Not so NICE for ME

As many of you will know, the National Institute for Clinical Excellence (NICE) give guidelines to NHS doctors on how to treat patients with certain conditions.
What they have done with ME is to lump it together with all other conditions that can cause fatigue such as chemotherapy treatment in cancer, systemic lupus erythematosus, heart failure, depression, end stage AIDS etc. While the fatigue is genuine in these cases, and is debilitating and serious. ME sufferers take exception to being lumped together under one umbrella. This exception is for two reasons

a) It makes it easy for the medical profession to say that it is 'all in the mind'. While mental illness is serious and debilitating, having a medical condition written off as 'all in the mind' has a direct impact on financial survival. Most health insurers will not pay out for such conditions. As soon as people hear the word 'fatigue' they think 'tired'. They then go on to think 'we all get tired, so whats the big deal?' Comparing the day to day tiredness of well people, the fatigue in ME is prostrating and akin to collapse. It is like comparing a light bulb with a nuclear reactor.

b) Lumping ME together with fatigue means that not one penny of Government money goes into ME Research. There is some brilliant work going on eg Dr Jonathan Kerr at St George's Hospital, Tooting, and Dr Jonathan Gow in Scotland. These studies are being financed by the very poor who can perhaps scrape up £2 a month. Without research, we won't get a diagnostic test or treatment that works. NICE suggest CBT, a psychological treatment designed to teach you to cheer yourself up and GET or Graded Exercise Therapy which is actively harmful to ME patients in mitochondrial failure. It could leave them semi comatose in a silent darkened room, unable to talk or feed themselves (they have to be fed by tube) or attend to any normal function at all.

Following the 'one symptom in common' logic, suppose all abdominal pain were treated the same? Just think, for a minute, of some things that could cause abdominal pain and then think if a bog standard, uniform, one-size-fits-all treatment would be a good idea: appendix, kidney stones, gall stones, kidney infection, inflammatory bowel disease, stomach ulcer, period pain, ovarian cyst, childbirth, constipation, endometriosis, colitis, pancreatitis - the list goes on. All of these people may have tummy ache, but it would be mad to try to treat constipation by doing a Caesarian Section, wouldn't it? Yet thats exactly what NICE is trying to do with ME. So you're tired? Cheer up and get some exercise!

We deserve much better than that.

Dr Myhill writes about the differences between ME and depression HERE
She explains about MITOCHONDRIAL FAILURE here.

So two ME sufferers asked for a Judicial Review in the High Court, which was heard at the Old Bailey last week. The Judge has asked for more information and is reserving his judgement. Visit the website by clicking here