David Bell Lecture: 25 Year Follow-up in Chronic Fatigue Syndrome

David Bell has given a very interesting lecture (albeit a bit longish, but very rewarding to watch) on how his patients do after 25 years, and the Massachusetts CFIDS/ME & FM Association has done an excellent job of publishing it on their web-page:

Here is a short summary (about 1 page), and long summary (about 10 pages). You can view the video of the lecture (55 minutes) and the video of the Q&A session (42 minutes) – both links open a video in flash-format in a new window. MassCFIDS has made a fine presentation of the lecture with a side-by-side video of the speaker, an index and the slides.

I had two take-home-messages:

1. After the "acute" phase of ME/CFS, which can last several month to years, patients fall in one of three categories.

Dr. Bell felt that the single most useful criterion in gauging overall well-being was how many hours someone spent engaged in upright activity each day: "hours of actually doing something, like work, school, or cleaning; not just sitting around, vegging-out watching TV." Some people with CFIDS/ME log only one to five hours of cumulative activity a day, he said (those hours generally aren't consecutive; people might be active for only a few minutes at a time). Healthy people, or controls, averaged 15 hours of daily activity; the remitting patients, about 13, fairly close to the level of "normals." 

With the exception of those who had recovered, however, no one seemed totally okay this time around. Forty percent (40%) had essentially no symptoms and apparently normal activity, but they were not as well as controls. Among the 20% who remained disabled, many experienced increasing debility over time. The remaining 40% (the remitters) still had symptoms, but their activity level was close to normal; that sounds like a good outcome, but in fact many ultimately experienced a return of symptoms or an erosion in activity level.

So, after the acute phase:

• 20% never get well, most of them are bedbound
• 40% get well (albeit not completely), stay that way and have left the disease almost behind
• 40% improve after the acute phase, but never get "really well" and very slowly deteriorate over the years

And the "gradual-onset" patients might be patients that had an asymptomatic "acute" phase:

Also on the topic of XMRV, Dr. Bell suggested the possibility that many people may have been exposed to this virus without developing symptoms. … He said he wouldn't be surprised if it turned out that some people who were fine at age 20 became symptomatic as they aged, perhaps developing CFIDS/ME at age 40 or later. This is another subject for future research.

2. About half of the ME/CFS patients either have arranged themselves ("I'm fine, I don't have problems." despite being still seriously restricted), or they don't talk with their doctors about their symptoms ("I don't mention my problems, no way!").

"Health-identity confusion" seemed to plague those in the remitting category. They considered themselves to be in good health, but all still had symptoms and abnormal lab tests indicating that something was physically amiss. On the symptom scales, the remitting patients' scores fell about half-way between those of controls and those of chronic patients. A healthy person's score on one symptom might be zero (0), e.g., a chronic/persistent person's score might be 10; and a remitter's, in the middle at five.  

Bell remarked, that many patients will say, "I'm opting out of this system." … "When I called them, I asked, 'Have you told your current doctor that you have this illness?'  A lot of them said something like, 'I'm not going to subject myself to that!"