- Introduction: CFS - Basic Information
- Definition: Official Case Definition
- Doctors: Info: for medical doctors, Chronic fatigue syndrome
- Tests: Tests: Patient Clinical
- Test: Questran drug to bind toxins
- Terms: Why the name Myalgic Encephalomyelitis should be Restored
- Research: Neurally Mediated Hypotension (NMH)
- Research: Biological Marker Study Published
- Research: Autonomic Nervous Abnormalities Found
- Treatment: Treatment Options for CFIDS
- Treatment: Approach: The Maharishi AyurvedaSM
- Origin: Gulf War Syndrome
- Association: CFS Assoc of Long Island
- IACFS: Association, International, for CFS
CFS - BASIC INFORMATION, 2000?
Quotes:
Chronic Fatigue Syndrome is the name the Government has chosen to give a very complex illness that affects approximately 2 million Americans and has been documented in almost all industrialized countries of the world. Chronic Fatigue Syndrome (CFS) is a very serious illness that is far more then the name implies. CFS is not believed to be a new disease. Documentation of similar illnesses goes back hundreds if not thousands of years.
One of the biggest problems the CFS community has to deal with is the name itself. Chronic Fatigue Syndrome is much more than just being tired. Fatigue can be a main symptom of the illness but that is far from the only malady a CFS patient has to deal with. Naming the disease Chronic Fatigue Syndrome would be the same as naming Emphysema, Chronic Cough Syndrome or naming Parkinson's Disease, Chronic Shaky Syndrome. It's this aspect that trivializes the illness and causes major confusion with the general public not to mention uniformed physicians. ...
Comments: not updated for a long time.
Official Case Definition, 1998?
Quotes:
The following is the case definition for Chronic Fatigue Syndrome as it was published in The Annals of Internal Medicine in December 1994.
Fatigue:
Patients must have otherwise unexplained, relapsing fatigue that is new (not life-long; not the result of ongoing exertion; not relieved by rest; and that results in substantial decreases in levels of occupational, social, educational, or personal activities.
Symptoms:
The patient must have four or more of the following eight symptoms. Symptoms must persist for six months and the patient must not have predated fatigue.
- Self-reported impairment of memory or concentration that affects occupational, social, educational, or personal activities.
- Sore throat.
- Tender cervical (neck area) or axillary (underarm area) nodes.
- Myalgias.(muscle pain)
- Arthralgias (pain along the nerve of the joint). No redness or swelling.
- Headache of a new type.
- Unrefreshing sleep.
- Post-exertional malaise, lasting at least 24 hours.
Clinical and Laboratory Evaluation:
- Thorough medical history.
- Mental status examination.
Evidence of psychiatric or neurologic disorders requires consultation.
- Thorough physical examination
- Tests to rule out other illnesses. Tests should include the following;
- Complete blood count (CBC).
- Erythrocyte blood count.
- Chemistry panel.
- Urinalysis.
- Thyroid stimulating hormone.
- Further testing may be suggested on an individual basis; for example, an MRI to rule out MS.
Examples of conditions that can explain fatigue that may rule out the diagnosis of Chronic Fatigue Syndrome:
- A medical condition, such as untreated hypothyroidism, sleep apnea, narcolepsy, or the effects of some medications.
- Previously diagnosed and unresolved medical conditions such as malignancy or chronic hepatitis.
- Major psychiatric disorders, past or present, including major depressive disorder, bipolar disease, schizophrenia, anorexia nervosa, or bulimia.
- Substance abuse within two years before the onset of fatigue or at any time after the onset.
- Severe obesity.
Conditions that re permitted in the case definition,
yet do not explain fatigue:
- Conditions that laboratory tests can't confirm such as Fibromyalgia, anxiety disorders, non-psychotic depression, or multiple chemical sensitivities.
- Medical condition that might cause fatigue but have been treated adequately; examples might be, hypothyroidism with normal thyroid levels.
- Lyme disease or Syphilis treated before the onset of CFS.
- Any isolated or unexplained physical finding or laboratory test.
Comments: not likely updated since 2000; good basic summary.
Chronic fatigue syndrome information for medical doctors, 1998?
Quotes:
Dr. Paul Levine of NIH writes: "the case definition for CFS is a research definition, and as a result there are a number of exclusions (e.g., a history of neoplastic or other disorders) that are routinely invoked to define a more homogeneous group of patients as study subjects. Clinically, however, there is no reason why a patient excluded by a research protocol should not be managed for CFS if that is the apparent clinical diagnosis." ...
The journal citation for the CDC definition article is: Keiji Fukuda, Stephen Straus, Ian Hickie, Michael Sharpe, James Dobbins, Anthony Komaroff, and the International CFS Study Group. "The Chronic Fatigue Syndrome: A Comprehensive Approach to Its Definition and Study". Ann Intern Med. 1994;121:953-959. The full text of this paper can be viewed online at http://www.lifelines.com/cfstxt.html.
[no longer online] ...
TREATMENTS
There is not yet any consensus on a treatment protocol for CFS. Two surveys of physicians have been conducted to show which treatments are commonly applied in CFS cases, one of doctors who gather at the bi-annual meetings of the American Association for Chronic Fatigue Syndrome (AACFS) as reported in CFS-NEWS, and a mail survey of AACFS members, conducted by Jonathan Rest MD.
From these two sources, the following appear to be typical prescriptions:
- teaching the patient energy management and recognition of limits
- SSRIs such as Zoloft, Paxil and Prozac, used to address fatigue, cognitive dysfunction and depression
- low dose tricyclic anti-depressants such as doxepin and amitriptyline, for sleep disorder, and muscle and joint pain and
- NSAIDs such as ibuprofen and naproxen for headache, and muscle and joint pain.
Other treatments often prescribed are Klonopin, intra-muscular gamma globulin (IMgG), nutritional supplements (particularly anti-oxidants, B-vitamins generally and B-12 specifically), herbs, and acupuncture. Less often prescribed were chiropractic therapy, intravenous gamma globulin (IVgG), kutapressin, antivirals, interferon, and transfer factor.
