And it does seem that the disease is starting to get the attention it deserves. Earlier this month,
the NHS announced that is is trialling a therapy to treat two-thirds of the children who suffer from CFS. By using online behavioural therapy sessions on 734 children, the trial aims to adjust children’s sleeping habits and activity levels to try and adapt the way they live and alleviate the symptoms.
However, for me, being pushed to do more exercise, sleep more, or try therapy certainly wasn’t the answer.
I personally thought it was a very good article and smartly done as it was probably one which will fit well and be well accepted by the UK where it was done and by her little comment starting from the "However for me " sharing how the what they are proposing for that trial with children doesnt work for her .. she's actually getting out there they are doing this study "but it didnt work" kind of message.
If the artical included ranting about the trial, she would of been probably been far less likely to get it published and it would of made her in the eyes of many in the UK out to be one of those trouble making ME/CFS patients out there who say and do all kinds of crazy things... would then make many UK readers just shut down rather then absorb info from article.
Anyway its a good one as its very truthful, nothing played down but was quite acceptable for the UK
I really like the fact that she was able to bring up the lake tahoe epidemic in it too (publishing something mentioning this I'd think is a big achievement in the UK!!), too many arent aware this illness can appear in epidemics and that helps get people thinking much more about it.
Anyway, I think it gets across some very good messages in a way people in UK could take (and most people wouldnt click that link on the study. Unfortunately that linked BBC article does have some false info on it).
Part of her article
Potentially the worst part was the likelihood that it might not go away.
A 2011 study published in medical journal The Lancet had originally suggested that the illness could be made better with exercise, but
an analysis of the data years later showed that as long as you’re already getting standard medical care, the chances of being helped by treatment are 10% at best. The chances of recovery are almost none.
Its helping get out there that the PACE trial failed.
Colour me hugely suspicious but it reads like an article that the community could get behind and then needlessly includes EC subtly at the end.
Im happy that EC
didnt get any media space in this article given to her actual name though it mentioned her study. I wonder if EC will feel like as a bit of a kick people mentioning her study in news articles but not mentioning her at all. With her name not even being here, I dont feel like this article was any way about giving EC attention at all.
There is nothing either in this article which Simon Wessely or co buddies could put his own comment about the article and mislead others away from actually what this article says. (that's why I think this article is so smartly done, nothing in it can be disputed even with putting it out to the UK audience its going out to).