This is ME

[NorahSethsMommy]

 This is kind of a lot to read, but I thought it was time I shared some information about this disease I have elluded to a few times in my journals posts.

My disease is called Myalgic Encephalopathy or ME. In the past it was also been known as Chronic Fatigue Syndrome (CFS), Chronis Fatigue Immune Dysfunction Syndrome (CFIDS) and Post Viral Syndrome (PVS).

No one knows exactly what causes it....it is thought that a bout with mono years ago may have casued it. Mono seems to be the thing most sufferers have in common. Nearly all of us are Epstein-Barr Virus carriers (as am I).

ME is an auto-immune disease that is somewhat similar to MS. I was misdiagnosed with several illnesses and disorders over the years until an angel of a doctor finally knew what it was and ordered the necessary blood work despite the fact that my insurance refused to pay for it.

My level of illness fluctuates. I am high functioning now, but have, in the past, been nearly bedridden. I have tried various drug and therapies and am soon to have a surgery. I will write more about that another time. Treatment strategies are improving all the time, but nothing has been perfected as of yet.

Below is some basic info about this illness. Feel free to ask me any questions, if you have any.

It should be explained that there are a number of different names for what is an illness of uncertain cause affecting many thousands of people. Currently it is estimated that some 250,000 people in Britain are affected by this illness.

• Myalgic Encephalopathy or "ME" (a term which The ME Association feels is more appropriate than the original, Myalgic Encephalomyelitis)
• Chronic Fatigue Syndrome or "CFS"
• Post-Viral Fatigue Syndrome or "PVFS"
• Chronic Fatigue Immune Dysfunction Syndrome or "CFIDS"

All types of people at all ages are affected. Severe and debilitating fatigue, painful muscles and joints, disordered sleep, gastric disturbances, poor memory and concentration are commonplace. In many cases, onset is linked to a viral infection. Other triggers may include an operation or an accident, although some people experience a slow, insidious onset.

Effects

In some the effects may be minimal but in a large number, lives are changed drastically: in the young, schooling and higher education can be severely disrupted; in the working population, employment becomes impossible for many. For all, social life and family life become restricted and in some cases severely strained. People may be housebound or confined to bed for months or years.

Most people with ME/CFS fall into one of four groups:

• Those who manage to return to completely normal health, even though this may take a considerable period of time. The percentage falling into this category is fairly small.
• The majority, who tend to follow a fluctuating pattern with both good and bad periods of health. Relapses or exacerbations are often precipitated by infections, operations, temperature extremes or stressful events.
• A significant minority, who remain severely affected and may require a great deal of practical and social support.
• A few, who show continued deterioration, which is unusual in ME/CFS. When this occurs, a detailed medical assessment is advisable to rule out other possible diagnoses.

Several research studies looking at prognosis in ME/CFS have now been published (Bombardier and Buchwald 1995; Hinds et al 1993; Sharpe et al 1992; Vercoulen et al 1996; Wilson et al 1994). Results from these studies indicate that ME/CFS often becomes a chronic and very disabling illness with complete recovery only occurring in a small minority of cases. The high level of debility and disability associated with ME/CFS often stems from a combination of symptoms such as fatigue, pain, sleep disturbance, cognitive impairment, and, in some cases, an associated depression.

Studies which have examined functional status and quality of life measures (Buchwald et al 1996; Komaroff et al 1996; Schweitzer et al 1995) also confirm that the scale of impairment across a range of physical and mental activities can be just as great or greater than is seen in many other chronic medical conditions.

(taken from ME/CFS/PVFS An exploration of the key clinical issues, prepared for health professionals and The ME Association members by Dr Charles Shepherd MB BS, and Dr Abhijit Chaudhuri DM MD MRCP, Clinical Lecturer in Neurology, Consultant Neurologist, National ME Centre, Harold Wood Hospital, Romford. Essex. RM3 OAR).

Controversy

 

ME/CFS has attracted more than its fair share of controversy. Initially, and for many years, there was a debate as to whether it was actually an illness at all. Although the situation is still not perfect, many influential bodies, (The World Health Organisation, the Department of Social Security, the Department of Health, the Royal Colleges of Physicians, Psychiatrists and General Practitioners amongst them) are now in agreement that it is real.

Two major questions now occupy the minds of the people involved - these questions are: "What is it?" and "What is to be done about it?"

While there is a degree of consensus on the different things which can trigger ME/CFS, what then causes it to become chronic has become a topic of hot debate. Loosely, views are split into two schools of thought: one which favours 'psychiatric' or 'behavioural' reasons and the other (supported by The ME Association) which argues 'physical' reasons.There is also an argument which proposes that no such distinction should be made. What also seems possible is that the illness currently defined as 'Chronic Fatigue Syndrome' is actually a number of different conditions, all characterised by similar symptoms. (A 'syndrome' characterises an illness by its symptoms, not by the underlying disease process.)

The second point, 'What is to be done about it?' attracts equally heated debate. Until more information is known, there will remain a wide range of views on how people can be helped. Research into causes, treatment methods and cures continues. Treatment is often aimed at reducing symptoms and can encompass a range of 'mainstream' and 'complementary' methods, ranging through drugs, homoeopathy, behavioural therapies, acupuncture, diet changes and beyond.

[MusikMama]

Sep. 19, 2007 at 7:21 AM

WOw, sounds like a difficult disease to battle while taking care of 2 young children, chronic fatigue is just a side affect of motherhood!  LOL.

My good friends family suffers from a very little known deadly disease.  His aunt and mom have both passed, and his sister is VERY sick.  The males dont' get it, but they carry it.  His family, here  in GR, is being studied as they are one of only like 30 poeple to have it.  Doctors don't even know how to treat it, when they goto the hospital,they have to tell the doctor what to do, it's crazy, and sad.  It's called Porpheria.

[NorahSethsMommy]

Sep. 19, 2007 at 10:15 AM OMG. I did a study and term paper on Porpheria in college. Oddly, my boyfriend at the time's grandmother had died from it when she was in her 20's. She had a particularly rare strain of it (moreso than usual even) It was Congenitial Eryhtropoietic Porpheria. At the time, she had been one of only 3 cases in the US. There are more now I am sure. It is a horrible thing, but has a very interesting background in legend. Do you know about the outbreak of the disease in Romania hundreds of years ago? Supposedly it is a big part of what contributed to vampire legends...people were very thin and pale, couldn't handle sunlight at all, and the treatment at the time was to drink the blood of healthy people. It is such an awful thing to have to deal with. I never met anyone else who even knew what it was. I will surely keep them in my prayers.

(Original Poster)