This is the third year in a row that I do this, and all 3 times were great experiences.
Our local medical school has this yearly assignment for their first year med student: As part of their course: Patients, doctors and society, they are required to grasp the experiences of a patient living with a chronic condition. They visit at home and then they go back to their study group and talk about their patient's situation with their fellow students.
In my opinion this is a golden opportunity to educate young medical students about how terrible this illness is, what my experience with physicians has been, and how neglected this disease has been.
I talked about the fact that the onset of my illness was viral, and though I seemed to get respect when I got ill, I certainly lost it rapidly when I did not show signs of recovery, andin fact I was piling up more and more symptoms that were apparently unexplainable, unimportant and unworthy of my doctor's time.
I talked about the reluctance of all specialists to follow up a patient with ME- ME is an orphaned disease. It belongs to no specialty and i would advance that especially rheumatologists, they do not want to take us on. We are complicated amd require paperwork for disability insurance and else. Family physicians just don't have time for us, they don't have the knowledge base nor dothey want to acquire. that is my thought ad my experience anyways. So where do we turn to?
I talked about my experience of heading out to the US to get competent health care. How incomprehensible this was since I have been contributing to our so said universal health care system. i have now travelled to the US 3 times so far, 2 different experts with the hope that Rituximab treatment will be in my immediate future
I talked about the 411 000 patients in Canada, 23% more than 2005 according to the Community Health Survey, many ofthem totally removed from society, housebound ad bedbound with no health care.
I made sure to mention the tainted history this disease had with the CDC, outbreaks of the 1980's at were left unadressed and how the CDC diluted the case definition to include depressed and tired patients. kore on the CDC here http://www.virology.ws/2011/11/23/chronic-fatigue-syndrome-and-the-cdc-a-long-tangled-tale/ Many, many physicians rely on the information from the cdc website and still to this day, their website tells our physicians to prescribe anti-depressants, psychotherapy, graduated exercise therapy and the like.
The medical student left with a copy of the new ME International Consensus Criteria, a copy of the Canadian Community Health Care Survey report, and a number of copies of pamphlets explaining ME and FM so she can share them with her colleagues.
All in all, I am very satisfied with this visit, i think that I made an impact on this student and that I haven't wasted my time. However I feel that so much more needs to be done, at a global level. We can only hope that the newer projects, notably the Chronic fatigue Initiative (I hate the name) http://cfinitiative.org/ will help break down barriers and get us some help.