Posted by TENA/DIAMOND on 3/3/2009, 6:02 pm, in reply to "What is ME/CFS? #1"
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: What is ME/CFS? #2
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: Causes #2
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Since so much about ME/CFS is unknown, the causes of the condition are even more a mystery. Currently there are a few competing ideas, with interactions among these factors under evaluation:
Infection: ME/CFS bears some remarkable similarities to other infections, especially mononucleosis. Testing people for Epstein-Barr (EBV), herpesvirus, enterovirus, mycobacterium, rubella, retrovirus, Candida (yeast) have all proved inconclusive. Many sufferers of ME/CFS can relate a story of having an infection or flu-like illness before becoming ill with ME/CFS, but this is not necessarily true with all sufferers.
Immune System: Some researchers believe that ME/CFS is an autoimmune disease similar to lupus, but this has also proven inconclusive. The immune system is affected in many people with ME/CFS as a decrease in immune function; and a propensity to allergic symptoms is also very common among sufferers.
Hormonal Imbalance: The most common hormonal problem in ME/CFS sufferers is disruption of the hypothalamic-pituitary-adrenal axis. This hormonal system is responsible for the fight or flight response, typically experienced as anxiety and nervousness. Physical or emotional stressors can cause a dysregulation of this hormonal system, which can lead to further stress and anxiety, a sort of vicious cycle. Constant stress and anxiety can also reduce the immune system function.
Hypotension: Many people with ME/CFS have hypotension (low blood pressure). Scientists are puzzled by this low blood pressure and suggest that it may be the result of problems with the nervous system. Hypotension leads to fatigue and tiredness.
Nutritional Deficiency: Many people with ME/CFS have nutritional deficiencies, but it is difficult to determine if this is the cause or a result of the disease. Typically, ME/CFS sufferers are low in B-vitamins, magnesium, vitamin D, and many other nutrients.
Mitochondrial Dysfunction: Recent research suggests some factor interfering with the highly complex mechanism of energy production at the cellular level.
Central Sensitivity: It is suggested that symptoms of ME/CFS and often-overlapping conditions such as fibromyalgia are manifestations of central nervous system sensitization – “an exaggerated response of the central nervous system [spinal cord and brain] to stimuli.
Predisposing Genetic Factors: As suggested by the ongoing gene-expression research, differences in symptoms experienced and severity may correspond with a number of genomic ME/CFS subtypes.
More than likely, the cause of ME/CFS is the result of a combination of factors, where one factor can affect the other. For example, stress can reduce the effectiveness of the immune system. With a lowered immune system, infection is more likely, and having a chronic infection can lead to more stress. There are many systems in the body that interrelate in similar ways.
Treatment
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Treatment of ME/CFS is as varied as the condition, is usually tailored to the patient, and tends to focus on sleep, pain relief, and fatigue. Typical medical treatment would include:
Sleep aids
Pain medications
Antidepressants
Antivirals and/or antibacterials
Anti-inflammatories, including steroids
Injections of B-vitamins and magnesium.
Along with the above medications, lifestyle factors are often suggested such as mild exercise or conditioning (within a scrupulously observed “envelope” to avoid post-exertional malaise), stretching, or yoga, along with avoiding caffeine, drugs, and alcohol. Learning to cope with illness is an important part of any treatment. Adjusting expectations to new abilities, preventing overexertion, reducing stress, changing diet and nutritional supplementation should all be considered.
(See Treatment Modalities for more detail.)
Choosing a Doctor
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If you have a primary care physician with whom you’ve established a good rapport, discuss your concerns regarding ME/CFS. Chances are she has other patients with the same illness, but if not, provide her with information you’ve found helpful. She may or may not remain the gatekeeper in your care, but she should be able to help you find a physician who is familiar with ME/CFS and able to help you.
While there are a few doctors who specialize in ME/CFS, there is not a specific medical specialty that covers it. If your doctor is not able to recommend someone, your best resource for finding a doctor who is knowledgeable about ME/CFS in your area is probably a local support group. (Check ProHealth’s Support Group Listing to find a group near you. ProHealth's ME/CFS Message Board is also a good place to ask if anyone knows of a good doctor in your area.
Talking with family and friends may shed some light on your search as well. Hearing of a physician with compassion, one who spends time with patients and listens, goes far when making a decision. Overall, you want to find a physician who is committed to learning as much as she can about the condition so she can provide you with the best possible care.
Do a little research on the doctors you are considering. First, check with your insurance carrier to find out which health care providers are covered by your plan. If there aren’t any suitable doctors in your plan, inquire about out-of-network coverage and charges. Next, check out the doctor’s medical credentials and whether there have been any malpractice suits or disciplinary actions against her. Below are just a few resources to help you begin your research:
The American Medical Association’s Doctor Finder includes physician profiling information such as medical school, training and specialty.
The American Board of Medical Specialties will tell you if your doctor is board certified and in what specialties. “Board certified” means the doctor has completed two additional years of training and passed a national examination. “Board eligible” means the training, but not the test, has been completed.
Contact your state’s Board of Medical Examiners to find out about any history of malpractice suits.
Find out how other patients feel about a doctor you are considering. There are several Web sites, such as RateMDs.com, where patients rate their doctors. This particular site covers doctors and dentists in the US, Canada, the UK, Australia, New Zealand and India.
As with any chronic illness, navigating your way within the medical world will require you to be your own advocate. This means being proactive about your care, staying informed, and being organized about your needs during each appointment. This is not an easy road, and balancing the medical, insurance and care aspects of your health is going to require clarity and work on your part.
Related Conditions
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Fibromyalgia and ME/CFS share many symptoms in common and may very well be related, but distinct entities. People with ME/CFS also frequently have other comorbid conditions such as depression, anxiety, panic attacks, insomnia, irritable bowel syndrome, headaches, allergies and more.
TENA/DIAMOND
People come into your life for a reason, a season or a lifetime.
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