A number of CFS cases have been linked to neurally mediated hypotension as reported in JAMA and the Lancet. Some CFS patients respond to NMH treatments when that condition is indicated. For more information, see the Johns Hopkins CFS web page (http://www.med.jhu.edu/cfs/), and also the interview with Hopkins researcher Peter Rowe MD that appeared in CFS-NEWS #45, (http://maelstrom.stjohns.edu/CGI/wa.exe?A2=ind9503&L=cfs-news&P=R2).
Comments:
This page has not been updated in a long time.
Some links are no longer active, as indicated above, and some have been changed, as for the AACFS, now at http://www.aacfs.org/ and the name is now the IACFS, International Association for Chronic Fatigue Syndrome. In January, 2007, it held its 8th annual conference.
Patient Clinical Tests, 1998?
Quotes:
- MycoplasmaTest Panel
(CPT: 87798x3, 87581)
—Mycoplasma species panel of 4 pathogenic mycoplasmas
(M. fermentans, M. penumoniae, M. hominis, M. penetrans) by PCR.
- Chlamydia pneumoniae Test (CPT: 87486
- Lyme Borrelia Test (CPT: 87476)
—Borrelia burgdorferi (Lyme Disease) by PCR.
- HHV-6 Test (CPT: 87532)
—Human herpes virus 6 (HHV-6) test by Real-Time PCR.
- CMV Test 07034 (CPT: 87496)
—Cytomegalovirus (CMV) test by Qualitative PCR. ...
For best price and highest quality I suggest that the above PCR specialty tests for CFS/FMS patients be ordered through Medical Diagnostics Laboratories, www.mdlab.com at 2439 Kuser Road, Hamilton, NJ, 08690 USA. Tel: 877-269-0090 (Sales).
Systemic chronic microorganism infections can cause chronic fatigue, reoccurring fevers, night sweats, joint and muscle pain, stomach upsets, hair loss, diarrhea, breathing problems, sleep disturbances, sinus congestion/pain,watery eyes, skin rashes, kidney pain, dizziness, nausea, vision problems, such as light sensitivity, urination problems, heart and thyroid problems and in extreme cases autoimmune-like disorders, such as those that lead to muscle degeneration and paralysis.
The latter symptoms are probably due to the fact that the microorganism is released from infected cells carrying parts of host cell membrane, and individuals may respond to the microorganism as well as normal host antigens carried on the microorganism, resulting in symptoms similar to but not exactly those of MS, ALS, Lupus and other autoimmune disorders.
Other symptoms include abnormal allergic responses, peculiar neurological symptoms, heart abnormalities, respiratory ailments, gastric discomforts ranging from ulcers to irritable bowel syndrome, and in extreme instances encephalitis and/or meningitis.
Mycoplasma or Chlamydia infections usually start as respiratory infections that cause a respiratory illness that progresses to a systemic condition.
Testimonials from Pet Owners ...
Research at International Molecular Diagnostics, Inc. (IMD) and its nonprofit sister organization, The Institute for Molecular Medicine, has shown that owners of various species of animals who have Chronic Fatigue Syndrome (CFS), Fibromyalgia Syndrome (FMS), Gulf War Illness (GWI) or Rheumatoid Arthritis (RA) commonly have sick pets. We have determined a connection between the above chronic illnesses suffered by humans and their pets and chronic infections caused by Mycoplasma, Chlamydia, or other chronic infectious pathogens.
... several cycles of antibiotics, including doxycycline and azithromycin ...
oral ciprofloxacin. After three 4-week cycles of antibiotic ... recovered. ...
oral Vibramycin for three 4-week cycles ...
oral doxycycline for two 4-week cycles ...
Prof. Garth L. Nicolson
Chief Scientific Officer and Research Professor
Formally: Adjunct Professor of Veterinary Pathology, Texas A & M School of Veterinary Medicine
Comments: This page has not been updated in some time.
It does not contain e-mail, website, or phone number contact info.
Interesting correlation between pets and their human owners.
Possible test for MCS and CFS, 1998
Quotes:
Possible test for MCS and CFS. $9 simple and cheap,
at http://www.neurotoxins.com/ -- Dr. Ritchie C. Shoemaker, author of "Desperation Medicine", has had success in treating sick building syndrome, chronic Lyme disease, and Pfiesteria and ciguatera poisoning by using the drug Questran (cholestyramine) which binds toxins in the body.
Comments:
Website is no longer be in operation.
Changed to
ChronicNeurotoxins.com, June, 2002.
Chronically ill patients successfully treated by Dr. Shoemaker and others using our treatment protocol had many previous diagnoses, including Depression, Chronic Fatigue Syndrome, Fibromyalgia, Irritable Bowel Syndrome, Multiple Sclerosis, Sick Building Syndrome, Bell's Palsy, learning disability, endometriosis, sensory-neural deafness, low vision, Chronic Soft Tissue Injury (usually from an automobile accident) and Post-Lyme Disease . The diagnosing physicians did not realize that their illness was caused by biotoxins. ...
How We Can Help You
Standard medical diagnostic tests are usually normal in patients who have these biotoxin-induced illnesses, which makes it difficult to diagnose and treat. We have a simple tool that assists in diagnosis by showing evidence of a neurological deficit. That screening tool is the visual contrast sensitivity test (VCS).
A positive VCS test, in the presence of biotoxin exposure potential, and a symptom complex involving multiple systems, and in the absence of other historical, medical or treatment conditions that likely explain the symptoms, provide a basis for making a diagnosis of Probable Biotoxin-Mediated Illness.
Users of this website can take a screening version of the VCS test and complete questionnaires on exposure potential, symptoms and medical history. When biotoxins are suspected, users can purchase a package that includes the treatment protocol and three additional vision tests that can be used to monitor recovery during treatment.
Patients can request treatment by taking the protocol and the associated research articles to their local physician or to Dr. Shoemaker.
The Mold Clinic was run by Dr. Ritchie C. Shoemaker, a nationally known physician, who has treated more than 5,000 biotoxin illness patients in over 30 years of medical practice and is the author of several books and scientific articles including “Mold Warriors”, published in 2005. (www.moldwarriors.com)
Never take Questran in its dry form.
Always mix it with water or other liquids before taking it. For Questran, use 2 to 6 ounces of liquid per packet or level scoopful; for Questran Light, use 2 to 3 ounces. Soups or fruits with a high moisture content, such as applesauce or crushed pineapple, can be used in place of beverages. ...
