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1: What is The National CFIDS Foundation, Inc.?
The National CFIDS Foundation is a tax-exempt charitable organization that is primarily dedicated to research that will help those suffering from Chronic Fatigue Immune Dysfunction Syndrome (CFIDS). Our main goal is to find the cause and subsequent treatment(s) and/or cure for CFIDS/ME — so you could say our real goal is to be able to go out of existence!
We are made up of all volunteers and promise we'll never have paid employees. All funds not used to meet minimal operating expenses go directly to research. We are the only group in the United States that pledges that every penny of donations for research go, 100%, to research!
Our informative quarterly newsletter keeps patients and their families up to date with accurate information.
3: Why is it called Chronic Fatigue Syndrome (CFS)?
Chronic Fatigue Syndrome is a name introduced in the United States in 1988 by a federal committee to replace the erroneous name of Chronic Epstein-Barr Virus (CEBV). However, the committee named a medically unexplained, persistent or relapsing illness after just the one symptom of fatigue that is shared by many chronic illnesses and one that denotes a symptom felt normally by healthy people.
The name has served to trivialize the illness as well as impacting scientific study, funding, and the degree of disability that comes with the illness. Although only four scientists were members of this committee and all four objected to naming the illness "CFS" by resigning, the name was not changed.
Donna Shalala, former head of the Department of Health and Human Services, said on an ABC News Program, "The name chronic fatigue syndrome is an inappropriate, harmful name for this illness."
Myalgic Encephalomyelitis (ME) is a distinct systemic disease characterized, primarily, by a central nervous system dysfunction that impacts all body systems. It is, primarily, an acquired illness that affects the neurological, endocrine and immune systems and was named in the 1950's.
Most of those diagnosed with CFS in the United States fit the criteria of ME, classified by the World Health Organization (WHO) since the 1960's under a disease of the nervous system. The key difference between the two classifications is that ME requires fatigue following even minimal exertion along with muscle strength recovery delay.
In 1992, the WHO classified the disease under both CFS and ME, because they recognize the two as the same entity. A clinical definition of the disease still does not exist in the United States.
Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) is a name proposed by researcher Dr. Seymour Grufferman in the early 1990's when immune abnormalities of the illness had been proven. He suggested adding the Immune Dysfunction to try to differentiate it from the trivializing name of Chronic Fatigue Syndrome.
There have been many other names for this distinct illness including Low Natural Killer Cell Disease, Post Viral Fatigue Syndrome and Icelandic Illness. CFIDS is a complex illness that can begin gradually or abruptly. The "fatigue" is an overwhelming neurological weakness and brain exhaustion that is exacerbated by exercise.
The latest prevalence study in the United States found that this illness knows no social or economic boundaries, although it has been found that Latinos and African Americans are more at risk. Jason et al* found nearly one million with this illness which is far higher than AIDS, breast cancer, and multiple sclerosis and did not count children although CFIDS/ME affects all age groups including children. As with most autoimmune illnesses, it affects women in higher numbers than men although, in children, it is nearly equal.
Overwhelming and incapacitating central nervous system fatigue along with cognition problems, low-grade fevers and other flu-like symptoms and un-refreshing sleep are some of the common symptoms. Painful lymph nodes, weight gain or loss, muscle weakness, calculation difficulties, spacial disorientation, night sweats, headaches of a new type, disequilibrium (balance problems and dizziness), intolerance of bright lights, intolerance of alcohol, benign fasciculations (twitching muscles), tachycardia (rapid heart action), parasthesias (abdominal sensation of tingling or discomfort at odd intervals), irritable bowel, worsening of premenstrual symptoms, seizure activity, dyspnea on exertion (air hunger), visual disturbances, emotional lability (mood swings), sleep disorders including hypersomnia, insomnia, and fragmented sleep (periods of wakefulness during the sleep period) and pharangitis are some of the many symptoms one may encounter.
One hallmark of CFIDS/ME is referred to by some experts as the "push-crash" phenomena where mental or physical activity is followed, sometimes a day or more later, by an exacerbation of symptoms. Pain is felt by over ½ of the patients but symptoms vary from time to time and from patient to patient in both severity and frequency. Irritability and anxiety may accompany the symptoms along with light, cold and heat sensitivities along with sensitivities to odors and medication.
While many feel fibromyalgia and CFIDS/ME are the same, they are different syndromes with some overlapping symptoms. Many secondary problems occur with CFIDS/ME. A more comprehensive symptom list is available, upon request, from the National CFIDS Foundation, Inc. at no charge.
The symptoms in children that are most noticed at the onset are personality change, anxiety, and sleep disturbance while cognitive problems may be the last to occur.
There are no clinical diagnostic criteria for this illness in the U.S. "Chronic fatigue" is a symptom of many illnesses and does not mean you have CFIDS/ME/CFS. But the misconception caused by the name Chronic Fatigue Syndrome has been responsible for frequent misdiagnosing of CFIDS/ME. Children are often misdiagnosed with "behavioral" problems. Others are misdiagnosed with an "atypical" variety of another illness with similar symptoms. One careful study found that most patients with CFIDS/ME/CFS were not diagnosed at all.
