It's been quite a few years now that I (Kati) have discovered that if I, and we as a patient population, didn't get to work on advocacy and about how we want to be treated as patients, then we would be left for dead and things would not have changed much for the new generation of patients getting sick with ME today.
I have over the years tried a few things, got knocked out, got up again, crashed, waited and did it all over again.
A few years ago I joined a patient advocacy group called Patient Voices Network (PVN), a BC organization that literally gives opportunities to patients to have a voice in health care. You can view and join here.
Through PVN I found out about a research engagement meeting, which I attended in June. We were asked about how patients across BC would like to be notified about clinical trials, and what would be the essentials to build a website that gathered information about clinical trials (for all diseases).
It was through this meeting that I met Dr. Rahaf Al Assil. She came to engage as a patient and joined my little discussion group. At break time she asked questions about my experience as a patient who participated in clinical trials. She was curious. It was then when I started talking about ME, and about how little care is available, and about the fact it was real (of course it is), and in fact the most recent papers showed many abnormalities in metabolomics. Dr. Al Assil mentioned she was interested in metabolomics. From here, you know, things got animated. I just happened to have a copy of the Naviaux abstract. I wrote my email on it. We simply never returned for the second part of the meeting. We talked that evening for 2 hours about the situations that patients are facing with this devastating disease: the lack of interest in a medical specialty, the stigma in society and in health care, the lack of approved treatments. Dr. Al Assil said that night she would be willing to help. Then I told her that Dr. Davis would be holding a conference in August (the Open Medicine Foundation Community Symposium at Stanford). And she said she might be interested in attending.
I phoned Elizabeth at the Society, and told her of my very lucky encounter. I suggested that supporting Dr. Al Assil in attending the Stanford Symposium would be a very good thing for all patients. She agreed and so the Society decided to sponsor her.
Time seemed to fly by and I could not believe it when the day of the Symposium came, and we got news that our new protégée made it across the border (she is Syrian), and was down in Palo Alto, photographing with our heroes who presented, including one shot with Dr. Davis. Dr. Al Assil had a chance to talk with Dr. Alain Moreau, a researcher from Montreal, Dr. Armstrong (Australia) and. Dr. Davis among others. I had a chance to speak with her the same evening and it is thrilling to me that we, the patients of BC, through our patient organization, managed to send a physician new to the field, who is beginning a Masters of Epidemiology program at UBC (for those of you who wonder, while she has lots of work experience overseas, she has yet to write exams for her license to practice in Canada, so she would not be able to work as a doctor as of yet).
We are hoping Dr. Al Assil can participate in research efforts, and maybe some day, be a strong clinical leader in our community, but this is of course up to her and what she envisions for her career. We - me and the Society - will support and guide her as she needs, and we will keep our fingers crossed for what the future holds.
In closing, I would like to encourage every patient to engage in awareness raising and advocacy, including writing letters and requesting a meeting with your MP, MLA and health minister. There are many issues to talk about, including the lack of physicians, long waitlist, inadequate programs at the Complex Chronic Diseases Program (CCDP). We deserve dedicated full-time researchers, who get funded by CIHR. We deserve access to compassionate use of medicines. Severely ill patients deserve access to adequate home care and hospital care when required.
Lastly I encourage everyone to join Patient Voices Network and find opportunities to raise awareness in our community.
Welcome to our community, Dr. Al Assil. Best wishes always.
Photo 1: Dr. Rahaf Al Assil and Dr. Ron Davis
Photo 2: Dr. Rahaf Al Assil and Dr. Mario Capecchi - Nobel Laureate
Photo 3: Dr. Rahaf Al Assil and Dr. Alain Moreau
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