The use of this medication may produce or worsen constipation and aggravate hemorrhoids. If this happens, inform your doctor. To prevent constipation, the doctor may increase your dosage very slowly, and ask you to drink more fluids, take more fiber, or take a stool softener. If severe constipation develops anyway, the doctor may switch to a different drug.
The prolonged use of Questran may change acidity in the bloodstream, especially in younger and smaller individuals in whom the doses are relatively higher.
Questran (cholestyramine) is a drug which absorbs bile acids in the intestines. There are two forms of Questran: the standard form, which contains cholestyramine and sucrose, and Questran Light, which contains cholestyramine and aspartame (aspartame is an artificial sweetener).
Questran is used to treat diarrhea, as excess bile acid in the intestines can lead to loose stools. In particular, patients who have had their gallbladders removed may find that they have bile-related diarrhea, as bile is normally stored in the gallbladder.
[IBS patients often have problems with diarrhea and often have their gall bladders removed.]
Why the name Myalgic Encephalomyelitis should be Restored,
March, 2001
Quotes: RESTORE M.E.
Parallels with poliomyelitis, transverse myelitis and related disorders
by Judith Silverman
Some of the manifestations of CFS/ME such as orthostatic hypotension demonstrate that an inflammatory process has already taken place. Orthostatic Hypotension has both neurogenic and non neurogenic causes. I am going to present some of the parallels of symptoms of people with CFS with those of "accepted" neurologically based diseases such as poliomyelitis, Guillian Barre, Transverse Myelitis and MS.
Myalgic Encephalomyelitis shares a common history with the poliomyelitis virus. Research done by Dr. Sabin in 1947 demonstrated that a "mild" type of poliomyelitis "Summer Grippe" did not have to paralyze in order to damage the brain and spinal cord. Something to remember is that you have to lose over 50% of your motor neurons before you become paralyzed. Most of us were not paralyzed. ...
In Dr. Bruno's Parallels between PPS and CFS he documents the parallel histories of poliomyelitis and M.E. "Beginning in Los Angeles in 1934 and continuing for more than twenty years, there were over a dozen outbreaks of a disease that was at first diagnosed as poliomyelitis, then as "abortive" or "atypical" poliomyelitis and finally named "Myalgic Encephalomyelitis." ..
My doctor is now treating a number of patients who recovered from either Transverse Myelitis or Guillian Barre Syndrome, and now have been diagnosed as having Chronic Fatigue Syndrome. I am one of those patients. Is CFS/ME really PPS? I believe the symptoms are similar if not identical. ...
I developed orthostatic hypotension after being ill from mononucleosis. Unfortunately this was not diagnosed until four years later. In the meantime, because of my symptoms of cognitive dysfunction, lack of balance and unusual gait and a history of transverse myelitis, my physicians referred me for an EEG and then MRI because they thought I had MS. Though I had seizure activity on the EEG, there were no white spots (lesions) on the MRI so I don't have MS.
So why are (lesions) white spots on a brain MRI of a CFS/ME patient usually ignored and yet when they appear on a brain MRI of someone who has had transverse myelitis, the patient is diagnosed with MS? Isn't it true that CFS patients symptoms so closely resemble those of MS patients that unless the patient carries the prior "label" of CFS in their file, that CFS patients can and are being diagnosed as having MS if they have the white spots (lesions) on the MRI. ...
I believe that Orthostatic Hypotension is the key to proving that there is an inflammation process that is taking place in CFS and that the name of Myalgic Encephalomyelitis is totally appropriate.
You can read all about Orthostatic Hypotension (except in CFS/ME, since for some reason CFS is not mentioned in this article) in "Evaluation and Treatment of Orthostatic Hypotension" which appeared in the American Family Physician at
http://www.aafp.org/afp/971001ap/engstrm.html, no longer available online.
... Please note in this article that Neurogenic Causes of Orthostatic Hypotension include: MS, TM and GB. These three illnesses along with poliomyelitis all share some similarities to CFS/ME. ((TM and GB both are linked with encephalomyelitis processes. (See the TM and GB websites and Merck Manual page 321 - Home Edition)).
Comments:
Parallels with other illnesses are drawn, yet the overall suggestion is that CFS is the result of an immune dysfunction which prevents more acute illnesses, yet enables partial disablement. That is, most of the disease factors are terminated while some remain active. Chronic disease becomes a residual of a potentially fatal illness.
Neurally Mediated Hypotension (NMH), 1998?
Quotes:
Neurally Mediated Hypotension is a condition or syndrome where the body's regulation of blood pressure is found to be difficult, especially when standing upright. The reason why this condition occurs is unknown. Blood pressure and heart rate are effected. In this condition the blood pressure will suddenly drop causing dizziness, weakness, sweating, or lightheadedness. Most sufferers feel the sensation that they may faint. ...
In Neurally Mediated Hypotension, abnormally sensitive sensors in the heart are activated and send the wrong message to the brain, which then triggers the heart and the circulatory system to slow down, blood pressure to drop and lightheadedness, nausea, disorientation and sometime fainting to result." Dr. Calkins noted that people with the abnormality have normal blood pressure most of the time and therefore the underlying condition cannot be picked up on routine blood pressure screening.
... A treatment plan was suggested where patients were started on Florinef, a steroid that helps the body retain salt and increases blood volume, and potassium pills. This was supplemented or replaced, as needed, with heart drugs such as the beta blocker, Tenormin. In addition, patients were asked to increase salt intake. The approach requires patience and regular physician monitoring to adjust doses to the individual patient and watch for potentially serious side effects, Dr. Rowe stressed.
Comments:
This symptom was found in many of those tested who had been diagnosed with CFS.
Biological Marker Study is Published, 1997
Quotes:
On Thursday, July 17, 1997, a study was published that identifies a possible biological marker for Chronic Fatigue Syndrome (CFS). Dr. Robert Suhadolnik, Ph.D., a professor of Biochemistry at Temple University School of Medicine in Philadelphia, published a paper, Biochemical Evidence for a Novel Low Molecular Weight 2-5A-Dependent RNase L in Chronic Fatigue Syndrome ...
