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Fibromylasia and Hepres Virus 6

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 Human Herpes Virus 6

Twenty years after the discovery of Epstein-Barr virus (EBV) a new herpes
virus was reported by Salahuddin and his associates (1). This new virus
was isolated from Patients with AIDS and other lymphoproliferative
disorders and was eventually named as human herpesvirus type-6 (HHV-6).
HHV-6 is the smallest of herpesviruses (170 kb) and has been classified as

beta-herpesvirus. HHV-6 has been reisolated by many laboratories and a
consensus conference has classified them into subgroups A and B. The
subgrouping is based on restriction endonuclease sites, and biological and immunological characteristics (2,3). Antibody to HHV-6 and therefore, possible exposure/infection is detected in <80%  individuals in the Western world. (4,5). From all indication it appears  that the infection by HHV-6 takes place very early in life after the acute phase the virus becomes dormant to be activated at a later time.HHV-6 can be reactivated by the usual factors e.g., immunological and environmental (6). HHV-6 is exclusive T-cell tropic, induces and upregulates CD4 receptors and cytokine expression, enhances the killing of cells infected with other lytic viruses such as HIV-1 (4,5,9,10,15-21). There is evidence for the association of HHV-6 with at least three lymphoproliferative diseases; causative agent for childhood disease Roseola (Exanthem subitem) (7), febrile illness in young children (8), and EBV- and CMV- negative cases of mononucleosis in young adults(4,5). This is an important pathogen that can initiate pathologies mentioned before, it may also be a cofactor in several other diseases such as AIDS,      cervical carcinoma, and oral carcinoma (9,13,14). HHV-6 is reactivated in infectious diseases, proliferative disorders, and immune deficiencies (4,5,8-12).
A variety of pathogens either co-infect the same cell or are present in the same environment. Type and level of viral antigens for example and the duration of their presence in that milieu can be important factors that my give rise to a particular disease. Whereas HHV-6 and HIV-1 may give rise to AIDS-like disease, HHV-6 in conjunction with HPV may result in malignancy of the cervix. HHV-6 becomes latent after the initial infection and can be reactivated by a variety of viruses and vice versa. Interaction between the viruses may take place after the reactivation of these agents.


Stealth Virus Application to
Chronic Fatigue Syndrome

Please bear in mind that this is a summary of Stealth Virus Research as conducted by Dr. John Martin and Associates at the Center for Complex Infectious Diseases (CCID). This is in layman's language to the extent possible. Any errors or omissions are the fault of the S-VIRUS Group webmasters who wrote this document and should not be attributed to Dr. Martin or the CCID. 
Dr. Martin's Hypothesis is that the disease known as Chronic Fatigue Syndrome (CFS), also called Chronic Fatigue Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (M.E.) simply refers to a loose grouping of certain symptoms that are part of a much wider spectrum of the clinical manifestations of viral-induced organic brain damage. 

These viruses are termed "Stealth" because although they cause significant cellular damage they do not typically evoke a strong anti-viral inflammatory response. Nevertheless, an infected patient's immune system may be chronically  up-regulated or otherwise impaired due to it's constant search for something it "feels" is there but cannot locate and destroy. 

Stealth viruses are best viewed as "derivatives" or as "down-sized" conventional viruses. They include but are not limited to derivatives of human and animal herpesviruses. The "stealth adaptation" consists primarily of the deletion of the gene coding for the major antigenic components normally targeted by the cellular immune system. 

Stealth viruses do not grow as efficiently as conventional viruses, but have a striking advantage over conventional viruses in  not having to confront the body's cellular immune defense mechanisms. They can therefore create persistent ongoing  infections despite an individual's intact or even up-regulated immune system. This is different from a latent infection seen with many human herpesviruses in which the virus is essentially inactive except for brief periods of viral activation, rapidly controlled by the body's immune mechanisms. 

The presence of a stealth virus may be an explanation for the unusual RNase-L enzymes found in CFS patients in recent research conducted by Dr. Sudolnick at Temple University School of Medicine and by independent European research. 

The CCID's stealth virus research program got a recent unexpected, if unfortunate, boost due to an outbreak of a CFS-like epidemic in Mohave Valley, in the Kingman, Arizona, Needles, California, and Laughlin, Nevada triangle. This particular strain was found to be contagious, but Dr. Martin cautions that CFS should not be characterized as a "catastrophic contagious epidemic" since it appears that patient succeptibility due to genetic, environmental, or other factors plays a part in contracting CFS. 

