April 10, 1956 – August 6, 2010
A beautiful person who suffered from M.E. for too many years.
Aylwin Catchpole suffered from M.E. (Myalgic encephalomyelitis) for over 21 years.
Most would agree this qualifies her as an ‘expert’ on this subject.
Prior to becoming ill in 1986, she pursued studies in Nursing and Psychology, before starting her family. She lived much of her life in Vancouver, Canada. She became an activist in Women’s Health issues, lobbying for legalized Midwifery and safer birth practices. She also became a Teaching Associate with the University Of British Columbia School Of Medicine, instructing medical students about the particular issues of women’s health care and physical examination techniques.
Suddenly, one day she became ill. Her children were 3 and 5 years old; she was a single parent. Naturally, she couldn’t just “go to bed” for the next two years, which was the only recommended treatment at the time. She did the only thing she could do: soldier on. She provided care for her kids, while working to figure out the mystery that had taken over her life.
It took her doctor 8 months to figure out that she did not simply have the flu. She was first diagnosed with “Chronic Epstein Barr Syndrome” (a common understanding of M.E. at the time). She eventually received a diagnosis of ME in 1990, years after the initial onset of the disease.
As Aylwin (pronounced: “all-win”) found the information about M.E. that she was searching for, she again took up the mantle of activist, developing a system of 37 support groups in her home province of British Columbia, Canada. She became the front-line phone contact person for desperate and confused members of the public who had fallen ill with the “Mystery Disease”. She developed and provided educational seminars for Public Health Nurses, Women’s Health Networks, and the public at large.
Helping others discover and understand this mysterious affliction was not new to her. She did it for twenty years.
She organized two medical symposia, bringing top international experts to B.C., to educate local doctors about M.E. She was interviewed on multiple occasions for both radio and TV; and appeared as the spokesperson for M.E. advocacy in newspaper and magazine articles. Additionally, she published her own writing on the subject.
Then, one fateful day, when her son was only ten, he too suddenly became ill with M.E.
He became bedridden overnight. Instantly, he lost two years of Math! After the intense frustration of consulting with multiple doctors – who didn’t understand what was wrong with him – she was able to get him to an ME specialist who diagnosed him. Armed with a doctor’s letter, she was able to withdraw him from school and allow him the total rest he needed.
Unlike her, he recovered in three years, by age 13. She attributes this to having provided him with appropriate care, care she herself had not received.
At that point, she decided to move away from city life. She realized that air pollution and other toxins were negatively impacting both mother and son’s possible recovery.
She was so ill that she was no longer able to care for her children. She had to send them to live with their father. They moved to a nearby rural island as well.
Aylwin then developed Anaphylactic (or life-threatening) allergies to almost all foods and many other substances. She could only eat only white rice and chicken…for 5 years. Moreover, she also developed Hyperthyroidism, which tricked her into thinking she was getting well…until she crashed from it within months.
For many now, as her health allowed, Aylwin sporadically published numerous articles about M.E. and other subjects, in both magazines and newspapers. She was a staff writer for four newspapers. Additionally, she became an Alternative Professional Advisor for ten years; educating people about Health, Creativity, Relationships, and other life issues.
Unfortunately, in 2008, she suffered what she called a “mega-relapse”, brought on, as it turns out, by toxic exposures and a fungal co-infection.
Again overnight, she lost the ability to read or write, drive or walk. She felt substantially “drunk” for about 18 months. She became totally housebound, needing a caregiver for any trips to the doctor or other necessary expeditions, shopping, and housework.
She took up the use of a wheelchair, cane, and knee braces for minimal mobility. She developed a “Nonspecific Inflammatory Arthritis” and a new ‘seizure-like activity’ she has named…” life in hell.”
However, on the plus side, with judicious application of alternative healing techniques, nutritional supplementation, and prescribed medications, she began to improve (again); although she remained largely housebound.
Without these improvements in her cognitive status, she would never have been able to write this article. She began to research M.E. with renewed determination after her relapse. She was fortunate to have access to the Internet from her home at the time. This was a vital tool in her life.
Aylwin developed a special interest in late-stage M.E. and Severe M.E.; and extensively researched these aspects. She was also interested in other chronic immune/inflammatory diseases, and the connections between them.
She believed that scientific research data needs to be converted into accessible and practical information for M.E. survivors. They desperately need to use this information for maintenance and survival in their everyday lives.
Providing such research findings, distilled down into practical and understandable tips, techniques, resources, groups, and ‘how to’ information, was Aylwin’s ongoing passion in life.
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