Dr. Robert Suhadolnik, ... to investigate whether there might be therapies based on correcting the activity of the defective enzyme. ... all the CFS patients that were tested, had the defective enzyme, while none of the healthy controls showed the enzyme.
Comments:
Sept, 2005 Update:
A recent study examined a number of attributes of clinical presentation, functional status, immune function and the RNase L pathway in a cohort of CFS patients and two well-defined control populations. Our results are consistent with the immune activation model of CFS and do not support the contention that CFS is simply a form of depression.
The abnormalities demonstrated in the RNase L pathway, i.e., increased 37/80 kDa RNase L ratio, can reliably identify a relatively homogeneous subset of patients within the larger group that comply with the working definition of CFS. Observation of an elevated 37/80 kDa RNase L ratio is a quantitative measure that correlates well with the severity of CFS symptoms and with low natural killer (NK) cell function.
Test covered and being done by the Netherlands Health Authority ...
JAMC, Sept 8, 1998
Autonomic Nervous System Abnormalities Found in CFIDS, 1997
Quotes:
A study published on June 3, 1997 in the American Journal of Medicine found that autonomic nervous system dysfunction is present in many patients with Chronic Fatigue Syndrome. This may be explained in part by a post-viral autonomic neuropathy (damage to the autonomic nervous system), cardiovascular deconditioning, or both, say the researchers. They also found that psychiatric illness was not responsible for autonomic test abnormalities.
Led by lead author and neurologist Roy Freeman, MD, of Beth Israel Deaconess School, the study determined that in CFS patients, damage to the autonomic or involuntary nervous system interferes with the body's ability to regulate blood pressure, resulting in hypotension, or low blood pressure. ... Freeman says that autonomic neuropathy may be an immune-mediated phenomenon in which the nerves are damaged trying to fight off an invading virus, ....
Comments:
Provides a viral causal possibility for the development of Neurally Mediated Hypotension.
CFIDS Treatment Options, 1997
Quotes:
The following information comes from a speech on CFIDS by Charles Lapp, MD, at a Nashville, TN, CFS Association meeting, on April 12, 1997.
Dr. Charles Lapp, MD
Hunter-Hopkins Center
http://www.drlapp.net/
10724 Park Road, Ste. 105
Charlotte, NC 28210
2007
10344 Park Road, Suite 300
Charlotte, North Carolina 28210
Telephone (704) 543-9692
Fax (704) 543-8547
STEPS TO RECOVERY:
EDUCATION:
Know that this is a recognized disorder. It's not in your head, it's not Cancer and you're not crazy.
ACTIVITY / EXERCISE:
The more you exert the sicker you get. On the other-hand, if you stay in bed you get deconditioned. Balance light activity with bed-rest ... Learn to keep posture and concentrate on breathing and you'll do much better. Simple stretches, Yoga, Tai Chi may help.
PHYSICAL MODALITIES:
Cool to hot pack in the neck and shoulders causes much more blood flow. Massage may help tenderness and for aches and pains. Acupuncture can help with pain, but you must find a qualified person. Hydrotherapy - Vertical flotation, tepid water (approximately 84 degrees) CFS and FMS patients need to be careful of hot temperature water because it lowers blood pressure and upregulates the immune system. (Makes Cytokines which cause flu-like symptoms). Low Level Interval Exercise -- 4-8 minutes then rest for 4-8 minutes, 3-4 times.
NUTRITION:
Prudent Diet -- carbohydrate based, rice, potato, pasta, fresh fruits, vegetables, light meals. (chicken, turkey, fish) Stay away from red-meat. AVOID: Sugar, Caffeine, Alcohol, Nutrasweet and Tobacco. This is referred to as S.C.A.N.T. (possibly dairy and wheat too - especially if you have stomach problems)
VITAMINS AND SUPPLEMENTS:
To help get your body in the best possible shape so you can recover.
Many patients have subtle deficiencies. Multi-Vitamin, that has minerals. High dose of cobalamin (B12). Many CFS patients don't absorb B12 very well into the cell not the blood. CoEnzyme Q10 100-120mg per day can bring a 10 percent global improvement. (everything seems to get just a little bit better) Omega-3 fatty acids (evening primrose oil) and Omega-6 (fish oil) fatty acids interfere with inflammatory pathways so as to reduce aches and pain. (may take the edge off of arthritis and muscle pain)
SYMPTOMATIC THERAPY:
Sleep management. -- Klonopin and Doxepin has helped. (low doses)
Tylenol PM has shown some success.
Melatonin is a good drug for phase shifting sleep.
If your sleep clock is off and you find yourself falling asleep later than you used to. Desyrel (Trazadone) @ 50mg nightly. Central activation. -- SSRIs: Prozac, Zoloft, Paxil, Effexor, Luvox. Dopamine Agonists: Wellbutrin.
Headache control. -- different from typical headache.
(behind eyes or back of neck. Pressure-like or squeezing quality to it. Migraine or throbbing also) Diamox shrinks fluid in brain, to take pressure off. Calcium channel blockers can increase blood flow to brain which can reduce swelling in the brain. If headache is Migraine, (one-sided, throbbing) Midrin and Imitrex can be used. Relief from myalgias and arthralgias. -- NSAIDS, (Naprosin). Narcotic agonist (Ultram). Narcotic analgesics (avoid if possible).
FIBROPAIN:
Vague, flu like-aching, burning muscle pain seen in Fibromyalgia.
Magnesium sulfate injections. 2cc @ 50% Magnesium sulfate, once or twice a week have shown 90% of some improvement. Magnesium burns which is a drawback. (this is investigational at this time) Anticonvulsants, such as Neurontin for bad headaches as well as nerve-type pain. (it has very few side effects) Also used are Tegretol, Depakote, Mexill. (consult physician).
Oxytocin a hormone, increase blood flow to eye, brain and muscles. You may think and see more clearly. (doesn't work for everyone). IV Lidocaine, can reduce severe fibro pain as a last resort.
NEURALLY MEDIATED HYPOTENSION:
Volume Expansion. 70-90% OF CFS/FM have Neurally Mediated Hypotension.