Now that Dr. Martin and his associates have conclusively proven the existence of stealth viruses, they are focusing research in the following avenues: 

       1.Developing theraputic agents to inhibit stealth viruses (Epione project) 
       2.Sequencing the RNA genomes from stealth virus isolates of severely ill
          patients. 
       3.Improving methods for detecting and characterizing stealth viral infections 
          using tissue culture, molecular, and serological techniques. 
       4.Associating stealth viral infection with specific neurological and 
          non-neurological diseases.
       5.Testing for transactivation of SV40 and B19 parovirus by stealh viruses. 

As alluded to in Item 3, this research has applicability well beyond CFS. It could lead to major discoveries in alleviating the symptoms of Fibromyalgia, autism, bipolar disorder, attention deficit disorder, and even more conditions which may stem  from stealth virus infections. 


    Stealth Virus Infection And Chronic Fatigue Syndrome (click)


STEALTH VIRUS INFECTION IN CFS PATIENTS
 W. John Martin, M.D., Ph.D.
Center for Complex Infectious Diseases 
Rosemead CA 91770

      Basic Concepts:

The entity called chronic fatigue syndrome (CFS) simply refers to a loose grouping of certain symptoms that are part of a much wider spectrum of the clinical manifestations of viral induced organic brain damage. The preferred term for  the underlying organic brain disease is viral encephalopathy (viral pathology of the brain). The term CFS should be discarded.

The viruses that are associated with CFS are termed "stealth" because, although,
they cause significant cellular damage, they do not typically evoke an anti-viral
inflammatory response. They are best viewed as "derivatives" or as "down-sized" 
conventional viruses. They include but are not limited to derivatives of human and
animal herpesviruses. The "stealth adaptation" consists primarily of the deletion
of the genes coding for the major antigenic components normally targeted by the 
cellular immune system. Stealth viruses do not grow as efficiently as conventional
viruses,  but have a striking advantage over conventional viruses in not having to
confront the body's cellular immune defense  mechanisms. They can, therefore,
create persistent ongoing infections in spite of an individual's intact immune system.
This is different from a latent infection seen with many human herpesviruses in 
which the virus is essentially inactive except for brief transient periods of viral 
activation, rapidly controlled by the body's immune mechanisms..

Both in cell cultures and in infected tissues, viral infection can lead to the development
of foamy vacuolated cells, which may form syncytia. The cellular changes can be readily seen using electron microscopy. With most  conventional viruses, the formation of intact viral particles precedes the induction of major cytopathic effects. The appearance of intact fully formed viral particles is much less of a feature in stealth viral
infections. Typically one may merely see accumulations of viral like components,
possibly with incomplete virus-like structures, in a cell which displays intense cytopathic effects.

The types of viral products that accumulate in stealth viral infected cells can differ
between different stealth viral  isolates. In some cultures the predominant material
may be coarse nucleocapsid-like materials, in others there may be collections of
fine granular deposits, still other cultures may show an over expression of viral 
envelope structures. A common feature, however, is the apparent metabolic 
disruption expressed as mitochondrial damage, lipid  accumulation, extensive 
cytoplasmic vacuolization, and altered nuclei. Infected cells are metabolically
impaired  because various energy and other resources are diverted towards
the synthesis of viral components at the expense of  normal functions. Severe
defects in energy generating metabolic pathways are apparent in the marked mitochondrial disruption that is prominent in electron micrographs of viral infected cells.

An important observation concerning the development of the in vitro cytopathic
effect is that it can be inhibited by  substances that accumulate in the media
of infrequently fed cultures. These substances can be removed by frequently
replacing the tissue culture medium. They also hold promise in the potential
therapy of stealth viral infection. The inhibitor(s) in tissue culture supernatants
has been termed "Epione" after the wife of Ascepius, the Greek God of medicine.
Epione was reputed to have skills in soothing pain.

      Clinical Implications:

Stealth viral infected patients have a systemic viral illness. Although the infection
and resulting cellular disruption is  systemic, many of the symptoms experienced
by infected patients relate to dysfunction of the brain. This merely  reflects the
unique susceptibility of the brain to localized viral induced damage. Significant
viral damage to other organs, such as the bowel, liver, thyroid, adrenal, etc.,
can, however, add to the neurological dysfunction resulting from viral infection
within the brain.

