My doctor recommended CBT & GET: what do I do?

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 letter against GET

– workwell 2010 guidelines for physiotherapists

2012 MEaction patient survey with graphs on harm

Secondary documents:

– Journal article special edition discrediting PACE

– main CPET studies (inability to reproduce vo2 peak, Diminished Cardiopulmonary Capacity During PEM)

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:

brief blog on PACE

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’.

For a full list of relevant articles, blogs and research, see the HRM links master doc. For information on heart rate monitoring, see HRM master page.