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Freedom of information: can researchers still promise control of participants’ data?

BMJ 2016; 354 doi: https://doi.org/10.1136/bmj.i5053 (Published 21 September 2016) Cite this as: BMJ 2016;354:i5053

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PACE ignored mitochondrial dysfunction

I disagree with Nigel Hawkes' opinion that the 2011 PACE trial, which included 641 patients is the most important research to date into treatment for chronic fatigue syndrome or myalgic encephalomyelitis.1,2

The most important research to date is the discovery by John McLaren-Howard, Sarah Myhill and Norman Booth that chronic fatigue syndrome is due to mitochondrial dysfunction. The more severe the disability - the more severe the mitochondrial dysfunction. 3-5

Dr Sarah Myhill’s book "Chronic Fatigue Syndrome “It’s mitochondria, not hypochondria” is helpful.6 Like migraine patients, chronic fatigue syndrome patients benefit from following low allergy diets, taking general and specific nutritional supplements, and detoxification of toxic metals such as nickel from jewelry and cadmium from tobacco smoking. Patients also need to avoid alcohol and the use of contraceptive or menopausal hormones as the female/male sex ratio in chronic fatigue syndrome is about three to one.

It is unfortunate to worry patients suffering from chronic fatigue about the merits of either behaviour or exercise therapy without first attempting to investigating and treating important biochemical reasons for their condition. No good mechanic would try to accelerate a car which has a faulty engine needing repair.

Freedom of information should include the most helpful information for patients.

1 Hawkes N. Freedom of information: can researchers still promise control of participants’ data? BMJ 2016;354:i5053.
2 White PD, Goldsmith KA, Johnson AL, et al. PACE trial management group. Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. Lancet2011;377:823-36.. doi:10.1016/S0140-6736(11)
3 Myhill S, Booth NE, McLaren-Howard J. Chronic fatigue syndrome and mitochondrial dysfunction. Int J Clin Exp Med. 2009;2:1-16.
4 Booth NE, Myhill S, McLaren-Howard J. Mitochondrial dysfunction and the pathophysiology of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS). Int J Clin Exp Med. 2012;5(3):208-20.
5 Myhill S, Booth NE, McLaren-Howard J. Targeting mitochondrial dysfunction in the treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) - a clinical audit. Int J Clin Exp Med. 2013;6:1-15.
6 Myhill S. In "Chronic Fatigue Syndrome It’s mitochondria, not hypochondria.” 2014 Hammersmith Health Books, London PP 44-72.

Competing interests: No competing interests

22 September 2016
Ellen C G Grant
Physician and medical gynaecologist
Retired
Kingston-upon-Thames. KT2 7JU. UK