Salt and water can be a major help with low blood pressure and low heart rate. 64 ounces of water a day. 2-6 grams of salt a day. If this doesn't do it, Florinef can be added, as well as a beta blocker such as Atenolol. Blood pressure needs to be checked. If you stand in the shower and you get weak and feel like you may faint-- may be NMH.
REPLETION: Certain chemicals & hormones in CFS patients can be low.
One of the most common is Magnesium.
When it's low it makes the pain worse. You can't take Magnesium if you have kidney problems. As a result of adrenal suppression we tend to put out less Cortisol and less DHEA. Cortisol replacement makes patients worse. DHEA replacement has yielded up to a 10% better. Doses usually are 25-50mg women daily, 50-100mg daily for men, both taken in the morning. Side effects -- DHEA is converted to estrogen and a smaller amount of testosterone in women and men, which can build muscle and bone and increases blood flow. Since this is a steroid, you must be careful to monitor side effects.
NEW, UNCONVENTIONAL INVESTIGATIONAL THERAPIES:
Kutapressin.-- An extract of pig liver, which works as an anti-viral and an immune modulator. Requires a shot in the hip which is costly.
IV Gammaglobulin.
-- Used on sickest patients, especially those with multiple infections. It's given monthly.
Amphetamines.
-- Speeds up brain waves and can boost energy.
Ritalin, is used for attention deficit problems in CFIDS patients, which include letter reversal, forgetfulness. It's a very safe drug that isn't habit forming. Cylert is another amphetamine that has shown some success.
Long term antibiotic therapy. (Doxycycline, Erythromyecin)
-- many patients who have taken antibiotics long-term have reported feeling better while on the medication and felt worse when stopped. There is a high incidence of micoplasma incognedus in CFIDS patients, and antibiotics are helpful in treating this.
Ampligen.
-- doubled stranded RNA, drug has been around for 30 years in the veterinary medicine. Over 130 patients have been treated, with a reported 50% recovery rate. 90% have improved globally. (globally meaning all symptoms). FDA hasn't approved ampligen yet. (1997)
ALTERNATIVE THERAPIES:
Have some merit, but studies are lacking. Some people will do well, but it probably won't be a cure-all. Acupuncture, Massage, Neuromuscular therapy, Chiropractic, can be helpful for symptom relief. No Scientific support, but not risky,
-- Homeopathy, Magnetic therapy, Aromatherapy.
The following have some scientific merit why they might be tried but are still lacking controlled studies: (1997)
Acetyl-carnitine, Anti-candida medications, Guafenisin, Proanthocyanidin, Amino acids, Echinacca, Sylimarin, Valerian, Glucosamine, Shark-cartilage, Pyridoxal-5-phosphate, Glutathione, N-acetylcystine, Garlic.
The following are unproven and unsafe. (1997)
-- Peroxide infusions, Chelation therapy. Chinese herbs, Ephedra, ma huang, gotu kola, will all make you fell better, however they are caffeine derivatives. It's a false energy that gives you a boost so you will do more and end up crashing worse. Amphetamines speed up the brain and do not give false energy. Takes a sleeping brain and wakes it up. Mushroom or fungus tea, Geranium -- not recommended. Caffeine -- a false energy, that will make you worse.
PERPETUATING FACTORS:
If you don't deal with these factors it is very difficult to recover.
Treat the psychological problems. (reactive depression, anxiety, somaticism.)
Manage allergies.(can zap your energy)
Avoidance of chemicals, odors, fumes and smoke.
Treat yeast infections aggressively. (over-the-counter medications usually don't work)
Address stressors (counseling for family dysfunction, financial pressures, lack of support structures, disability administration issues.)
PREVENTIVE CARE:
Avoid hot baths and sunbathing (Heat can be draining).
Flu vaccine? pro: may prevent a virus. con: relapse, poor seroconversion. (most CFIDS patients don't get the flu due to an upregulated immune system).
Bone density studies (DEXA) -- inactivity causes bone loss.
Annual exam and laboratory.
-- document progression or regression, review medications (for drug interactions), cancer checks, routine lab work (CBC, chem, ESR, TFT, UA). Kidneys, Liver and Cholesterol need to be checked often.
Dental checkup
-- CFIDS patients have dry eyes and mouths which can lead to serious dental problems.
Comments:
Comprehensive review for 1997.
see current website and contact for updated protocol.
Dr. Charles Lapp, MD
Hunter-Hopkins Center
http://www.drlapp.net/
Visit new website or Profile for many updates.
The Maharishi AyurvedaSM Approach
to Chronic Fatigue Syndrome, Feb.
800 864-8714 ext. 9000
Quotes:
... classic Ayurveda approaches used at The Raj to reduce Vata imbalance, eliminate toxin buildup, provide relief from stress and thereby remove the root causes of chronic fatigue syndrome.
a) Herbalized Oil Massage:
... using specific strokes over different parts of the body.
The various herbs that have been boiled into a base oil, and the oil itself, are specifically chosen for their Vata balancing influence. The oil allows the herbs to deeply penetrate the tissue beds, thereby balancing the nerve and other tissues in the affected areas.
b) Diet, Nutrition and Digestion
.. Foods that can easily be digested, creating micronutrients that are then assimilated into the tissues to rebuild their strength, will be recommended. Your Ayurveda Health Consultants will also provide programs to improve digestion .. also learn the basic principles of Ayurveda cooking.
c) Stress Management and Improved Mental and Emotional Function
... heightened stress. This is due to hormonal changes and other biochemical responses to stress .. recommend practice of the Transcendental Meditation program ...
d) Lifestyle and Daily Routine
... have a lifestyle that does not disturb natural bodily rhythms. When we eat, sleep and exercise in constantly fluctuating and disturbing patterns, the body loses its natural balancing cycles and cannot cleanse or heal itself as effectively.
e) Ayurveda Herbs and Reduction in Free Radicals
... select the appropriate herbal formulas for aiding the healing process, strengthening digestion and helping the body purify itself of toxins, including free radicals.
Two Maharishi Ayurveda herbal preparations have been shown to have 1000 times more powerful anti-oxidant properties than vitamin C or E. ....
f) Cleansing therapies: Maharishi RejuvenationSM Therapy
Your daily three-hour treatment program of massage, heat treatment and mild internal cleansing is the cornerstone of your In-residence treatment at The Raj. The combination of these three treatments received every day for 5 to 21 days creates the ideal internal physical environment for healing.
g) Exercise and Flexibility Education
... proper stretching and flexibility exercises ... Yoga classes every day and teach you a simple but profound set of postures ... Yoga breathing practices ....
