Regular readers of my blog may recall that I have suffered from the condition known as CFS (ME) for the past 19 years. CFS leaves me without enough energy to get me through each day, and in its worst form makes me unable to get out of bed – for weeks, or months at a time.
On the news this morning, I heard about the launch of a large-scale trial for teenagers in the UK, to treat CFS online. It’s estimated that around 2% of UK teenagers suffer from CFS/ME, causing them to miss school, and the condition is currently untreated. A programme in the Netherlands claims success at treating patients, and is being rolled out here in Britain, initially for around a thousand children.
The method involves online counselling, and has come in for criticism by those who believe that CFS/ME is a real disease, and that this psychological counselling perpetuates the idea that it’s just a psychological condition. I am personally firmly convinced that CFS is a physical condition – most likely some kind of pathological and permanent immune response to a viral infection. I believe this because, like most sufferers, my CFS began immediately after a viral infection, and every time it recurs in its worst form I experience exactly the same symptoms as the original infection all over again, even though I don’t have it.
I’ve been trawling around for facts about the study this morning, and it’s been hard, as most of the news reports I’ve found have little to say about the details of the treatment.
From what I understand, listening to interviews with teenagers who have received the treatment, it centres on ways to manage sleep and activity levels – ensuring that sufferers are realistic about how much activity they can undertake, and that they rest sufficiently. The claim is made that 63% of patients treated in this way in the Netherlands showed no symptoms after 6 months, whereas just 8% recovered without it.
This advice – don’t try to do too much, and take sufficient rest – is exactly the advice I gave in my first article on CFS. I still believe this to be sound advice, and if this is what the counselling seeks to achieve, then it sounds like a good programme that could benefit many teenagers (and adults too). Anything that helps people to reclaim their lives should be welcomed. I have used the same kind of approach to manage my own condition, and haven’t suffered from the most debilitating form of the condition for around five years now.
But I am not cured. I have learned a management strategy. And I suspect that the teenagers that this programme claims to have “cured” have also learned to manage a condition that will be with them for the rest of their lives. I hope that the programme teaches that, otherwise patients who think themselves cured may suffer from relapses.
I hope that the study will not reinforce the myth that CFS/ME is a psychological condition. And I hope that research into a real cure will continue. One day, there may be a way to cure this horrible condition for good. In the meantime, this counselling sounds like a very constructive way to help people live with CFS/ME, and I hope it is successful.