Dr Donnica only, sorry Annette but this is all I could manage and I think it is what our dear SB wanted. So, SB, this one's for you!
Donnica Moore on the history of her interest in CFS:
Basically I’ve always been very interested in and committed to women’s health issues in general. Particularly those issues which have been misdiagnosed, under-diagnosed, under-detected or under-treated. My particular pet peeve are doctors who dismiss women, or men, who have chronic complaints with the, you know, “It’s all in your head, dear.” and this was one of those diseases.
So, in 1992 I was the Founding Chairman on the National Congress on Women’s Health and we decided to do a seminar, as part of this congress, called: It’s Not All In Your Head. And one of the major diseases we focused on was Chronic Fatigue Syndrome.
So, I talked about it on and off and wrote about it a fair bit until, in 1999, lo and behold, my own husband who had previously been a triathlete and exercised every day no matter what, came down with a flu like illness which did not resolve and ultimately he was diagnosed with Chronic Fatigue Syndrome.
Several years later, in about 2004, my son Brian was in the same exact situation. He was a 100% well, he was a top athlete and he - my daughter and I all came down with the flu-like illness at the same time, my daughter and I got better in 7 to 10 days - and my son never recuperated. And, that’s pretty much the story we hear in about 90% of patients: that they were generally well until a flu-like illness, or some other event - for a minority of patients that might be a head trauma, or a car accident, a surgery, giving birth to a child - but the overwhelming high % of people with Chronic Fatigue Syndrome begin their journey with a flu-like illness.
On politics, insurers, governments...:
Well, I think the bigger issue is what’s the cost of not knowing the cause of Chronic Fatigue Syndrome and what is the cost of not knowing the treatment? The fact is we don’t even have that information but it’s probably in the billions of dollars.
I think what we have to focus on is the scenario in the United States. As much as I care about patients around the world, we have to start at home. And, we can’t make our scientific policy and our scientific research plans and research funding based on other countries being afraid that they’re going to have to bear a bigger burden of the cost for their disabled people. And, if they’re going to commit to helping disabled people, they should commit to helping all disabled people.
Now, interestingly, back to the issue of children and Chronic Fatigue Syndrome, a paper just came out a week ago in the Journal Paediatrics, and it’s a very small paper - there are only 25 children with Chronic Fatigue Syndrome in this paper - but one of the key findings in this paper show that the quality of life for the children with Chronic Fatigue Syndrome was worse that that compared to previously published studies of kids with Type 1 Diabetes or Asthma.
This is the kind of thing that people need to understand: this disease causes significant disability, significantly impaired quality of life. And, of course, there’s a tremendous cost of treating but there’s an even bigger cost of not treating.
In answer to a question about how parents of children with CFS or FM should plan for the future.
That’s a great question because one of the biggest frustrations is we can’t plan for the future. If I had known when my son became ill that it was going to last this long - and my son is a 16 year old high school junior; he’s been sick with this for over five years - I would have made very different decisions about his schooling, and his overall treatment than I did at the time when I kept hoping it was going to get better.
We don’t have a crystal ball. The only study that’s available on the long term follow-up of children, that I know about, is a study Dr David Bell did, well more than ten years ago, which looked at 225 children - as far as medical studies go that’s a very small group - and they found that 50% of them got a little better after 2 years. 25% of the remainder got a little better after 6 years. 25% of the remainder got worse and 25% stayed the same. So, when I read that five years ago, I was devastated thinking that my son might be sick for six years and I couldn’t even think of the possibility that it would be for ever. But, if now you told me that in sick years he would be well, I would take that in a minute! So we can’t plan. Every other one of my children’s classmates are planning for college. We don’t know if he can go to college. And, he’s the number one student in his class. But, he can barely get across the street to go to high school.
But the other very important thing that you mentioned, and this is a semantic issue, is the difference between saying someone has chronic fatigue and saying Chronic Fatigue Syndrome. Calling Chronic Fatigue Syndrome, or CFS: chronic fatigue is like calling Tuberculosis: chronic cough, or calling Parkinson’s Disease: chronic shaking.
Chronic Fatigue Syndrome is a very complex neuro-immune disease that has so many sequelae and so many side effects and consequences and other organ system failures well beyond fatigue. And, that fatigue is not “I’m tired”, it’s not “I don’t feel like playing soccer today.”, that fatigue is “I don’t have the energy to lift a water bottle or get to the bathroom.