4.0 out of 5 stars Informative book with the odd gap.
By
DrEMG on 12 Mar. 2017
Verified Purchase
This is an extremely well written book covering some of the recent unscientific aspects in the treatment of ME. It's insightful and informative but also rather superficial and biased. And it reflects some of the major problems that allowed a group of spin doctors to sell a ridiculous theory and totally inappropriate treatment (CBT/GET) for over 20 years.
Example: it does not define ME accurately (the definition offered by an activist is simply wrong). The lack of accurate information about this disease since 1995 has been a significant factor undermining both the understanding the illness and the assessment of treatments. Why did the authors not check? Because they are clearly fond of two people who spent more than a decade writing quite a lot of inaccurate things about the illness and those involved in research. All that did was to make experts, and bodies like the MRC, laugh. Critics of projects such as the PACE trial reading their long and winding essays knew that there would be errors, so even those with ME ended up playing 'spot the deliberate mistake'. But Dr Gibson was clearly been charmed by them. The MRC, NICE and whoever awarded an OBE and Knighthood to two of the spin doctors were not. Neither were the patients with ME about whom they wrote less than flattering things on the internet,
presumably because Gibson's heroes thought that challenging the misinformation about ME was a competition. Targets included the medical advisor to the ME Association who spent hours working for patients although he himself was ill. He wasn't perfect, but he was and remains the best medical advisor any UK charity has had since the death of Dr. Ramsay. Another target was a professor of Immunology who again, wasn't perfect, but who was hugely helpful behind the scenes. In short, having removed the effective opposition, we were left with doctors into a psychological approach on one side, and a few activists with little interest in checking facts, on the other. Both sides have refused to apologise but they need to.
Another gaping hole. The book doesn't mention the complete breakdown of the peer review system. Since 1995, UK doctors have been treated to a torrent of dodgy descriptions of the illness (basically ME is chronic fatigue and worry) as well as an avalanche of trials ignoring all methodological flaws before concluding that cognitive behavioural therapy and graded exercise are 'effective' at reducing the symptoms of CFS. Well, fatigue. What this lack of peer review did was to offer doctors and scientists in the UK (and Holland) one view of CFS (all symptoms are due to faulty beliefs about the illness, fear of activity, lack of fitness and the physiological effects of stress). So, we can't just attribute the mess to a group of prolific psychiatrists and group think. Patients and groups were constantly undermined by this small clique with an unfortunately habit of choosing weak arguments over strong ones. You get the picture.
And then there were the trolls who would attack anyone who challenged the activists. Well, the medical establishment cogitated and deliberated and wondered if all patients with ME were as strange? (No they're not).
Happily, the Americans have come to the rescue and they appreciate expertise. They know this is not a competition and it's all hands on deck. Together with determined patients who kept on fighting, we're making progress.
We're now debating using more accurate information. The conspiracy theories have been dumped. We have another chance.
I don't wish to leave people with the wrong idea. Gibson and Sherriffs's book is real contribution to the literature on ME. However, not everything is accurate and there are gaps. It's a basic analysis of what went wrong. A lot of information is sound, particularly about the biomedical research and the problems with the PACE trial. Overall, I really enjoyed it and would recommend it.