The clinical diversity of neuropsychiatric symptoms seen in patients labeled with
various neurological, psychiatric, rheumatological and behavioral problems is
probably determined by the localization of the brain infection, as well as by
genetically and environmentally determined differences in predisposition to 
various symptoms. Additionally, the extent of viral damage to other organs
can impact on the overall clinical presentation.

Potential complications of viral infection include the induction of auto-immunity,
antigen-antibody complex formation, ischemia resulting from viral vascular damage,
breakdown of both the physical barriers and the cellular clearance mechanisms 
operative against common bacteria, transactivation of other viruses, and finally 
the induction of malignancy.

      Therapy:

The primary therapeutic approach is aimed at suppressing viral expression and
the further spread of viral infection. In several cases partial success has been
seen using intravenous and/or oral ganciclovir. Next are efforts that can augment 
cellular metabolic function. In principle one is faced with the quandary of not 
wanting to "feed the virus" by giving nutritional supplements. To help avoid this
possibility, one should take advantage of the cover provided by anti-viral agents
to restore metabolic health. Another important therapeutic goal is to attempt,
through adjustments to sensory inputs, followed if necessary by low dose therapy
with neuromodulating agents, to promote normal brain function. Activities which
aggravate the patient's symptoms should be avoided, while those that ameliorate
symptoms should be employed. The pharmacological approach is largely one 
of trying different medications and the patient observing what effects, if any,
occur. The patient should be willing to maximize the potential placebo effects of
prescribed medications and other adjustments while at the same time remain
objective when comparing medications.The physician prescribing the medication 
also needs to remain objective and sensitive to the potential side effects of
neuroactive medicines.

Non-neurological illness, especially those that can indirectly affect neuronal
function, for example leaky bowel with impaired liver detoxification, hypo- or
hyperthyroidism, adrenal insufficiency, etc., need to be addressed on an
individual basis. Finally, the patient should be encouraged to relearn cognitive
skills to the extent possible.

      Prevention:

The issues of potential contagiousness of a stealth viral infection is relevant
within the context of family and friends of patients, work environment especially
educational personnel dealing with infected children, health care workers, and
recipients of blood products and viral vaccines produced in primary cultures of
animal tissues.

      Clinical Research:

A major goal of clinical research is the application of standardized approaches
to measure and to monitor deficits in brain functions associated with stealth 
viral infections. The use of labels such as CFS, fibromyalgia, gulf war syndrome,
depression, dementia, attention deficit, autism, etc., etc., obscure the major
overlaps that can be seen in stealth viral infected individuals. To address this,
a series of simple but objective clinical tests are being devised to more efficiently
document the scope and severity of brain dysfunction in all stealth viral infected 
patients. These tests, along with repeat viral cultures can form the basis of 
evaluating and optimizing various therapeutic approaches.

      Basic Research:

The primary goal is to isolate and characterize the inhibitory component(s) 
present in stealth viral culture medium. The second goal is to develop and
apply serological assays to determine if an individual is at risk for infection
with a particular stealth viruses. The results will help in counseling family
members as to their potential risks. Similar studies can be applied to
household pets. The possibility of vaccination of household pets and
family members will also need to be addressed.

      Additional Information:

Physicians interested in enrolling patients into therapeutic trials are asked to
contact CCID at 3328 Stevens Avenue, Rosemead CA 91770. Suggestions
as to possible alternative approaches to therapy are welcomed. A computerized
data base is being established to help allocate patients to various treatment 
options and to rapidly validate the efficacy of promising therapies.
Patients in whom the disease has spread to family members or to household
pets are asked  to contact CCID directly by calling (626) 572-7288.
Similarly, families in which an array of differing illnesses have
occurred among family members should contact CCID. Written reports of these
illnesses or of other outbreaks can be sent to CCID via FAX at (626) 572-9288.

