cfs-healing.info

Rich van Konynenburg's
ME/CFS
Myalgic Encephalopathy/Encephalomyelitis
treatment protocol

Rich van Konynenburg's excellent multifaceted treatment protocol. Ken Lassesen's treatment protocol database.

Description of the Parts of the General Outline:

(Before applying any of the general advice, therapies and medications, please read the information by Rich v. Konynenburg at the bottom of this essay!)

1.
Stress Relief

Even though it may be extremely difficult to do, it's important for PWCs to do whatever they can do to relieve their load of various kinds of stressors, including physical, chemical, biological, mental, and emotional stressors.
This includes changing their actual life circumstances as well as changing how they respond to these
circumstances. They may have to make some hard decisions and stick to them.

If they have not already dropped out of their employment, they may have to.
If there are interpersonal interactions in their
lives that cause them excessive stress, they will either need to make peace with the people involved or minimize their interactions with them.
If their living environments are exposing them to
significant amounts of chemical toxins or irritants,
it will be critical for them to eliminate these substances or to move to other dwellings.
If they are overdoing physical exercise or exertion,
they will need to moderate it. If they are repeatedly being exposed to infections, they will need to isolate themselves from the sources of these infections.

Pacing is an important habit for PWCs to develop. Before becoming ill, many PWCs were achievement-oriented, action-prone, "Type A," hard driving people.
Recovery from ME/CFS will demand a fundamental change in this approach to life. Instead of attempting always to "do one's best," a PWC may need to come to terms with doing something that is quite good enough.
Tomorrow is another day. Balance is called for.
Instead of ignoring signals from the body that rest is needed and forging full steam ahead, a PWC should develop the habit of heeding these signals and lightening the load. This advice may seem like
heresy to a person whose life has been oriented since childhood toward maximum achievement or perfection, but I believe it's the correct advice when it comes to promoting recovery from ME/CFS.

Once PWCs have made the changes necessary to reduce their stress to a manageable level, they must seek to improve the ways in which they cope with their remaining stress: they should consider activities such as listening to music, meditating, praying, practicing yoga, watching comedy videos or radio programs, developing their sense of humor, and enjoying nature.
If they have deep-seated animosities because of past wrongs done to them, they should work on developing the ability to forgive. Different things work for different people.

Of course, it is much easier to talk about reducing stress and coping with it than to actually do these things. The degree to which PWCs can reduce the stress in their lives depends on what their financial picture is, whether or not they have a supportive
social structure, and other factors.
But the more they can rid themselves of stress and/or learn to cope with it more effectively, the better will be their chance for recovery.

There is a continuing controversy over the benefit of exercise in ME/CFS. My view of this is that too much exercise, particularly of aerobic types, is damaging to a PWC, but appropriate amounts of the right kinds of exercise can be beneficial.

I believe that damage to the skeletal muscle cells occurs as a result of the increased production of oxidizing free radicals during aerobic exercise, in the presence of an ongoing condition of oxidative stress in these cells.
There are now several papers in
the literature reporting on elevated measurements of markers of oxidative stress in CFS. It is well-established that oxidizing free radicals are produced in the normal course of metabolism, and that a higher rate of metabolism will result in a higher rate of production of oxidizing free radicals.
I believe that this accounts for the observed "post-exertional malaise" that may extend for days after a
PWC gets too much exercise.

Movement, stretching, and resistance exercise are important for the health of the joints, the bones, the lymph system, the circulatory system, the vestibular (balance) system, the tendons and muscles and the digestive system. The joints require physical movement in order to bring nutrients to the cartilage via the synovial fluid.
The maintenance of strong bones requires mechanical stress in the bones.

The lymph system requires the action of skeletal muscles to move lymph from the periphery of the body into the thoracic duct and thence into the circulatory system.

The circulatory system requiresmuscle action to assist in returning blood to the heart, as well as in preserving the tone of the heart muscle and the condition of the overall circulatory system.

Bouncing type exercise (such as on a small trampoline or a chair suspended with springs) has been found helpful for the vestibular system.
The muscles and tendons require exercise to stay in condition, and exercise can also help to relieve muscle pain. The digestive system benefits from exercise in maintaining proper motility.

PWCs should get regular exercise, but should not overdo it. They should approach exercise cautiously, doing less than they think they can, and waiting until the next day or two to decide whether they
are able to tolerate it at the level achieved.

Increases in exercise parameters should be entered upon cautiously. PWCs should avoid aerobic exercise, but carry out stretching, movement, and short-term (non-aerobic) resistance exercise.
For people who have fibromyalgia only, without symptoms characteristic of CFS, even aerobic exercise can be helpful.

