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Short discussion.

While we wait for the ground work, here's a brief outline of what a treatment for M.E could look like. Remember our aim to use ideas from both medicine and M.E patients.


The dramatic first step: the reduction to a Baseline where symptoms stop actually comes from medicine. Patients often resist saying symptoms are variable, but in this case baseline means an activity so low as to completely remove M.E, Post Exertional Malaise effects at all times.  Though absolute rest is not our aim and brings with it a whole host of problems associated with inactivity, it is hugely reassuring for patients to see that they have some measure of control over PEM symptoms.
Acceptance of M.E as a F-serious condition. As an advocate I used to be contacted by people with M.E who were just realising that they had to take M.E seriously & stop trying to "push through". I told them it took me 7yrs to get this idea!! They were doing well if they could do it faster!!
Rest - a massive increase in inactivity. In M.E something about activity brings on highly aversive PEM symptoms, *and crucially* the more you break the rules the tighter and more constrictive these rules become. While sorting out this issue wise to keep away from activity.
Pacing is where patients are essentially allowed to do what they can manage, whenever they can manage it. This keeps them out of PEM and the risk of lowering PEM threshold. And, I think, this is where patients learn to cope with, manage and then even control their condition.
Patients should not progress until Activity Shaping is complete.  This means no naps, no sudden exertions and no sudden drop-outs in power.  An athlete approaches every major exertion with a warm-up & follows it with a warm-down period. If they don't do this, they're likely to pick up injuries. A day is a major exertion. I think people with M.E should create a slow start, a build up to a gradual peak, then warm down.
CBT here means CBT(Challenge to illness-belief). You can view it as the opposite of Acceptance (which you can view as CBT(Challenge to illness dis-belief). If a patient has managed to smooth their activity cycle, the idea is they don't have M.E any more & can safely exercise.
Exercise should be gradually increased (GET) *in line with the smooth activity curve created previously*. There's no use getting all of the day's target number of steps in one hour of the day! They must be distributed across the cycle, slowly amplifying the activity curve.
Free Exercise: At this point (in my experience) there's a huge amount more tolerance for changes and for more sudden and strenuous activity periods. This is the point where the prehistoric dinosaur-doctors' advice to "Go to the gym!!" becomes safe and correct.
The last step is Recovery. Throughout all my time helping M.E patients I have always found that they want to get better. Always. The idea that people with M.E choose to remain ill to bathe in "secondary-gain" (eg: welfare; assistance from others) is just nasty & has no place in medicine.