For More Information On Stealth Virus Research-
Visit The Center For Complex Infectious Diseases:  (Click)


          Funding and Support:  (Click Here)

                                      Stealth Virus Trust Account
                                             c/o CCID
                                        3328 Stevens Avenue
                                        Rosemead CA 91770

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Fibro/CFIDS/ME- "Hot Links" Last Updated On: 9/01/99

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"Can't Afford Your Prescription"
"Medication"
Free Prescription Medicine is Available to those who Qualify. 
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Information about Medications
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 Devin Starlanyl

 This information may be freely copied and distributed only if unaltered, with complete original content including: ©
 Devin Starlanyl, 1995-1999

      Often, you may have to try many medications before you find the optimum ones for you. We react
      differently to each medication, and there is no "cookbook recipe" for FMS or MPS. What works well for
      one of us can be ineffective for another. A medication which puts one person to sleep may keep another
      awake. Each of us has our unique combination of neurotransmitter disruption and connective tissue
      disturbance. We need doctors who are willing to stick with us until an acceptable symptom relief level is
      reached. 

      These are not the only medications in use for FMS & MPS, but are simply a selection to show what is
      available. It may be necessary to address each perpetuating factor, such as pain, lack of restorative
      sleep, and muscle rigidity, separately. Medications should be used along with a program of proper diet,
      life style changes, mind work and bodywork.

      Medications which affect the central nervous system are appropriate for FMS&MPS Complex. They target
      symptoms of sleep lack, muscle rigidity, pain and fatigue. Pain sensations are amplified by FMS, and so
      the pain of MPS pain is multiplied. FMS&MPS Complex patients often react oddly to medications.

      It is the rule rather than the exception that a FMS&MPS Complex patient will save strong pain meds from
      surgery or injury for when they REALLY need it -- for an FMS&MPS Complex "flare". This is a sign that
      your needs aren't being met. I give you the following quotes. I hope you will pass them on to your doctor.
      They are from "PAIN A Clinical Manual for Nursing Practice", by McCaffrey and Beebe.

           Health professionals "often are unaware of their lack of knowledge about pain control." 
 

           "The health team's reaction to a patient with chronic nonmalignant pain may present an impossible
           dilemma for the patient. If the patient expresses his depression, the health team may believe the
           pain is psychogenic or is largely an emotional problem. If the patient tries to hide the depression by
           being cheerful, the health team may not believe that pain is a significant problem." 
 

           "Research shows that, unfortunately, as pain continues through the years, the patient's own
           internal narcotics, endorphins, decrease and the patient perceives even greater pain from the same
           stimuli." 
 

           "The person with pain is the only authority about the existence and nature of that pain, since the
           sensation of pain can be felt only by the person who has it." 
 

           "Having an emotional reaction to pain does not mean that pain is caused by an emotional problem. 
 

           "Pain tolerance is the individual's unique response, varying between patients and varying in the
           same patient from one situation to another." 
 

           "Respect for the patient's pain tolerance is crucial for adequate pain control." 
 

           "THERE IS NOT A SHRED OF EVIDENCE ANYWHERE TO JUSTIFY USING A PLACEBO TO
           DIAGNOSE MALINGERING OR PSYCHOGENIC PAIN." 
 

           "No evidence supports fear of addiction as a reason for withholding narcotics when they are
           indicated for pain relief. All studies show that regardless of doses or length of time on narcotics, the
           incidence of addiction is less than 1%." ] 

      This book is so clear and so well documented that I suggested my local library buy it. I wanted everyone
      in the area to have access to this information. Once you read this book, you get a greater understanding
      of pain and pain medications, as well as coping mechanisms. Many non-pharmaceutical methods of pain
      control are also described thoroughly in this reference.

      It's normal to be depressed with chronic pain, but that doesn't mean depression is causing the pain.
      Maintenance with mild narcotics (Darvocet, Tylenol #3, Vicodin-Lorcet-Lortab) for nonmalignant
      (non-cancerous) chronic pain conditions be a humane alternative if other reasonable attempts at pain
      control have failed. The main problem with raised dosages of these medications is not with the narcotic
      components, per se, but with the aspirin or acetaminophen that is often compounded with them. For
      medical journal documentation on the use of narcotics for non-malignant chronic pain, see "The
      Fibromyalgia Advocate". Narcotics should not be given in conjunction with benzodiazepines, as the latter
      antagonize opioid analgesia.

