MYALGIC ENCEPHALOMYELITIS
(In Canada & United Kingdom)-
or(ME)for those of us who just about sprain a brain cell trying
to remember that let alone SAY it out loud!!
CHRONIC FATIGUE IMMUNE DYSFUNCTION
(CFIDS)- [My preference at
this time because it mentions the immune dysfunctions which
cause us so
much additional suffering, not JUST the incredible fatigue]
CHRONIC FATIGUE SYNDROME
(CFS)- Most commonly used term,
possibly because its easy to remember and FATIGUE is one of the
most disabling aspects of this illness.
FIBROMYALGIA
(FM)- It is not yet agreed on whether this is
a separate disorder or part of the Many disorders of immune
function suffered by victims of CFS/CFIDS/ME etc etc etc....
(When the doctors finally make up their minds about this, I'll
post it here Forthwith and Immediately even.)
FLORENCE NIGHTINGALE SYNDROME
(FNS) - This term was coined
in England, I believe, but has never really caught on(too bad,
I rather like This one).
The Florence Nightingale Research Foundation has done a lot
of good for us. It is believed that this famous nurse herself
suffered from this syndrome(disease?)& this is why the
International CFIDS/CFS/ME/ awareness day is celebrated on her
birthday, May 12.
M.E. Nightingale
THE NIGHTINGALE RESEARCH FOUNDATION
Myalgic Encephalomyelitis (Chronic Fatigue Syndrome) is a chronic viral illness that occurs
frequently in epidemics or after an apparently minor infection. This severe disease is characterized by:
· muscle failure with marked fatigue, pain or exhaustion in the exercised muscle
· inability to return to the normal state of mental and physical activity
· marked variability and fluctuation of symptoms.
· Major sleep disturbance
· Problems of dyslexia, memory loss, and severe malaise
M.E. is a non-HIV acquired immune-deficiency syndrome in which the central nervous system and the immune system is injured allowing for chronic viral infection and illness. Although some people recover, most individuals remain chronically ill or weakened. Others follow a relapsing course. Though M.E. patients can appear normal, their muscles and memory fail. Many are left in chronic pain. They have difficulty standing, reading and walking. They frequently lose or have to leave their work. Due to lack of adequate diagnostic technology or physicians' knowledge, patients are frequently misdiagnosed as psychiatric cases or malingerers. Treatment is inadequate and, at the moment, there are no known cures.
Please find below some of the other symptoms of M.E. We reassure you: you are not alone! It is estimated that there are approximately 100,000 (1985 figures ??) people in Canada suffering from M.E. The figure may be on the low side, as many have been misdiagnosed as psychiatric cases.
First of all, we must advise you that there really is not a specific blood test to diagnose M.E. but then neither is there for M.S. M.E. is diagnosed mainly through process of elimination of other diseases. As the average physicians is still not knowledgeable on M.E., it makes it very difficult for the patient to understand why the doctor does not know what to do. Some doctors will be honest enough to say so; while others will state that the person has psychiatric problems. However, one of the blood tests that can be given is for the polio family of viruses. In some M.E. patients, there are high readings in some of the polio family viruses. However to diagnose for M.E., a brain scan is required, i.e. SPECT or PET. It must be remembered that in the early stages of M.E. the brain scans may register normal, thereby confusing the doctors and the M.E.
Person even more. More research needs to be done in this are. At this point the doctor feels that there is nothing wrong with the person and may wash his hands of you.
There is now a new machine called the QEEG (Quantitative E.E.G. which is really a computerized EEG and accurately indicates the injury to the brain) but there are very few of those machines available in Canada at this time, although it is manufactured by QSI inc. Toronto, Ontario. This machine is widely used in the U.S.
Some of the symptoms of M.E.:
HEADACHES: A large number of M.E. patients suffer from headaches and migraines. They could be at the back of the head (near the nape) etc. Usually they get a little better once you start moving around a bit. This is a common symptom the medication seems to be ineffective for these headaches. However if you do wish to take a painkiller, use a Tylenol-type, NOT ASPIRIN.
VISUAL DISTURBANCES: There are many visual disturbances reported by M.E. patients. Sensitivity to light is extremely common, floating particles, blind spots, blurred vision etc. Many people have had to start wearing glasses even though they had good vision before. Others who already wore glasses had to increase the strength of their lenses.
