Another example of all that’s wrong with the media’s reporting of ME appeared in the press this morning (14/01/2015), no doubt disseminated by our ‘friends’ at the Science Media Centre. Apparently exercise helps improve people with ME, no surprise that this ‘evidence’ is provided by the usual suspects at King’s College, led by Trudie Chandler on this occasion1. You’d think the media might have made the connection that 90% of the ‘research’ claiming the likes of CBT and GET can improve/cure sufferers comes from the same source, using the same flawed methodology but that’s beyond the wit of your standard compliant and lazy British journalist. The original article appears in The Lancet Psychiatry, so no possible bias towards there being a psychogenic explanation for ME, and follows on from the notoriously flawed PACE trial(2,3).
Media people, self-reported ‘improvement’ is not an objective measure of actual improvement, patients have a tendency to tell medics what they think they want to hear, however useless the therapy in question may be, and there are few ‘treatments’ more useless than CBT and GET. Even if you take the reported improvement at face value, moving from the fitness level of a 90 year old to that of an 88 year old really isn’t a stunning achievement.
On the plus side it’s a relief to see that The Telegraph4 with it’s headline ‘Gentle exercise is the best tonic for yuppie flu’* (yuppie flu? Seriously?!), has finally made it out of the 1930s and into the 1980s. We also like the use of the word tonic, that’s what we little ME sufferers need, a pat on the head, a nice bit of gentle exercise and a tonic, then all will be tickety boo (to continue the archaic language theme). At least the Guardian put the story in its Society section5; apparently well aware it couldn’t be classified as a Health or Science story, of course it should be in the section labelled Fiction. We cannot however, commend their choice of image to illustrate the piece, a man yomping across the moors, how delightfully inappropriate nay offensive, in their defence we don’t think even the study’s authors are recommending a 20 mile yomp as a cure for ME.
The Independent’s headline isn’t much better, ‘Sufferers of chronic fatigue syndrome can benefit from exercise’6. We could ignore it, after all we suffer from ME not CFS, but they clearly conflate the two, using the ‘also known as’ trope. Excuse me Indy but it’s ME, please desist using the CDC renaming designed to make all ME sufferers look like a bunch of malingerers who cannot be bothered to get out of bed in the morning. If the ‘research’ comes from the same team that brought you the impressively flawed PACE study, then Mr or Mrs Journalist, it can be ignored, especially if it involves idiotic, non-scientific terms like ‘reduction in fear avoidance beliefs’. There is no such thing as a fear avoidance belief, you can believe in the Loch Ness Monster and God but not fear avoidance, it is another psychobabble non-thing thought up by the Wessely School to annoy ME sufferers, good job by the way as it is very, very annoying. Many ME patients become severely ill due to lack of fear avoidance, pushing themselves rather than listening to their bodies and resting, so use of such a term is inaccurate and nasty.
One of ME’s primary symptoms is intolerance to exercise, if exercise makes you feel better, you haven’t got ME, full stop.
The Independent’s article also states that CBT and GET were ‘the most effective treatments for CFS’, compared to what exactly? As anyone with the misfortune to suffer from ME knows, there are no treatments for the disease, we can’t choose between CBT and GET or an effective drug like levodopa (used for treating the motor symptoms of Parkinson’s disease); in the UK, CBT and GET are it, there is no other therapy offered. Part of the reason we don’t have an effective drug is that for the past 30 years any funding, admittedly limited as the government doesn’t see the health of 250,000 ME sufferers as a priority, has gone into researching psycho-nonsense like CBT and GET. Fortunately, following successful Phase I and II trials7, the Norwegians are conducting Phase III trials of the monoclonal antibody drug Rituximab. If the results of this trial are successful there may finally be an effective drug treatment for ME, though no doubt the British media will continue its obsession with pushing CBT and GET, speaking of which, perhaps some CBT may be required to cure journalists of this unhealthy addiction.
To finish on a positive note, The Independent did acknowledge the condition is real. Thanks awfully Indy, the World Health Organisation has thought so since 1969 but it’s good to see the British media finally catching up8.
*This is the headline on the Telegraph’s title page that leads to the article.