Muscle pain, and to a lesser extent joint pain, are major symptoms for many PWCs. Most of this pain does not appear to be associated with observable tissue damage, but rather seems to originate in malfunction of the sensory parts or pain signal processing parts of the nervous system.
Since severe pain can interfere with the
ability to obtain restorative sleep and can also stimulate the hypothalamus-pituitary-adrenal axis,
it should be dealt with before treating sleep problems or the neuroendocrine system.

Some pain relief can often be obtained from appropriate exercise, such as stretching and relaxation, as mentioned above. Pain relief can also often be obtained from massage, acupuncture, chiropractic, physical therapy, or local or general heating.

Sufficient deep, restorative sleep is very important for several reasons. Human growth hormone is secreted by the pituitary gland during the deepest stages of sleep (Stages 3 and 4).
This hormone is necessary to carry out repairs while we sleep. In addition, memories of daily events are fixed in our brains during sleep, and poor sleep
quality can lead to deficits in short-term memory.
Biochemical energy supplies are restored in the brain during sleep. There are probably many more benefits of restorative sleep that are not yet understood.

PWCs should do what they need to do to get the amount of restorative sleep nightly that is sufficient for them to feel rested when they awaken. Seven to eight hours per night is appropriate for most people. This should start with avoiding foods (such as caffeine) and activities in the period before bedtime that tend to keep people awake.

It's important to have a regular bedtime and a quiet, dark place to sleep with a comfortable temperature and a reasonably comfortable mattress. If this doesn't bring restorative sleep, then PWCs should look into the possibility that they might have sleep apnea, as follows:

If he or she has a sleeping partner, the partner can be asked whether he or she has noticed that the PWC stops breathing for periods of time while sleeping, a sign of sleep apnea. If the PWC frequently awakens with a gasp or a snort, this is another sign of sleep apnea. Snoring or a neck size larger than 17 inches are other risk factors for sleep apnea.

If suggestions of sleep apnea are present, a clinician can order a sleep study to determine whether a PWC has this condition for sure, and if so, a CPAP machine may be helpful. If these measures don't bring restorative sleep, then the orthomolecular substances should be tried first, such as a magnesium supplement or melatonin at bedtime.

If they don't correct the problem, an herbal mixture including valerian, passion flower, kava kava,
and others (such as from Immunesupport.com)
((check the ME/CFS database first!)) should be tried.
If that doesn't work, the clinician should consider prescribing Zolpidem (Ambien).
Antihistamines such as Benedryl (diphenhydramine) may promote sleep, but may also interfere with deep-stage sleep.

Many PWCs suffer from respiratory allergies, multiple chemical sensitivities, and/or deficits in the operation of their detoxication system.
Therefore, it's important for them to be able to breathe air that is free of toxins, allergens, and substances to which a PWC may have a chemical sensitivity.

It is important to drink sufficient water for proper hydration of the body and for proper operation of the bowels. Many PWCs have a higher than normal requirement for water, because they suffer from central diabetes insipidus (not the same as the more common diabetes mellitus).
Central diabetes insipidus results from insufficient
secretion of antidiuretic hormone by the hypothalamus and pituitary gland, and this causes the kidneys to pass too much water into the urine.
The result is constant thirst and low blood plasma volume.

The latter exacerbates problems with orthostatic intolerance (inability to stand for a significant length of time because of poor blood supply to the brain). Several of the minerals found in natural waters are among those essential to the body, and many PWCs are deficient in some of them, particularly magnesium and calcium.

As noted above, the detoxication system is not operating properly in many PWCs (primarily because of glutathione depletion). Therefore,minimizing the content of toxins in ingested water is important.

A PWC should obtain a supply of clean water to drink. It's best if it does not contain chloride, fluoride, or significant amounts of heavy metals, organic toxins, or bacteria, but the minerals needed by the body, such as calcium and magnesium, should not be removed.

Distilled water or water that has been through reverse osmosis are not the best choices, because they do not contain these minerals.
A home tap water filter that includes a charcoal filter to remove heavy metals and organic toxins is a good investment.

Many PWCs suffer from orthostatic intolerance, manifested as orthostatic hypotension
(sometimes diagnosed as NMH or neurally mediated hypotension) or postural orthostatic tachycardia (POTS), or both.

These can involve a low blood plasma volume or pooling ofblood in the lower body when standing,
or both.

The blood plasma volume can be increased to some degree by drinking more water, together with added salt. It's important to make sure that enough potassium is taken in to maintain the sodium/potassium balance in the body. Fresh, non-starchy vegetables are good sources of potassium without abundant sugars.

Blood pooling can be counteracted by the use of support hose. The tightness should be selected to prevent blood pooling, but should allow sufficient blood circulation in the legs and feet.