PRESSURE BEHIND THE EYEBALLS is also very common. Again, nothing much can be done about this. Be sure not to strain your eyes during that time and relax as much as possible until the pain goes away .
DRY EYES is also a common occurrence.
SENSITIVITY TO HEAT AND COLD: The thymus gland is injured in M.E. thereby causing the sensitivity to heat and cold. The best thing to do is to dress in layers so that clothing can be added or removed as necessary.
Many people and doctors report a low temperature fever. In actual fact, even though the person feels hot, their temperature registers a couple of degrees below normal.
In some cases, the thyroid also acts up, causing more confusion and uncomfortable symptoms.
Nightsweats are a very common occurrence and people awaken wet or in the alternative, absolutely freezing, even though they are covered up. Be careful not to remove too much clothing when you are perspiring to avoid getting a chill.
GLANDS: The glands in the neck and under the arms tend to swell from time to time. This is a very common occurrence.
THROAT: On many occasions people suffer from sore throats and feel that they have trouble swallowing as it feels as if something is stuck in their throat. This again is very common and it is important not to panic when this occurs. Stay calm.
DIGESTIVE ABNORMALITIES: Indigestion, gas, congestion, bowel irregularities such as constipation or diarrhea, nausea etc.. These are all very common symptoms and come and go.
M.E. people are very sensitive (rather than allergic) to some foods and all are sensitive to chemical additives, colorings etc. in food. Elimination of as many chemicals as possible often leads to immediate relief of some symptoms caused by these additives. As to which foods you are sensitive to, the best thing to do is to keep a diary for about two weeks. Note everything you eat and how you feel right after you have eaten. Pretty soon you will note a pattern. Many people avoid eating as they feel worse after a meal. Smaller meals are suggested for this reason, as well as the average M.E. person suffers from low blood sugar. Regular small meals give a better sugar balance.
This also means avoid fast-food restaurants as these meals are full of preservatives etc. as well as Chinese food re: soya sauce, MSG (Chinese food may be ordered without MSG if you ask).
Many M.E. people cannot tolerate milk and almost instant improvements are noted when milk is eliminated ( due to antibiotics in milk and lactose).
CHRONIC PAIN: Chronic pain is a very common occurrence, especially when you overdo it. Whatever muscles you use will hurt. DO NOT [OVER] EXERCISE as you may damage yourself permanently. If you try to [OVER] exercise, you will take a long time to recover, be in a lot of pain and certainly will not feel better in spite of the belief that exercise will make you feel better. Not only that, but as the central nervous system is injured, the nerve endings will repair themselves only if they are not damaged by [over] exercise and exertion.
CHEST PAIN is also common and has sent many M.E. patients to the emergency department as they think they are having a heart attack. Again, this is due to the fact that those particular muscles were used incorrectly and thereby bringing on spasms. This can be extremely painful and frightening.
PAIN IN THE LEGS, ARMS, toes, fingers, as well as cramps, muscle weakness, trouble standing, walking, etc. are all due to injury to the central nervous system. Some people are prescribed anti-inflammatory drugs but the problem with that is that the side effects are worse than the pain and does not really help in many cases. CAUTION: NON-STEROID ANTI-INFLAMMATORY DRUGS CAN CAUSE BLEEDING ULCERS, IF LEFT UNCHECKED.
BACK PAIN, upper or lower, is very common. Some people find relief through physiotherapy. Due to the chronic nature of this illness, it has to be kept up to do any good.
NUMBNESS: This is also a symptom experienced by many. If you are right-handed, the numbness is on the left-side in the arms, legs, face, etc. Pins and needles (parasthesias) are also very common.
HEART: Palpitations, rapid heartbeat, heart murmur, high blood pressure, low blood pressure, are all symptoms that force many patients to the cardiologist, only to be told that there is nothing wrong with them. Blood pressure pills do not seem to work in many cases as it is a labile blood pressure. [Many actually suffer from 'Postural Hypotension' (feeling of faintness upon standing up rapidly) which can only be determined by the 'tilt table'diagnostic test - please see section below for further details)]
BREATHING difficulties are also very common and the thing to remember is not to panic as it will make the symptoms worse.
PANIC ATTACKS, ETC: Anxiety attacks or panic attacks are also a very common experience
for many M.E. people. It usually happens if they are tired and are in a crowded location and there are too many stimuli: M.E. people cannot deal with too many stimuli at the same time. It causes them stress. Learn to go shopping when there are not too many people in the store, make sure you are rested and do not overdue it.
