Chronic Fatigue Syndrome (ME/CFS)

One million adults and adolescents suffer from what is known as Chronic Fatigue Syndrome (CFS) in the U.S. (otherwise known as Myalgic Encephalomyelitis (ME) in the U.K). But everyone can get really tired, right? How do you know if you have it and what is it, exactly? For starters, the fatigue you would experience with ME/CFS (as I refer to the illness), is simply crushing. You are unable to perform any (or most all of) your normal everyday activities. This would include being able to take a shower or even brush your teeth. Your body has lost all of its energy. You feel like “Gumby”, that animated green, clay, “humanoid” character from that long-ago television show. However, the fatigue or exhaustion (whatever one decides best describes their agony); comes with a host of other physical symptoms that happen along with this fatigue. Painful swollen glands and a sore throat may come along for the ride, or you may get lucky and they bypass you, only to suffer severe headaches and muscle aches instead. Or perhaps you are one of those that is affected by digestion problems and will suffer diarrhea. Either way, your fatigue will not go away just by simply resting. Oh no, not so lucky. Rest alone does not relieve the fatigue. In fact, excessive exertion of any kind, whether physical (exercise) or mental (paying the bills), will actually make your exhaustion worse. If you love to exercise and think you need to just get out there and run it off, be careful. If you have ME/CFS, your symptoms will only worsen.

Have I painted a gloomy picture? Not even close yet.

ME/CFS destroys your immune system. People with documented ME/CFS have a myriad of objective laboratory markers that doctors who specialize in the illness use to make a clinical diagnosis. This is where your next question is ever impatient. What Causes it? Well, no one knows. “They”, the scientists, researchers and the best of the doctors who care enough to stay with these patients, are getting closer to figuring that out. Maybe. Currently, the latest research is that a retrovirus, unlinked to that of AIDS, but similar in action, could be the cause. It’s called “XMRV”. It’s actually related to the retrovirus found in men with prostate cancer. Most (but not all), patients have the following (active or latent) abnormalities in their blood: Epstein Bar Virus; Human Herpes Virus – 6 (HHV-6); HHV-6A; 37kDa Rnase-L factor (enzyme deficient); enteroviruses in the gastrointestinal system (that cause polio and coxsackie illnesses), among others. Your “helper” T-cells (your immune system) are very low and you may have a very low white blood cell count (wbc) (therein goes your virus and bacteria “eating” protections cells); your overall IgG immunity panel is most probably also severely low. Feel vulnerable yet? Without an effective immune system, you are now prone to bacterial infections more than viral. This is because the viral system of the person with ME/CFS is so up-regulated. While you may not catch the common cold, you may get Parvo B-19 (a common childhood illness); mycoplasma pneumonia; or chlamydia pneumonia and the like. Worse, your heart will become infected and you will suffer myocarditis.

I take you back to the beginning. How do I know if I have ME/CFS and if I do, how is it treated? Great question. ME/CFS is still of “unknown origin and there is no known cure”. So basically, the physicians who best treat this illness, should specialize in it. You will probably come down with either mononucleosis or a terrible flu-like illness and you will not recover from it. You will remain so ill that you go to the doctor and start complaining symptom by symptom. Hopefully, if you do have ME/CFS, you will have read this, so that when the doctor says to you, “there’s nothing wrong with you, it’s just a virus”, or “you just need to relax, here’s the name of a shrink”, you can educate your doctor on this illness and hopefully, your doctor will do some further testing and questioning with you. Treatments work a lot better if you are diagnosed timely. Anti-virals; clinical trials; vitamin drips; prescription and non-prescription medicines; massage therapy; eating a lot of fruit and vegetables; drinking a lot of water; pace your activities, including an exercise plan; among many other modalities. Although there are treatments for this illness, they are symptomatic. Until such time that a complete cause is named, a complete treatment plan (cure) will never be in effect. This illness can last from a few months to a few years to a lifetime.

Most important of all in the healing process, of any illness, is to maintain a positive outlook on your health. Keep your thoughts positive and yourself happy. If you are not spiritual, I would recommend you take some quiet time within to find what gives you solace. Build upon that. You may find it grow into something even bigger and grander. If you are spiritual, you have a leg up. Get more so. The sky is the limit, as they say. It’s for the taking. Go for the sun, reach up high.

This article that I have written is not intended for anyone to become concerned that they may have this illness. Remember, it’s not about being “just a little tired”, and it’s not about being depressed either.

There are several websites for further information about the symptoms and causes and treatments for ME/CFS, but a good start is CFIDS.ORG. Knowledge is powerful. Always.

If you need me, I’m here. Feel free to write in. Sending you lots of love and light.

Comments

  1. Caterina says:

    Thank you for your article. I have had ME for ten agonising years after contracting a tropical illness in Thailand (they thought it was malaria then they thought it was dengue fever) and my life has never been the same since. I wake in agony everyday. I still operate at 20% of my pre Thailand, pre ME capacity. The myriad of health problems it gives me is enough to make your head spin, hypoglycemia, severe allergies leading to anaphyatlc shocks, no defense against constant colds and flus, aches and pains, fibromyalgia, extreme cold sensitivity, migraines, digestion and bowel problems, hormonal problems and the list goes on. Today I have been in bed for ten hours as I overdid it five days ago and pushed myself all day and still haven’t recovered. I live with constant agony. I have contemplated suicide many times as I find it hard to live with such pain and such an illness that they still don’t understand. Thank you for raising awareness about this horrible disease. I just pray that they find a cure soon and I pray that people will stop the cruel and ignorant dismissals of people suffering with this disease. When people say to me, “oh that, you’re just tired, yeah I’m tired maybe I have it” when I am lying in bed with the worst tremors ever from trying to do grocery shopping and almost collapsing at the shops it just makes it all the more harder.

    • Patricia Campbell36 says:

      Sorry to hear this, Caterina. I empathise with you and have had the same sort of journey. Don’t give up! Life is still there for you…don’t fight it. Take care :)

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