Judicial Review in the High Court London

There is to be a review in the London High Court very soon about the NICE Guidelines for treatment and management of ME/CFS/PVFS.

The website set up to publicise these issues is here Please take a look.

The problem is that there is a huge body of evidence for biomedical changes in ME. Things like muscle biopsies behaving differently to 'normal' people when looked at through a microscope in a laboratory. Markers in urine found by other doctors in patients all over the world. Abnormalities on brain imaging, and a lot more that has been duplicated by researchers everywhere. Our own Dr Gow in Scotland and Dr Kerr in London have discovered abnormalities in genes.

It is a life-thieving illness to have, yet in the UK, not one penny of government money has gone to biomedical research into ME. All research as been paid for by charities which get their donations from people who are below the official poverty line.

The NICE Guidelines recommend
a) A psychological treatment called Cognitive Behavioural Therapy or CBT for short. There are not enough competent practitioners available so many people with ME do not have access to them. Even if they do, it is for a short while only and often involves journeys so lengthy that it sends patients into relapse. The treatment has apparently improved but CBT used to be about 'helping' someone feel more cheerful about not being able to bath themselves or make themselves a cup of tea while feeling very ill, isolated, bedbound or housebound. I believe it is much more helpful now but even so, feeling more cheerful about being ill is only second best to having research led strategies for treating the wretched illness effectively so that people can function again. That would cheer them up a lot more, I would think.

b) Graded Exercise Therapy or GET for short. This helps people who are tired for reasons other than ME - perhaps heart, kidney, depression or stroke patients. However, only people who are well enough can see someone about this therapy. Unfortunately in ME, the muscles behave differently and the difference in behaviour can be seen under a microscope. People with ME as described by Dr Melvin Ramsay at the time of the Royal Free outbreak are usually made very much worse, sometimes irreversibly so by GET.

Another problem is that people who get referred for CBT or GET may be tired all the time, be depressed, have an exhausting illness such as kidney disease, but generally they are well enough to travel to attend these courses. People who have largely recovered from ME or who are mildly affected may well find the courses helpful. But for a research study to be useful, an agreed set of parameters should be decided on before the research begins. It is ludicrous to use patients with a range of illnesses and then apply the conclusions to patients with a different disease entirely. For research into ME to be useful, a set of qualifying criteria must be agreed upon, and would have to include the severely affected who are too ill to leave their homes. This is where ME is tragic - in the dark, silent rooms where decades go by that people who have lost their childhood, their teen years, their education in much pain - are being missed. Many have to be tube fed because they are too ill to eat. It is patently absurd to say that GET or CBT will fix them up because Mrs Jones with arthritis found she was coping better after a course of it. You simply aren't comparing like with like.

Think of abdominal pain. There are loads of reasons for it - too much unripe fruit. Hangover. Ulcers. Appendicitis. Tonsillitis (in children). Foreign body. Dystentry. Liver disease. Gall stones. Kidney Stones. Tumours. Constipation. Miscarriage. Bladder infections. Infection. Food poisoning. Gangrene, and loads more. It would be madness to say that we will treat all abdominal pain the same way. Why? Because they are all different conditions and if you cut pieces of liver out to try to treat diarrhoea after a dodgy curry, you will be doing the sufferer a great disservice and very likely, considerable harm.

The strategy that actually helps is called PACING, which means doing a little then having a break, then doing a bit more and having another break and living within your own limits. It is the one thing that does no harm and which helps people get more done by the end of the day. Your body needs energy to heal itself and you waste it all on other activities, your condition won't improve. The thing is, most patients discover Pacing on their own. What people need is a proper diagnostic test and a treatment that works.

That is what the judicial review is about. We want money to go into research for an effective treatment rather than being told to cheer up or being bounced into an exercise program that may cause serious and irreversible damage.

If you want more information, there is a rather technical (in places) article written by ME Research UK here

It is time for change. People with other neurological illnesses such as Motor Neurone Disease or Parkinsons Disease or Multiple Sclerosis don't get told to cheer up, do a bit of exercise and you will be fine. Why on earth do ME sufferers have to put up with it? The court case is about this very issue.