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What is Myalgic Encephalomyelitis?

By Garry Crystal
Updated Feb 05, 2024
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Myalgic encephalomyelitis (ME) is a debilitating disease that effects a huge amount of people across the world. Although it is a very common disease, it has only recently been recognized as a serious medical condition. The symptoms of myalgic encephalomyelitis can vary greatly from sufferer to sufferer.

Myalgic encephalomyelitis is known by a variety of names. It is known as chronic fatigue and immune dysfunction syndrome in the United States. The disease affects people aged 20 and older, and the causes of the disease are not known.

Myalgic encephalomyelitis often occurs after an ordinary viral infection such as flu or chicken pox. It can also appear after simple viral infections such as sore throats or joint pains, and even after a common cold. In other people, especially older people, myalgic encephalomyelitis may simply occur over a period of months without any underlying original viral infection.

As its name suggestss, myalgic encephalomyelitis is a disease that effects the muscles and the head. Symptoms can include severe fatigue, muscle spasms, depression and muscle pain. The sufferer may often sleep much more than he normally would, but it is not a refreshing sleep. The sufferer will still feel tired after sleeping for prolonged periods. The tiredness that the sufferer feels will often leave her completely drained of any energy. Sufferers have been know to be bedridden for days, weeks and even months.

Myalgic encephalomyelitis sufferers sometimes appear completely normal, with no symptoms. They can go about their daily life and exercise as non-sufferers would. What is not seen is the day after effect. It has been described as the muscles running out of energy, and the ability to function stops altogether. This is when complete bed rest is necessary.

These are not the only symptoms of myalgic encephalomyelitis. Sufferers often have memory problems and forget what they have just been told. They may also suffer from digestive problems, shivering, fever and unrelenting pain. Each sufferer will have his or her own set of symptoms, and this is why the disease is very hard to diagnose.

There has been much controversy over myalgic encephalomyelitis. Because it is very hard to diagnose, many people treat the disease with skepticism. It is left up to the doctor to decide whether the sufferer actually has the disease or not. In the 1980s, it was brought to the public's attention by the media under the name of Yuppie Flu. Many people still regard it as a catchall term for just feeling tired and lethargic, but it is a serious, medically recognized disease.

Doctors can administer drugs to combat the symptoms of myalgic encephalomyelitis, but there is very little traditional medicine can do to help sufferers. Self-help and sticking to certain known regimes seem to be of the greatest help. The disease can last any length of time, from a few months to decades. It is a relapse and remit disease, and periods of feeling well and illness can vary greatly from person to person.

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Discussion Comments
By anon946011 — On Apr 16, 2014

Myalgic Encephalomyelitis would not be as difficult to diagnose if the Department of Health and the C.D.C. (Centers for Disease Control) would allow the experts' diagnostic and research criteria to be accepted as the official criteria (see CCC, Canadian Consensus Criteria and/or I.C.C., International Consensus Criteria M.E.) instead of the loosely woven list on the CDC's wall. The CDC's criteria is a broad umbrella definition that has allowed other diseases to fall into the mix.

The "experts" are several researchers and physicians who have long term and extensive experience treating and or researching the disease, M.E.

I am not a doctor. I am a patient.

The CDC wall also contains advice and information that is clearly wrong regarding M.E. M.E. is not a psychological or psychosomatic illness. It is physical. Exercise makes M.E. worse. Rest, from the onset, will give you the best chance for recovery if you have M.E.

If you are sick, go to a doctor. If one doctor cannot help you, then keep going to doctors until you find a doctor or doctors who can and will take care of you properly.

By anon324751 — On Mar 12, 2013

In the western world, ME has been around for hundreds of years. The first noted epidemic in current awareness was in 1934 in the USA. Since then, through the mid 1980's, an epidemic in the western world popped up just under an average of once a year, with progressively more in the 70's and with all hell breaking loose in 1984, starting in Incline Village, Nevada and thereafter in spots throughout the USA and beyond. Canada and Great Britain have been hit particularly hard.

By anon324696 — On Mar 12, 2013

There are a lot of ME patients who have been bedridden for years.

By anon324695 — On Mar 12, 2013

ME patients have been found not to be depressed, except for occasional, mild, short-term depression because of their situation. They are too danged sick to have time for depression. Seriously, depression is not part of the symptomology. Doctors who treat ME find depression isn't a major factor, merely sometimes a minor one and it's reactive, not causal. --Joy

By anon324694 — On Mar 12, 2013

ME was first recognized in the U.S. in 1934. It was given its name in the 60's and was entered into the World Health Organization's (WHO)registry.

By anon324693 — On Mar 12, 2013

This is the person who has ME and her PC has a virus. Sorry I’m slow. Children do get ME. Look up Dr. David Bell in Lyndenville N.Y., where a great percentage of the children there got ME. Older people do not just fade away into the disease. Generally, it’s the same as other adults. I guess those of us afflicted by the great epidemics of the 1980s are now old and many of you were children or not yet born then. Which is good; you have a whole big life ahead of you. And, if you get this awful disease, eat well and stay in bed until you’re well, really well. Overexertion makes it worse. If you “rest” it out in the beginning, you get your one big shot at recovering, it seems.

There is a lot of crap out there about ME, partially, well, mostly, as a result of the Centers for Disease Control trying to minimize ME and later putting out (more) false info that we all just had bad childhoods, etc., all the while forcing the medical establishment to refer to it as CFS. This made most doctors not believe there was any disease except laziness and craziness You would not believe the crap that was posted by the CDC on its website. You can’t imagine how many doctors told me I wasn’t sick even though I was diagnosed by a respected specialist. (I forgot the word. Forgetting words is one symptom). The missing word is a doctor who treats diseases. One disease doctor took my off-the-charts CD8 cell measures (more words missing) and dismissed me. When your CD8 & CD4 cells are messed up, that’s top of the line serious. Just a sample of how all of us with ME have been treated.

And, just a note: with ME, the major symptoms are pretty much the same in all ME patient. (The outlier symptoms may be different) The problem was that the CDC mixed heterogeneous populations in its case definition so it’s going to be a while before the pieces fall into place and the right symptoms are tucked in with the right diseases. Check out the International Consensus Criteria for ME.

Many wise physicians and researchers ignored the CDC as much as possible by only including those pretty certain to have ME and not something else in their research. There’s a lot of good research out there on ME, but it’s been hidden in the confusion. There’s a lot of crap, too, so beware.

Things are changing. Patients bombarded the CDC, along with doctors. Reeves of the CDC died and we are now moving slowly ahead. The best book to read about this sad tale is “Osler’s Web,” by Hillary Johnson. It is the best piece of investigative journalism since Woodward and Bernestein on Watergate. Of course, that’s only the first decade, but we need to be reminded on occasion about what those with unfettered power will do. It’s not just the wars.

One last thing, for now. There are a lot of people diagnosed with CFS who don’t or may not have ME. They need to get a real diagnosis to rule out cancer, heart disease and all other diseases. If the doctor balks, patients should tell him/her that there’s no such thing as CFS. That should ring true. Patients have been hearing that since the CDC first invented it.

Hope this is more clarifying than confusing. --Joy

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