Daily gentle oil enemas eliminate impurities that have been moved into the intestinal tract as a result of the other treatments. Elimination Therapy removes all types of imbalances, and is considered a vital part of this cleansing process. ...
From the beginning of your pre-treatment program until one week after your rejuvenation program has been completed, a special diet is recommended. The foods in this diet are easily digestible and enhance the body's ability to eliminate impurities. The diet emphasizes fresh, organic vegetables, fruits, grains, nuts, high fiber content, and dietary sources of antioxidants, vitamins and minerals. If you are enjoying our in-residence program our chefs will provide meals that complement your treatment program. This may include liquid meals (hearty soups) on specific treatment days to ensure maximum results and comfort. ...
Comments:
Idealistic set of practices to work in theory with constant support and no distractions; likely to fall back on return from protected environment.
Gulf War Syndrome -- Fact or Fiction, 1996 to 2005
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A selection of articles is provided.
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MYCOPLASMA
The Linking Pathogen in Neurosystemic Diseases
Several strains of mycoplasma have been "engineered" to become more dangerous. They are now being blamed for AIDS, cancer, CFS, MS, CJD and other neurosystemic diseases.
http://www.nexusmagazine.com/articles/mycoplasma.html
Extracted from Nexus Magazine, Volume 8, Number 5 (August-September 2001)
PO Box 30, Mapleton Qld 4560 Australia. editor@nexusmagazine.com
Telephone: +61 (0)7 5442 9280; Fax: +61 (0)7 5442 9381
From our web page at: www.nexusmagazine.com
© by Donald W. Scott, MA, MSc © 2001
President
The Common Cause
Medical Research Foundation
190 Mountain Street, Suite 405
Sudbury, Ontario, Canada P3B 4G2
Tel/fax: +1 (705) 670 0180
There are 200 species of Mycoplasma.
Most are innocuous and do no harm; only four or five are pathogenic.
Mycoplasma fermentans (incognitus strain) probably comes from the nucleus of the Brucella bacterium. This disease agent is not a bacterium and not a virus; it is a mutated form of the Brucella bacterium, combined with a visna virus, from which the mycoplasma is extracted.
... biological warfare research conducted between 1942 and the present time has resulted in the creation of more deadly and infectious forms of Mycoplasma. Researchers extracted this mycoplasma from the Brucella bacterium and actually reduced the disease to a crystalline form. They "weaponized" it and tested it on an unsuspecting public in North America.
Dr Maurice Hilleman, chief virologist for the pharmaceutical company Merck Sharp & Dohme, stated that this disease agent is now carried by everybody in North America and possibly most people throughout the world.
... there has clearly been an increased incidence of all the neuro/systemic degenerative diseases since World War II and especially since the 1970s with the arrival of previously unheard-of diseases like chronic fatigue syndrome and AIDS.
According to Dr Shyh-Ching Lo, senior researcher at The Armed Forces Institute of Pathology and one of America's top mycoplasma researchers, this disease agent causes many illnesses including AIDS, cancer, chronic fatigue syndrome, Crohn's colitis, Type I diabetes, multiple sclerosis, Parkinson's disease, Wegener's disease and collagen-vascular diseases such as rheumatoid arthritis and Alzheimer's.
Dr Charles Engel, who is with the US National Institutes of Health, Bethesda, Maryland, stated the following at an NIH meeting on February 7, 2000: "I am now of the view that the probable cause of chronic fatigue syndrome and fibromyalgia is the mycoplasma..."
Once the mycoplasma gets into the cell, it can lie there doing nothing sometimes for 10, 20 or 30 years, but if a trauma occurs like an accident or a vaccination that doesn't take, the mycoplasma can become triggered.
Because it is only the DNA particle of the bacterium, it doesn't have any organelles to process its own nutrients, so it grows by uptaking pre-formed sterols from its host cell and it literally kills the cell; the cell ruptures and what is left gets dumped into the bloodstream. ...
This pathogen was patented by the United States military and Dr Shyh-Ching Lo.
I have a copy of the documented patent from the US Patent Office. ..
"Pathogenic Mycoplasma", US Patent No. 5,242,820, issued September 7, 1993. Dr Lo is listed as the "Inventor" and the American Registry of Pathology, Washington, DC, is listed as the "Assignee".
The Special Virus Cancer Program, created by the CIA and NIH to develop a deadly pathogen for which humanity had no natural immunity (AIDS), was disguised as a war on cancer but was actually part of MKNAOMI. ...
"Special Virus Cancer Program: Progress Report No. 8", prepared by the National Cancer Institute, Viral Oncology, Etiology Area, July 1971, submitted to NIH Annual Report in May 1971 and updated July 1971
The title page of a genuine US Senate Study, declassified on February 24, 1977, shows that George Merck, of the pharmaceutical company, Merck Sharp & Dohme (which now makes cures for diseases that at one time it created), reported in 1946 to the US Secretary of War that his researchers had managed "for the first time" to "isolate the disease agent in crystalline form".3
They had produced a crystalline bacterial toxin extracted from the Brucella bacterium. The bacterial toxin could be removed in crystalline form and stored, transported and deployed without deteriorating. It could be delivered by other vectors such as insects, aerosol or the food chain (in nature it is delivered within the bacterium). But the factor that is working in the Brucella is the mycoplasma.
Brucella is a disease agent that doesn't kill people; it disables them.
But, according to Dr Donald MacArthur of the Pentagon, appearing before a congressional committee in 1969, 4 researchers found that if they had mycoplasma at a certain strength--actually, 10 to the 10th power (1010)--it would develop into AIDS, and the person would die from it within a reasonable period of time because it could bypass the natural human defences. If the strength was 108, the person would manifest with chronic fatigue syndrome or fibromyalgia. If it was 107, they would present as wasting; they wouldn't die and they wouldn't be disabled, but they would not be very interested in life; they would waste away.
