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For NON-CFS/FMS/ME People
This letter was written at the behests of several of our Chronic Fatigue Patients. Since it is almost impossible for the non-CFS person to understand the feelings of these individuals, we have attempted to bridge this gap with this monograph. We suggest you download it and give a copy to all who doubt your suffering.
Date: 3/2/2005 4:21:38 AM ( 19 y ) ... viewed 3600 times We live in an age when the sensitivity toward, and compassion for,
individuals who have disabilities of all types is at a high level.
Unfortunately, we find that many people have a great deal of trouble extending this same understanding to those suffering with Chronic Fatigue Syndrome.
The reasons for this apathy toward the plight of these individuals are not difficult to understand. Usually the CFS patient does not look sick to the unpracticed eye. Even doctors are frequently very dubious about the validity of these patient's condition since all their test results are usually in the normal range. After all, if a doctor can't find anything wrong with them, can they really be sick? We all get tired, but we don't go around making it a
lifetime avocation. Wouldn't it be best for these people to just forget about their "illness" and get back to work like the rest of us? If they are depressed, why don't they just take some Prozac and embark on a good active exercise program? Isn't this condition just a form of "cop-out" for laziness? After all, if it is a weak adrenal, why don't they just take a cortisone drug and get it fixed up?
These are only a few of the many reasons that CFS patients have not, over the years, been treated with the respect and deference their condition warrants.
The main reason for this mis-perception regarding the CFS patient is the fact, just now being accepted by the more advanced medical researchers, that those individuals who are susceptible to CFS are not like the rest of society and, therefore, can not be accurately judged by the criteria of the majority. They are not constructed like the rest of us and yet we expect them to react and respond as if they were. Then, when they can't do so, no matter how hard they try (and they really do try), we condemn them as being lazy, neurotic or malingerers.
The truth is that they, on the whole, are some of the most ambitious and motivated people in the world, but, unfortunately, they were born with a glandular system that does not respond to stress as does that of the majority. When most of us are under stress, our gland system will cause a rise in blood pressure and a "fight or flight" reaction. This type of manifestation is normal for most of us and continues as long as we live unless we seriously abuse ourselves.
Those individuals who are prone to CFS have an entirely different reaction. While their glands may react like those of the majority in their early years, the time soon comes when their gland system can no longer support such a normal reaction and instead of a rise in blood pressure in response to stress, the blood pressure will actually fall upon overexertion or stress.
This counter-reaction was discovered many decades ago by alert
investigators, but was generally ignored until just recently when physicians at Johns Hopkins "rediscovered" it.
While this deviation in normal stress related blood pressure response may not seem to be an important reaction at first consideration, it is, in essence, the key to the entire nature of the CFS person. What it demonstrates, in a loud clear language, is that the CFS patient is not a person who is likely to react to anything like the rest of us. In fact, they frequently tend to
react just the opposite to the way most of us do to almost every type of human situation. Since they are not like us, do not feel or respond like us, any attempt to judge them by our standards is not only doomed to failure but usually does a great disservice to the CFS person.
If we reconsider our assessment of these CFS individuals in light of our new understanding about their inherent nature, we can now see why they cannot do as we might do and achieve the same results. If they are to survive, they must learn to manage their lives according to the nature and character of their own unique glandular makeup.
Answers to the Questions We Have Posed
The CFS patient usually does not look sick because they are not really "sick" as we generally use that term. CFS is not a sickness in the usual meaning of the word. It is, rather, a weakened condition of the glandular system (particularly the adrenal gland) that only manifests its obvious symptoms when the endocrine glands cannot send forth sufficient vitality to meet the immediate needs of the individual. The CFS patient cannot hide their condition to the practiced eye however. The eyes may well be the windows of
the soul, but they are also the windows to the glandular system to those who know what to look for and who are willing to not only look, but to see. For those who are alert (and know what to look for) the CFS patient stands out in a crowd as if they had the red "A" of Hester emblazoned on their bosom.
