Chronic Fatigue Immune Dysfunction Syndrome -The Misunderstood Nightmare

More than four million Americans have Chronic Fatigue Immune Dysfunction Syndrome. Women contract CFIDS three times more than men.  Specialists say that CFIDS (also known as Chronic Fatigue Syndrome, CFIDS, or CFS) has no known cure and no real treatment. Many physicians are unwilling to take on patients with CFIDS because of the low recovery rate and the untreatable incapacitating symptoms. An expert at John’s Hopkins reveals that scores of doctors are unwilling to take on patients with CFIDS because he says that doing so is “such a downer.” 1

CFIDS is known by its sufferers as a walking death. According to the CFIDS Association of America, patients have a high risk of committing suicide and many of those with the disease have committed suicide. CFIDS is a chronic illness that affects much of the body, its functions, as well as the brain itself. 2

Unfortunately, by emphasizing the words “chronic fatigue” experts have given the disease a name that permits the general population to assume that CFIDS only causes tiredness. This is far from the reality. It is a highly complicated illness with a multitude of physical manifestations. Any sufferer of CFIDS knows that the symptoms don’t stop with fatigue, nor is it just a matter of being tired. The person with CFIDS can, and most often does, develop a debilitating exhaustion that causes them to become bed ridden, sometimes for days or weeks at a time. They feel lethargic in every fiber of their body and even the mind feels extreme fatigue. One woman with CFIDS told me that she used to have to crawl from her bed to the toilet on her hands and knees in order to relieve herself. Over a period of months, I spent three days at a time in bed with unbearable weakness.

The CFIDS Association of America characterizes the disease with the inclusion of the following criteria:

  • Incapacitating fatigue (experienced as profound exhaustion and extremely poor stamina)
  • Concentration problems and short-term memory loss
  • Flu-like symptoms such as pain in the joints and muscles, un-refreshing sleep, tender lymph nodes, sore throat, and headache.

These ailments are only a small portion of what a person with CFIDS goes through. The symptoms and the fatigue affect one’s social life, psychological state, physical activities, employment and/or schooling. Herpes, Shingles, and Chicken Pox are common in people with CFIDS, and doctors report that patients frequently have Mitral Valve Prolapse. MVP is a heart valve malfunction.

The majority of sufferers have varying symptoms that are usually not witnessed or noticed by others. Therefore, people frequently consider the person with CFIDS as “faking it,” or may feel their friend with CFIDS is perfectly healthy but just “a little down.”

Many people with the disease will only go out in public on good days, while being bed-ridden or too sick to leave their home on bad days. A large amount of sufferers are so ill they can no longer work. Others stop attending social functions and cease activities they used to enjoy. People with CFIDS can look just fine on the outside, and try to show a positive attitude in public, but in that moment, they may be suffering from multiple uncomfortable symptoms simultaneously. This was a decade-long routine for me. After the first two years of having CFIDS, I trained myself how to bear with the pain in order to get through a few errands or attend a social function. People with CFIDS learn to suffer in silence in order to go on with life, but their quality of living can feel like hell.

Symptoms Associated with CFIDS:

  • Word-finding difficulties
  • Inability to comprehend/retain what is read
  • Impaired speech and/or reasoning
  • Visual disturbances
  • Psychological problems (depression, irritability, anxiety, panic attacks, mood swings)
  • Chills and night sweats
  • Shortness of breath
  • Substantial decrease in the ability to exercise
  • Dizziness or balance problems
  • Alcohol intolerance
  • Irregular heartbeat
  • Irritable bowels (diarrhea, constipation, intestinal gas)
  • Numbness, tingling, or burning sensations in the face or extremities
  • Dryness of the mouth or eyes (sicca syndrome)
  • Menstrual problems
  • Chest pains
  • Rashes
  • Ringing in the ears (tinnitus)
  • Sensitivity to noise/sound, odors, chemicals or medications
  • Feeling of having a virus
  • Light-headedness
  • Feeling in a fog
  • Fainting
  • Muscle twitching
  • Pathological (abnormal) or urgent hunger
  • Sore throats
  • Tender cervical or axillary lymph nodes
  • Unusual headaches
  • Un-refreshing sleep
  • Post-exertion malaise
  • Depression
  • Abdominal pain
  • Unusual or frequent cravings for sugar and breads
  • Strong sensitivity to tobacco smoke
  • Irritability
  • Excessive anger
  • Loss of sex drive
  • Hypoglycemic symptoms
  • Excessive heartburn
  • Insomnia
  • Vertigo
  • Urinary frequency or burning while urinating
  • Tightness in chest
  • Mucus in stools or black stools
  • Vaginal burning, itching or discharge
  • Neurological problems
  • Seeing spots before eyes
  • Tachycardia (rapid heart rate) with minimal or no exertion, which may persist for long periods of the day, coming on at any moment and with no known cause.
  • Frequent mood swings
  • Caffeine intolerance  3

