There has to be at least gradual improvement, otherwise we don't have any therapy at all. The gilded scrap of a diagram below poorly shows the two successful outcomes we hope to achieve simultaneously for M.E patients:
Increased amplitude (activity level) and corrected
waveform shape (lessened symptoms).
It has been pointed out that improvement in M.E doesn't have to be measured in increased physical function alone. A reduction in malaise is also a great outcome, as is a reduction in pain or an increased ability to cope mentally with the burden the condition imposes.
Instead of putting function and exercise front and centre we put progression towards a healthy activity-sleep cycle at the heart of our efforts: Graded Activity-Shaping, as opposed to the simple target of ascending daily step-count.
The idea in a nutshell is to treat the objectively broken activity-sleep cycle we find in every case of M.E as both a cause and an effect of the condition.
This way forward should satisfy psychiatrists for it clearly underlines that a patient's behavioural response to M.E really matters. However, it also validates the patient view that there is true damage here and that the more we disrespect this fact, the more damage we do.
Overall, it is our aim to take the loop, the vicious cycle, the life-in-tailspin of M.E and change it back into a virtuous cycle of increased health, function and happiness.
If the idea is generally applicable I would say you could get someone from severe M.E to being able to exercise safely in less than 6 weeks. The process could perhaps be sped up, but only under controlled adherence to rules that we have, sadly, not yet determined.
We are looking at a true combination therapy. We're going to use ideas from both medicine and from patients: Exercise for health and fitness and pacing for health and symptom reduction.
The bias of our therapy will change over time. Patients should appreciate the validation and good common sense of initially responding to M.E with absolute rest. Meanwhile, doctors should be more likely to sign up to this extreme response within a context where the eventual treatment and outcome is predetermined to be increasing exertion and increasing fitness.
Along the way, both patients' need to track perceived energy levels and medicine's need to effect positive gains from treatment can, I think, be accommodated.
It is my belief that any sane and respectful approach to treating M.E must respect the work that both patients and doctors have done over the last decades.
Only through doctors and patients working together can the tragedy of M.E research be turned into triumph.
I see my job here as simply to get the two excellent and pre-existing ladders you've made, lash them together and maybe supply a rung or two in the middle.
I hope, with all my heart, that this will be enough to help free more than a few patients from the dungeon of M.E.