CFS patients very frequently have normal standard blood chemistry tests. The reason for this is given above. These individuals are not sick in the ordinary sense. That is, they may well not have the kind of conditions that plague the majority of humanity; diseases for which the regular blood chemistry tests were created. There are, however, special tests available that will readily demonstrate the true nature of their condition, but these
are not a usual part of the general medical workup. Why not? Because, almost all standard medical tests are wisely directed at the needs of the majority of patients. Given the medical needs-vs-cost argument so rampant today, it is only reasonable to expect this approach from the medical community. However, these neglected CFS patients do need, and deserve, a champion and it has been my pleasure to humbly serve in this capacity for over four decades now.
One of the most hurtful comments to a true CFS patient is that they are malingering. That is, that they are not really feeling as bad as they let on and if they just would "push" themselves a little more they would feel fine once again. Nothing could be further from the truth. We need to be wary of the age old misconception that "everyone thinks and responds as we do."
While in general life this concept is dubious, with CFS individuals it can lead to serious misunderstanding. CFS patients just do not react or respond like the rest of us. I know I have stated this dictum several times before, but it cannot be repeated too often, since it is the "key" to understanding and helping all CFS individuals. The world, as we know it, was built by non-CFS
people. Efforts to fit CFS patients into our world is like attempting to force a square peg into a round hole. CFS patients, with proper treatment, can, and must, learn to live in a world not designed for them, but, along the way to this goal, they need the help and understanding of all those around them, who, hopefully, will never have the misfortune to learn the devastating nature of this condition from personal experience.
Drugs like Prozac can only disguise the symptoms of the CFS patient. While there may be a place for such medication in the rare CFS patient for a short time, we generally find that all such drugs tend to worsen the CFS condition in the long run since they create a stress that further weakens the patient's glandular system.
One of the cardinal facts concerning the underlying nature of CFS is that those things that depend on the reactive ability of the body for their manifest benefit usually make the CFS patients worse because they have lost much of their innate ability to react properly. This is especially true regarding exercise. That which builds the muscles and strength of the average person only further weakens the CFS patient. However, as the CFS patient is treated and the glandular system improved, a carefully monitored set of
exercises can be suggested, but these need to be prescribed by a physician well versed in treating CFS patients and by no one else.
After successfully treating thousands of CFS patients, I can state one fact without the slightest fear of contradiction. They are not unproductive because they want to be. The most difficult task I have with CFS patients is getting them to rest sufficiently to allow for the needed regeneration of their glandular Systems. Usually, during the course of our treatment, as a CFS patient gets even a modicum of energy, they will do all they can to make
up for lost time, either at their job or at home. In this orgy of energy, they will usually continue until they completely exhaust themselves.
Actually the true CFS patient is one of the most ambitious individuals you will ever meet. The problem is, of course, that their glandular system, and therefore their body, cannot keep up with the activity of their mind and desires. Can you imagine a more frustrating situation? Is it any wonder that, at times,
CFS patients may seem a little testy. Who can say how we might respond with a similar albatross around our neck?
Almost everyone has heard of the wonders of cortisone. If these CFS patients have an adrenal gland weakness, why not just give them cortisone and be done with it? While cortisone is a very useful drug for many things, it is only of rare help in the treatment of CFS patients.
Since these patients have a functional weakness of the adrenal gland, not a pathological one, cortisone will tend to weaken their adrenal gland further if it is used for any length of time. The normal adrenal gland excretes some forty-plus substances required by the body and cortisone is only one of these forty. When it is administered to the CFS patient, it tends to suppress the
formation and distribution of the other two score substances.
How Do We Know That a Person Has CFS?