... Brucellosis .. largely disappeared when they began pasteurising milk, which was the carrier. One salt shaker of the pure disease agent in a crystalline form could sicken the entire population of Canada. It is absolutely deadly, not so much in terms of killing the body but disabling it.
Because the crystalline disease agent goes into solution in the blood, ordinary blood and tissue tests will not reveal its presence. The mycoplasma will only crystallise at 8.1 pH, and the blood has a pH of 7.4 pH. So the doctor thinks your complaint is "all in your head".
In 1998 in Rochester, New York, I met a former military man, PFC Donald Bentley, who gave me a document and told me: "I was in the US Army, and I was trained in bacteriological warfare. We were handling a bomb filled with Brucellosis, only it wasn't Brucellosis; it was a Brucella toxin in crystalline form. We were spraying it on the Chinese and North Koreans."
He showed me his certificate listing his training in chemical, biological and radiological warfare. Then he showed me 16 pages of documents given to him by the US military when he was discharged from the service. They linked Brucellosis with multiple sclerosis, ...
... crystalline Brucella ... to determine how it would spread and the best way to disperse it. They tested dispersal methods for Brucella suis and Brucella melitensis at Dugway Proving Ground, Utah, in June and September 1952. Probably, 100% of us now are infected with Brucella suis and Brucella melitensis.8
Another government document recommended the genesis of open-air vulnerability tests and covert research and development programs to be conducted by the Army and supported by the Central Intelligence Agency.
... the Government of Canada was asked by the US Government to cooperate in testing weaponized Brucella, and Canada cooperated fully with the United States. The US Government wanted to determine whether mosquitoes would carry the disease and also if the air would carry it. A government report stated that "open-air testing of infectious biological agents is considered essential to an ultimate understanding of biological warfare potentialities because of the many unknown factors affecting the degradation of micro-organisms in the atmosphere".9
Testing via Mosquito Vector in Punta Gorda, Florida
A report from The New England Journal of Medicine reveals that one of the first outbreaks of chronic fatigue syndrome was in Punta Gorda, Florida, back in 1957. It was a strange coincidence that a week before these people came down with chronic fatigue syndrome, there was a huge influx of mosquitoes.
The National Institutes of Health claimed that the mosquitoes came from a forest fire 30 miles away. The truth is that those mosquitoes were infected in Canada by Dr Guilford B. Reed at Queen's University. They were bred in Belleville, Ontario, and taken down to Punta Gorda and released there.
Within a week, the first five cases ever of chronic fatigue syndrome were reported to the local clinic in Punta Gorda. The cases kept coming until finally 450 people were ill with the disease.
The Government of Canada had established the Dominion Parasite Laboratory in Belleville, Ontario, where it raised 100 million mosquitoes a month. These were shipped to Queen's University and certain other facilities to be infected with this crystalline disease agent. The mosquitoes were then let loose in certain communities in the middle of the night, so that the researchers could determine how many people would become ill with chronic fatigue syndrome or fibromyalgia, which was the first disease to show.
One of the communities they tested it on was the St Lawrence Seaway valley, all the way from Kingston to Cornwall, in 1984. They let out hundreds of millions of infected mosquitoes. Over 700 people in the next four or five weeks developed myalgic encephalomyelitis, or chronic fatigue syndrome.
Before and during World War II, at the infamous Camp 731 in Manchuria, the Japanese military contaminated prisoners of war with certain disease agents.
They also established a research camp in New Guinea in 1942.
There they experimented upon the Fore Indian tribe and inoculated them with a minced-up version of the brains of diseased sheep containing the visna virus which causes "mad cow disease" or Creutzfeldt-Jakob disease. ....
In 1953, the US Government asked the Canadian Government if it could test a chemical over the city of Winnipeg. It was a big city with 500,000 people, miles from anywhere. The American military sprayed this carcinogenic chemical in a 1,000%-attenuated form, which they said would be so watered down that nobody would get very sick; however, if people came to clinics with a sniffle, a sore throat or ringing in their ears, the researchers would be able to determine what percentage would have developed cancer if the chemical had been used at full strength.
We located evidence that the Americans had indeed tested this carcinogenic chemical -- zinc cadmium sulphide -- over Winnipeg in 1953. ...
... the Pentagon held a press conference on May 14, 1997, where they admitted what they had done. Robert Russo, writing for the Toronto Star11 from Washington, DC, reported the Pentagon's admission that in 1953 it had obtained permission from the Canadian Government to fly over the city of Winnipeg and spray out this chemical--which sifted down on kids going to school, housewives hanging out their laundry and people going to work.
US Army planes and trucks released the chemical 36 times between July and August 1953. The Pentagon got its statistics, which indicated that if the chemical released had been full strength, approximately a third of the population of Winnipeg would have developed cancers over the next five years. ...
A report commissioned by US Congress, chaired by Dr Rogene Henderson, lists 32 American towns and cities used as test sites as well. ...
In laboratories throughout the United States and in a certain number in Canada including at the University of Alberta, the US Government provided the leadership for the development of AIDS for the purpose of population control. After the scientists had perfected it, the government sent medical teams from the Centers for Disease Control-- under the direction of Dr Donald A. Henderson, their investigator into the 1957 chronic fatigue epidemic in Punta Gorda -- during 1969 to 1971 to Africa and some countries such as India, Nepal and Pakistan where they thought the population was becoming too large.13 They gave them all a free vaccination against smallpox; but five years after receiving this vaccination, 60% of those inoculated were suffering from AIDS. ...
Many people with chronic fatigue syndrome, myalgic encephalo-myelitis and fibromyalgia who apply to the Canada Pensions Plan Review Tribunal will be turned down because they cannot prove that they are ill. During 1999 I conducted several appeals to Canada Pensions and the Workers Compensation Board (WCB, now the Workplace Safety and Insurance Board) on behalf of people who have been turned down. I provided documented evidence of these illnesses, and these people were all granted their pensions on the basis of the evidence that I provided.
In March 1999, ... I appealed to the WCB on behalf of a lady with fibromyalgia who had been denied her pension back in 1993. The vice-chairman of the board came to Sudbury to hear the appeal, and I showed him a number of documents which proved that this lady was physically ill with fibromyalgia. It was a disease that caused physical damage, and the disease agent was a mycoplasma. ...
