My strategy to avoid doctors’ eye rolling
I not only got fed up with the name “Chronic Fatigue Syndrome,” which I never liked, but realized how prejudicial doctors’ referrals to specialists were when that term is used - instead of enumerating the complex and baffling array of symptoms I was suffering.
I now refer to my disease as "Nonspecific Autoimmune Disease." If anyone questions it, I tell them we're still testing. And I will continue using that term until someone comes up with something better. – Pamela
We need to combine a name change with better MD education
My thought is, how do you know that if you change the name anyone is going to be any the more informed or clued up to what we have? I mean, now the world opinion is so diversified that here (in New Zealand) it’s an accepted illness for the last five years, as approved by the Minister of Health - and yet every doctor I know has different ideas as to what it is, how it should be treated, and how it is caused...
New Zealand has had a massive campaign over the last few years to educate doctors about the illness through leaflets sent out to every surgery in the country. But I have had CFS for over 40 years, and now to be frank if you tell a nurse or doctor you have CFS at a hospital they sort of go “uh-oh,” because they either have no idea what you are talking about or of the serious nature of the illness, or they know a little, depending upon where they come from and the information prevalent in the country they were trained in.
Really the issue needs to be “Will a name change improve the outlook for CFS patients? Will it create a better understanding within the medical profession? Will they be more inclined to accept that this is a medical condition and not a mental one, as many countries are prone to do?" - Tony
Let’s work on finding that celebrity spokesperson
Regarding the recent letter pointing out that in addition to a name change we need a famous individual to be "the face" of the disease. This is something that I and countless other patients have been requesting for years.
Five big names I can think of off the top of my head who have come out at one time or another saying they have "CFS" are Cher, Stevie Nicks from Fleetwood Mac, The Duchess of York, Andre Watts (famous African American pianist) and Morgan Fairchild (she's got a TV show now called "Fashion House").
It's disappointing that some celebrity on this level hasn’t tried to make a difference in the public eye. With such a stigma still attached to having "CFS"(cringe)/ME, perhaps they feel they won't get work? We need to work on tracking down someone really famous to sign onto this huge project! And if they're too sick, than perhaps one of their loved ones can help us out. – LB
Dr. Jason on Fukuda vs. Canadian Case Definition of CFS
When I was checking for the Fukuda case definition of CFS on Google, this article showed up at the top of the list of medical references: “Comparing the Fukuda et al. Criteria and the Canadian Case Definition for Chronic Fatigue Syndrome,” by Leonard Jason, MD, et al. Thought most of your readers would be interested in the differences, and how they might have an effect on insurance disability benefits. The link: http://www.theoneclickgroup.co.uk/documents/ME-CFS_res/Comparing%20the%20Fukuda%20et%20al%20Criteria%20and%20the%20Canadian%20Case%20Definition%20-%20CFS.pdf – Beverly
[The article's abstract concludes: “The findings suggest that both the Canadian and Fukuda et al. case definitions select individuals who are statistically significantly different from psychiatric controls with chronic fatigue, with the Canadian criteria selecting cases with less psychiatric co-morbidity, more physical functional impairment, and more fatigue/weakness, neuropsychiatric, and neurological symptoms.”]
Rich Carson responded: Excellent! Dr. Jason, the lead author of that article, is on our name change Advisory Committee. The Canadian definition is much better than Fukuda's, though it will surely eliminate some patients who truly have CFS but may be a little less ill.
Might not hurt to get things rolling in Canada, too
I would like to suggest someone who would be a valuable asset to your name change Advisory Committee team: Dr. Alison Bested, a leading Canadian CFS specialist. She is my doctor, and I think she is amazing. She recently wrote a book titled Hope and Help for Chronic Fatigue Syndrome and Fibromyalgia, she has many years experience with CFS patients, and was a member of the Canadian Expert Medical Consensus Panel that produced the world's first clinical diagnostic criteria for CFS. I'm sure it wouldn't hurt to get some international presence and get things rolling to change the name up here in Canada too! – Heather
Rich Carson responded: Although Dr. Bested is indeed an amazing doctor, we will not ask her to be a member of this particular committee because she is not a U.S. doctor/researcher. I think it is important to keep this an all American team, because it is an American problem that we are presently trying to deal with. After we have a consensus on the new name, we will probably require another committee of experts (medical/political/legal/organizational) to guide us in the process of actually getting the name changed. That will open up the world to us, and we will be free to go for the cream of the crop no matter where they reside.