If you have started a panic attack, remember you cannot stop it but it will only last about twenty minutes. Do remember to breathe normally. Many people start to notice their breathing and get scared, thereby they hyperventilate. If this happens, concentrate on breathing normally into a small paper bag. (Some of us carry a bag with us at all times and it seems to give us confidence). Remember that the worst than can happen is that you faint and when you wake up, you will feel better and you will breathe normally again. [Personally, I would think it would be less stressful to find a quiet, private place (if possible use a washroom) and assume the anti-fainting position, head below the level of the heart and breathe slowly and deeply until the dizziness passes]
RASHES: Rashes in the face, in the neck, under the chin seem to appear and disappear; hives, etc. are very common.
PALENESS: Many M.E. persons are able to identify another M.E. person due to the paleness in their face. It is sort of a washed out look due to constant exhaustion, etc. and lots of forced sleeping or lack of sleep.
SLEEP DISORDERS: Sleep disturbances, bad dreams and other sleeping disorders are Very Common. Very few can boast of sleeping through a whole night without waking up. The only thing to be said about the dreams is that they sure are not boring.
Another problem is that when awakening, no one feels refreshed and in most cases do not feel as if they even slept due to the total exhaustion still present.
Some people cannot get up until around 10:00 AM or later before they find they can get going. Others find that their best time is first thing early in the morning. Whatever it is for you, take advantage of it. That is when you try to do what you absolutely Must do before whatever energy you have will disappear.
MENTAL ACTIVITY: Depression, mood changes, irritability, are all very common and fluctuate during the day. These symptoms upset both the M.E. person and the people they live with, causing many problems in the family.
M.E. causes depression, but added pressure is put on the person when doctors and people they know do not accept that they have a legitimate and debilitating disease. Once the disease has been diagnosed and the person understands what is going on, they find that they are more able to cope. It is important to remember that this is not clinical depression. A clinical depression responds very well to anti-depressants. M.E. patients are depressed because they are ill! They are not ill because they are depressed.
Spaced out feelings are also a problem that most M.E. patients face from time to time. A feeling of being "out-of-it" is common. Rest is important as the more stressed and tired you become, the more severe your symptoms become.
Transient short-term memory loss, aphasia (inability to form words), slurring of speech and becoming lost in mid-sentence is also very common.[cognitive dysfunction] This is most obvious when one is tired and only rest and sleep will help.
HEARING PROBLEMS: Sensitivity to noise, some sounds etc. are also very common. Noises is the ears, electric type sounds in the ear and other hearing abnormalities are also very common. These are a nuisance but do not cause any physical harm. Some people use a walkman with music they like when they are going through this particular phase.
ELECTRIC SHOCKS: Electric shocks through the body, making one jump or electric shocks through the ears are annoying but harmless. This is particularly noticeable when one is at rest.
I hope the above reassures you and makes you realize that you are not alone. We understand what you are going through, especially when you do not know what is wrong with you.
Theses symptoms can change a person's whole life. They go through a period of mourning, as if they had lost someone. It is very common to go through a period of denial, and a period of anger. These are all symptoms that one goes through when you experience a loss. It is important to accept that you have M.E. Once you have done that, you can go on with your life. Although it is changed, it is still very much worth living.
We have learned that families also experience similar stages of anger, loss and denial. They lose what you lost as well. They too go through the same denial, anger etc. and in the end they too have to accept the new you. This all takes time, but it is necessary if the family is to recover.
There is also a period of time when you may have a sense of guilt about yourself. You may feel that you have let your family down and that you are worthless. Your self-esteem really gets a beating at this stage. You must know and remember, you are a worthwhile human being who is just ill.
Your family may also go through this guilt stage once they find out that you are really sick. They may feel guilty for not having believed you. This is particularly rough. It might feel that your family has let you down, because you felt you could always count on them, no matter what. Your feelings of anger and resentment over their doubting you, will eventually be resolved when you realize it does not do anyone any good to continue to feel like that.
All of us have been brought up to believe that whatever the doctors tell us must be right. Remember that a lot of doctors do not believe in this illness, are unsure of how to treat it if they do and you may have to educate your doctor or find a better one who believes in M.E. and you!