In my early days of treating this condition, it was very difficult to differentiate CFS from a wide variety of other weakening conditions. We now have various new tests (such as the Adrenal Stress Index) that allow us to make a very definitive diagnosis without fear of mistake. Not only do these tests tell us if an individual has CFS but, more importantly, exactly the
specific stage of this condition that the patient is experiencing. Yes, CFS does meander through several stages as the glandular system, in its weakened condition, goes through various gyrations attempting to meet the needs of the CFS person. It is essential for the physician to understand the specific stage of the condition his patient is in, because the treatment must coincide with the stage or it may have an adverse effect on the patient. It is this fact that makes many physicians so reticent to treat CFS patients. There is no such thing as a standard treatment that will fit all CFS patients or even the same CFS patient at a different stage in their glandular progress. Chronic Fatigue Syndrome is not treated very successfully by those who are not willing to
devote most of their healing efforts to the care of these neglected souls.
What is the Treatment CFS Patients Need to Get Well?
Our basic treatment for CFS is three fold. First, we must do whatever is necessary to minimize the stress in the life of the CFS patient. Toward this end, the physician must always remember that stress is often not so much what happens to an individual but how they perceive that happening. Stresses can be physical, mental or emotional. Usually, physical stress is the least
harmful and emotional the worst. In a severe advanced condition, the patient may even find it difficult to do the most essential daily tasks. The simple task of brushing one's teeth may create sufficient stress to force a CFS patient to rest for hours. In the most severe cases, the patient may become totally bedridden. The obvious goal of a wise physician is to control a CFS patient's stress level early on so that they do not reach these levels of
severity.
Second, we search carefully for and correct any concomitant medical
conditions that may be acting as unseen stresses on our patient. The CFS condition produces immune system weakness that opens the door for opportunistic organisms and adverse conditions to ravish the body. These must be tracked down and eliminated before full recovery is to be expected.
Third, the glandular system needs to be supported by passive and by active treatments to help the body regenerate both the immune and the glandular systems. This is the most important and, yet, the most difficult part of the entire therapy. This must meet the stage of the patient.
Passive Treatments use those special modalities that require no effort on the part of the patient or their body to benefit. The Magnatherm is a prime example of this type of therapy. It helps organs to regenerate with no reaction needed on their part. In late stage patients, this is often the only form of therapy that can be tolerated during the beginning of their treatment.
Active Treatments are those therapies that require the body or the patient to "react" to the therapy. The problem with so many CFS patients is that their body's ability to react has been deeply compromised by the condition to such a degree that such active treatments may actually place a greater stress on these patients than these therapies correct. It is up to the knowledgable
physician to carefully guage just how much active treatment, and which treatments, his patients can properly utilize at any one time. This is the true art of treating CFS and it is not to be easily or quickly learned. At our Healing Research Centers we have been doing this for nearly forty years and still find it often difficult to calculate, ahead of time, the degree of active treatment any specific patient will be able to use to their
advantage.
How Long Will the Treatment Take?
By now, it should be obvious that the time needed to successfully treat a CFS patient depends entirely on the stage of the patient's condition. In the early stages, we can often have the patient productive in a few weeks. In the truly severe cases (what I like to call chronic CFS) it may take several months to a year or more for the recovery desired. The recovery time also greatly depends on our ability to have access to the patient. If we are able
to bring the patient into our Sanctuary, where we have complete control over most of their stress quotient, we can usually have them on their feet in the shortest possible time. If we have to work so that we only get to see the patient occasionally and have no real control over their life stresses, obviously the needed improvements will be much slower in manifesting.
You were given this monograph because you will be interacting with someone who has CFS or one of its many related conditions. We trust that this exploration and explanation of these really very nice and dependable people will aid you in your future relationship. When working with CFS persons, please remember that they do not react the same as you do to similar situations. When their adrenal gland has reached the end of its vitality, the CFS person will wilt like a balloon stuck with a pin and their vitality will not return until they are able to take time to rest thus allowing for the needed regeneration of their adrenal gland. Your understanding and compassion, at times like this, will be greatly appreciated by all CFS persons.
There is much more I could write about the "care and feeding" of these very special friends of mine, but I must not let this effort get so long that you will not have the time to read it carefully. However, if you have further questions on some phase of our treatment or on the nature of a specific CFS
person, feel free to call me at 1-800-779-3796 or 1-800-300-5168.
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