Taking supplemental tyrosine at a dosage of up to 1,500 mg per day is another thing to consider to counteract blood pooling, because tyrosine is the substrate for making norepinephrine, the
neurotransmitter used by the sympathetic nervous system to contract the muscles around the veins in the lower body.

There is evidence of low tyrosine in some PWCs and of a deficit in norepinephrine production in some with othostatic intolerance.

Fludrocortisone has been prescribed by some clinicians as a treatment for orthostatic intolerance in PWCs, but its efficacy is not clear.
Midodrine has also received some testing, and has been helpful for some with orthostatic hypotension.
It is an alpha-1 adrenoceptor agonist, and thus acts in place of norepinephrine to constrict blood vessels. Clinicians should be alert, however, to possible excessive elevation of supine blood pressure by this agent.

The normal, healthy human body has requirements for about 40 essential nutrients to support its biochemistry and sufficient calories to provide the needed energy. Under normal conditions the
gastrointestinal system is able to obtain enough of these nutrients from the diet to supply the needs of the cells to a significant degree (though perhaps not an optimum degree), and the cells are able to metabolize the nutrients from food to maintain normal function and at least a nominal condition of health.

In the case of PWCs, there are two categories of problems in this area. First, while the gastrointestinal system functions well in some PWCs, in many others it does not. Second, in many PWCs the skeletal muscle cells in particular are not able to carry out
oxidative metabolism of absorbed fuels in a normal manner or at normal rates.

(This appears to be a result of partial blockades in the Krebs cycle produced by a rise in peroxynitrite secondary to glutathione depletion.
Prof. Martin Pall has theorized and published extensively about peroxynitrite in ME/CFS.)

With respect to the first category, it is important for the PWC and the clinician to assess the function of the gastrointestinal system at the outset to determine the best approach to diet and nutrition in the particular case.
At one extreme are those whose G.I. systems
are in such disarray that they are suffering from serious malnutrition and deficiencies. These PWCs have difficulty retaining sufficient body weight and suffer in many ways from the lack of essential nutrients.
At the other extreme are those who appear to have normal function of their digestive system, and who may have great difficulty avoiding constant weight gain. In between are most PWCs, who experience varying degrees of malfunction of this system and may have some deficiencies in nutrients.

Problems with the digestive system that are commonly found in PWCs include lack of sufficient stomach acid, overgrowth of yeasts and/or deleterious bacteria in the intestines, intestinal permeability, food allergies, sensitivities or intolerances, and irritable bowel syndrome.
Celiac disease is occasionally found.

In cases of serious malfunctions of the gastrointestinal system that are producing malabsorption and serious deficiencies of essential nutrients, clinicians should consider intravenous nutritional interventions, such as the Myers cocktail.
This approach bypasses the gastrointestinal system and delivers essential nutrients directly to the cells via the blood stream. This may be the only way to get the boost needed to begin recovery of health.

If there are problems with the digestive system, it is important to deal with them before doing the other things discussed below. Specifically, if the digestive system is not producing at least daily, well-formed, normal-colored, normal-appearing stools, and the PWC is not free of symptoms such as excessive gas (belching or flatus), bloating, intestinal cramps, diarrhea, constipation, poor stomach motility, gastroesophageal reflux (heartburn), and/or
multiple food allergies or intolerances, then the gut needs to be dealt with before other aspects described below are entered upon.
There are several reasons for this:

a. An efficiently performing gut is necessary to absorb nutrients adequately. Without them, the body won't be able to obtain what it needs to get well.

b. The gut is the final pathway for dumping many toxins. If a PWC has had ME/CFS for an extended period of time, the body will have large burdens of toxins, because the detox system has not been functioning well (largely because of the depletion of glutathione), and the toxins will have had time to build up.
There must be a clear pathway to carry the toxins out before one begins to mobilize them, or they will be recirculated and may end up in a worse place than where they were located initially. For example, more of them may be moved into the brain.

c. If the PWC has dysbiosis and leaky gut,
the resulting absorption of antigens directly into the blood stream from the lumen of the gut will be placing a heavy load on the immune system, and it may not be able to recover unless this load is lifted first.

Clinicians should first rule out structural causes for gastrointestinal symptoms by conventional diagnostic methods. If structural abnormalities are not found, a Comprehensive Diagnostic Stool Analysis (CDSA) such as is available from www.gsdl.com, should
be performed.
If parasites are suspected, a detailed parasitological stool analysis should be performed, such as is available from www.parasitetesting.com. The results of these tests should be used to augment the bowel treatment program discussed below with specific additional remedies as needed.

I suggest considering the bowel treatment program described by Dr. Serafina Corsello in her book "The Ageless Woman," available at Corsello.com
This program includes bowel cleansing, soothing and repopulation with probiotics.
The detailed ingredients used are given in the book, and are all non-prescription items.