      Narcotic analgesics are sometimes more easily tolerated than NSAIDS, the Non-Steroidal
      Anti-Inflammatory Drugs. Neither FMS nor MPS is inflammatory. NSAIDS may disrupt stage 4 sleep.
      Prolonged use of narcotics may result in physiological changes of tolerance or physical dependence
      (with- drawal), but these are not the same as psychological dependence (addiction). Under-treatment of
      chronic pain of MPS/FMS results in a worsening contraction which results in even more pain. "Anti-
      anxiety" medications are not an indication that your symptoms are "all in the head". These medications
      don't stop the alpha-wave intrusion into delta-level sleep, but they extend quantity of sleep, and may ease
      daytime symptom "flares".

      Stay tuned to the Fibromyalgia Network for news of more medications of possible use in FMS&MPS
      Complex. 

      Guaifenisen: 
           Guaifenisen appears to reverse the process of FMS. It is in experimental use. I have a whole
           chapter in both books on it. A flawed study was done that seemed to show it was no better than
           placebo. 

           Please see the frame on Guaifenisen 

      Folic acid: 
           This vitamin is often in short supply in FMS & MPS. Drs. Travell and Simons found it especially
           effective for Restless Leg Syndrome. 

      Relafen (nambumetone): 
           this is a NSAID that is often well tolerated because it is absorbed in the intestine, sparing the
           stomach. 

      Benedryl (dyphenhydramine): 
           a helpful sleep aid/antihistamine which is safe in pregnancy. This should be the first sleep
           medication tried. some patients have reported urinary retention. The starting dose is 50 mg 1 hr.
           before bed. Increase as tolerated until symptoms are controlled or 300 mgs. About 20% of patients
           react with excitation rather than sedation when taking Benadryl. (non-prescription) 

      Desyrel (Trazadone): 
           an antidepressant that helps with sleep problems. It must be taken with food. 

      Atarax (hydroxyzine HCl): 
           suppresses activity in some areas of Central Nervous System to produce an anti-anxiety effect.
           This antihistamine and anxiety-reliever may be useful when itching is a problem. 

      Elavil (amitriptyline): 
           a tricyclic antidepressant (TCA) is cheap and sometimes useful. It generates a deep stage four
           sleep. Most patients will adapt to this med after a few weeks. It can cause photosensitivity and
           morning grogginess. It often causes weight gain, dry mouth, as well as stopping the normal
           movements of the intestine. It may cause Restless Leg Syndrome. 

      Wellbutrin (bupropion HCl): 
           is a weak Specific Serotonin Reuptake Inhibitor (SSRI) and antidepressant that is sometimes used
           in FMS&MPS Complex in place of Elavil. It can promote seizures. It seems to be less likely to
           promote sexual dysfunction than the most SSRIs. 

      Ambien (zolpidem tartate): 
           hypnotic -- sleeping pill, for short-term use for insomnia. There have been reports of serious
           depression, but some people with FMS find it allows them to experience restorative sleep. 

      Soma (carisoprodol): 
           acts on Central Nervous System to relax muscles, not on the muscles themselves. It works rapidly
           and lasts from 4 to 6 hrs. It helps detach from pain, and modulates erratic neurotransmitter traffic,
           damping the sensory overload of FMS and muscular rigidity of MPS. 

      Flexeril (cyclobensaprine): 
           this medication can sometimes stop spasms, twitches and some tightness of the muscle. It is
           related chemically to Elavil. It generates stage four sleep, but it may cause gastric upset and a
           feeling of detachment from life. 

      Sinequan (doxepin): 
           heterotricyclic antidepressant and antihistamine. It can produce marked sedation. This medication
           may enhance Klonopin, but can reduce muscle twitching by itself. 

      Prozac (fluoxetine hydrochloride): 
           anti-depressant that increases the availability of serotonin, useful for those patients who sleep
           excessively, have severe depression and overwhelming fatigue. Some people have reported
           profound depression from Prozac. 

      Ultram (tramadol): 
           non-narcotic, Central Nervous System medication for moderate to severe pain, in a new class of
           analgesics called CABAs -- Centrally Acting Binary Agents. Many people said it brought more
           alertness for longer times, and less "fibrofumble" of the fingers. It can lower the seizure threshold.
           Side-effects reported are grogginess, insomnia (may not be able to take at night), headache or loss
           of sex drive. Some people have reported profound depression resulting from Ultram. 

