Suppose you must write a guideline about something, what would you do? Would you invent the wheel again or would you look around and see if someone else has made a guideline about the same subject? Would it then be an idea to read it, mention that you have read it and change it if you think changes are needed? All quite simple, but did NICE do this with their ME guidelines? Uuhhm, NO. Why not, well, that is a really good question. If you read their guidelines you quickly get the impression it has something to do with competing interests. Or an Internet phobia.
So what will you do if you write a guideline about a subject which by many doctors is still viewed as controversial, even though the WHO has recognised it as a neurological disorder a long long time ago? You will look at both sides, people who think it is a mental health issue, certain psychiatrists, and you look at the other side of the coin, i.e. people who know it is a physical illness. Not that difficult, but wrong again. Only the idea that it is a mental health issue features (very) strongly in the guidelines.
Furthermore, what does NICE say on their own site about the guideline: “2007 New NICE guideline to improve diagnosis and management of chronic fatigue syndrome in adults and children.”
So the idea is that it should help, but if you start reading it becomes clear it is more of a hindrance. For example patients with severe ME should be referred to a specialist, but which one? To an ENT specialist if they have hypersensitivity to noise? An eye specialist because of hypersensitivity to light? And what about the extreme muscle pains, who would be the best to see about that? Not to mention the cognitive dysfunction as it is called, so difficulty with for example information processing or concentration, so who should you see about that? And what are they going to do about it, as we all know there is no cure for ME.
Recently, there was the Gibson Inquiry in the UK into ME. It got quite a few things wrong but also some things right. One of them was that it acknowledged that there were many diseases under the umbrella CFS/ME. So you would think, NICE has read that and will solve that. Might even have a look at the Canadian guidelines, as they were designed by a group of international experts, to address this problem. But no, the Canadian guidelines were forgotten and not looked at. Again the idea of conflicting interests crops up.
So instead of a whole list of criteria, as the Canadians came up with before you can diagnose ME, fatigue and a sore throat is enough. So no muscle pain, no cognitive disfunction, no noise intolerance etc. This is what is called widening of the umbrella. So from now on many more people will have ME and that is really a bad thing. For two reasons.
The first is that there is no cure for ME (yet), so it will mean that many people, who don’t have ME but have another illness with fatigue, that we might actually be able to cure, if we would get the diagnosis right, won’t be cured.
And secondly the flog of psychiatrists/psychologists, who think you can cure a neurological disease with hours of talking, will continue their therapy. And so people who actually have ME will be left in the dark again. All the money will go down the psycho babble drain and will be wasted. Exactly what is happening right now. But hey, who is to complain about vested interests?
And the GPs, what will they think? Well, many are too busy to read a guideline in the first place, and the adagio, keep it short and simple doesn’t apply to any of the NICE guidelines, no matter what the subject is. If you want to read them all, you need study leave for a year. Some say, the whole idea is that GPs won’t read the guideline so no one will have a critical question as they are undesirable. So what will GPs do? Either ignore the guideline completely or just read the conclusion, not really critical reading I agree, and that is the purpose of big fat guidelines. Strange, but true.
And what about the patients? As Freud would say, the therapist is God, he knows it all, and the patient may only listen and must obey. And the same applies to this guideline and to all the articles about talking someone with a neurological illness back to full fitness. Please don’t think about it, you only believe this nonsense after many years of Med School.
Have a NICE day,