In addition to this bowel treatment program, the most beneficial things for promoting normal function of the gut are eating sufficient fiber in the diet (fresh fruits and vegetables and whole grains), drinking enough water, and getting sufficient (but not excessive) exercise.

Turning now to the second category of problems in diet and nutrition in ME/CFS, many PWCs have partial blockades in the Krebs cycles of their red, slow-twitch skeletal muscle cells, and these cells are thus not able to metabolize carbohydrates completely to carbon dioxide and water. When a PWC with such partial blockades continues to consume too many carbohydrates, especially those of high glycemic index, the results may be surges of insulin, hypoglycemia, and conversion of carbohydrates to stored fats, resulting in persistent weight gains.

The metabolism of fats is also limited in many PWCs by the Krebs cycle partial blockades, and transfats in particular interfere with the proper metabolism of the essential fatty acids and distort the structures of cell membranes.

Proteins are utilized as fuel at higher rates than normal in the bodies of many PWCs, because they are broken down into amino acids, which are to some degree interconvertible by transamination
reactions, and some of them are able to compensate for the Krebs cycle partial blockades by anaplerosis, and thus to be used effectively for fuel.

As a result of the above, many PWCs find that they feel much better on a diet that is relatively high in protein and relatively low in carbohydrates and fats, especially low in foods containing significant amounts of sugars and white, starchy foods such as potatoes, rice, pasta, and bread, and also low in saturated fats and transfats.
It is important to choose proteins that do not provoke an allergic response. Meats are often better tolerated than dairy foods or eggs. Vegetables that grow above the ground are good choices to supply essential nutrients and fiber.

With regard to determining the status of the essential nutrients, including the vitamins, the minerals, the essential fatty acids, and the essential amino acids, the best approach is to perform blood tests, such as those offered by Metametrix.com and
Bodybio.com

With results of such testing, it will be possible
to emphasize supplementation of those nutrients which are deficient. If this is not feasible, then I suggest regular ingestion of a high-potency general nutritional supplement such as
Sparx ( Krysalis-sparx.com), two teaspoons of essential fatty acids with the ratio of four-to-one linoleic acid to alpha linolenic acid, and an undenatured whey protein product such as ImmunoPro Rx
(for example, from Immunesupport.com).

Certain nutrients have been found to be especially helpful to many PWCs. These include:

I.M. or S.C. injections of
hydroxocobalamin (vitamin B12) at relatively large doses--10,000 micrograms or more per injection, two or three times per week.

I.M injections of
magnesium sulfate (100 mg per week) together with taurine (This one is painful, but the taurine helps), together with 600 mg magnesium as glycinate or malate per day, taken orally.

L-carnitine comes in here, too, at 1 to 2 grams, three times per day. It's important to take lots of antioxidants to counter the condition of oxidative stress:
2 grams of vitamin C per day, in divided doses, some bioflavonoids, coenzyme Q-10 (100 mg per day, provided it is tolerated),
and 400 I.U. per day of vitamin E.

Alpha lipoic acid should be avoided if there is likely a high body burden of methyl mercury (such as if the PWC has been eating a lot of large predatory fish, such as tuna or swordfish or shark, especially).

Otherwise, alpha lipoic acid can help to build glutathione, and 100 to 300 mgper day can be used.
S-adenosylmethionine (SAMe) can be helpful, at 400 mg, 2X per day, orally.
(Those with bipolar or manic-depressivedisorder should avoid taking SAMe, because it can bring on the manic phase.)

There are also some things that should be eliminated from the PWC's diet: caffeine, alcohol, MSG, Nutrasweet, food colorings, and other artificial food additives.

More information on diet and nutritional approaches in CFS can be found in Chapter 27 of
the Handbook of Chronic Fatigue Syndrome
(Edited by L. Jason et al., Wiley, Hoboken, NJ, 2003), which was written by the present author.

As noted above, toxins build up in the PWC's body over the course of the illness, primarily because of glutathione depletion. Glutathione is responsible for Phase II detoxication of several important categories of toxins, and it also serves as the basis for the antioxidant enzyme system, which among other things is necessary to deal with oxidizing free radicals produced during Phase I detoxication of many toxins.

Important work has been done on detoxication in recent years by Ritchie Shoemaker, M.D., and by Patricia Kane, Ph.D. and her coworkers.

I suggest that clinicians obtain a copy of
The Detoxx Book by Foster, Kane and Speight
( Detoxxbook.com) and consider the protocols described therein. They include intravenous injections of glutathione and phosphatidyl choline as well as oral supplementation with appropriate oils and lipids. These measures serve to augment the body's supply of glutathione as well as to replenish the fatty acids needed by the body and to promote flushing
of the liver, gall bladder and biliary tract.

