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By Kathy Collett

From Winter 2017-8 Forum

I often wondered how ill I had to be before I got noticed or taken seriously as I visited various specialists’ consulting rooms. Although I thought I fitted their area of expertise, they didn't think so and were quick to dismiss me, sending me away with a psychosomatic label. I would slink back to my GP who incidentally believed me only to get presented with another one of those reports and wondered why it was happening.

I felt my illness involved their areas of medicine — Neurology, Rheumatology, Endocrinology and Immunology — and knew there was something seriously physically wrong with me. The first Immunologist was more concerned I was 36 and childless.

On two occasions while at public health talks, I approached first an Endocrinologist and spoke about the hypothalamus in relation to my illness. Little did I know it was the best way to get him to disappear when he said "I am an Endocrinologist" as if to say it has got nothing to do with him and he took off leaving me standing there. The hypothalamus does involve the endocrine system and that's why I approached him. Then, on another occasion, I sought out a high profile local Professor of Neurology and when I spoke to him he quickly escaped too. Clearly they didn't know anything about my condition and were too embarrassed to talk to me. The first Neurologist I was referred to actually verbally abused me because I had Repetitive Strain Injury (described as an overlapping syndrome of ME/CFIDS by Dr. Jay Goldstein, the first Medical Director of The National Forum whom I saw in Califonia). The Neurologist screamed at me, "I don't want to know about it". Since then and many years down the track, I often read his bad reviews on and feel sorry for the patients he has mistreated for years and continues to do so. He has a job where he is referred patients by the insurance company and gets paid to discredit them and wraps it up as mental conditions ignoring their physical problems in order to get further referrals from the insurance company.

I did meet another Professor of Neurology and he knew the illness had an organic basis yet the three Immunologists I saw didn't order any tests which would have proven I had an auto immune illness. However, one did request antigen testing. My former GP ordered an auto immune test because he thought I had cancer and that is how I found out it is an auto immune illness; I didn't have cancer after all. This GP told me the way the make medical findings in research is by making mistakes.

I got so used to their attitudes and being treated badly that when it was discovered, by chance, that I had heart problems, I was surprised when the Cardiologists treated me with respect. “So this is what it is like,” I thought. I had no idea and thought it was the norm to be treated in such a dismissive way where their ignorance and arrogance ruled. It took me a long time to get used to the respectful attitudes of the Cardiologists.

Just recently I saw a Gastroenterologist and made a special appointment to hand over the anesthetic information Prof. Hokama stipulated for us which was supported by the National CFIDS Association on their website and newsletters and, much to my surprise, it was of interest to him and he wanted the published paper! The wrong anesthetic can cause death if used on ME/CFIDS patients. He said that he would inform the Anesthetist. I decided to speak up and told him I wasn't believed for a long time and he was stunned. Then I began to sprout off some of the research and he accepted it without a challenge. The Anesthetist was very interested and rang me the night before, having looked on the internet (the fact that he did more research surprised me) and he told me he had worked out which combinations to use. I told him of the physical research findings and that I had done 30 years research and he listened. He was on the phone for about 20 minutes all after a day's work — it was 7:40p.m.). Then, when I went to the hospital, I noticed how they thoroughly checked everything I had written on the file re history, allergies etc. They were so thorough and read everything which was the complete opposite of how I had been treated in years gone by.

It has been a journey of denial, no acceptance and lack of interest on behalf of the local medical profession as I traversed my way through this medical maze over three decades in search of help and acceptance. I used to wonder how ill do I have to be to get noticed. I hope we can now see changes and some more will take interest in the illness.

Ed. Note: Although Kathy is from Australia, the same attitude is found worldwide as few physicians know much about CFIDS/AE to this day and no medical school, to our knowledge, includes it in their curriculum.

The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 *(781) 449-3535 Fax (781) 449-8606