      Hydrocodone/Guaifenisen Syrup: 
           This medication is generally given as a cough suppressant. Each teaspoon contains 5 mg.
           Hydrocodone and 100 mg Guaifenisen. It has no aspirin or ibuprofen. It may be effective for pain
           medication, and can be "titrated" because it is in syrup form. The patient can take very small
           amounts and can find the amount which works without causing undue side effects." 

      Xanax (alprazolam): 
           an anti-anxiety medication, that may be enhanced by ibuprofen. It must not be used in pregnancy. It
           enhances the formation of blood platelets, which store serotonin, and also raises the seizure
           threshold. When stopping this medication, you must taper it very gradually. 

      EMLA: 
           a prescription only topical cream, that may help cutaneous TrPs. It is a mixture of topical
           anesthetics. 

      Pamelor (nortriptyline): 
           this is used to help sleep. Some people find it stimulating, and must take it in the morning. Others
           use it before bed to help sleep. Some reports of depression with use. 

      Klonopin (clonazepam): 
           anti-anxiety medication and anticonvulsive/ antispasmodic. It is useful in dealing with muscle
           twitching, Restless Leg Syndrome and nighttime grinding of teeth. 

      BuSpar (buspirone HCl): 
           may improve memory, reduce anxiety, helps regulate body temperature, and is not as sedating as
           many other anti-anxiety drugs. This medication often takes a few weeks to take effect. 

      Zoloft (sertraline):
           this is an SSRI and antidepressant, and is commonly used to help sleep. It has less of an effect on
           liver enzymes than other SSRIs. 

      Tagamet, Zantac, Prilosec, Axid:
           often used to counter esophageal reflux. Tagamet may increase stage 4 sleep, and enhance Elavil.
           Acid suppressors may interfere with B-12 absorption. 

      Paxil (paroxetine HCl): 
           serotonin and norepinephrine reuptake inhibitor, and may reduce pain. It should not be used with
           other meds that also increase brain serotonin. Suggested dosage is 10 mgs (half a scored tablet)
           may cause insomnia or drowsiness. 

      Effexor (venlafaxine HCl):
           Fast acting antidepressant and serotonin and norepinephrine reuptake inhibitor. Suggested trial
           dosage is 25 mg, taken in the morning. Food has no affect on its absorption. When discontinuing
           this medication, taper off slowly. May raise blood pressure. 

      Inderal (propranolol HCl): 
           sometimes helps in the prevention of migraine headaches, although blood pressure may drop with
           its use. Antacids will block its effect, and should not be used. May be very useful in decreasing
           "adrenalin rush". 

      Librax: 
           for Irritable Bowel Syndrome. It is a combination of antispasmodic plus tranquilizer, that helps
           modulate bowel action. 

      Diflucan (fluconazole): 
           this antifungal penetrates all of the body's tissues, even the central nervous system. Very short
           term use can be considered if cognitive problems and/or depression is present, and yeast is
           suspected. Yeast may also be at the root of irritable bowel, sleep dysfunction (muramyl dipeptides
           from bowel bacteria induce sleep), and other common FMS problems. 

      Imitrex (sumatriptan): 
           this is available as an injectable solution or pill that will not prevent migraines, but it is effective for
           migraine pain in many cases. Works on serotonin release instead of blood vessel spasm, and may
           provide relief in less than 20 minutes. It should not be used within 24 hours of ergot (a common
           migraine drug) medications. It can increase blood pressure. It may cause spasm of muscles in
          jaw, neck, shoulders and arms. Also reported were tingling sensations, rapid heartbeat and the
           "shakes". Frequent use of Imitrex may cause a rebound reaction, worsening migraines. 

      Remeron (mirtazapine) 
           tetracyclic antidepressant, which effects several neurotransmitters, including serotonin and
           norepinephrine. May cause drowsiness and/or weight gain. Reported increase in cholesterol with
           some patients. 

      Zanaflex (tizanidine) 
           is a relatively new medication for muscle tightness and pain. It also reduces muscle spasm
           frequency and myoclonus. Effective dosage varies considerably in patients. May cause
           drowsiness." 

      COX-2 inhibitors 
           These medications will be out shortly. They block cyclooxygenase-2, an enzyme that helps create
           enormous mounts of prostaglandins. they not only seem to be effective for inflammation (FMS &
           MPS are not inflammatory), but they may be a promising alternative to narcotics for pain relief. 

