Myalgic encephalomyelitis

Introduction

Chronic fatigue syndrome (CFS) is a disease characterized by symptoms of extreme, long lasting fatigue, loss of memory [Marcel], impaired sleep, sore throat, muscle and joint aches, headache, cough, photophobia, night sweats [Evengard], depression that has much lower ACTH and cortisol secretion than typical depression [Demitrack], lymph node pain, eye pain and fibromyalgia (muscle pain) [Bell DS], as well as white spots on MRI brain scans [Buchwald 1992] and single-photon emission computed tomography (SPECT) scans [Schwartz], loss of fingerprints in a third of the patients [Johnson p345], and a chronic low level activation of the immune system [Cannon] which may be accounting for many of the non-neurological symptoms, but all very variable, perhaps because different parts of the brain are attacked.

Women are much more often affected than men. No one has been able to assign a definitive cause to it with certainty, although it has been proposed to be a hypochondria from misdiagnosis [Johnson p 126] or mass hysteria from reading newspaper articles proposed by the Center for Disease Control in the USA [Johnson p 135-138, 339, 342] (both very unlikely), an Epstein-Barr virus [Holmes] (because that virus antigen is often found in it as an opportunistic infection, but refuted [Buchwald 1988]), poor nutrition compounded by lack of exercise [Johnson p685], a poison [Racciatti], or a retrovirus (because fragments were detected in some of its victims similar to retrovirus) [DeFreitas]. (The retrovirus work has ended because DeFreitas has become very sick and no one else has been competent to continue her work.)

That it is caused by a virus which damages the immune system is highly probable since it comes on suddenly with flu-like symptoms and shows up in clusters associated with social groups [Buchwald 1992]. Fragments of mycoplasma pathogen species have been found in CFS and fibromyalgia but they are probably opportunistic infections because when multiple species are found in the same patient it correlates with the length of time CFS was present [Nasralla].

The hypothesis that CFS is a psychosomatic illness has resulted in thousands of ruined and destitute lives. There probably has not been so ruinous a result from a failed hypothesis since governor Phips ended the Salem witchcraft trials. Even the blood letting of the 18th century was fairly minor After all, how much harm can you do removing a few drops of blood? The hypothesis by medical doctors that it was not necessary to wash hands for childbirth caused many deaths, but at least these mothers were given a fairly quick end. The CFS victims could not collect insurance support or disability and descended into poverty.

That hypothesis was probably an important part of the chief cause of death, suicide. It is not only in the USA that the physical nature of this disease was denied. A young girl was taken away from her mother until the age of 18 because the mother dared to disagree with a doctor that the girl was faking her symptoms.

A poison cannot be ruled out as at least a contributing factor [Bell IR], and may have been involved in the Gulf war syndrome. Anthrax vaccine has been proposed as triggering Gulf war syndrome with some convincing statistical evidence [http://www.house.gov/reform/hearings/healthcare/99.10.12/bates.htm].

However, I believe there may have been other medical procedures at the same time. These brave men were denied support also.

There have been other names for the syndrome proposed. "Yuppie flu" was proposed because at first only higher income people had enough money saved to hire doctors or lobby officials. Chronic fatigue immune deficiency syndrome (CFIDS) was proposed because the immune system was distorted and it was hoped that this name would gain the victims some support and research funds. It would be too bad if the early cavalier attitude toward CFS resulted in adopting such a cumbersome name. Fibromyalgia, which is widespread muscular pain, was proposed as a variant of CFS and probably is. The name "myalgic encephalomyelitis" (ME) was assigned to a similar disease by medical researchers in the British Commonwealth. Post-viral fatigue syndrome (PVFS) and post-infectious neuromyasthenia were also used.

Discussion

So the cause is unknown. This leaves us with the problem of what to do about the disease currently while we wait for researchers to figure out what direction research should take and what causes it.

It has been proposed that poor nutrition and lack of exercise are contributing factors [Johnson p 685]. It certainly is plausible that a poorly nourished body would be more at risk. A vegetarian diet using lots of raw vegetables has significantly improved the symptoms of fibromyalgia with 19 out of 30 subjects reporting considerable improvement of all symptoms after a few weeks [Donaldson]. It would be a good idea to find out what in raw vegetables was responsible. That diet gave five to 6,000 milligrams of potassium per day and 460 milligrams of magnesium. It has been discovered that magnesium injections mute the symptoms significantly [Takahasha] [Cox]. So magnesium supplements may be in order for CFS people who eat junk food and maybe for everyone with CFS. However, magnesium was found to be normal in the red cells in CFS patients [Hinds] and magnesium is normal in blood cells during a magnesium deficiency as well, so red cell content cannot be used in diagnosis.