These symptoms indicate that it can be extremely difficult to diagnose CFIDS. The disease is often only identified after extensive tests, countless doctor visits, and after much time and money is consumed. Spanning fourteen years, with the exception of fainting, I suffered from every one of the symptoms listed above. During the years that I was most sick with CFIDS, a typical day consisted of ten or twelve symptoms throughout various periods of the day. In one day, I experienced, rapid heart beat, inflamed lower lymph nodes, difficulty urinating, hemorrhoids, stomach aches, a headache, a tooth ache, dizziness, heart flutters, choking for no known reason, pain inside of my throat, and pathological hunger. I spent years shoveling food in my mouth in a desperate attempt to fill a hunger that was actually an emotional void in the pit of my stomach.

The physical manifestations would alternate but the pain and suffering was always the same, and my sanity constantly challenged. Reaching a diagnosis of CFIDS is frightening, painful, and uncomfortable. I endured an MRI, invasive tests inside my ears, had catheters inserted in my urethra, EKGs, heart stress tests, blood tests, chest X-rays, ultrasounds on my bladder and heart, neurological exams, and testing with pharmaceutical drugs to see which medication might rid me of the suffering. On one occasion I went to an emergency room in the middle of the night with chest pains. There were countless nights when I lay awake in physical pain. The repeated exams, lab tests, and MRI amounted to more than $30,000 in medical bills. The entire experience was strenuous on my mind, body, and marriage. During the years when the disease was most brutal, my days were filled with seclusion and deep anguish. There were seemingly endless days when I could not function or even go to the grocery store.

My body had been a walking memory which was unable to speak for more than thirty years. The CFIDS was a substitute language. The voice from my past screamed at me in the form of incapacitating and frightening symptoms. The body memories from the incest were diagnosed as CFIDS because this is what medical professionals could establish with their knowledge and experience of disease. They did their job in the only way they knew how. It was a correct diagnosis, but the cause of the disease was my mind’s reaction to being sexually abused, threatened with death, and abandoned by my mother.

I am in no way saying that it is safe or healthy to assume that a physical ailment is psychosomatic. People need to use caution in dealing with their health. I sought out a multitude of medical experts, some of which were seen at the well-known Cedar Sinai Medical Center in Los Angeles California, and I saw two CFIDS experts, one at UCLA. No medical doctor could help me. Hypnoanalysis therapy, which revived the incest memories, was the only thing that provided relief and an eventual cure for my physical suffering.

I am not proclaiming that everyone with CFIDS was sexually abused as a child or has repressed memories of abuse, but it is important to note that CFIDS is three times more common in women than men. Child sexual abuse is three times more common in women than men. In the United States, most cases of CIFDS are diagnosed in females ages twenty-five to forty-five. The average age of those who recover memories of child sexual abuse is twenty to forty. This is not a coincidence.

Researchers say no cure for CFIDS exists, but my experience proves that there is a cure. Personal experience and common sense speak volumes. Other people with CFIDS could be burying repressed pain from a traumatic childhood. It would be astounding if I were the only person with CFIDS, who had Dissociative Amnesia for child sexual abuse, and whose CFIDS was induced by my mind’s reaction to the abuse.

The diagnosis of CFIDS does not necessarily indicate a person was sexually or physically abused as a child. At the same time, just because someone had a traumatic childhood or mental health issues, does not mean that a diagnosis of CFIDS is not related to their abuse or mental state. The mind causes illness in the body and the same form of therapy which helped me heal from CFIDS has also healed people with epilepsy, asthma, breast cancer, kidney stones, and numerous other diseases.