There are two research criteria that have been published in the Annals of Internal Medicine (March 1988, December 1994). Click here to read the 1994 criteria. Physicians familiar with the illness have little difficulty in excluding other illnesses and diagnosing patients. Local support groups are a good source for referrals. The Co-cure website also lists patient-recommended physicians.
The only test that has nearly a 100% positive rate is an experimental test for ciguatera, a seafood poisoning. Those with CFIDS/ME actually test higher than those with ciguatera toxin. Testing, to date, is only available at the John A. Burns Medical School of the University of Hawaii. Click here for the testing protocol. The test is helpful for diagnosing but it does not mean a person has ingested any poisonous seafood if the CFS profile is met upon testing. A similar toxin has been found to be produced in the body by a disease mechanism. The National CFIDS Foundation will continue funding valuable research to further our understanding of this disease mechanism and to find a treatment for it.
Evidence from scientific studies proves that several viruses have been shown to be reactivated from time to time including Epstein-Barr Virus and HHV6-A (strain gs) but they are not the cause. Parainfluenza Virus-5 has been shown to play a primary role in CFIDS/ME as well as in multiple sclerosis and epilepsy. A mutation of the virus can cause a slightly different disease. The virus was first isolated in swine but found in CFIDS/ME, MS and epilepsy by Dr. Steven Robbins. Reactivated viruses can play a role but are not causative.
With the cause newly established, transmission is found in this illness via various methods. However, most people who live closely with a patient do not get sick. Some of the triggers of the illness could certainly be contagious as well as some separate elements of the disease. This is the research area that The National CFIDS Foundation, Inc. is funding most aggressively hoping it leads not only to the cause of the illness but effective treatment(s) as well.
The Centers for Disease Control and Prevention (CDC) has advised inquiring patients to refrain from donating blood. According to the Red Cross, CFS patients can donate blood if they are "not symptomatic." The National CFIDS Foundation, Inc. does not recommend blood or organ donations, out of concern for both the patient and the public.
The prognosis as well as the clinical course of the illness varies from patient to patient. While some remain mild cases for decades, others grow progressively worse. The clinical outcome can be improvement toward nearly full recovery, relapsing and remitting, or progressive incapacity. Full recovery is not common and found in only 4% but improvement after 4 years is seen in up to 39%. More dysfunction is seen in this illness than many others and the sickness impact profile has been proven to be extremely high in CFIDS/ME. A memorial list of those who have died with this illness is kept by The National CFIDS Foundation. Most causes of death are from heart disease and cancer.
Currently, the only available treatments address the symptoms (as opposed to the underlying cause) of the illness. Only one treatment has been proven beneficial to all patients — lifestyle changes.
Although a type of psychotherapy called CBT (Cognitive Behavioral Therapy) and graded exercise have been suggested as treatments, they have not been proven helpful and the latter can actually be harmful. Most of the 1000+ participants in a graded exercise study done in the United Kingdom found it worsened their condition. Other studies citing their helpfulness have used loosely defined criteria (so participants could have other illnesses) and have little significance to actual CFIDS/ME, a neurological and immunological illness.
While some underlying abnormalities may be treated, treatment is limited to trying to relieve the worst symptoms and often is not successful. Most specialists advise beginning treatments at very low doses (sometimes less than pediatric doses) and building up slowly to avoid side effects and to find the correct amount. The National CFIDS Foundation, Inc. offers members information on symptomatic therapies that specialists have recommended. Click here for information on joining.
12: Are vaccines recommended for CFIDS/ME patients?
Vaccines are not recommended for any immuno-compromised individual. It has been suggested that many patients do not develop antibodies (sero-convert) to a vaccination although many will have severe side effects.
13: Do CFIDS/ME patients qualify for Social Security Disability?
Yes, but to qualify for Social Security's Supplemental Security Income (SSI), both financial and disability standards must be met. To be eligible for Social Security Disability Insurance (SSDI), only disability standards along with work quarters paid into the system must be met. For both, the patient must be unable to do or maintain any gainful employment including part-time or sedentary work, and this inability must be permanent which means it is expected to last for at least one year. All those with CFIDS/ME should apply as soon as they meet the eligibility since the process is not short. The forms do not need to be picked up in person but can be mailed out. Insist upon your rights!
It is not unusual for those with CFIDS/ME to be rejected on their first try. They must then apply for reconsideration. Again, many are turned down but do not give up! Only at the third level — when you are a person instead of a number and you are heard in front of an Administrative Law Judge — do most get a favorable result. Never go to this stage without the representation of an attorney who is knowledgeable about this particular illness! Those with representation can sometimes get a favorable reply at the second level.
The CFS (CFIDS) SSI/SSDI Disability Guidebook (2003) is available from The National CFIDS Foundation for $5.00 (for members) or $7.00 (for non-members). Send your check or money order in U.S. funds along with a note requesting the CFS (CFIDS) SSI/SSDI Disability Guidebook to The National CFIDS Foundation, 103 Aletha Road, Needham, MA 02492 USA. Click here to order online. The cost covers postage and a portion of the printing costs. The guidebook includes an example of a good physician's letter, a physician's guide to the tests that can help determine objective medical evidence for a disability, a more complete checklist of symptoms, a vocational expert's guide as well as an easy-to-follow format for applying for disability. It is written for those with CFIDS/ME in a clear and easy to read format.