M.E. is not a progressive disease. The nature of the symptoms can change and so can the intensity, but the symptoms tend to wax and wane. We do not have progressive nerve muscle degeneration as do some M.S. patents nor do we have progressive cognitive destruction as in Alzheimer's disease. It is important to remember that you cannot afford to exert yourself to the point of physical, mental, or emotional exhaustion at any time. If you do, you face major setbacks each and every time you do so.
Our members receive the most up to date information available on M.E. through our newsletter and literature. Dr. Byron Hyde, our Chairman is one of the world's leading experts on M.E
Please do not hesitate to contact us, if we can assist you in any way.
Yours very truly,
Lydia E. Neilson
Communications Director
THE NIGHTINGALE RESEARCH FOUNDATION and
National Director, THE NIGHTINGALE M.E.s.h. NETWORK
M.E.s.h. = Myalgic Encephalomyelitis self-help Network
FLORENCE NIGHTINGALE RESEARCH FOUNDATION
In 1984, Dr. Byron Hyde began the full-time study of the disease process then
known as Myalgic Encephalomyelitis.
In 1986, U.S. Physician Dr. Gary Holmes renamed the disease
process in the USA, Chronic Fatigue Syndrome.
In 1988, Dr. Hyde organized an association and founded The
Nightingale
Research Foundation, dedicated to the study of Myalgic
Encephalomyelitis/Chronic Fatigue Syndrome.
In 1990, the first world symposium on M.E./Chronic Fatigue
Syndrome was held in Cambridge University England, chaired by
Dr. Hyde and organized by The Nightingale Research Foundation.
The MANDATE
(a) To provide support to persons with M.E./Chronic
Fatigue Syndrome and related conditions;
(b) To represent people with M.E./Chronic Fatigue Syndrome
before all levels of government;
(c) To promote public and professional awareness of the disease;
(d) To promote, support and encourage research directly toward
the treatment, prevention and cure of the disease.
Since its inception, the Foundation has provided technical
assistance to physicians and given help and encouragement to
thousands of Canadians and Americans who have been stricken by
M.E./Chronic Fatigue Syndrome.
As part of the mandate they have provided accurate knowledge of
M.E./CFS to health care professionals, teachers' federations,
labour unions, governments and the courts.
In the Autumn of 1992, Nightingale published the first
comprehensive and authoritative textbook on M.E./CFS.
The Nightingale Foundation has continued to grow and presently
has approximately 6,000 members. At last count, our MEsh
Network (ME Self Help) developed by Lydia Neilson,provides
information and assistance to over 750 support groups in Canada
and the United States.
{I'm a member of the ME Society
of Edmonton (Alberta,Canada)Phone 403-944-0809}
This powerful network (MEsh) consists of both independent and
Nightingale incorporated affiliates. To provide better service
to the growing number of members and support groups in the
United States, a parallel and independent Nightingale Research
Foundation was incorporated and charitable Status received in
1992 in the USA.
AVAILABLE PAMPHLETS:
1) "The Nightingale" vol. 1.7 fall 92. A Physician's Guide to
Myalgic Encephalomyelitis - Chronic Fatigue Syndrome (M.E./CFS)
This is a 32 pagePhysician's guide in glossy pamphlet format.
It is an excellent overview of M.E./CFS. It can be used by
either the patient - for their information - or to give to your
Physician
2) The Clinical and Scientific Basis of Myalgic
Encephalomyelitis / Chronic Fatigue Syndrome ISBN no.
0-9695662-0-4 Library of Congress Catalogue
number 92-064489
ADDRESSES:
In the USA: The Nightingale Research Foundation Box 310, 602
State Street,
Ogdensburg, New York, USA 12669
In Canada: The Nightingale Research Foundation - 383 Danforth
Avenue, Ottawa, Ont. Canada K2A 0E1 - Telephone: Human Contact
(613) 728-9643 FAX ..........(613) 729-0825
In my opinion, this is one of THE MOST informative sites
on CFS/ME on the net;And home site of a very Special Lady.
DO VISIT - YOU'LL BE GLAD YOU DID
HINT: As a sufferer of any chronic illness,CFS included,
this is one of the nicest things you can do for yourself
PLEASE CHECK OUT THESE SITES FOR FURTHER INFORMATION ON
CHRONIC FATIGUE IMMUNE DYSFUNCTION,etc:
Eye Opening Guide to Chronic Fatigue Syndrome
SITE LINKS
CFS Humor
To CFS Medical
To Nutritional Supplements
Email: Barb or Fred
(just remove the " - " before sending)