Many people who are suffering from CFIDS become angry with me for telling my story because they have been fighting to get the medical and insurance industry to recognize that CFIDS is a medical condition. I truly am sorry for what these people go through and wish only health and peace for them, but I cannot suppress myself and my story. I need to be truthful and put my experience out there so that someone might be helped. I know for a fact that there is a cure for CFIDS — a cure that –compared to medical bills, dangerous pharmaceutical drugs, and the cost of unhelpful therapies and vitamins- is inexpensive and safe.

It is painful to face one’s childhood anguish and –for some- trauma, but I would rather have gone through the process of dealing with and healing from incest, than to take the hell of CFIDS to my grave.

1. Physiology of Chronic Fatigue Begins to Take Shape, Judy Foreman, Los Angeles Times; Sep 19, 2005; F.3;

2. CFIDS Association of America, cfids.org

3. CFIDS Association of America, cfids.org

12 Responses to Chronic Fatigue Immune Dysfunction Syndrome -The Misunderstood Nightmare

  1. Chaya says:

    Obviously you were misdiagnosed. And anyway, CFIDS, CFS, FM, and FMS, are all waste-basket diagnoses. They mean nothing. The doctors simply have no idea what is wrong, so they throw all the symptoms in the wastebasket and say, “Here. Here is your diagnosis.”

    You know this, of course, which is why you have gone to such efforts to emphasize that not everyone with the diagnosis was sexually abused.

    • Alethea says:

      Chaya, based on this comment, and on the one about Grace on the other article, it is clear that you have a real problem with crossing mental and personal boundaries. For you to say I was “misdiagnosed” is pure ignorance.

      ~Alethea

  2. James M. Kelly says:

    Forgot to add – minor point to you to be over-looked though, I suppose :
    If CFIDS is most often caused by some form of/combination of physical/mental abuse as a child – well, then, MOST ALL THIRD WORLD PEOPLE WOULD HAVE THIS DISEASE. NO?
    J.M. KELLY

    • Alethea says:

      What makes you think 3rd world countries are any more abusive to their children than Americans and Europeans are? There is a helluva lot more love in many 3rd world countries than there is here in America.

      Cfids is often found in people who grew up in seemingly normal, functional families. There are countless psychological dynamics that can cause a person to develop cfids…many of which are not the kind of psychological dynamics found in families in 3rd world countries.

  3. James M. Kelly says:

    Ms. Alethea,
    I am flattered that you would both publish my response to your article and but “cherry-pick” at making some responses to what I stated.
    I am mortified that you would suggest that I would EVER ALLOW my organs to be passed on to others if they risked me infecting them with CFIDS! What kind of a monster do you think I am? Here again, you show your lack of knowledge and research in to what you publish. I mentioned “foot-in-mouth disease” of you in my first address to you. You are dead-set on channeling most all the misery of CFIDS development towards abuse of some nature. I doubt I was ever sexually abused by anyone as you suggest so very many women were who ended up with the disease. I’ll leave that alone as I have not researched it – me, being a man and all.
    What I WILL educate you upon is your absolute untruth of organs of those with CFIDS being “infected” and that I am but passing it along with my intended organ donations.
    My dear – this is ONE area of the disease I (unlike you) have thoroughly researched and this is what I have discovered collectively through it :
    1) I talked with a representative of UNOS (Know who they are? If you had done your research before you stuck your foot in your mouth you would!) and they said donations from those with CFIDS are NOT excluded – rather, they are welcomed.
    2) I talked with a representative with Donate Life (for) Virginia (DLV) before filling out and signing a form stating that I would be a transplant donor and that organization sustained what UNOS told me of CFIDS donors being fully eligible to donate.
    3) My own independant research on the internet (which you could also do) shows that those who receive organs from CFIDS donors develop CFIDS at a rate no higher (measured against the broad general population) than from those who suffer not from it and make donations.
    4) My own doctor has told me that he will, should that ever become the case for me (details not explained to him for obvious reasons) sign off on my organs being fit for transplant if visual and several other tests sustain his initial opinion. He knows of their functioning well at this point and he well knows of my CFIDS – probably wishes he didn’t.
    5) My lawyer has this all written up and notorized and all of the above is in my hospital’s, doctor’s and lawyer’s files.
    6) NIH has spent years researching this disease and does NOT rule out CFIDS patients from making organ donations.
    7) You never stop to consider that so very many people will die for NOT having an opportunity to get an organ anyway and they would rather take this “chance” you suggest against taking which does not exist of them getting the disease. But, YOU feel qualified to make this life-or-death medical decision for them? You seem not to understand that the vast majority of people needing life-saving organs simply wither on the vine, die, in need of an organ because donors are few in number compared to the number of those in need.
    8) How many cases can YOU document of ANYONE ever having passed that disease on to another in any manner – French kiss, sex, hug, hand-shake, dirty toilet seat? HOW MANY AND HOW, MADAME DOCTOR ? ? ?
    You see, my friend – what we have here is exactly what I excoriated you for the first time I wrote in response to you. You are simply stuck on stupid when it comes to making grandiose comments without supplemental documented, supporting facts.
    You say I will pass CFIDS on to others through organ donation? MY LORD! YOU NEED TO GET THE FACTS YOU KNOW OF THAT TO NIH AND CDC IMMEDIATELY AS WITH THAT STATEMENT AND SUPPORTING INFORMATION WHICH ONLY YOU HAVE, YOU HAVE JUST VASTLY NARROWED DOWN WHAT SUSTAINS CFIDS IN THE HUMAN BODY AND THE SCIENTIFIC COMMUNITY CAN BUILD ON THAT QUICKLY FOR DEVELOPING BOTH A CURE AND VACCINE! PRAISE THE LORD AND BURY THIS COMMENT UNDER THE RUG AS FAST AS YOU CAN!
    ANONYMOUS NO MORE – J.M.KELLY

