I realised that while I whitter on quite a lot about how ME can affect me, I don’t do much to raise awareness of it generally and seeing that I’m involved in a few campaigns to do so (here’s one), it makes sense to use this space as well.
So that’s what this post is all about. Stick with it, if you’re someone unaffected then the least you can do is spare a few moments and read a few words.
Firstly, despite it being a condition that affects around 250,000 people in the UK alone, doctors don’t receive any training on it (compare this to 220,000 people in England and Wales with a diagnosis of schizophrenia). It isn’t ‘claimed’ by any particular speciality; if a sufferer is fortunate enough to see a consultant, it could be anything from a rheumatologist to a psychiatrist.
The latter having done more damage to the understanding of ME than anything or anyone else. It harks back to the days when if a physiological explanation couldn’t be found then it was automatically classified as a mental health issue. Imagine having flu’ and being told it’s all in your head.
The scandal of the PACE trial evidences how treatment of ME has been completely ambushed by mental health professionals. The PACE trial (unfortunately named as pacing can be a useful method of managing symptoms) was a large scale five year trial funded by the UK government, at vaste expense, looking into four different type of treatments including CBT and graded exercise therapy (GET). To cut a long story short, the findings were published in the Lancet and informed the current NICE guidelines on the treatment of ME. However, it then turned out that the results were skewed and ‘considered the height of clinical trial amateurism’ by a leading statistician. As a consequence patients are offered treatments that can potentially and dangerously worsen their condition as well as directing funds away from useful and credible research.
Similarly the emphasis on therapy and exercise reinforces the stigma that people with ME are merely lazy and just need to ‘get a grip’. Replace ME with another illness such as glandular fever and you can see what a defamation this is.
Ok so what is it? If you know me, then the chances are you have a pretty good idea but if not or just to remind you then here is the ME lowdown.
Just to add to the confusion there are different names. Sufferers, including myself, can prefer to call it Myalgic Encephalitis (ME). The NHS likes to call it Chronic Fatigue Syndrome; the issue with this is that it focuses on just one aspect of the illness, fatigue is only part of it. Then we have Chronic Fatigue Immunity Disorder Syndrome (CFIDS) in the US; better as it acknowledges the immune aspect of it, although this is, as yet, not established. Finally, the NIH attempted to rename it Systemic Exertion Intolerance Disorder (SEID), that, funnily enough, hasn’t really caught on.
Oh and doctors also like to lump ME in with fibromyalgia too saying they’re the same thing.
So what is it, whatever it’s called?
Firstly, and the obvious one, fatigue. Not tiredness. It’s a feeling of utter heaviness where standing up to make a cuppa is a mammoth effort. I remember tired, after walking 12k for example, where you just want to sag on the sofa. It is not like this, it’s as though someone has swapped your bones for lead. And sleeping makes not one jot of difference, in fact a good night’s sleep is guaranteed to leave me feeling dreadful. It’s being out of breath after cleaning your teeth, having an overwhelming feeling that I must lie down right now.
Next are the aches and pains. It’s believed that people with ME have higher than normal levels of lactic acid, the thing that causes aches and pains after exercising, but we get it without the benefits. In this respect it can feel very similar to MS, as sufferers can also experience nerve pain, tingling, numbness and just completely unexplained stabs of pain that take your breath away.
Then there’s a whole host of others things from digestive disorders (one I’m very fortunate not to get), orthostatic intolerance (low blood pressure when standing up), insomnia, headaches/migraines and the wonderful brain fog.
Whilst it’s not considered fatal (although there have been incidences of ME being the cause of death on a death certificate in the UK), people with ME are six times more likely to complete suicide than the general population, and the average life expectancy is fifty five. Less than five percent of people who have had it for five years or more are expected to recover.
May is ME Awareness Month. We desperately need your help in raising awareness, so share this post, have a look here (and don’t get me started on ME Action, that’s for another post…) and if you know someone with ME, consider messaging them just to say ‘hi’, remember social media is often the only way we have of making contact with you.