YouTube channel, OFFERUtah, has several videos on the topic of pacing. Pacing is key for anyone with M.E. Everyone's notion of pacing will be different. For me, I have a very restricted lifestyle in order to get through a full-time job. I'm hoping to work part-time in the future, which I believe will enable me to do a bit more, since I'm currently in a situation whereby I'm getting about 45 minutes of physical movement each day - ie. moving around on my feet - which can in no way be classified as genuine exercise, and I'm getting increasingly worried about the longer-term impact of not getting much/any exercise. However, for me, my limited daily routine at present is what I need to do in order to get through work. The moment I try to do anymore, I do start to crash. It's not just a matter of worrying about doing more; the pattern of activity followed by symptom flare is so distinct that it's truly very real.
Going back to the OFFERUtah video, they refer to the Bruce Campbell CFS program, an online course which requires email interaction to allow people to discuss pacing and managing to live with M.E. It seems that there are no 'live' group meets, and that people from outside the US can follow the course. Dr. Campbell himself got M.E. in 1997, and again, it seems that he is another who has been inspired to try and help others through his own quest to recovery. (According to notes on his website, he is recovered). There are also a lot of support notes and guided suggestions such as defining how you feel on a scale of 1-100, keeping a log of your daily activities, and setting realistic goals that you can schedule each week. Dr. Campbell's online course is part of a not-for-profit setup, although it does have a fee of around US$30 to get started. It doesn't sound that much relative to the potential share of information, and as some course participants have said, it's been an invaluable outlet just to be able to 'meet' people in a similar situation, since M.E. can be very isolating. The course progresses from an introductory level, to a more advanced level, and new sign-ups are sent a copy of Dr. Campbell's book, The CFIDS & Fibromyalgia Self Help Book.
Overall, the course sounds very much geared toward the self-help dimension (Dr. Campbell was involved in self-help study at the likes of Stanford University before he got M.E.), and this citation from the website seems to sum up Dr. Campbell's approach very well:
"The course is not a cure for CFS/FM; it is simply designed to assist in developing an individualized plan for managing your illness. That plan should help you feel better and improve your quality of life, and it may even be an aid to recovery."
From this type of course, I'm wondering about the possibility of setting up an online course that could provide live verbal discussion rather than waiting for the time-lag of email return. There are currently a few sites out there (WizIQ is one of those, although I've noticed since my last visit that every group now needs to pay a monthly fee to host classes) that can host live, interactive discussion as well as the avenues such as Skype. I guess I need to wait for momentum to pick up on readership of this blog for people to state an interest in this, but there might also be other ways to go ahead without relying on this blog.