To raise awareness and restore quality of life in persons with myalgic encephalomyelitis (pwME) .
There is no know cause for Myalgic Encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS).
ME causes dysregulation of the central nervous system (brain), energy metabolism system, and the immune system. The entire body is affected. Activity, even after minimal mental or physical exertion, makes a person with ME feel worse. A persons energy declines and debilitating fatigue reduces their every day living.
In the U.S. 1 million to 2.5 million people have Myalgic Encephalomyelitis. Worldwide, an estimated 17 - 30 million have ME.
80-90% of people with ME are not diagnosed. Therefore, they are receiving inappropriate advice or the wrong treatments.
There are only a handful of ME experts in the United States.
No two people experience ME (chronic fatigue syndrome) the same. Therefore, ME/CFS treatments differ for everyone. There’s also a wide spectrum of symptoms from mild to very severe. 25% of people with ME are so severe they are home and/or bed bound. The main symptoms of ME are:
Unrefreshed Sleep, is being so tired you feel depleted of strength or energy even after a night sleep. Unrefreshed sleep is light, poor quality sleep.
Post Exertional Malaise (PEM), which is extreme exhaustion after mild activity. It causes flu-like symptoms 24-48 hours after activity. PEM can also cause muscle weakness. This "crash" can last hours, days, weeks or months.
Cognitive Dysfunction, causes difficulty in thinking or talking. It includes challenges in finding words, processing new information, memory lapses and unable to multi-task,
Orthostatic Intolerance, or Dysautonomia, is the inability to stand for any length of time. Orthostatic intolerance (OI) causes the heart to beat fast, the blood pressure to drop and the person feels dizzy, or passes out. This makes it hard for people with ME to cook meals, take showers, attend school, or do activities that requires standing.
Children with OI are often misdiagnosed with school anxiety. They really are having a physical response to sitting upright in class. Their heart beats fast, they feel anxious and light headed. This is the body giving warning signals for them to lie down.
There are over 60 other symptoms of myalgic encephalomyelitis. The most common ones are debilitating pain, sleep dysfunction, sore throat, swollen lymph glands, hoarse voice, night sweats, and weight changes.
Getting an early diagnosis and early intervention is most important because it can minimize the effects of ME.
There is no cure for ME because we don't know what causes it.
Symptoms vary over time. It's best to identify what symptoms cause the most problems, and treat those first. Each person is different, so treatments might provide relief for some patients with ME but not others.
Medications: There also isn't any FDA approved treatments for ME. However, some people find that long-term antiviral therapy works for them. Others find that antivirals don't work. Some of the antivirals used to treat reactivated Epstein-Barr virus (EBV), human herpesvirus 6 (HHV-6), cytomegalovirus Virus, coxsackie virus are: Valtrex, Valcyte, Famvir and Acyclovir.
Prescription sleep medication can help you fall asleep and stay asleep.
For orthostatic intolerance, first try Banana Bag Drink. It is an electrolyte drink that has been formulated by a pharmacist and available without a prescription. Banana Bag Drink is an effective oral re-hydration solution that can reduce the need for IV therapy when treating dehydration, or low blood volume. Use the code PANDORA10BB to receive an additional 10% discount on a subscription. You can also request a free sample on their website to try before committing to a subscription.,
Midodrine may be used if your blood pressure becomes low when you stand. Florinef is another medication used for low blood pressure and low blood volume.
Sometimes beta blockers help symptoms of orthostatic intolerance because they increase ventricular filling of the heart. Antidepressants, known as SSRI's, may also be helpful with OI because they help the tone of the blood vessels.
Many patients take over-the-counter medications to help the Kreb Cycle, or energy cycle and the mitochondria. These include CoQ 10 or Ubiquinol, B complex, B1 (thiamin), B12, Alpha lipoic acid, L-carnitine, Creatine and D-Ribose.
Pacing: When ask what is the one thing you would want a person newly diagnosed with ME to know, the number one answer was pacing. Try to assess your energy level and don't over spend what's in your energy bank. Take plenty of breaks, and it's okay if you can't finish a task. This will help minimize PEM. Do not get into a "push - crash cycle."
Unfortunately, society has taught us that pushing through pain and difficulties builds character and helps in conditioning. But, pushing yourself through an activity will cause your symptoms to be much worse, a day or two later, if you have ME. It can take days, weeks or months to recover from over doing. Don't live up to other peoples expectations. Do what is right for you to live with this illness. Even though pacing seems easy, most people with ME find it very difficult to reign themselves in.
Heart Rate Monitor: Using a heart rate monitor gives you a qualitative way of staying with in your energy allotment. Since we have exercise intolerance, a good way to measure your energy is to stay within your anaerobic threshold (AT). When our bodies cannot get rid of lactic acid, nor use oxygen to make energy, it starts breaking down muscle to make energy. This switch over is called anaerobic metabolism. People with ME have very low AT and switch into anaerobic metabolism quickly with activity. Using a HR monitor helps you to stay within your threshold.
Use this formula to figure out your anaerobic threshold:
(220 - your age) * 0.6 = anaerobic threshold.
If you're 21 years old, your formula would like this:
220 - 21 = 199
199 x 0.6 = 119
Remember, this is an average. When the alarm on this 21 y/o HR monitor sounds at 119, they know to stop what they are doing and rest. If they were to stay above the AT for any length of time they will put themselves into PEM.
Read this blog post to find out more about wearing a heart rate monitor.
Compression Stockings: People with ME often have orthostatic intolerance. OI falls under the umbrella of dysautonomia. With ME, your HR can increase when you sit or stand up. This is because blood pools in your legs and has a harder time getting back to your heart and brain. This is what causes you to feel lightheaded, have low blood pressure and experience brain fog. Wearing compression stockings can help prevent venous pooling and increase venous return to the heart and brain. You can read more about compression stockings here.
Keep hydrated: Studies suggest that people with ME have low blood volume. Increasing salt and fluids may be recommended to help increase blood volume. These two simple measures are helpful to people who have blood pooling and low blood pressure.
Disclaimer: The information on this website is for informational purposes only. The purpose of this website is to promote broad consumer understanding and knowledge of myalgic encephalomyelitis. It is not intended to be a substitute for professional medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition or treatment and before undertaking a new health care regimen, and never disregard professional medical advice or delay in seeking it because of something you have read here. Pandora Org does not recommend or endorse any specific tests, physicians, products or procedures.