ME/Chronic Fatigue Syndrome -Let's hear the truth (ME/Chronic Fatigue Syndrome)

Member Name: Machair1

Product:	ME/Chronic Fatigue Syndrome
Date:	13/11/08 (164 review reads)
Rating:

Advantages: None

Disadvantages: A Disease which is ruining lives expecially in our young people.

Myalgic Encephalomyelitis

This review is about what it is like to live with M.E or as it is often called Chronic Fatigue Syndrome. Other labels are Post Viral Fatigue Syndrome and in the U.S it is called CFIDS.

I am writing this to help to raise awareness of the condition and hopefully to dispel a few myths.

It is my account in brief and my story, but the way it has changed my life is typical of those who are moderately affected.

Firstly it is not just about being tired; if it was then a good night in bed would help. Fatigue is not the hallmark of the condition but it plays a part. Neither is it about being depressed although this may occur as part of just having a long term illness.

I caught a viral infection from the Enteroviral group of viruses which are related to Polio in 1996. These viruses are thought to play a part in the development of M.E since they have become more prevalent following the eradication of Polio through vaccinations. This infection was also experienced by several others in my road and so it was a small cluster. The virus which was primarily like a gastric flu attacked the lining of my heart causing Pericarditis which landed me up in casualty.

Sadly this was the start of my illness and the story begins after discharge from hospital.

Things were odd. I had palpitations, sweating, a raised pulse, low body temperature, muscle twitches, loss of memory and the nights were forever because I couldn't sleep. I had difficulty sitting or standing for any length of time as it made my heart race. I had irritable bowel syndrome, and pain in joints in my shoulders, elbows, knees, and hips. I couldn't walk far and any exercise made me so much worse.

After many hospital tests I was diagnosed with M.E or Post Viral Syndrome and this has been with me for the last 12 years.

For most people the symptoms they have fit into categories and they can wax and wane. However they are all made worse by overexertion physically and to a lesser though not insignificant part mental overwork

The Symptoms

These may include:

Overwhelming and Persistent Fatigue

This is always there but as the initial attack subsides and you get into some form of remission there is a delay to the symptoms, so doing too much exercise is going to cause an increase in fatigue and other symptoms 24 to 36 hours later. This delayed reaction is typical of the condition.

Sore throats and flu like symptoms

I had these a lot at the beginning and I always know when I am going into a relapse because I get a very sore throat and my legs ache like I have the flu.

Pain

This is one of the worst symptoms and it can manifest itself as aching in the muscles and joints, pins and needles, or muscle twitching. I had this a lot at the beginning and my muscles would contract all by themselves.

Sleep

This is horrid. You either crash out for hours on end and wake up in a pool of sweat shattered and exhausted or you can't sleep at all. I often have horrific nightmares from which I wake drenched in sweat with my heart racing.

Mental problems

When I first became ill I realized I had forgotten most of the words in the dictionary. This wasn't apparent at first because I was so ill I couldn't read- even the TV looked blurred and words would just move up and down on the page.
After 4 years I decided I wouldn't be able to return to nursing so I got a job as a Teaching Assistant in a school for a few months. I suddenly noticed I needed a dictionary to spell basic words. This has come back now but it has been a long road. I have had to work from home now as keeping a job which involves set times and routines is too exhausting.

Digestive problems

These have been for me one of my worst symptoms. I have had dreadful irritable bowel and in relapses bland food with no roughage is all I can tolerate. Severely affected people often have to be hospitalized and tube fed, it can get very serious.

Autonomic nervous symptoms

For me these have been the worst. My temperature is always low and I can't tolerate extremes of heat at all. The illness causes dreadful night sweats and palpitations, and I have bouts of severe vertigo where the room spins.

Latest research is showing that a virus may well have damaged the autonomic nervous system. Most patients including myself have great difficulty standing or sitting for any length of time as it causes the pulse to rise and serious changes in blood pressure called Orthostatic Intolerance. This is worse if you get hot so I have to be really careful to drink a lot in hot weather and to stay in the shade.

Finally there is nearly always intolerance to alcohol. Most people with M.E can either drink nothing or tiny amounts because it makes them very ill indeed.

