This is a common question, with the requirement being to provide a very brief response & succinct documentation. The main documents for this purpose are:
– workwell 2010 guidelines for physiotherapists
– 2012 MEaction patient survey with graphs on harm
– Journal article special edition discrediting PACE
I personally ordered an official print copy of the two document below, and have these on hand. While the doctors don’t have time to read them, having a tangible copy available makes them less likely to be arrogant or dismissive.
– American Physical Therapist Association extended article on CFS quoting Ron Davis and Workwell
and – the IOM report, this is in the format of a fully journal article referenced book.
Background reading to prepare yourself:
It is not necessary to explicitly refuse to increase activity. Recommended scripting would be:
‘I’d love to safely increase the amount I’m able to do, without exacerbating my illness. I’d like to do this using a heart rate monitor to stay below my anaerobic threshold, as the cardiac system doesn’t recover in ME/CFS’ (then provide documents).
If a follow up is required:
‘I’m aware the CDC recently adjusted their guidelines following on from the 2015 IOM report renaming CFS ‘systemic exertion intolerance disease’, and that the AHRQ have said the evidence base for CBT & GET is inadequate due to the use of the Oxford criteria for research.’
When dealing with cardiologists:
‘A common misconception is that deconditioning is the cause of POTS. For some bedridden patients it can be, but research in the last five years found autoimmune subtypes which worsen following exertion or stress. In ME/CFS, POTS is worse following exertion and improves with rest’.