FINDING A VOICE
By Kathy Collett
From Summer 2012 Forum
Recently a man I went to school with asked me if I had to lie down during the day. I said "yes" and I could feel the scorn in his voice because he did, too, even though he isn't sick. I then added "I have 40 of the 50 symptoms on the checklist and Dr. Marc Loveless said CFS is worse than AIDS except for the last two weeks." He remained silent and I felt I had successfully convinced him whereas, previously, I had struggled for a response to combat the issue; there really is no come back to this response. For those who are interested, the checklist* is in the book, "A Disease of A Thousand Names" by Dr. David Bell.
It made me think that the struggle for recognition from the medical fraternity and the public has been immense. There have been many injustices served and one that has had appalling ramifications and left a legacy of ignorance and despair is the actions of McEvedy and Beard who reviewed the patient files from the Royal Free Hospital, UK.
The outbreak occurred in 1955 affecting 292 members of staff at the hospital who remained ill for years afterwards and, in the 1970s, McEvedy and Beard requested the files of the patients with the illness. When Dr. Melvin Ramsay was approached to hand over the files, he was warned by a colleague that he may regret the very day he did so. Never were truer words spoken because they read the reports after he gave them to them and they came to the conclusion that the outbreak was due to mass hysteria and so the mental tag stuck for decades. Added to this injustice was the re-naming of the illness by the CDC from Mylagic Encephomyelitis to Chronic Fatique Syndrome which trivialises the condition.
I can remember, as a child, my mother telling me that my first GP in the country town I lived in that doctors should deal with patients in person and this has forever stuck in my mind. In my case, I found the endocrinologist I saw treated my illness as mental because he read my negative medical reports and didn't listen to me despite my protests. The rheumatologist didn't even tell me to my face that he didn't believe the illness existed. l feel my medical history is like a hollow tower of ignorance as far as this illness is concerned, that is until I saw Dr. Jay A Goldstein** in California.
We are left without any option but to continue to fight for acceptance despite the horrific situation we find ourselves in. This seems to be becoming easier when dealing with doctors from my experience but not so with the general public. Whilst now we can present abnormal tests such as autoimmune and brain SPECT scans, there are no clear abnormal signs on the outside to see.
I also feel that patients are keen to distance themselves from the Chronic Fatigue Syndrome label and this is understandable. By making the distinction between ME and CFS, some feel that they have ME as it follows a sudden onset and CFS is as a result of a slow onset and they don't want to be lumped in the second category because of the name. Personally, I feel they are the same condition because they have the same outcome and it is only the introduction of the name that has people wanting to avoid it.
*A checklist is offered in all our newsletters that combine Dr. Bell's with lists from Drs. Cheney, Goldstein, Komaroff and Peterson.
**Dr. Goldstein was the NCF's first medical advisor.
[Ed. Note: Kathy is from Australia and has been a member of the NCF since1997.]
The National CFIDS Foundation * 103 Aletha Rd, Needham Ma 02492 *(781) 449-3535 Fax (781) 449-8606