This mycoplasma couldn't be detected until about 30 years ago when the polymerase chain reaction (PCR) test was developed, in which a sample of your blood is examined and damaged particles are removed and subjected to a polymerase chain reaction. This causes the DNA in the particles to break down. The particles are then placed in a nutrient, which causes the DNA to grow back into its original form. If enough of the substance is produced, the form can be recognised, so it can be determined whether Brucella or another kind of agent is behind that particular mycoplasma. ...
If you or anybody in your family has myalgic encephalomyelitis, fibromyalgia, multiple sclerosis or Alzheimer's, you can send a blood sample to Dr Les Simpson in New Zealand for testing.
If you are ill .., your red blood cells will not be normal doughnut-shaped blood cells capable of being compressed and squeezed through the capillaries, but will swell up like cherry-filled doughnuts which cannot be compressed. The blood cells become enlarged and distended because the only way the mycoplasma can exist is by uptaking pre-formed sterols from the host cell. One of the best sources of pre-formed sterols is cholesterol, and cholesterol is what gives your blood cells flexibility. If the cholesterol is taken out by the mycoplasma, the red blood cell swells up and doesn't go through, and the person begins to feel all the aches and pains and all the damage it causes to the brain, the heart, the stomach, the feet and the whole body because blood and oxygen are cut off.
... When the blood is cut off from the brain, punctate lesions appear because those parts of the brain die. The mycoplasma will get into portions of the heart muscle, especially the left ventricle, and those cells will die. Certain people have cells in the lateral ventricles of the brain that have a genetic predisposition to admit the mycoplasma, and this causes the lateral ventricles to deteriorate and die. This leads to multiple sclerosis, which will progress until these people are totally disabled; frequently, they die prematurely. The mycoplasma will get into the lower bowel, parts of which will die, thus causing colitis. All of these diseases are caused by the degenerating properties of the mycoplasma. ...
In early 2000, a gentleman in Sudbury phoned me and told me he had fibromyalgia. He applied for a pension and was turned down because his doctor said it was all in his head and there was no external evidence. I gave him the proper form and a vial, and he sent his blood to Dr Simpson to be tested. He did this with his family doctor's approval, and the results from Dr Simpson showed that only 4% of his red blood cells were functioning normally and carrying the appropriate amount of oxygen to his poor body, whereas 83% were distended, enlarged and hardened, and wouldn't go through the capillaries without an awful lot of pressure and trouble. This is the physical evidence of the damage that is done.
[
Dr Les Simpson,
Red Blood Cell Research Ltd,
31 Bath Street, Dunedin, 9001, New Zealand,
tel +64 (0)3 471 8540,
email rbc.research.limited@xtra.co.nz.
(Note: Dr Simpson directs his study to red cell shape analysis, not the mycoplasma hypothesis.)]
You can also ask your doctor to give you a 24-hour Holter ECG. ...
You can also ask your doctor for a blood volume test. ...
In the early stages of a disease, doxycycline may reverse that disease process. It is one of the tetracycline antibiotics, but it is not bactericidal; it is bacteriostatic--it stops the growth of the mycoplasma. And if the mycoplasma growth can be stopped for long enough, then the immune system takes over. ...
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CFS Association of Long Island, 2001?
http://www.geocities.com/HotSprings/Spa/4225/index.html
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HHV6A - ONE APPROACH, 1998
http://www.geocities.com/HotSprings/Spa/4225/hhv6.html
Many people with Chronic Fatigue Syndrome have been tested for HHV6A and found to be positive. HHV6A stands for Human Herpes Virus Number 6A. The test for HHV6A is now commercially available through Herpesvirus Diagnostics Inc. (Physicians may call [414] 529-3680.)
HHV6A is a persistent and infectious virus that can't yet be totally eradicated from the body. The strain GS is the one usually found in PWC's (Person with Chronic Fatigue Syndrome) as well as in AIDS and other illnesses. Ampligen helps inhibit the virus but is not yet accessible to most people.
...Kutapressin was found helpful to PWC's in 1988 when two Houston physicians, Drs. Thomas Steinbach and William Hermann, began a therapy with PWC's using intramuscular injections which were slowly reduced in frequency until just one injection per week were used. The original protocol is daily IM shots of 2ml for 25 days, then three times weekly for up to six months, and then just 1 time a week. Dr. Steinbach uses a 23-gauge 1-inch needle and combines this with a Vitamin B12 shot.
Manufactured by Schwartz Pharma in Illinois, Kutapressin is an amino acid and peptide extract from pig's liver. Most insurance companies will cover the prescription drug. An informal study of 270 PWC's showed 75% benefiting after 40 injections, and all had been sick for more than five years. A second study, previously published, showed an 85% symptom reduction. There was also a study by Dr. C.V. Abalashi that found Kutapressin helped in vitro (in a test tube) to inhibit HHV6 (In Vivo, 1994).
Dr. Derek Enlander treats over 800 PWVs in New York City.
He has modified the Houston protocol to weekly injections and found a similar benefit for these PWC's. Only two PWC's out of these 800 have ever demonstrated a significant allergic response to the drug. Many, however, do experience soreness where the injection site is, and he claims to minimize this by using a 30-gauge, 1-inch needle.
He combines Kutapressin with magnesium, sulfate, Calphosan, B12, and folic acid. The method alleviates the flu-like symptoms and sore throats associated with CFIDS but, like Ampligen, works very slowly. The benefits are gradual and usually will be noticeable between 8 and 12 weeks. The drug also had been found to expand the time between flares, and the relapsing episodes last a shorter time.
To use Dr. Enlander's method, a compounding pharmacist must prepare the injections, which should be refrigerated. The solution, however, should be brought to room temperature before being injected. It should always be clear in color, with no clouding or discoloring seen.
Kutapressin costs (1998) between $90 and $120 for a 20-ml vial. One vial usually produces 10 shots. Although your "traditional physician" may be reluctant to try this method, a resulting HHV6A test should make him/her more amenable to the drug. It has been used for many years for skin conditions and is considered very safe.
This article was written by Robert Huntington. (The National Forum, Spring 1998)
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Only 1 page is reprinted here from the site.
Others are summarized above.
Overall, there are few and these have not been updated in some time.
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