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| NICE And Their Irrational CFS/ME Guidelines | ||
| NHS - Behind The Headlines August 1, 2009 Chronic Fatigue Syndrome. R v NICE Ex Parte Fraser and Short Dr Rita Pal  NICE is known for their irrational guidelines. First there was the guidelines for dementia treatment. NICE failed to understand that by ensuring treatment for dementia patients, independence would be extended and less finances spent on community care. This NICE guidance was challenged by Judicial Review. There was also the guidance for Anxiety Management where they recommended the first line treatment to be cognitive behavioral therapy. They failed to understand that at the time there was a 1-2 year waiting list for cognitive behavioural therapy. If NICE were correct, it would mean each patient would remain suffering for one year or more. I would say, NICE are never in touch with reality. To me it appears that so called "experts" who have never had any clinical contact with patients recently sit around a table and guffaw about creating these guidelines. Those who suffer as a direct consequence of these bizarre guidelines ie the vulnerable patient then continue their long journey to justify why the guidance is unjust. NICE is always challenged. The fact that they are challenged should lead us to question whether they are doing their job appropriately. The question here remains, who holds NICE accountable? The answer is probably no-one. This is what happened to the Guidelines for Chronic Fatigue Syndrome. These guidelines were challenged. Criticism against these guidelines were as follows :- The guidelines recommend that patients with chronic fatigue syndrome (also known as myalgic encephalomyelitis or myalgic encephalopathy), now commonly referred to as CFS/ME, should be offered a course of either cognitive behaviour therapy (CBT) or graded exerciseso-called 'activity management'. Dr. Charles Shepherd, Medical Director of the M.E. Association and author of Living with M.E., believes the evidence simply isn't there for recommending CBT and GET as first-line treatment for CFS/ME. In a letter published in the British Medical Journal on September 15th he points out that the published evidence for the effectiveness remains weak and inconsistent for both approaches, espically group CBT sessions. Based on evidence submitted by CFS/ME patients themselves, the chief medical officer's report concluded that CBT produced "no change" in 67% of cases and actually made the patients' condition "worse" in 26% of cases. In addition, around half of the patients reported that inappropriate exercise therapy had also made their condition worse. Now a group of psychologists has also criticised the NICE guidance for lacking the evidence to back up its recommendations and being too prescriptive, restricting the individualisation of treatment to the particular patient, which many feel is essential. The Challenge to the High Court is extremely well described by One Click. Sadly, the challenge was lost. I for one enjoyed the entertaining descriptions of Leigh Day and Jamie B. It is well worth a read. Not a bad choice by the Pro Bono Unit in terms of intelligence, all round appeal to women kind and court room presence - Conrad Hallin. Dr Malcolm Kendrick's statement was probably the highlight of the event. This is what he said after the judicial review. His statement probably sums up the current state of play :- “Trying to question the decisions that NICE make, in any forum, would be akin to citizen of the USSR challenging Stalin whilst he was in power. Your chances of success are slim as NICE act as judge, jury and - if they feel like it - executioner. They decide what evidence to include, which health economic unit to use to make their decisions. They decide on the experts to pick, they decide on every clinical and economic parameter, and their validity. There is no court above theirs, no body that can question their decisions. “If you attempt to take them to court - as happened with the ME/CFS guidelines - you cannot win. No judge will overturn the clinical and economic decisions of the 'experts.' The judge would, with justification, claim that they were unable to make decisions on matters beyond their expertise. But who else can? No-one. In the area of evaluation medical treatments, NICE are the supreme court and the Law Lords rolled into one. “Yet they are making fantastically important, life and death, decisions. “With ME/CFS I was asked to review the vast document that made up the evaluation. When it boiled down to it, there was no paper which evaluated Graded Exercise Therapy (GET) from a cost benefit perspective - not one. Yet NICE decided that GET was cost-effective in the treatment of ME/CFS. When it came to Cognitive Behavioural Therapy (CBT), there was only one paper which looked at this form of therapy from a cost-benefit perspective - that's right, ONE. This was a small study, on less than two hundred people - where half received therapy and half did not. “The two groups, however, were not evenly matched. The group receiving CBT had a lower quality of life at the start of the study than the group selected for treatment (a fatal flaw in any study). By the end of the study, the difference between the two groups (with regard to quality of life), was smaller than it had been at the start. Not only this, in the process of looking at the data NICE managed to get these figures the wrong way round, and thus they got the arithmetic upside down - which they admitted in the judicial review, but said it didn't make any difference. “Essentially, we had six hundred pages of padding, all - it seems - to create the sense that some massive evaluation of the evidence had taken place. When it boiled down to it, then entire decision making process to support the use of CBT and GET teetered upon one hopelessly flawed study which - even the authors admitted - had two unmatched populations at the start. Compounding this, NICE got their basic arithmetic wrong. Had I been marking this as an exam paper, it would have got an F minus. “It is difficult to look at this review and not feel that a reasonable process had not been followed. I have even heard is suggested that a decision had been made before the review had taken place. One thing is certain. Once NICE have made a decision, that's that. The oracle has spoken.” The judgment is available here. Dr Rita Pal ************* Related Links: * How The Judicial Review Of The CFS/ME NICE Guidelines Was Lost Jane Bryant, The One Click Group ************* |
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