About CFS

About M.E. / C.F.S. / C.F.I.D.S.

Definitions:
ME - Myalgic Encephalomyelitis
CFIS - Chronic Fatigue Immune Deficiency (or Dysfunction) Syndrome
CFS - Chronic Fatigue Syndrome

What is CFS?

What is it not? Let's get rid of the negative connotations first. We have been so misunderstood by family, firends and the public. They have put labels on us. We do not have the "yuppie flu", the Epstein Bar Virus, MS or suffer from accumulated stress. Neither are we lazy, malingerers, lack "willpower", need more exercise, or just getting old. It is not menopause, an anxiety disorder, or a means of getting attention.

Need I say more? I am sure that you have heard most of these expressions and more.

We have not decided to take a holiday from work.

The CDC Case Definition
The CDC Case Definition is as follows:

It is not due to any other organic or psychiatric disorder, including, for example, cancer, bacterial infection, known rheumatologic disorder, or clinical depression, together with 8 of the following 11 symptoms.

Part A

Prolonged or recurring severely debilitating fatigue that cuts one's activity level to 50% or less of what is or was previously, lasting six months or more, and...

Part B

Not due to any other organic or psychiatric disorder, including, for example, cancer, bacterial infection, known rheumatologic disorder, or clinical depression, together with 8 of the following 11 symptoms:

1.   low-grade fever
2.   sore throat
3.   painful lymph nodes in the neck orunderarms
4.   muscle weakness
5.   muscle pain
6.   prolonged fatigue after exercise, headaches
8.   migratory joint pain (without swelling or redness)
9.   one or more of; light sensitivity, forgetfulness,
       irritability, confusion, difficulty thinking or
       concentrating, depression
10. sleep disturbances
11. abrupt onset of symptoms

or 6 of the above 11 symptoms and documentation of 2 of the 3 physical criteria below:

Courtesy of the Myalgic Encephalomyletis Association of Ontario

Symptoms from Other Reputable Sources

Recurring "flu-like" symptoms, gastro-intestinal problems, "pressure-like headaches", secondary depression and anxiety, muscle aching, twitching and weakness, dizziness, chronic pain, night sweats, nausea, and I am sure you experience many other symptoms.

CFS has many faces and wears many hats. I just wish that we didn't have to wear those faces or the horrible hats.

Possible Treatments for CFS

I am sorry to begin this section by writing that there is no known, definite cure for CFS. Treatment is very difficult for us. We have a unique myriad of symptoms, which must be treated individually.
CFS can affect every organ in your body.

CFS is diagnosed by thorough medical examination, to exclude other diseases which share the same symptoms. After 3 years of this I still can't tell the difference between a "CFS attack" or the flu. It often takes a day or two to differentiate between the two.

No one medication or treatment works for all of us. Our symptoms often wax or wane over time and our bodies have various drug sensitivities. Even if we find something that helps us to sleep, or eases the pain, it may prove ineffective after a period of time. A change in diet helps some patients. Some people develop food sensitivities.

Ask your doctor to recommend an allergist. I never dreamed that I had food sensitvities until I went to a wonderful allergist. Just staying off gluten has made a difference to IB.

Gentle stretching exercises, (only within your limits) is recommended by some doctors.

Early treatment to re-establish a normal sleep routine is important and rest is recommended to maintain energy.

Anti-depressants are often prescribed, not just for situational depression, but for sleep and joint pain.

**Try to keep a daily journal of your activities, symptoms, feelings, and doctor's appointments.

*It is also invaluable for Disability Claims.

Something relatively new and controversial is the Chiari Malformation. It is a rare defect in two back parts of the brain. This is being investigated as a possible cause of symptoms of CFS. Apparently these malformations are present at birth and symptoms can be triggered by head or neck trauma. Dr. Michael Rosner (University of Alabama) discovered this possible connection to CFS/FMS. Dr. Rosner has performed surgery and has had some success with CFS/FMS diagnosed people.

There are too many varied methods of treatment for this unpredictable illness to be listed here.

I wish I could tell you of a magic potion, but keep on investigating all possible avenues of treatment. Keep an open mind.

We Should be Proud

As Canadians we should be proud of one of our young people. This young woman has made the first positive discovery (that we know of) to show that our blood tests do show something abnormal.