Other methods of helping the body to build glutathione include use of oral undenatured whey protein products (such as ImmunePro Rx, available from Immunesupport.com).

Use of these in CFS was pioneered by
Paul Cheney, M.D., Ph.D.

This is a very powerful way to build glutathione. For those who have allergies to whey protein, the use of oral N-acetylcysteine (NAC) and the other amino acids making up glutathione (glycine and glutamic acid or glutamine) is preferable.

Jeff Clark at Cfsn.com sells such amino acid precursors for building glutathione.
(Some PWCs react badly to anything that contains sulfur, which whey protein and NAC do. If this is the case, they should consider taking 250 micrograms of
molybdenum and 100 mg of vitamin B-6 per day, and starting slowly on the NAC or other sulfur-containing supplements.)

It should be noted that it is not always easy to build the glutathione levels back up to normal, because there are numerous vicious circles that make this difficult, especially if the PWC has been ill for an extended period of time.

When the glutathione begins to build back up, both the detoxication system and the immune system will start to come alive, and they will start moving toxins into the blood stream.
This may produce an exacerbation of symptoms known as the Herxheimer reaction, and this may require a reduction in dosage. Having generous amounts of indigestible fiber in the diet at this time is helpful to bind toxins in the gut and carry them out in the stools.

Many PWCs have a lower than normal metabolic rate in their skeletal muscles as a result of the partial blockades in the Krebs cycles there. The results are that they exhibit a low armpit temperature and they feel cold much of the time, even if they have normal thyroid function (which many don't).
In addition, many PWCs have accumulated various toxins in their bodies, as noted above.

Use of far infrared (FIR) heating serves to simultaneously raise the metabolic rate and sweat out toxins. Sherry Rogers has been a proponent of FIR for detox. It's important to use FIR heating, which penetrates into the tissues, and not other types of heating, such as standard near-infrared bulbs, dry or wet ordinary saunas, or hot baths or showers, because these methods deposit heat primarily in the skin. Heating the skin results in dilating the arterioles that supply blood to the skin, and in many PWCs this will provoke low blood pressure or tachycardia because of lack of sufficient blood flow to the brain.

PWCs who feel cold much of the time, or who have armpit temperatures upon awakening that are significantly below normal, should consider FIR heating. In the order of cost, beginning with the lowest cost, this is available in the forms of individual FIR lamps, FIR heaters that stand on the floor,
FIR sauna tunnels, and upright FIR saunas.

One approach (pioneered by Jim Clements) is to get two FIR heaters (so you can sit between them) and use them for about 15 or 20 minutes a couple of times per week. Unless a tunnel or full sauna is used, it may be necessary to warm the room first (a small room is best, such as a closet or bathroom), and it may be necessary to outgas vapors from the walls or wall coverings by heating and ventilating the room before it is used with the heaters.

FIR heating seems to help people most who feel cold, and who have orthostatic intolerance (and thus cannot tolerate other ways of heating the body, such as hot showers, without feeling faint).
Considerable water and minerals are lost in the sweat during FIR heating, so it is important to replace them by drinking lots of water before and during the heating, and also to take enough of a good multimineral supplement.

Replenishment of magnesium and zinc is particularly important.This heating often feels very pleasant, and it is easy to overdo it, so care must be taken to approach this gently.

If a PWC begins to feel worse after undertaking a program of FIR heating, she or he should try backing off on the total amount of time it is used per week, and/or increasing the intake of water and/or minerals.

Many PWCs have accumulated considerable body burdens of toxic heavy metals, again because of their longstanding glutathione deficit. One heavy metal that is very commonly elevated is mercury, because of its constant evaporation and corrosion from amalgam fillings in the teeth, and because of the consumption of large predatory fish, including tuna.

It is important to test for heavy metals before initiating efforts to remove them. I suggest a combination of hair testing (as for example by Doctor's Data Laboratories) and urine testing after challenge by a chelating agent such as DMSA (succimer)
(as offeredby the King James Laboratory in Ohio, for example). Blood and stool tests are also available, and there are proponents for each.

If excessive mercury is found, its removal from the body must be done very carefully, because otherwise it is possible to mobilize it and transfer it into the brain and nervous system, where it acts as a neurotoxin.

In the field of toxicology, one of the time-honored principles in treating toxicity is to first remove the source of the toxin. This has led many PWCs, when they became aware of the sources of mercury in their teeth, to rush to have their amalgam fillings removed.
Based on the unpleasant experiences of several who have done this, I suggest that it is important first to properly build up the detoxication system as described above, so that mercury that is released to the body during the removal of the amalgams can be
properly dealt with.