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Information On Long Lasting-
Narcotic Pain Medication.
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By: Mark Norwood. Head Nurse, Scientist,  & CEO: MED-HELP.COM
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This information is free to copy and distribute, (only if unaltered) with complete original content including: ©

Oxycontin:
 

MS Contin:
 


 


 

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"Death & Dying in Fibromyalgia"
From Our FM/CFS World inc Diana Saba VP [&] RJ Russell Jones President,
 
This is three deaths I know about in the last three weeks, all self-inflicted. I know there must be many more." {{{}}}Devin J.
Starlanyl, M.D.

---------------------------
To whom it may concern:  DianaVP@abcjb.com   Our FM/CFS World inc Diana Saba VP

I opened my email and read a newsletter this morning from Bev, who writes the FM'LY TIMES.

She reports another suicide. .

Lisa ...

Many who live with Fibromyalgia and Chronic Fatigue Syndrome and realated disorders have now lost another fellow fibromite
thru suicide.

What will it take to open the eyes of the Congress, Media, and Physicians, ??

How many more lives will it cost??

Many have said, " thru research, that depression is part of our illness." 

Suicide indicates that depression, chemical brain changes, can contribute to our illness.

One thing for certain is that the longer these illnesses go untreatable, we can expect to hear about more suicides.

We all knew that suicide would happen again.

It is just one of the many conditions that accompany persons with Fibromyalgia and Chronic Fatigue Syndrome and related
disorders. Unfortunately, suicide is one condition that seems to eleminate all the other symptoms of these illnesses.

Many of us found our way to educating ourselves about these illnesses thru sources shared by those of us who have been
diagnosed with Fibromyalgia and Chronic Fatigue Syndrome.

We have wrote letters to Congress, to Media Sources, we have shared our research with our Physicains, and others who have
come searching for answers as to why they are so sick and in hopes of finding the research to mend our illnesses.

Still, one more person has chosen to end her life.

I write this letter to ask Congress, The Media, Our Physicains, will you please do everything possible to help us find our answers.

There are so many and the numbers and numbers of persons who suddenly become ill and have not been able to have their good
health restored, is becoming more and more frightening. Whats even more frightening is the loss of Lisa. 

I don't know if I ever had contact with Lisa thru our internet support groups. 

Maybe, she contacted Congress Members, Media Sources, and surely her Primary Physician had contact with her. Can you help
her now ??

Can you please help all the rest of us, now ??

Diana Saba

 ---------

Part of a news letter going out

 Hello 

Another one Slips through the Cracks and passes on! We still set here tiring to help stop this!

We may lose most of our old readers at the end of this letter but I have to know who cares! I
may not Be President here after this either because I'm acting on my own !! Read on.

This is always sad news to us and very personal to all, This is what our group is for to
educate even the medical community. I'm hoping within a year we can at least get weekly ads
into USA today. To many of FM/CFS and Chronic pain suffers are not getting the proper
information or getting to the right doctors that know how to treat us properly now to stop This
from happening. Or even knowing what they have as far as being sick all the time. I'm as
frustrated as any one to see this happening over and over for no good reasons I can see for it
to continue happening!! 

I wish we could start running ads tomorrow about these illnesses nationally and get people to
information, including the medical community who still overall in my opinion do not believe in
FM/CFS and related disorders and Syndromes Like This article Click Here showing the problems. I
wish we had a sponsor to take it to television in our own advertisements now to start getting
people to the organizations out there, That can help people get to proper care and push the
medical community and politicians into doing something instead of ignoring us. Our mission is
clear to us we have to make the wheels squeaky to get some oil put on them. 

In short we need to buy the media time and space and push education and awareness as hard as we
can this is the only way I can see we're going to get things like this to be a memory not
something is going to keep happening because we find ourselves constantly being ignored by
people that can help us and don't! The media is not coming to us! and either to date is our own
community helping us to get to our goals faster . 4 people out of over 400 on our own email
list and some in the past were not even from people who know us have kept us when we ask for
help sending in donations and over 400 Do nothing so for now we keep spinning our wheels just
making expenses and not being able at this time to make the next step! 

It been time to push and it keep getting longer for us and its hard to sit here knowing what
needs to be done and can do it now for us an organization If we get Help !!