A whole body (cell content) analysis of potassium has found that potassium averaged a little lower in CFS than the general population [Burnet] which general population is low in potassium in our society to start with. The CFS average was about two-thirds of the highest values of healthy people. This is ominous because the highest values is the normalcy which the body attempts to attain since there is no storage of potassium in the body other than the tolerable range of soluble potassium in the cell fluid. It could be that potassium supplements are in order as well. Magnesium should be part of the experiment since potassium requires adequate magnesium in order to be absorbed effectively [Petersen] [MacIntyre] and it is possible that inositol [Charalampous] is necessary also. While excessive salt intakes are detrimental, it is necessary to receive moderate amounts of sodium salt because extremely low intakes also increase potassium excretion. (See a marvelous and extensive article by Mildred Seelig on the relation of magnesium to CFS and FM, in which she suggests that CFS is a magnesium deficiency [Seelig]. I suspect it is not quite that simplistic. [see http://www.execpc.com/~cc?cimd.html]

Experiments must be performed with caution, however, because when a patient thought to be exhibiting symptoms of fibromyalgia was brought to 5.0 mEq/1 in her blood (which is close to normal) she contracted paralysis [Gotze]. This may be because experiments have shown that people who have CFS with muscle pain have normal serum potassium [http://www.ahmf.org/r-burnet98.html] and so fibromyalgia must be a different variation of CFS. In monkeys the electrocardiogram in magnesium deficiency resembles that of high serum potassium (hyperkalemia) in spite of low serum potassium (hypokalemia) [Manitius p39]. So it is possible that lower cell potassium requires lower serum potassium for adequate nerve transmission, but the serum potassium does not drop correspondingly [Manitius p38]. If a magnesium deficiency does develop, half a year of supplements can be required for complete normalization of the effect of magnesium content on potassium. [Anonymous] If you wish to try increasing potassium by diet you may see a table which gives the relative values of potassium at; [http://members.tripod.com/~charles_W/table.html]. Considerable increases in potassium are possible without the necessity of eliminating cooking and there is less danger of imbalances with other nutrients.

It may be that meals should be more than three times per day in smaller increments since the adrenal glands in CFS patients average smaller than other people [Scott & Dinan] and their depression has much lower ACTH and cortisol secretion [Demitrack] which may be partly from the smaller glands. There is a good chance damage to the part of the brain which controls the pituitary is a more important part of that low ACTH than gland size, and therefore cortisol also, by disruption of the brain-pituitary axis [Scott & Svec & Dinan].

Also smaller meals would help prevent surges of potassium too high for those with weakened kidneys to handle efficiently as well as possibly increasing the useful cell retention.

If you would like to explore nutrition there is a good site which lists many good links organized in categories at [http://www-sci.lib.uci.edu/HSG/Nutrition.html] and a good site on general health information by Dr. Mercola at [http://www.mercola.com].

Exercise has also been found to be helpful in CFS by numerous experiments [Hakkinen] [Mengshoel]. Both moderate and intense exercise has shown to be helpful [Hadhazy]. However, over training can precipitate CFS [Shephard] and exercise brings on a severe fatigue which lasts for days [Johnson p329-330, 491-492] so it seems to me that exercise should be mild (such as walking [Coutts]). This is supported by an experiment which showed that exercise in a pool gave less pain, anxiety, depression, and more days of feeling good [Jentoft] than terrestrial exercise and short, mild treadmill exercise caused no obvious problem [Clapp]. I suspect that many short periods of mild exercise across the day would be the preferred routine. I suspect across the day partly because clearance of blood through the liver in order to remove electrolyte hormones such as aldosterone [Messerli] (which removal decreases potassium losses and sodium retention) is probably an important part of the value of exercise. Even robust exercise had beneficial results in some of the symptoms other than the symptoms mentioned above [Hadhazy] but it is conceivable that these patients had a different part of their brain affected by the disease. Until researchers get it figured out it would be a good idea to approach exercise cautiously and moderately.

There are many clever devices which have been invented for other degenerative diseases. There is no reason why these devices cannot be made available if they can be financed by society. Societal support would be necessary for most because severe CFS is so debilitating that it is impossible for some of these people to support themselves.