In addition, it is important to select a dentist who uses measures for minimizing the mercury exposure of the patient from this procedure, such as abundant water cooling to keep the amalgam material cool during drilling, a high volume air suction device to remove mercury vapor to prevent its inhalation, and a dam to prevent the swallowing of mercury-containing material.

There are several agents available for chelation of mercury. I recommend that an experienced specialist in this field be consulted, since there are many pitfalls.

Many PWCs are suffering from inflammation and local infections. I believe that these are exacerbated by the low output of cortisol in many PWCs after their onset, as a result of HPA axis malfunction.
These infections should be sought out, based on the PWCs medical history and symptoms, and by specific testing of suspicious areas. Common examples are infected root canals, infected cavitations where teeth have been pulled, sinus infections, and infections in the nasal passages.

Problems in the teeth and gums may require removing teeth or cleaning out cavitations. An experienced oral surgeon is needed for this.

Sinus infections can be bacterial or fungal or both, and may need to be treated with both antibiotics and antifungals.

Coagulase-negative staphylococci, which used to be considered innocuous, may not be so for PWCs, and may need to be treated with a combination of antibiotics.

Pioneering work in this area has been done by:

- Neil McGregor, Ph.D., in Australia, and by
- Ritchie Shoemaker, M.D., in Maryland.

Testing for coagulase- negative staphylococcus is not routinely done, but is available from
Esoterix.com by culturing of deep nasal swabs.

In CFS, it is commonly observed that the immune response has been shifted to the Th2 mode, away from the Th1 mode. I think this results from long-term elevated cortisol prior to onset, followed by glutathione depletion.
Some pathogens are also able to promote this
continuing shift in their own self interest. Because of this shift PWCs are particularly vulnerable to viral and intracellular bacterial infections, which require a viable Th1 response for their defeat.
Many of the viral infections found in PWCs appear to result from reactivation of latent endogenous viruses of the herpes family.

Testing should be done for Epstein-Barr virus, cytomegalovirus, HHV- 6, mycoplasma, and chlamydia as a minimum, as these are most commonly found in CFS. PCR testing for these pathogens and others found in CFS is performed by
Mdlab.com

David Berg of Hemex Labs in Phoenix has pointed out that in many PWCs there are genetic variations in proteins of the blood clotting cascade that lead to hypercoagulation when the immune system
responds to infections.
His lab offers tests for this condition. If present, hypercoagulation can be countered by low dose heparin and by nonpharmaceutical substances such as lumbrokinase and nattokinase.
It is very important not to counter only the hyper-coagulation alone, but also to simultaneously combat the infectious agent involved. Otherwise, the infection can become worse, as can the hypercoagulation in response to it.

Most of these infections are suppressed by a healthy immune system, and Paul Cheney, M.D. reported that glutathione rebuilding was effective for restoring the ability of the immune system to put them down.
In addition, many herpes family viruses can be suppressed by taking 3 grams of L-lysine per day, and avoiding foods that are high in arginine, such as chocolate and nuts.
Nonpharmaceutical antiviral substances include oil of oregano and olive leaf extract. There are also pharmaceutical antivirals that are effective for some of these viruses. Antibiotics can be used to treat mycoplasma and Chlamydia infections.

Some PWCs have viral infections in the brain, i.e. viral encephalitides. These are difficult to knock out, but some are treatable with existing antivirals, as has been shown by Daniel Peterson, M.D. of Incline Village, NV.
Testing for these infections involves performing analyses, including PCR analyses, on spinal fluid taken from a spinal tap (lumbar puncture).
PWCs who have pressure-type headaches and a variety of neurological symptoms are suspects for having encephalitides.

Transfer factors (such as are available from
Immunesupport.com) are another approach that has been found effective in suppressing viral infections in PWCs. Joseph Brewer, M.D.,
of Kansas City has reported success with transfer factors against HHV-6 infections.

As mentioned in the Application section, another very important pathogen to test for is Borrellia Burgdorferi, the spirochete that is responsible for Lyme disease. It is important also to test for
other tick-borne disease, such as babesiosis and erlichiosis.

This is especially important for PWCs who have spent time in brushy or wooded areas where deer and mice live. Up to this point, there have not been completely reliable tests to distinguish between long-term disseminated Lyme disease and CFS, but clinicians should consider the tests offered by
Igenex.com and by Immunoscienceslab.com, together with use of clinical diagnosis.

It remains to be seen whether the new test recently announced by the NIH will prove to be more reliable than past tests.

