FIRST PERSON: IN SEARCH OF A DIAGNOSIS
By Kathy Collett
From Fall 2010 Forum
It was the mid 1980s when I was struck down with an awful illness that wasn't recognised. It was not only necessary to get a second opinion but more like ten or more — I had lost count there were so many.
The symptoms of the condition are severe and wide ranging and left me feeling totally exhausted after minimal effort. This made it harder to understand why I wasn't taken seriously. Sometimes I found it difficult to attend the medical appointments and felt it would be easier for me to take a recording of my symptoms and play that instead of repeating my story over and over again — that in itself was tiring.
A neurologist reacted with hostility and felt my condition was pyschosomatic, while a rheumatologist didn't accept the illness existed. Another, an endocrinologist, who had previously seen a friend of mine with the same condition and believed her, changed his mind when I came armed with my negative medical reports (incidentally the illness involves all of these areas).
I realised at this point it was up to me to work my way through the medical maze and find answers for myself. I searched through the information available in Australia before looking at the UK and then the US where I noticed the work of Dr. Jay A. Goldstein who had a clinic dealing specifically with Chronic Fatique Syndrome/Myalgic Encephalomyelitis. Previously, he along with Dr. Ishmael Mena, had tested patients with brain spect scans and found that those with more severe conditions had a decreased blood flow to the brain. His book, "The Limbic Hympothesis: Chronic Fatique Syndromes" was recently published at this stage. It's where I found a treatment for RSI, and overlapping syndrome. I was unable to use my arms in a repetitive way without creating horrific pain after twenty minutes use. Finally. after nine years, I was able to use them pain-free with a heart treatment which was nitroglycerine patches.
At last, I could get off the medical merry-go-round. I had discovered a doctor who understood it and visited his surgery in 1994 and 1995 in California. I found Dr. Goldstein to be a real trailblazer, kind, extremely intelligent - in fact the most intelligent person I have ever met - and he didn't want his patients to suffer. By focusing on brain dysfunction and neuroscience he was able to explain the illness and introduce treatments. Much later, in 1999, this was validated when at a Belgium Conference a general consensus was reached declaring CFS/ME a brain dysfunction illness with a biochemical cause.
Just as I and others had been isolated and treated with disdain, so too had Dr Goldstein — he walked a lonely path. He was misunderstood and received more than his fair share of flak because they couldn't comprehend his research and treatments. However, later one researcher said "He has made the biggest contribution to CFS/ME research" and another said "He deserves a Nobel Prize".
Dr Goldstein went on to produce other books published by Haworth Medical press before his retirement and they are: "Betrayal by the Brain" and "Tuning the Brain: Principles and Practice of Neurosomatic Medicine".
Kathy is a longterm patient from Australia. Dr. Goldstein was the NCF's first medical director.
The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 *(781) 449-3535 Fax (781) 449-8606