By David Tuller, DrPH
I know folks are eager to hear more about what Iâ€™m learning in Australia. Iâ€™m finding it challenging to have meetings, prepare for talks, conduct interviews, promote the crowdfunding, keep up with my BMJ Open correspondence, and also write posts about whatâ€™s happening here. It will take a bit of time to catch up.
But I do want to provide at least some initial information about the role of Professor Andrew Lloyd of the University of New South Wales. Australian patients know that Professor Lloyd is the countryâ€™s most prominent proponent of the CBT/GET paradigm for treatment of what he prefers to call chronic fatigue syndrome. As an infectious disease doctor, he led the well-known Dubbo Infection Outcomes Study, with the main results published in The BMJ in 2006. The research documented that 11 percent of those experiencing a variety of acute infectious diseases progressed to a prolonged illness that met the Fukuda criteria for chronic fatigue syndrome.
I conducted a Skype interview with Professor Lloyd from Canberra on Friday, March 23rd, because he wasnâ€™t available to see me in person the following week in Sydney. Despite my dysfunctional relationship with technology, I managed to figure out how to download an app to record our call. Unfortunately, I lost my internet connection before I got to everything I wanted to ask, so he later answered a few questions via e-mail.
Nonetheless, we managed to speak for more than an hour. I appreciated Professor Lloydâ€™s willingness to take time at the end of the work week to answer my questions. When I first approached him by e-mail, I had let him know that I was not a fan of the CBT/GET treatment paradigm and the body of research cited as evidence for its purported effectiveness. Nevertheless, in our e-mail and Skype exchanges I found him to be an engaged and good-humored jousting partner.
Professor Lloyd pronounced himself â€œunfussedâ€ at the controversy over PACE, the impact of varying case definitions on research results, and criticism over his approach to treatment. (â€œUnfussedâ€ was a new word for me; we donâ€™t use it in American English, as far as I know, but I suppose in the first few days after I return home I will hear it 19 or 37 times.) At times, when I challenged or pressed him on some issue or other, he seemed to backtrack a bit, concede the point, or fudge his responseâ€”as when he told me he â€œmight haveâ€ cited PACE in the past as evidence for the CBT/GET approach but couldnâ€™t really remember. It is hard to take that statement at face value.
As is not uncommon with smart people, Professor Lloyd also seemed impressed with his own intellectual acumen. He sometimes took to â€œscience-splaining,â€ but Iâ€™m used to that from medical experts (including my late dad, an internist). I had heard from others that he has referred to himself as the â€œleading lightâ€ for the illness in Australia, and he said the same during our talk. As I reviewed the interview later, I listened for traces of humility or self-deprecation that would mitigate the impact of hearing someone describe himself in those terms, but I detected none. However, perhaps â€œleading lightâ€ is a fair assessmentâ€”at least in terms of his enormous influence on the debate in Australia.
Here are a couple of past posts from Health Rising about Professor Lloyd and his work. The first is a summary of a presentation he gave at the 2014 conference held by the CFS/ME Research Collaborative about the role played by acute infectious illnesses in triggering ME/CFS:
The second is a cogent commentary on Professor Lloydâ€™s advocacy of CBT and GET as treatments:
At this point in time, at least, Professor Lloyd describes his interventions in different terms than those used by the PACE authors and other members of the CBT/GET ideological brigades in the U.K. and the Netherlands. He dismisses the deconditioning hypothesis and appears to believe patients have a physiological disorder linked to aberrant neurological responses in the central nervous system. He hypothesizes that this phenomenon could be causing a form of hyper-sensitivity to stimuli. He thinks that a biomarker related to microglial activity in the brain could eventually be found but that investigations of blood in other parts of the body will ultimately prove fruitless.
He believes that patients who are disabled should be able to get benefitsâ€”as long as theyâ€™ve gone through a rehabilitative program first. He is willing to write the letters that people need to obtain those benefits, and many patients have depended on him for that service. Unlike the PACE authors, he does not argue that receiving social welfare or disability payments will reinforce patients in their â€œunhelpfulâ€ conviction that they have an organic illness.
His CBT/GET program is available in two â€œfatigueâ€ clinics in Sydney, although the treatment itself is delivered by psychologists and physiologists. Last week, I met with a dozen or so ME/CFS patients at a cozy cafÃ© in Newtown, a lively â€œinner suburbâ€ of Sydneyâ€™s and home to one of the clinics offering the Lloyd program. Many of them had attended one of the clinics and reported that their experience included some positive and some very negative aspects.
Almost all said they found the first part of the program, which focuses on establishing a baseline of manageable activity, to be quite helpful. Most had gone through multiple cycles of over-exerting themselves and crashing, and they said this training in how to pace themselves offered them useful skills that they still find valuable. Several also said that the clinic professionals were the first health care providers who acknowledged the seriousness of their illness, so they felt their experience had been recognized and validated.