To achieve long-term control of infections,
it is necessary to have a healthy immune system.
Supply of the essential nutrients for the proper operation of the immune system has been covered in the section on Diet and Nutrition.
The replenishment of glutathione, which is also very important for the immune system, has also been
covered above. The elimination of inflammation, bacterial infections, and the suppression of viral and intracellular bacterial infections will go a long way toward taking the load off the immune system, and this has also been discussed above.

The neuroendocrine system, which has significant effects on the immune system, is discussed in the next section. Because of the interactions between them, these two systems should be supported simultaneously.
If the immune system continues to be shifted to the Th2 immune response, it may be necessary to rebalance it, by using immune modulators such as Isoprinosine (Imunovir), MGN-3, Moducare or Pinextra.
The goal is to restore the immune system's ability to respond either with a Th1 or a Th2 response, whichever is needed to combat the threat.

There have been reports that cimetidine (tagamet) is effective in enabling the immune system to overcome suppression of Th1 (cellmediated) immunity by blocking the histamine H2 receptors on cells of the immune system that the pathogens use to fool the immune system. (Since cimetidine suppresses the production of stomach acid for several hours, it is best taken at bedtime, on an empty stomach.
It also suppresses phase I detox for some drugs, and may have other side effects which should be taken into account.)

ProBoost thymic protein A (available from
Immunesupport.com) may be helpful here, too, since it promotes the production of new helper T-cells by the thymus gland.

Glutamine is another substance that may help here, because it is the main food for the lymphocytes.
It is necessary to take a large dosage to supply it to the lymphocytes, because it's also the main food for the intestinal cells, and they have first access to it.

Some PWCs react unfavorably to glutamine (probably because of a leaky blood-brain barrier that allows too much of it into the brain to form glutamic acid, the main excitatory neurotransmitter). Therefore, it is a good idea to start with a low
dosage and work up to as much as 20 grams per day if it is tolerated well. Bulk glutamine powder is available from Beyond-a-century.com, and it has a sweet taste, so it isn't hard to take.

It may not be possible to restore the immune system to complete health until the HPA axis is dealt with, as described under the neuroendocrine system in the next section, because cortisol and DHEA are important to the operation of the immune system.

As part of the immune system balancing, it's also necessary to deal with allergies, because they will tend to exhaust the immune system and keep it shifted to Th2. It's important to identify the
substances that produce allergic reactions or sensitivities, and to avoid them. Detailed allergy testing should include both the RAST test and the Elisa-ACT test.
If these are not feasible for a particular PWC, elimination of the major causes of food allergies
and sensitivities can be tried. Elimination from the diet should extend for at least two weeks.
The major causes are dairy products and wheat.

Hopefully, the leaky gut condition has been dealt with in section 8 (Diet and Nutrition) above, and that will have eliminated food intolerances, which also place a load on the immune system.

Another approach that has helped to improve the immune system function in some PWCs is to perform skin brushing or lymphatic massage, to help the flow of the lymph, which carries the immune
system cells back to the blood stream via the thoracic duct.

The neuroendocrine system is strongly impacted in many PWCs. Prior to the onset of CFS, many PWCs were subject to long-term stress, as discussed earlier. The body has specific responses to various kinds of stress, but it also has nonspecific responses to stress in general.

The latter involve the hypothalamus-pituitary-adrenal axis and the sympathetic nervous system interacting with the adrenal medullas.
Long-term stress produces long term elevations in the
secretion of cortisol by the HPA axis and epinephrine by the adrenal medullas.

This can lead to adrenal fatigue and can contribute to
the depletion of glutathione by detoxing the adrenochrome that results from the oxidation of some of the epinephrine. After onset of CFS, in many cases the cortisol secretion is below normal and/or has lost its proper circadian variation, and this appears to result from problems with the hypothalamus or higher brain centers. The mechanism for this is not yet understood, but it may result from the effects of long-term cortisol elevation.

In addition to this, there are thyroid problems in many PWCs, most commonly hypothyroidism and Hashimoto's thyroiditis.
The thyroid produces considerable hydrogen peroxide in the course of synthesizing its hormones, and the cells are normally protected from this by glutathione. It seems likely that the glutathione depletion that occurs in CFS may be responsible for damage to the thyroid gland.

Furthermore, in female PWCs, problems with the levels of the sex hormones are commonly found.
In particular, estrogen dominance is often a problem, especially after menopause. Even though estrogen
secretion drops considerably in menopause, progesterone secretion may drop even more significantly, producing estrogen dominance.
This was emphasized by the late Dr. John Lee.
These neuroendocrine problems are best dealt with together, because they are interactive.

