So I put this on Facebook and then remembered that I have a very lonely neglected blog. But here you go Mr blog, enjoy this rant, which I posted on a link to this Guardian comment piece: “Life is hard for us ME sufferers – and simplistic news reports don’t help“.
This article is in response to a report saying that one of the barriers to improving symptoms in ME is the fear of exercise (I.e. Of doing something that will make your symptoms worse). This is a common psychological response to many many chronic illnesses and chronic pain. If doing something makes you feel worse, you avoid doing it.
In the case of ME sufferers, exercise means something very different to healthy people. For the bed bound, it might mean sitting up briefly. For others it might mean going for short (1 or two minute) walks. For me, currently, it is doing my Physio exercises designed to help my hip pain and strength for a few minutes a day.
I freely admit that if you asked me to go for a 20 minute walk with you my first reaction would be fear. That’s because I know from experience that this will increase my hip pain to a level that I will spend four nights unable to sleep, despite prescription pain killers, heat patches and the lovely Ivan massaging out my tight muscles. I will also experience an increase in fatigue, making the simple tasks I am normally able to complete feel like redoing my A level trigonometry exam and staying awake becomes equally challenging. that’s what happens before you also factor in that I am now sleep deprived.
However, headlines like “fear of exercise is biggest barrier to chronic fatigue syndrome recovery” and “Chronic fatigue victims suffer fear of exercise” etc etc don’t quite paint the same picture, they exacerbate the idea that ME sufferers simply need to pull their socks up and get on with it. Some carefully tailored exercise does help some ME sufferers, it has helped me before. Tackling fears around your function is a useful part of managing your condition. However, we are also taught by our specialists that we too often push ourselves beyond our limits, that we need to pace out our energy and not fill our good days with extra activity, as it will increase the number of bad days.
The picture these stories paint is that we are ill because we fear exercise. This is not the case. We fear exercise because we are ill.
I’d also recommend this article, detailing ME Research UK’s response to the same report, which pointed out that “While the psychosocial approaches suggested [in the report] do have some effect, according to the original PACE trial data [the research this report comes from] they benefit only 10 to 15 percent of ME/CFS patients”.
What you say is all too true. Frustratingly, one of the doctors involved in this research did a study some years back that actually found ME suffers didn’t have an abnormal fear of exercise yet he still continues to base his research on this mistaken belief. http://www.ncbi.nlm.nih.gov/pubmed/15992572
When I first attempted graded exercise in the early years of my illness, I wasn’t aware of the controversy regarding exercise. When the doctor explained to me about deconditioning it seemed to make sense and I still trusted doctors to always know what was best so I eagerly embarked on a gentle graded exercise programme fully expecting it to make me better. Instead it triggered a massive relapse that left me too ill to get out of bed for weeks on end.
Like most patients, my reluctance to exercise beyond my current abilities comes not from fear but from personal experience of its harmful effects and numerous research papers showing objective proof of the harm it can cause. Most ME sufferers I know are prone to doing too much not too little as we so want to be well and struggle with having to restrict our activities.
Wow. I could copy and paste your experience, as it is exactly the same as my own! I faithfully followed my graded exercise therapy routine into a massive relapse as I was told by my physio that anyone who didn’t do it wasn’t trying. Really interested in the research you posted. Hope you’re improving :).