ME clinics is another controversial area in ME and for very good reasons. With so many different ideas floating around there can be much confusion.
There does seem to be different approaches depending on where you live, so therefore there will be naturally different outcomes for the patient on whether they think it's helpful.
Our local ME clinic really believe in what they are doing, however we both feel, as do others who we've spoken to, that their approach is flawed on several important areas.
When we were uncertain of something regarding the ME clinics protocol we asked where they get their information, on these occasions it was like pulling teeth, with lots of mmm... and ers... but no papers to support anything.
We did a couple of small studies with the help of ME people, the results can be seen underneath. We would be happy for anyone to tell us their experiences and the survey can always be updated.
Basically the approach for our area was pacing, dividing your day into a time table of activity and rest. This is a good idea however more is needed in treating ME. The ME clinic believed that this was the road to better health and were puzzled when Miranda didn't improve doing this. When Miranda became bed ridden and Occupational therapist was sent out from the ME clinic to do home visits she encouraged Miranda to try and increase activity, giving her a timetable of tasks to try and do per day which were totally out of Miranda's capabilities.
We feel this contributed to Miranda's worsening condition. In fact, the ME clinic told Miranda her severity was rare of which we know is wrong. Eventually after infrequent contact Miranda was discharged despite no improvement.