We can only help if we are helped and money is the tool to get job done! We are already to push
as hard as funds will allow us to do. The more Media the more Pressure = more funds for
research and help to stop any one else from Leaving us this way! 

I have been close to this in the past. I Was lucky a Dr. finally knew what I had and started to
reverse my life to livable. Millions are still out there in the dark without computers we never
know when they are missing by taking their life's! 

I cant even imagine how many do not have even other people to even talk to, let alone and Dr.s
still missing a FM/CFS Dx and leave suffers in the millions without any knowledge they can be
helped some if they had a chance to hear about FM/CFS. 

We don't think about this as a whole. We as FMily are a very small group on computers, compared
to the suffers our there, You don't see millions visits to sites let alone 2.5 last CDC Est
That I know of on the net because they are not !! This est includes millions of people still
going to Dr. and Dr. and told there is nothing wrong with them. Please think past the screen in
front of you and think about how many we can help with a TV screen that can not afford or want
a comp we can send info to about FM/CFS and organizations out there to help there long journey
to a Dx by getting Info to them even on the symptoms to show a Dr. Who is at a loss to the
problems of FM/CFS suffer or even the symptoms! If we could get funds to do it quicker we would
be able to inform the public our self's as FM/CFS suffers we can make a big difference our
self's ! The Fight From Within !!! 

President, Our FM/CFS World Inc. 

RJ Russell Jones   We run this site to show we can do something as FM/CFS people and suffers to
help us everyone Including our Selfs. Let turn this around Please we want to get our work going
not sit and just have the largest Website for info we know of but its time to use it.

added 05/17/99 this is in a article on site I just had sent to me look at the numbers of est
from Newsweek 1990

CFS/CFIDS Est

Newsweek, back in 1990, quoted estimates of at least five to ten million
people in the U.S. affected by this disorder, with an estimated one million in Los Angeles
alone. Researchers familiar with this syndrome quote a possible clinical occurrence rate at 3%
- 5% of our population (or higher !). Currently epidemiologists are finding incidents of 1 -
1.5%, acknowledging probable under-reporting. We urgently need to implement a
"controlled" database and research tools to help define and control this disorder as rapidly as
possible. Click Here to Article on CFS and children with ADD/ADHD 

-------------------------

*I was informed a few days ago of the suicide death of another FM'ily member. I cannot say that this happened for certain, but
my source is reliable. So this prayer request is for the family and friends of that person, as well as for ALL OF US with
Fibromyalgia/CFIDS and related disorders--for strength to cope, for patience as we wait for a cure, for doctors who understand,
and for  friends to help us through the tough times.
Last minute note:
I received the following confirmation this afternoon,and wanted to include it in this newsletter--
"We have lost another FMily member to suicide. Tomorrow at 5pm EST we will have a memorial service for Lisa Wickberg on
http://my.webmd.com/index.html 

(once was SHN) where she was a group member. For those who cannot attend, please take a moment for a prayer or a kind
thought. Add a little prayer to open the eyes and ears of those doctors and others who don't take FMS and MPS seriously. This is
three deaths I know about in the last three weeks, all self-inflicted. I know there must be many more." {{{}}}Devin J. Starlanyl,
M.D.
http://www.sover.net/~devstar
 

More added on this RJ this was just sent to me this was in Chcago close to 05/05/99 

Paula

I just wanted to report that a collegue of mine shot his wife and himself because of her having been diagnosed with myofascial pain
syndrome and thinking there was no help. According to his parents they were so much in love that he couldn't stand seeing her in
pain and they were told there was nothing that could be done. Of course I was shocked and saddened, but part of me was angry
because they had just begun to seek help and some shmuck doctor told them there was nothing that could help.

Thanks for listening.

Paula
pauladk@ync.net
*******************************************

President@abcjb.comOur FM/CFS World Inc.  | Click Here | For Donation Address Info

New from Diana's Letter to 48 hours

From:    48HOURS@cbsnews.com   (48HoursINTERNET)
To:   DGsaba@aol.comRJ2500@aol.com 

Please let us know what information you are looking for regarding the

pain show. We'll gladly try to help you. Thank you. 05/05/99
This is for: Our FM/CFS.World, Inc. (click)
 Click Here | to join in on our discussion groups at Our FM/CFS

                Click Here | FMily Sites FM/CFS and Related disorders, made by other suffers 

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