Friday, 4 June 2010

Managing my ME - report

Just added Managing my ME to my list of links. In 2008, the ME Association set in motion a major survey of illness management requirements. Both patients and carers filled in questionnaires during the four-month information gathering period. Managing my ME has now been published giving us the results.

One result that I found heartening was that when asked 'who would you prefer to co-ordinate management of your illness?' the most frequent answer was 'my GP'. This is heartening because we often read of ME leading to a breakdown of trust between patients and GPs (indeed, it happened to me with my former GP) - most respondents still felt their GP should be provided with better training and information concerning ME, but it is good to hear that the basic relationship seems valued and relied upon. Equally, GPs are encouraged by the Wesseley lobby to view ME patients as malingerers - I am hopeful that the 'pro-GP' questionnaire answers indicate this hasn't been too successful.

If you can't guess who came bottom of the list people wanted to manage the illness, well, it begins with 'a psychia-' ;) I almost died of Not-Surprise.

Some of the results are no surprise at all - Graded Exercise Therapy (GET) tops the list of 'treatments that made me worse' by quite a long way with 56.5% saying GET had made them worse - this breaks down as 33.1% 'much worse', 23.4% 'slightly worse'. A mere 3.4% said they were 'greatly improved' after GET; 18.7% said they were 'improved' and 21.4% reported 'no change'.

Just imagine for a minute that GET were a drug - surely results like this would lead to it at the very least no longer being offered as the preferred treatment? We're talking about something that helps less than a quarter of the patients who undergo it, and makes more than half of those who undergo it sicker than when they started. (Perhaps someone who knows more about the medical world of trials could tell me how effective a drug treatment has to be shown to be before it is considered acceptable and worth pouring resources into?)

NICE are due to review their current guideline on CFS/ME (the one that says 'give 'em all CBT and GET') later this year - can we hope they will take any notice of this report?

Maybe we can at least hope to be faced with fewer outbreaks of total denial like the 'defeatism editorial' (BMJ2010;340:c738) in which Santhouse et al blithely asserted

Treatments such as cognitive behavioural therapy and graded exercise therapy have been shown to work in CFS/ME in adults and children (for whom the outcome is generally more optimistic) and they are recommended for both groups by the National Institute for Health and Clinical Excellence (NICE).

Oooh, was that the facts flying by right in front of their oblivious faces? How many times do these guys have to be faced with the evidence before they drop their mantra that we should all just perk up and do CBT and GET to reprogram our delusional brains?

As I have said in an earlier post, informed refusal (which is every patient's right by the way) is not 'defeatism'. It's self-preservation. You have to be coming from a pretty odd - and indeed, somewhat unpleasant - mental place if you label someone defeatist for refusing a treatment proved to do more harm than good.

For me, those who continue to push GET in the face of the evidence have definitely crossed that hazy line to the place where ignorance has become indistinguishable from malice.

When first diagnosed, I used to think that the frustrating thing about ME was that there was so little information and evidence 'out there'. If only. One of the hardest things to accept about this illness is that there is an abundance of information and evidence out there - but so many vested interests in imitating the 'hear no, see no, speak no' monkeys that the people who have it are constantly fighting - not to have their evidence acted on but to get it heard heard at all. We are still, in effect, trying to get to the starting line.

Here's hoping this won't be one more buried report.

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