    • Alethea says:

      James,

      You and I live in very different worlds. You live in a world of organ transplants, vaccines, drugs, organizations that thrive on surgeries, and horrific medical experiments on animals……all to “save lives” or to make the lives of human beings “better” to so-called “heal” them” or to keep them “safe.”

      I live in a world where the mind is capable of creating and healing disease and illness. Modern neuroscientists are now discovering the power of the subconscious mind and the Quantum Mind.

      I live in a world of holistic, natural, God-given healing powers and natural methods of having a fuller, healthier, longer life. When it is my time to pass to the other side, I do not wish to cling to my physical body to the point of wanting some other person’s organs inside me –some person that I do not know the consciousness of, what they have done to another human being in their life, or what kind of hatred and rage they carry in the cells of their body. THAT James, is what you will be giving to another person if you decide to donate your organs to someone else.

      Every emotion, thought, and experience we have ever had in our lifetime is encoded in our cells.

      I live in a world where I am working towards evolving to a higher level of consciousness, and you James, are sadly stuck in the physical world.

      I am sorry for your suffering. I am sorry that you want to die, or don’t care if you do. I have been there. The cfids made me want to die, or take my own life, many many times.

      I am sorry that you have been conditioned to think that medical procedures, drugs, surgeries, vaccines, and organ transplants are the only path to existence.

      Vaccines and pharmaceutical drugs are deadly, and there are other paths to healing disease and illness. Human beings needs to start with THE HUMAN MIND, and modern science is beginning to get that. One day, “modern” medicine is going to have to bow down to the Mind, because what they are doing, is not working.

      I wish you only goodness on your journey through life and death, but you will never find peace on the path you are currently taking.

      Alethea

      • Alethea says:

        James, I am curious: I am not trying to push you; I am asking for my research… why have you not asked for the phone number of the person who healed me of cfids? I have written about my suffering, how many symptoms I had, and how I too once wanted to die…but yet you have not asked for the information of the person who can heal you, and save your life…why?

