Sunday, 8 September 2013

How many neurologists does it take to change a lightbulb?

You have a neurological condition. A neurologist can and will make you better. Right? 


 I have huge respect for all medical professionals, I think the job they do, day in, day out to help and care for people is inspiring. However, when I became ill I realised one important fact:


Unfortunately, despite three weeks of being acutely, physically ill in hospital, my complete and devastating physical illness was first diagnosed as a psychiatric problem, and I had to undergo months of 'talking therapy'.

Being the sensible soul I am, and being desperate to get better, I promptly attended my appointments with my neuropsychologist. To sum it up, my experience of talking therapies varied from hysteria (on my part) to indifference (also on my part) and all states in between. Three things were becoming very clear.

1) I really like talking. 
2) It felt good to get things off my chest.
3) It was not making any difference to my symptoms.

After gradually becoming worse, I lost the ability to walk, talk and chew and many other unpleasant symptoms, so on the advice of the neuropsychologist, I saw a different neurologist. 

He immediately diagnosed me with the neurological disease known as Myalgic Encephelomyelitis, or M.E.

M.E is often descibed as a 'functional disorder'. A functional disorder, by the way, means that the hardware is ok but the software is not functioning properly, all the bits are there, they're just not doing their jobs, slacking off, on strike. That's how my neurologist described it to me anyway. But there is a strong evidence base for M.E being organic, i.e. NOT functional. It affects every cell in my body and plays havoc with my immune system. The idea that this devastating illness can be cured by talking about it is absurd and crazy to me. I want to be better. I have done everything any doctor has suggested I do. I am still not better. In fact, some of the advice I have been given by medical people has been very damaging. 

M.E is not just 'feeling tired'. It renders me unable to do even the simplest of tasks and has ripped apart my life. And for some reason which is entirely unknown to me, there is no significant money being spent on research.There is no cure.

Welcome to the world of M.E.


  1. I giggled at the bit when you said you found out how much you liked talking and felt very sad when you disclosed that some of the suggestions made to help you recover did you harm.
    It is more common than most people would think for M.E sufferers to be told to push through, exercise and take CBT when there is not Scientific based evidence that this helps ALL sufferers and when there has been study results showing that it will hinder or prevent recovery for some sufferers.