The most debilitating other infirmity than fatigue is loss of memory. CFS patients should carry maps with them showing the way home and notebooks with important information like phone numbers and grocery lists and this should help considerably. For those who have lost fingerprints [Johnson p343], a good ID should always be on them and perhaps name and number imprinted on their arm by a dye.

Another procedure which should be effective would be to carry cell phones with a button which automatically dials a central office which has people on duty familiar with the important information in the patient's life and which has people skilled at giving emotional support in order to deal with the depression often present.

There is evidence of opportunistic herpes infection since 77% of CFS patients contain antibodies to HHV-6 EA as IgM and IgG [Patnaik]. It may be prudent for these CFS people also to eat sparingly of foods high in arginine continuously after CFS or maybe until tests determine that the immune peptide hormones [Patarca] and natural killer cells [Caligiuri] are all normal again. This is because the amino acid arginine accentuates the symptoms of herpes [McCune] and maybe even trigger a resurgence of a dormant infection such as shingles (dormant chicken pox). Foods high in arginine are peanuts, cashews (peanuts are 50% higher than cashews but cashews are substantial), chocolate, and seeds other than the grass derived grain.

Lysine supplements may be in order also because lysine helps to mute the effects of the herpes virus significantly, reducing the occurrence (when taken routinely during the disease), severity and healing time of herpes simplex virus [Griffith]. It probably does so by interfering with the absorption of arginine by the virus.

You may see an excellent table of nutrients including amino acids at; [http://www.nal.usda.gov/fnic/cgi-bin/nut_search.pl] (just divide the values by the Kcal figure to get valid comparisons) and a table which shows lysine and arginine values by weight of food and lysine and arginine ratios at; [http://www/healthy.net/asp/templates/article.asp?PageType=article&ID=1744]. Those who have CFS should not be afraid to experiment with nutrients. The human body is very resilient. As long as you do not use a poison or procedure known to be harmful, there is not much chance that irreversible harm will transpire.

Experimenting has some risk but doing nothing is even riskier. If you do come across a nutrient, combination of nutrients, or procedure or other circumstance which produces perceptible positive or negative effects, perhaps you could see yourself clear to email the information into a site which is attempting to archive such experiences at: [http://www.casehealth.com] and/or the author of this article at; isoptera@angelfire.com with CFS as the subject. The author will never use your name or email address for any purpose.

As to NOT eating something, the chances of irreversible harm are vanishingly small. Of course your single case history is almost useless epidemiologically (the study of health statistics). However, perhaps it could become useful if you became a member of a group which keeps records and is willing to make the records public anonymously. Millions of people eat things about which no records are kept. Such as hydrogenated oils. If they are not to be studied by the people who sell them, the federal agencies, or the universities, then it would be a good idea if the people who eat food do so.

Just do not engage in any procedures out of the ordinary which go on interminably, especially medication or pain deadeners (analgesics) as pain deadeners have been proposed as a risk factor for CFS [Johnson p574]. Also several pain deadeners have been found to damage the kidneys. Among the prescription and over-the-counter medications that predispose patients to such damage are acetaminophen (Tylenol, Anacin-3, Liquiprin, Panadol, and Tempra) but not aspirin [Schwarz]. Kidney damage is extremely serious. Also it is plausible that anything which can damage kidney cells could damage immune cells as well.

The chance that a pain deadener will have any direct curative effect is vanishingly small, as it usually is better to tolerate the pain if at all possible.

Depression often shows up in CFS. Therefore it is almost certainly desirable to supply as much emotional support as possible. Good jokes, camaraderie, and tactile approval (like hugs) will not cure the disease, but there is a good chance they will mute some of the symptoms and make an eventual defeat of whatever infection is involved a little more likely. Just be sure to make kissing or eating and drinking out of the same plate not part of the procedure because there is a suspicion that the last of the two is a risk factor. Guarding the sufferer from fear and staying warm will also probably prove to be advantageous since it has been shown that staying warm enhances immunity [Hanson] and fear is well known to affect the immune hormones.

When surgery is necessary for CFS patients it is imperative that doctors become familiar with contraindications for medication because CFS patients are very susceptible to adverse reactions from some anesthetics and other medications [http://www.sonic.net/~melissk/anesthesia.html].

CFS is potentially extremely dangerous to society because of its severity and length of recovery time. If a mosquito ever learns how to transmit it, the situation will be desperate for society. Therefore enormous research effort should be mobilized to not just ameliorate it, but like smallpox, to eradicate it.

Correspondence:

The Arthritis Trust of America

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