  4. Anonymous says:

    Dear Whoever,
    I think you are very intelligent and the majority of your article, until the last 7 paragraphs (I believe), did a wonderful job of describing the hell we sufferers of CFIDS go through until the end of life which mostly comes via heart-attack, suicide or cancer – weighted in that order, those three being the high percentage endings.
    As a 19 year severe sufferer, age 66, I think I am choosing option 2 as in that manner I can make my well-documented organ donation to give life to others as my parting gift in life. Have researched it all out well as to CFIDS organs fine for donation, organs are good for well beyond the lifetime of an older person, all documented, certified with my doctor, lawyer and hospital.
    Married with two kids when struck like lightening at age 46 in prime of work career, I was smitten with much pain and punishment from people as well as from the disease. So, that’s me and it is just awful for almost past 10 million minutes – INCESSANT!
    One of 5 siblings who were physically and mentally abused by a closet maniac preacher all our childhood, I have NO recessed memories of any of this. All my siblings have discussed it all out among ourselves and extended family/friends ad nauseum.
    I am sorry but I believe you do a dis-service to all who suffer it and all who read your article to close your well-written piece with conclusions leaving out MANY necessary facts to back your opinions. I am sorry for your treatment as a child and your treatment at the hands of the disease but you have, in my opinion, well gone one river too far with this. I think that you would “like” to believe your conclusion.
    A small percentage (maybe10%) get well in either 3 or 5 years from onset and after that, it’s a life sentence. How long did you have it?
    It is very easy for you reach your poorly documented, lacking many more important facts, conclusion in the absence of the medical community not knowing anything of this disease.
    I have openly, always, confronted, discussed being treated terribly by parents and in military but I could not ever blame either/both of them for this disease. Vast majority, I believe, of sufferers simply do not fit your profile – but, article very good at first and I am happy to read any opinion of this devil even though I disagree with it.
    Still believe it? Then treat it as a research project and get a good sample of people interviewed and the facts and numbers documented. Otherwise, please be a little more careful with your conjectures.
    EVERYONE SUFFERS THROUGH LIFE – 1% gets CFIDS.
    J. M. K.

    • Alethea says:

      Dear anonymous,

      “…describing the hell we sufferers of CFIDS go through until the end of life which mostly comes via heart-attack, suicide or cancer – weighted in that order, those three being the high percentage endings…”

      First off, this just proves my point. Much of cancer and heart attacks are caused by unresolved emotional pain and deep-seated resentment towards people who have injured us emotionally, physically, or sexually. Suicide is common among cfids sufferers because many people cannot take the madness and the pain of the symptoms…but suicide is also common among those who have been sexually abused as children. This is no coincidence.

      I would ask you to please NOT donate your organs. That to me, is no gift. If you want to give a gift, give it to yourself and experiment with what I have experienced. Do your research about quantum science and the healing powers of the mind. Do your research about the powers of the subconscious mind, and IT’S ABILITY TO HEAL. Read about Louise Hay, who healed herself of vaginal cancer because she healed her resentment for her childhood rapist. Do the therapy that I have had, and see what happens with your health, but please DO NOT donate diseased organs to someone. Your organs carry the cfids disease, and or a virus in them, and they carry your consciousness, which is not a healthy one. You think you would be giving life to someone by giving them your organs, but you might be presenting them with a death sentence of another kind.

      I never said ALL cfids is from repressed childhood abuse. But if you experienced physical and mental abuse all of your childhood, then you have repressed emotions that are lodged in your subconscious mind, and they not only can and will affect your health, but most likely are the cause of your illness.

      You do a dis-service to yourself by not seeking out help in the form that I have offered. If I were still suffering from that hell, and someone told me there is a cure, I would be making a phone call right now! You have instead chosen to give yourself a death sentence of cancer, suicide, or a heart-attack, and a life sentence of suffering. Your consciousness (or rather, lack of) is continuing your illness.

      “A small percentage (maybe10%) get well in either 3 or 5 years from onset and after that, it’s a life sentence. How long did you have it?”

      Well then, because I have defied the seemingly insurmountable odds, maybe it is you who is wrong. Maybe it is the medical field who is wrong…because the medical field believes in drugs and surgery and makes billions of dollars off their belief system. (in answer to your question, I was sick for about 16 years with cfids)

      “I have openly, always, confronted, discussed being treated terribly by parents and in military but I could not ever blame either/both of them for this disease.”

      It is not about blame. It is about the law of cause and effect, action/reaction. This law exists and there is no escaping it. If a person is abused, betrayed, unloved, physically assaulted, and emotionally wounded as a child……their body will react to that abuse as they get older. This is a scientific fact.

      Call my therapist and try the therapy. What have you got to lose? I mean, since you already suffer and think you are doomed to suffer and die terribly…why not take a chance?

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