Fibromyalgia and Me

Found here:

ME sufferer David Christie (15) has to spend 19 hours a day in bed. His mum, Antoinette, talks to Gráinne McCarry.

“As a young boy, David was involved in everything. He was a scout and he loved trampolining and horse riding. He would have played any sport and he was an Irish national champion in ju-jitzu in 2002. He was no different from any other wee boy. He was always outdoors and he never gave me any trouble. He got involved in everything that was going. He was such a thoughtful child — a wee gentleman.

His sickness began when he developed a rash in February 2003 at the age of 10. The dermatologist at the Royal Children’s Hospital in Belfast had never seen it before. He took photographs and a biopsy and diagnosed David with the skin condition pleva, which is caused by a viral infection. He was given cream for it and still attends the dermatologist to this day about it.

The following year, David began St Mary’s Grammar School. He was so alive and full of energy and he used to walk six miles every day to school and back. Then, all of a sudden he started to lose his energy and we had to give him a lift to the school gate because he wasn’t fit to walk it.

When his condition deteriorated, he didn’t have the energy to walk from the gates up the steep hill into school. We got a special pass from the principal to drive to the school gates. Then, it got to the stage where he couldn’t manage school at all.

After six and a half months of his first year there we had to take him out of school. He wasn’t fit to attend.

He was complaining of chest pains, nausea, fatigue and a general feeling of unwellness. For a long time, we didn’t know what was wrong with him. He was diagnosed with ME (Myalgic Encephalomyelitis) in October 2005.”

Read the rest

Found here:

When Shawn Burnette says, “Though chronic fatigue syndrome is not fatal …” (”Finding a way through the pain,” July 26), she alerts us to how crucial it is for us to distinguish between those who have been diagnosed with M.E. (myalgic encephalomyelitis), in which there is thought to be abnormal neurological pathology and inflammation of the spinal cord, and those who have been diagnosed with any one of a number of illnesses that have chronic fatigue as a principal symptom and fall under the umbrella term, chronic fatigue syndrome.

Read the rest

Found here:

Chronic Fatigue Syndrome (CFS), also known as ME (myalgic encephalomyelitis), Post Viral Fatigue Syndrome (PVFS), and Post Viral Syndrome (PVS), appears to be on the increase and still poses a problem to many physicians. Some people believe ME is due to a chronic infection from Epstein-Barr virus, but the triggers that spark off the disease are varied. In many cases it follows a viral infection, but vaccination or other hormonal and genetic influences may play a part.

Its wide range of symptoms makes ME difficult to diagnose except by the elimination of other possible diseases. The most common symptoms are chronic fatigue, recurrent sore throat and muscle aches, lymph node swelling, weakness, intestinal discomfort and digestive difficulties, headaches, loss of concentration, visual disturbances, and depression. Symptoms may go on for months or even years.

Read the rest

Found here:

For the people who read my personal blog: sorry about the double post, but I’m posting this here too because it’s CFS-related, and it might be useful to anyone with CFS who stumbles across this blog.

From Fatigued to Fantastic! is the name of a book I just finished reading. It’s written by Jacob Teitelbaum, who is a doctor who had CFS and recovered from it. Now, he’s the national (American) medical director of the Fibromyalgia and Fatigue Centres in the US.

If you read only one book about CFS, this should be it. It’s comprehensive, yet easy to read.

Read the rest

Found here:

Calling all physically fit carers, friends and relatives of ME patients. Your help is very urgently needed and may be of great assistance to the UK ME community.

Professor Basant Puri urgently needs 10 PHYSICALLY FIT individuals between the ages of 18 to 55 to contact him concerning participation in his current ME/CFS biomedical brain studies on ME/CFS patients.

Read the rest

Found here:

The results of every study which purports to show the benefits of CBT, examined in isolation or in concert with others, leave serious question marks over their design, validity and reliability. Yet CBT remains the favoured choice, and not only for depression and anxiety; there doesn’t seem to be a condition it is not claimed to help. People with myalgic encephalomyelitis (ME) sometimes, erroneously, said to be synonymous with chronic fatigue syndrome, do not routinely have depression but they’re levered into CBT anyway

Read the rest

Read the rest

Found here:

Researchers at Tufts University, Boston, and the University of Illinois at Chicago are issuing a national call for ME/CFS (chronic fatigue syndrome) patients in the U.S. to participate at no cost to them in a study to identify genetic risk factors that may be associated with the illness.

The study is designed to allow remote, home-based patient participation, allowing the broadest sample possible – with a target of 400 individuals, ages 13 to 64, with a documented physician’s diagnosis of either ME/CFS (‘chronic fatigue syndrome’) or mononucleosis.

Read the rest