On a day to day basis I have difficulty holding my hands above my head so hanging out washing is exhausting. I don't wear jewellery as it is too heavy. I can only have one sensory input at once so I can't have the TV on while eating or try to read if someone has music playing. So with all this you may be thinking M.E is more than just being tired and you would be right.

The tragedy is that many of the sufferers are not middle aged mums like me but teenagers and young adults with all their lives before them. I was 36 when I was diagnosed and by this stage I had given birth to 4 wonderful children. It was kind to me in that my career and family had gone the way I wanted it to- just not able to continue with the same career as before.

What I would like to do is to list a few websites and books which have helped me more than anything. I have three shelves of books collected over 12 years but some are more useful than others. If I find any more in due course I will update this article.

My top 7

1. "Better Recovery From Viral Illnesses" by Darrel Ho Yen
This book is the best one out there. Older copies are available from libraries but there is no point is getting anything older than the 4th edition as the advice has changed in the book. Earlier editions focused on the conservation of physical energy but later research showed mental energy was also playing a part so get hold of the 4th edition. He has just produced a 5th edition which you may be able to order from the library or direct.
www.dodonabooks.co.uk
The 5th edition is expensive I believe it is £28 so try the library.
Ho Yen is a microbiologist and an expert in viral illnesses and has had great success in stabilizing many M.E patients.

2 "The Disease of a Thousand Names". By David Bell
Again out of print but good from libraries and secondhand bookshops like Abe this is a superb guide to the disease.
www.abebooks.co.uk

3 Also by David Bell "Faces of CFS"- this is a great book you can either buy it secondhand or you can download it free from his website at;
www.davidsbell.com

Again David is an expert in CFS having been the GP in Lyndonville New York during an outbreak they had there and this book is dedicated to the case histories of these patients.

4 "Encephalomyelitis and Post Viral Fatigue States" by Melvin Ramsay, again this is out of print but you can get it in libraries or secondhand.

5 "Chronic fatigue" by Erica Verrillo and Lauren Gellman a -superb book. This should be available to order secondhand.

6 "Living with Me" by Charles Shepherd. This is the one you find most in the shops.

7 The Clinical and Scientific Basis of Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (Edited by Byron Hyde, M.D. - Nightingale Research Foundation, Ottawa, Canada).If you visit the website www.nightingale.ca which is the home of the Canadian ME Research Foundation and click on contact them. They will send details as to how this book can be obtained more cheaply in the UK. It is the best book I have found and it
contains papers and articles from all the world experts. Proceeds from this book go to help young people with M.E. It is a very thick heavy book and you can also request it by special order from the library.
Websites I recommend are

1. Action for M.E www.afme.org.uk

2. Tymes Trust www.tymestrust.org -this is a wonderful charity especially set up by an M.E sufferer herself to help children- it is superb.

3.Hummingbird -www.ahummingbirdsguide.com- this website is the most amazing one I have found set up by Jodi Bassett who is a 31 year old Australian sufferer who is severely affected. She has many videos on You Tube but the most informative one to understand the symptoms can be seen at
uk.youtube.com/watch?v=QCdcAGAHlvg

4. Foggy Friends
www.foggyfriends.org
If you have M.E and are feeling lonely and isolated you can contact others in the same boat and this is a wonderful forum set up by 2 dedicated suffers.

Living with this disease is hard, the symptoms are life altering, but the level of misconceptions in the community are putting intolerable pressures on sufferers. These misconceptions were primarily put out by the media who named the condition "Yuppie Flu" or "Malingers Excuse." Although the latest research is changing this in the medical world it is still difficult to change the attitudes of so many who were influenced by these descriptions.
It is recognized by the World Health Organization as a neurological condition
It is not curable but some may go into a form of remission.
Symptoms can be controlled or helped but many medications have side effects
The best treatment is rest and pacing.
It is estimated that there are up to 250,000 people with M.E. in the UK.
Most of them are isolated and misunderstood.
In the same way as Multiple Sclerosis was once called "Women's Hysteria" I hope that M.E will be able to lose the dreadful names associated with it.
The sufferers are alone and some end their lives each year through suicide.

I hope this has given help to those who are suffering and information to those who look on so that the illness will be recognized for what it is and for the damage it is doing to so many young lives.
Also published on Ciao under the user name Violet1278.

Summary: ME/Chronic Fatigue Syndrome Is A Neurological Illness.