They uniformly hated the second part of the program, which was focused on GET; either they couldnâ€™t do the prescribed physical activity, or they did it and it made them worse. No one said that GET helped reduce their symptoms or enhanced their well-being. Some said they were pushed to do more than they could and felt implicitly blamed for not getting better. In contrast, others reported that the health professionals did not take such an rigid stance and accepted that the illness imposed limits that could not be exceeded.
(I will write more about these issues and my interview with Professor Lloyd down the line. I just wanted to provide a flavor of what Iâ€™ve been finding out.)
In preparation for the meeting, a local advocate asked some of those who have attended the clinic to fill out a short questionnaire about their experiences. Because patients often depend on Professor Lloyd to fill out forms that affirm their disability, they generally wanted to remain anonymous. As an example, here are the responses from one patient. As you can see, this person found the program to be a very, very mixed bagâ€”helpful in some respects, disastrous in others. (I have edited slightly for clarity and have removed a few specific details to reduce the possibility that the person could be identified.)
What were your expectations of the program before attending?
The expectation I got were very mixed. The clinic had me expecting that following the program would lead to full recovery, with the additional benefits of learning how to adequately pace, manage symptoms and tackle the psychological aspects. When I realised that full recovery wasnâ€™t possible through the program (ie when PACE was effectively debunked), I brought it up with my referring specialist. He told me he never described it as a cure, which obviously conflicts with the clinicâ€™s message.
What was your experience of GET with the exercise physiologist?
The experience was professional and supportive, but ultimately misguided. Initially I was required to make detailed notes of my activity (ie, diarising my hourly activity) for a full fortnight, selfâ€reported, aside from the step count which was tracked using a pedometer. From that the exercise physiologist drew up a plan based on my current functioning and preferred exercise type (in my case walking).
Still have and continue to maintain those daily notes. Itâ€™s useful as a selfâ€feedback mechanism to reflect on how Iâ€™m pacing myself from a macro and micro perspective.
Did you increase/decrease your physical function/activity level overall? Please give details.
I was advised to set an ultimate goal of between 4,000â€6,000 steps per day. Being driven and motivated to recovery, I exceeded that goal in the first month of the program by averaging 6,500 steps per day. However, the next month averaged 4,500 steps per day. The following months 3,200 steps per day. You see the pattern here. The harder I tried the less activity I was able to do because I wasnâ€™t allowing adequate recovery time. The clinic always encouraged me to keep pushing my activity up, reminding me that was the path to recovery.
What was your experience with the psychologist of CBT?
Once again, the experience was professional and supportive, but ultimately misguided. The psychologist wanted to tackle my psychological challenges only as they related to the clinicâ€™s work of increasing my activity levels and ensuring that my mental faculties didnâ€™t deteriorate from a lack of mental activity. This meant ignoring the personal difficulties I was having with my then-[spouse] and also family failing to accept the gravity of my struggle with ME/CFS. So on the psychologistâ€™s recommendations I continued to push through and maintain my high level of mental functioning, leading to a monumental crash which left me housebound and unable to speak for two months.
What impact has the program had on your physical and psychological wellâ€being since you finished it?
Itâ€™s a complex question with no definitive answer because I cannot know what my life wouldâ€™ve been like had I not participated. What I can say is that my functioning has decreased significantly.
Physically: Prior to the two-month severe crash I had mild ME/CFS, and following that I have remained a moderate case. When I brought this up with the clinic they suggested it was because I didnâ€™t pace myself adequately. In hindsight, the impossible paradox is revealed â€“ the clinic wants me to slowly push my boundaries in order to facilitate a full recovery, yet when I inevitably push beyond my boundaries and crash then I must not have been following the program correctly.
Psychologically: Psychological wellâ€being has been damaged horribly. When I ought to have been focussed on adjusting my life around living with a longâ€term condition, and receiving psychological counselling aimed at the difficult process of grieving the loss of my old life, I was continually pushing and crashing. At the same time I was telling my [spouse] and family that PACE was the key to my full recovery, as I trusted that the scientific establishment wouldnâ€™t lie to me.
I ignored almost everything else in my life â€“ [spouse], social engagements, personal projects â€“ to focus on the program because I desperately wanted to recover and figured I could pick all that up again once I did. But my world crashed around me when my [spouse] walked out after realising I wasnâ€™t improving and wasnâ€™t going to. Iâ€™m still picking up the pieces of that earthâ€shattering change.
Would you recommend the program to others with ME? Why/why not?
Yes. As mentioned, the activity pacing and diary feedback mechanisms are very useful for symptom management. But I also caution them not to push beyond their boundaries on the clinicâ€™s advice.
What general comments do you have about the program?
My ultimate thoughts are that the program has helped me to recognise that I have hard limits which cannot be overcome through any amount of wellâ€planned graded exercise therapy combined with positive thinking. At the same time I feel grateful that some of the activity pacing tools they offered are useful for daily symptom management, but they should never have been sold as a cure.