On March 17th and 18th, The Myalgic Encephalomyelitis Association of Ontario assisted in a study done by Ms Dilnaz Panjwani.

Ms Panjwani, of Toronto, entered her Research in competition at the Intel International Science and Engineering Fair in Philadelphia, in the category of Medicine and Health, and won second prize. Ms Dilnaz deserves so much credit for this remarkable achievement, as there were 120 entries in her category from around the world.

She is trying to prove that the red blood cell metabolite 2,3-diphosphoglycerate (2,3-DPG) can be a possible diagnostic marker for CFS.

All the CFS/FMS patients had abnormal levels for the 2,3-diphosphogliycerate metabolite. This metabolic assists the release of oxygen molecules from the haemoglobin. Thus, a higher level may be indicative of hypoxia (lack of oxygen available to the tissues), resulting in fatigue.

Ms Panjwani is planning to have her research published in a Medical Journal.

Please Don’t Try This

A British woman says she has cured her CFS by resorting to do-it-yourself brain surgery and drilling a hole in her own head...performed the ancient technique of trepanning-cutting away a section of the scalp and drilling into the skull. British doctors refused to help her out, so she performed the 20 minute operation herself, using a local anaesthetic. "I feel generally wonderful" she told reporters.

This woman drilled two,two centimetre hole to allow blood to flow more easily around her brain. This procedure is called Trepanning and was widely used in the Middle Ages.
This is called DESPERATION!!!

(see quick-links for information on other sites)

And then there are those unscrupulous people selling their snake oil cures. More about that later.

Causes

Because CFS is such a complex, illness no one knows the definite cause or causes. It can strike suddenly, or creep up slowly.

Recent research has discounted the theory that the cause could be mononucleosis or the Epstein Barr Virus.

Some researchers believe CFS is not caused by a single factor. This concept is supported by the fact that stressors, physical or emotional, seem to make us sicker. Researchers are investigating connections, such as viruses, environmental toxins, neuroendocrine dysfunction, genetic predisposition, or a combination of these factors.

Other medical observers have noted that the illness is triggered by a physical or emotional trauma.
Again, still other researchers feel that our condition was latent before we got sick.

And still more researchers continue to investigate possible viral abnormality, resulting in immune dysfunction. These abnormalities are co-factors, such as stress, prior illness, genetic predisposition, gender, age, and environmental.

Remember, the results of any research so far, are not carved in stone.

Coping Skills

The first coping strategy is BE KIND TO YOURSELF!! Rest is essential. Physical, mental or emotional exhaustion are detrimental to your health.

Learn when to say no. Most of us want to keep commitments or make other people happy, but there are times when your body will tell you to say no. If you don’t say no, play the tape forward in your head. How will you feel after Jane’s visit, or Suzie’s party?

Don’t beat yourself up when you find yourself reading easy romance novels instead of Tolstoy.

Don’t be hard on yourself, or think you are stupid when you can’t understand a movie plot, or comprehend a text your doctor has recommended you read.

Learn to pace yourself and listen to your body. Get to know your body and it’s language

Estimate your daily activity level, and then attempt only half, or less, of that level.

Remember, depression is nothing to be ashamed of. This disease bestows a whole realm of emotions on us. Seek professional help. If the first therapist is not empathetic, go to another one. It is so important for you NOT to think like a victim.

Try keeping a Gratitude Journal. At the end of your day, whether it be 9:00 PM or 3:00 AM, try to write 3-5 little things for which you can be grateful. I feel gratitude when I’m bedbound and my dog and cat stay with me all day.

Do something for yourself each day. You don’t have to do your makeup, or blow dry your hair, but just a little something.

Recognize that you will experience mood swings and irritability. It doesn’t give you permission to scream at everyone (although sometimes you would like to), but recognize that this is part of your illness. Don’t you just hate having to apologize so often? Sometimes I find myself apologizing for being sick...go figure!

Join a Support Group, or form one. The women in my Support Group are like sisters to me. We laugh a lot. We discuss absolutely everything, and often call one another for a reality check, or just to share something, good or bad.

Try to keep your sense of humour. Yes, I am sane. I find that a sense of humour gets me through some pretty bad times.

I would be lying to you if I said I was always up. As I said in the introduction, I have tears, too.

I am sure when you visit other sites you will find many more coping skills.