Alem Matthees: how an Australian’s FOI request busted open a UK science scandal

by Sasha Nimmo

In September 2016, Queen Mary University of London (QMUL) was compelled to release the data from the 2011 PACE trial, a trial which examined the effect of graded exercise therapy and cognitive behavioural therapy against standard medical care.

West Australian Alem Matthees was one of many people who wanted a closer look at the information from the study.

In March 2014, he filed a UK Freedom of Information Act request for the data, but Queen Mary University of London (QMUL), the institution that sponsored the PACE study, denied his request. On 18 June 2014, Matthees requested an internal review, but QMUL again denied his request. On 15 Dec 2014, he filed a complaint to the Information Commissioner (IC). In October 2015, the IC ruled in Matthees’ favour that the researchers were required to release the anonymised data of the study. QMUL appealed but again lost their appeal in Aug 2016. (source)

QMUL spent 250,000 pounds to try to keep the publicly-funded data from the the public, according to an FOI request.

The information released revealed that ‘recovery’ rates for cognitive behavioural therapy and graded exercise therapy  (CBT/GET) are not statistically significant. There are glaring methodological and ethical problems with the study and the authors misrepresented their findings.

Matthees and others wrote a paper on the released data: A preliminary analysis of ‘recovery’ from chronic fatigue syndrome in the PACE trial using individual participant data.

Alem Matthees kindly answered questions:

As an Australian, how did PACE trial results published in the Lancet affect you?
I have not had much contact with health care professionals since the PACE trial results were published, but the PACE trial potentially affects all patients around the world, as the trial is widely promoted as ‘definitive’. As an Australian I have observed the CBT/GET approach slowly taking a foothold without sufficient skepticism applied to the more questionable aspects. I am concerned that our authorities are taking the research at face value, such as assuming that CBT/GET safely increase activity levels, despite the objective evidence actually showing no such increase.

Did you think your Freedom Of Information Act (FOIA) request would be successful?
It was difficult to predict the outcome of the FOIA request. I estimated that the chances were high enough to warrant an attempt but that the outcome depended largely on the judgement of the Information Commissioner’s Office. The more I researched the FOIA legislation the more I concluded that QMUL’s arguments were unsound.

What impact do you think the release of information will have on Australian policies and guidelines for treatment?
It is too early to tell what effect the data release will have on Australian policies and guidelines for treatment when these are still influenced by proponents of CBT/GET. Re-analyses of the data will most likely need to be published in peer reviewed journals before having an impact on Australian policies and guidelines.

What impact do you hope it will have here?
Hopefully at the very least there will be a significant downgrading of the claimed effects of CBT and GET. We have re-analysed the PACE trial data using the thresholds established in the published trial protocol and found that neither CBT nor GET significantly increase recovery rates at 52-week follow-up.

Furthermore, the 2.5 year follow-up from the PACE trial (published by the trial investigators) demonstrated no significant difference between groups in general, but this was misleadingly presented as the benefits of CBT and GET are “sustained”.

Evidence from the PACE trial and other trials of CBT/GET for ME/CFS also demonstrate no meaningful improvements to objective outcome measures or activity levels. This reality should be acknowledged by our health authorities.

Has this come at a cost to your health?
Pursuing the FOIA cost me much in time and energy. When combined with other factors such as physical over-exertion and sleep deprivation, it eventually contributed to a severe relapse.

Regarding the Australian studies, I do not have the time or energy to look at them in detail, but I am concerned that some Australian researchers are unaware that evidence points towards CBT/GET not increasing activity levels, or that attempts to increase them beyond our current capacity are harmful, as post-exertional symptomatology is a hallmark of ME/CFS and a result of biologically abnormal responses to exertion.

15 thoughts on “Alem Matthees: how an Australian’s FOI request busted open a UK science scandal

  1. Thank you for doing what you did at the cost of your own health. My daughter and I both have ME/CFS for almost thirty years so we have heard all of the ignorant comments from family, people in general and the medical community. We are all so strong to have survived this illness and are still determined to one day get well, hope it is soon. We are originally from England but have lived in Canada for almost thirty six years, I am so glad we were not subjected to the Pace Trial, we have however tried some of the non medical ways which were as successful as the Pace Trial, doing more harm than good. We will now wait for the good guys to do their research in the hope to make us well again.

    1. So true. Over 30 years I have improved from bedbound to just unable to lead as normal a life as my contemporaries without esperiencing a week or two of illness. My only therapy has been keeping within my possibilities always…lucky to have been able to.

  2. Alem is definitely a hero. From what I remember, he didn’t ask for all of the undisclosed data, but for a particular subset. I did a quick search and couldn’t find the info. Could you, or anyone, tell me exactly what he requested . preferably with the link? thanks

  3. Alem Matthees your ME hero 👏💑 thank you for all you have done for pwme 😇 sorry to hear about the damage caused to your health . Sending lots of TLC 💞 “HOPE” is what you have given to People with ME. 👏 and bring on the Good Science forward = best treatments for ME people could find a cure to live again! How good does that sound..

  4. This disease is caused by Lyme Disease.
    Transmitted by tucks, mosquitoes, pregnancy (infected mother to foetus), blood transfusions, sex.

    Is endemic and responsible for over 300 autoimmune disorders.

    Contact Lyme Disease Association of Australia for testing (via Igenex) and list of Doctors.

    Local Lyme tests are inaccurate. Denial of its existence results in lack of research, accurate testing and treatment.

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