I’ve blogged about this before briefly but the news this week from NICE is very interesting. Specifically, it has withdrawn advice that people suffering with Chronic Fatigue Syndrome (ME) should exercise to combat the effects of the illness. The news article I read was then overrun with comments from sufferers who overwhelmingly said “thank god for that” and “we’ve been saying this for years!”. Likewise, cognitive behavioural therapy (CBT) should no longer be offered as a treatment, although it can be offered as a psychological therapy to help patients to manage their symptoms. The revisions have been based not only on published evidence but also on patient reports that the treatments did not help, and in some cases Graded Exercise Therapy (GET) caused them harm.

As someone with a chronic condition, I get bouts of fatigue due to pain and my crazy immune system which is trying to kill me one joint at a time, so I know what REAL fatigue feels like. It’s impossible to really know unless you’ve felt it and it seems more than coincidental that this has come about as the effects of long-covid become apparent. If you’ve had a post-viral fatigue, been very aenemic or spent a long time bed bound, you may also relate. Tiredness is one thing – it can be helped by sleep. Fatigue is a different beast. You can sleep for 10 hours and still feel like your limbs are made of lead.

Now, because all “invisible” illnesses are just that, they also fall into the category of hugely misunderstood, under-studied and therefore mostly incurable. I have had a lot of well-wishers who have actually really upset me with questions like “are you better now?” “are you fully recovered?” and the ever-present; “you look fine”. It really seems to make people very uncomfortable when the answer is “I may never get better”. People like a happy ending and not continuing doom, so sometimes are so put off when they can’t tie a bow around that moment which they hoped had ended. I had a family member send me flowers recently, the card didn’t ask how I was, it said “sorry to hear about your back”. I was SO upset but just had to graciously say thanks when I wanted to scream IT’S BEEN THE SAME HELL FOR 8 FUCKING YEARS YOU BLIND ARSEHOLE, WHAT EXACTLY DO YOU THINK YOU’VE HEARD??….. deep breaths, they mean well.

So forcing people to continue to exercise when you feel so shattered you can barely move is bonkers to me! I have forced myself to carry on working when I shouldn’t because I pride myself on being reliable and these conditions are not known for their convenience or caring what you have planned. Only in the last year or so I have cancelled plans when I just can’t drive that far or am just not up to it. It sucks but it seems to be working. I’m not constantly burned out. I made a stark choice this year to prioritise my work over social life because as it is I can manage 4 hours a day, 5 at a push then I’m done-for. The nature of my work being so physical, surely if exercise was the miracle cure then I’d be leaping a