A lot has changed in the five years since I first created Diary of a Disabled Person, so I decided to take a look back at content produced in my first two years of writing and update some of my earliest articles. So, in no particular order, let’s revisit GETting Nowhere (originally published 11th February 2018).
When I was first diagnosed with Myalgic Encephalomyelitis (M.E, a.k.a Chronic Fatigue Syndrome/CFS) in late 2011, the first course of treatment I was offered was Graded Exercise Therapy (GET). As the name suggests, this therapy involves performing daily exercises, increasing the intensity and severity of these exercises incrementally over time. It was alleged that my symptoms were due to a lack of physical fitness, which considering how fit I was prior to falling ill was preposterous. In GETting Nowhere, I described how this therapy resulted in a sudden and significant decline in my health, being the primary reason I found myself having to use a wheelchair a few months later. Sadly, it transpired that my experience was not a rare side-effect as I had originally presumed, but was a near-universal experience for M.E patients exposed to this therapy.
In Autumn 2021, after decades of hard work by disability rights activists and patient advocates, the National Institute for Health and Care Excellence finally declared that exercise-based therapies such as Graded Exercise Therapy would no longer be used to treat M.E patients. This decision was met with disdain from some medical professionals, primarily the physiotherapists and psychiatrists who had led the studies on Graded Exercise Therapy and were displeased that their frankly unscientific work had been called into question. For M.E patients in the UK this was a substantial victory.
Unfortunately, the notion that post-viral illness was a lack of physical fitness with psychosomatic elements had cemented itself in the medical community, and was considered to be absolute truth. While M.E patients like myself were somewhat protected, those feeling the effects of post-viral illness in the wake of a viral pandemic were not. Indeed, almost as soon as long-COVID became apparent, patients were being directed to the NHS COVID Recovery Plan called Getting Moving Again. The program is even more horrific than it sounds.
For starters, the recovery plan website states that patients undertake the advice offered at their own risk, and repeatedly states that long-COVID is just a lack of fitness. Furthermore, instead of being administered by health professionals, the therapy is lead by personal trainers and sports experts. Unsurprisingly, stories of people whose health has declined as the result of this treatment are already pouring in.
To watch what I experienced over a decade ago happen to others is beyond devastating. Any sense of victory M.E patients felt last year now feels completely hollow, and for both M.E and long-COVID patients (at this point, I’m fairly convinced that the two illnesses are at the very least variations of the same illness) it is becoming harder and harder to trust medical professionals. All I can say is that if you do have long-COVID, I strongly advise that you do not participate in the Getting Moving Again campaign, as you’re far more likely to find yourself getting nowhere at all.