Considering first the HPA axis, it is helpful to determine the status of this axis by means of an Adrenal Stress Index test which is a saliva test that measures the levels of cortisol at several times during the day, as well as the DHEA and secretory IgA levels.
This test is available from Diagnostechs.com
Based on the results of the test, support can be given to the adrenals if needed.
Dr. James L. Wilson describes this in his book, available at Adrenalfatigue.com

Dr.Corsello's book ( Corsello.com) has some helpful advice about this, too. In supporting the adrenals, the goal is to give them a rest by supplying an exogenous steroid for a time, together with
nutrients particularly needed by the adrenals, such as pantothenic acid and vitamin C, but to avoid using exogenous steroids at too high levels or for too long a time, so that the HPA axis does not adapt to them and become dependent on them.
It is wise to start with very low doses of exogenous steroid if a PWC's HPA axis is badly suppressed.

The status of the thyroid should be determined not by measuring only the levels of TSH and T4, but also by measuring the level of free T3, because many PWCs don't convert T4 to T3 very well.
(This may result from the fact that the enzymes that perform this conversion are selenoenzymes, and selenium forms an intermetallic complex with mercury, which is elevated in many PWCs.)

In addition, it's wise to measure the armpit temperature upon awakening for a few days to see
if it is running low, and to pay attention to other hypothyroid symptoms, such as general tiredness, weight gain, aches and pains in the joints and muscles, low sex drive, abdominal bloating, puffy face, depression, muscle cramps, constipation, thickened skin, dry and pale skin, thin or brittle fingernails, brittle hair, hair loss, including loss of the outer parts of the eyebrows, feeling cold even in warm temperatures, and a milky discharge from the breasts).

In CFS, it is often not easy to distinguish between hypothyroidism and partial blockades in the metabolism, since there is considerable overlap in symptoms. However, if there appears to be a constellation of symptoms that are consistent with low thyroid, a trial with thyroid hormone should be considered. In particular, consideration should be given to Armour thyroid, because it supplies both T3 and T4.

I suggest referring to Dr. Corsello's book
( Corsello.com) for a discussion of balancing the female sex hormones.

If all these steps have been carried out, and a PWC still hasn't fully recovered, the reason may be that there has been damage to the organs and tissues by pathogens, toxins and oxidizing free radicals during the duration of the illness. There are several
approaches now being tested to repair this damage.

One is injections of growth hormone and bovine growth factors, to stimulate the production of new cells, including those in the brain. Another is live cell therapy, which is done in Mexico, and another is stem cell therapy, which is new and controversial.

Further developments can be expected in these areas.

Disclosure Statement and Disclaimers

I am an unlicensed independent researcher with a background in the physical sciences and engineering. I have been studying chronic fatigue syndrome (CFS) as an avocation for more than seven years.
Though I am not a clinician or a practitioner and do not accept remuneration from clinicians, patients, or vendors of the products mentioned herein, I have attached a disclosure statement about myself at the end of this document, in keeping with the spirit of
that part of the California Business and Professions Code that pertains to complementary and alternative health care services.

Where particular products or laboratories are cited in this general outline, these citations are intended as possibilities rather than specific endorsements.
These possibilities are not intended to rule out other products or laboratories that may also be available.

Clinicians or persons with chronic fatigue syndrome who choose to follow this general outline do so at their own risk. In particular, as an unlicensed researcher I am not authorized to prescribe
pharmaceuticals. Where these are mentioned, they are intended only as possibilities for consideration by licensed health care practitioners, who remain responsible for their prescription.

I am hopeful that this general outline will be of help to those suffering from chronic fatigue syndrome as well as those who treat them.

richvank ((at)) aol ((dot)) com

Thank you.

Richard A. Van Konynenburg

This general outline is intended to apply to PWCs who have been diagnosed as having CFS according to "Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols," by Carruthers, et al. (Journal of Chronic Fatigue Syndrome, vol. 11, no. 1 (2003)).
These diagnostic criteria were developed by a consensus committee under the auspices of Health Canada.

This general outline is also appropriate for PWCs diagnosed under the older Fukuda et al. international research case definition developed under the auspices of the U.S. Centers for Disease Control and Prevention in Atlanta, GA.

It is particularly important to make efforts to rule out Lyme disease in people who have ME/CFS-like symptoms.
This has been very difficult to do, and many have suffered from Lyme disease for years while carrying a diagnosis of ME/CFS.
The NIH has recently announced a new test for Lyme disease. If it turns out to be reliable, it will be a major contribution.

The PWC population as currently defined by the above diagnostic criteria is heterogeneous, composed of many subsets.
There are few serious ME/CFS researchers who doubt this, and many are now emphasizing the importance of separating the subsets in order to make further progress in understanding the causes of ME/CFS. Consequently, a single, uniform treatment protocol is not appropriate and will not be effective for all PWCs.
In the general outline described here, there are many parts, and I have attempted to point out criteria for inclusion of the various parts when tailoring to an individual PWC.