There is a mismatch between the experiences of graded exercise therapy (GET) reported in patient surveys and the evidence from formal clinical trials. In surveys, between 39 and 57% of ME/CFS patients say that GET worsens their symptoms, while the scientific literature paints a picture of moderate benefit and rarely alludes to adverse effects. This is an important matter, and one way of exploring it is to dig deeper into survey data. This is why researchers at North Bristol NHS Trust re-analysed responses given during an Action for ME online survey of rehabilitation therapies in 2010. Specifically, they examined the qualitative data submitted as ‘free text’ (i.e. as reports of real-life experiences) by 76 respondents starting rehabilitative therapies during or after 2008.
Overall, 56% of this group reported a worsening of symptoms with GET (28% reported betterment to some degree). The “negative themes” thrown up by these encounters are particularly relevant, and these include poor communication and support from the therapist; a sense of being pushed by the therapist; worsening of symptoms after treatment, leading to short and long term setbacks; and being blamed for treatments not working. Some of the patients’ comments are particularly revealing: “The therapist wasn’t listening. Just patted out the same old lines”; “I thought the CFS expert was trained to deal with people with mild fatigue not ME”; “They push you to do more without listening to what you are telling them. I have had ME for years; I know where my body is tired!”; “I was advised to push through any difficulties I was having as I had to find my ‘baseline’… I was treated like an army cadet on an assault course”; “it also made me feel guilty about being physically ill, as if it was my fault and that if only I tried harder I could get better.”
The report stresses that rehabilitation therapy can be of low quality or high quality, and that high-quality therapy is characterised by empathetic patient–therapist collaboration, and agreement on sustainable baseline activity levels, and a plan for setbacks. The authors say that poor-quality rehabilitation gives rise to negative experiences; one solution, they say, is to publish publicly available criteria so patients could identify whether they are receiving low-quality or high-quality rehabilitation support.
Reference: Use of an online survey to explore positive and negative outcomes of rehabilitation for people with CFS/ME. Gladwell PW et al. Disabil Rehabil 2013; Jun 4: Epub ahead of print