There’s been good news about chronic fatigue syndrome lately. Scientists in Australia have identified 25 genes that are linked to CFS. In her blog, Laura talks about this news with the hopeful tone that we all get when we consider the possibility that someday there may be a cure (hey, even treatment options that are universally effective would be greeted with glee).
Not to put a damper on this news, but what would happen if scientists and research money looked at chronic diseases as a whole, rather than a individual diseases? There’s an organization called, AARDA (American AutoImmmune Related Disease Association) that sees the connection. What if information was shared so that the people looking for the cure for multiple sclerosis are talking with the folks working on rheumatoid arthritis … or diabetes — or heart disease?
Maybe it’s because I’ve lived with 4 diseases in the auto immune world (MS & UC) as well as sjogren’s and reynaud’s that I see so many similarities among these illnesses. I also spend my days talking with clients with chronic illness and I’m often struck by the cross over of symptoms. Coincidence?
OK – it’s unlikely if you’re reading this that you are neither a researcher nor even a big funder of research. You’re probably just trying to figure out how to live with what you’ve got.
But I ask you, how could we, the person with an illness, not benefit from seeing ourselves as part of the larger group rather than a specific disease?
Especially in the workplace.Think of how this could impact your ability to get more flexible hours a work or different ways of doing the same task. Are there special interest groups in your organization? What creating one for people living with or who care about people who live chronic illness?
Didn’t somebody say, there’s power in numbers?
Laura says
Rosalind, Great Post!!!
I agree with you.
As in life, there is so much we can learn from each other. In Chronic Fatigue Syndrome, doctors have to rule out practically all other illnesses, before they will diagnose CFS. Which means (at least in my head) these doctors have considered a whole load of other possibilities…before the final word came down. I can not speak for other patients, but in my experience, my team of doctors have tried therapies that were not considered ways to treat CFS. They believe in treating a patient, and not an illness. Which gave them greater insight into who I am, and what I respond well to.
My experience with alternative therapy is a bit of an interesting example. When I first went for an acupuncture treatment, I had a very lingering case of bronchitis….going on 3 months. My acupuncturist had no interest in my “medical history”. Still doesn’t need to know about it. All he needed to know were that my lungs were hurting, breathing was a bit of a problem, and I had recurring fevers. That is what I was experiencing then. He would treat me, just like anyone else who complained of the same problems. It makes no difference whether these people had CFS, asthma, or their lungs hurt because a piano fell on their chest. As a result of that kind of treatment…I am doing a whole lot better.
Diana Brice says
Rosalind. I’ve known for some time that autoimmune diseases share symptoms as well as treatments. I have lupus and my best friend has recently diagnosed ms. I also have Sjogren’s, Raynauds and osteoarthritis. I sincerely hope that the medical community will begin to do as you suggested. This would improve treatment for all of the diseases. THANKS so much for the link to the AARDA site. I briefly looked at it, but will go back at home when I have more time to find out all it has to offer.
Rosalind Joffe says
Laura – It’s always a surprise to me to find out what helps me feel better and what doesn’t. I go to an acupuncturist – have for years – and although she hasn’t helped with any specific symptoms it does help my overall energy level. We have to take the time to figure out what will help us. Rosalind
Rosalind Joffe says
Diana – Glad I could lead you somewhere new. There’s so much out there but it takes a lot of time to find it all.
Rosalind
Barbara says
That is so true. Especially since people with one autoimmune disease often have others. When a treatment works on one disease, it shows promise for others. I have seven autoimmune diseases and the current treatmetn I am on (finally) has helped all of them plus the bone marrow cancer I have.
Barbara Yodice, Founder of the Autoimmune Information Network
http://www.aininc.org
thegreatlinguini says
When I was first diagnosed with liver disease, depression, and fibromyalgia (all within a few months in 1999), I read up online and in the public library. I started with the CDC web site for reliable medical info and also found a disease-specific local support group. But what really gave me the aha! that I’m connected to all people with chronic illness was reading a book called The Chronic Illness Experience by Cheri Register (ISBN 1568383460). Reading the words of so many people in that book – they were so much like me, even though our illnesses were different. It really helped me develop my identity as a person with a disability and I’ve made fabulous connections with other people with disabilities who understand disability as a way of being more than just medical deficit. Many of my symptoms have been lifelong, but I no longer identify (most of the time!) as a weak runt, which was how I saw myself before. Hooray for disability culture and for being able to recognize and appreciate the experiences of other people with invisible chronic illness. — it becomes less invisible when you see yourself (and your fatigue, pain, etc.) in others.
Rosalind Joffe says
Yup. That’s the Aha I’m talking about. I’ve Register’s book – and it is SO affirming.No longer a weak runt? Hooray for invisible disability culture! You go, girl! Rosalind