Disclaimer

The California Capital CFIDS Association, Inc., is a non-profit group for persons who have been diagnosed as having CFIDS (Chronic Fatigue Immune Dysfunction Syndrome) and/or related disorders, and their family members and friends. Our purpose is to provide support, information, coping strategies, and resources for the patients and families. We recognize that each patient needs to be under the care of his/her own physician, and urge each to seek medical advice on any modality of treatment from his/her own physician. The opinions expressed by authors or speakers are their own, and the group does not take responsibility for or insure the accuracy of any expressed opinions.


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