Trial By Error: A Post About Andrew Lloyd

By David Tuller, DrPH

I know folks are eager to hear more about what I’m learning in Australia. I’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 what’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 country’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 wasn’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 Lloyd’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 “unfussed” at the controversy over PACE, the impact of varying case definitions on research results, and criticism over his approach to treatment. (“Unfussed” was a new word for me; we don’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 response—as when he told me he “might have” cited PACE in the past as evidence for the CBT/GET approach but couldn’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 “science-splaining,” but I’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 “leading light” 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 “leading light” is a fair assessment—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:

https://www.healthrising.org/blog/2014/11/22/infections-genes-chronic-fatigue-syndrome/

The second is a cogent commentary on Professor Lloyd’s advocacy of CBT and GET as treatments:

https://www.healthrising.org/blog/2015/05/16/the-decline-and-fall-of-an-mecfs-researcher-the-case-of-andrew-lloyd/

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 benefits—as long as they’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 “unhelpful” conviction that they have an organic illness.

His CBT/GET program is available in two “fatigue” 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 café in Newtown, a lively “inner suburb” of Sydney’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 couldn’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 I’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 bag—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.)

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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 wasn’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 clinic’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, self‐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. It’s useful as a self‐feedback mechanism to reflect on how I’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 4,000‐6,000 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 wasn’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 clinic’s work of increasing my activity levels and ensuring that my mental faculties didn’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 psychologist’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 well‐being since you finished it?

It’s a complex question with no definitive answer because I cannot know what my life would’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 didn’t pace myself adequately. In hindsight, the impossible paradox is revealed – 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 well‐being has been damaged horribly. When I ought to have been focussed on adjusting my life around living with a long‐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 wouldn’t lie to me.

I ignored almost everything else in my life – [spouse], social engagements, personal projects – 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 wasn’t improving and wasn’t going to. I’m still picking up the pieces of that earth‐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 clinic’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 well‐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.

Comments on this entry are closed.

  • Wayne Brissett 4 April 2018, 5:55 pm

    I agree about the “leading light” comment. When people have such inflated egos you often find that they become arrogant and closed to alternative viewpoints.

  • Carol Binks 5 April 2018, 3:51 am

    The description of treatment at the ME Clinic resonates as being very similar to Reports that I hear from people in the UK. For many people, who have been struggling to understand what is happening to them and facing disbelief from family, friends and Primary Care Doctors, it’s a relief to be met by medical professionals who recognise the symptoms that they are experiencing, understand that the symptoms are real, and who are sympathetic. Advice on Pacing is helpful for people who have been trying, extremely hard, not to ‘give in’ to their illness and haven’t yet understood that Pacing is what they need to do. They also meet other people with ME, in group sessions, who are facing the same personal and health challenges as they are, when they might not have known anyone with the same illness before. People describe finding camaraderie and making friendships.

    The downside to all of this, of course, is when CBT/GET come into the equation and people are told to continue with the prescribed activity ‘no matter how they feel’. By this time many patients have been lulled into a false sense of security by all the positives that they have already experienced at the Clinic, and as with the person in this report, they go along with instructions as they desperately want to get better.

    When I attended an ME Clinic, twelve years ago, I found the staff to be very friendly and understanding of my illness, but when CBT/GET were offered at my first appointment, I declined, as the whole concept seemed counter-intuitive to me from the start, even though I had no previous knowledge of anything to do with ME or its treatment. I felt insulted that a Psychological Therapy was being offered for something that was clearly physical, which seemed to automatically assume that I was incapable of analysing and adapting to my circumstances. I had already discovered that pushing myself beyond my boundaries made things worse, not better, and Graded Exercise Therapy sounded like something that I really shouldn’t be doing. On refusing these therapies the Clinic had nothing else to offer and I never returned. I have, however, during my eleven year involvement with a regional ME organisation, spoken to many people who did return.

    This is the problem that I see with the current situation in the UK and, it would seem from this report, in Australia. There are patients who want the NHS CFS Clinics to be scrapped completely and others who want to keep them as their experiences of them were good. If the patients who want to keep them were not harmed by CBT/GET this, of course, raises all sorts of questions. Professor Julia Newton, at Newcastle in the UK, reports that up to 40% of patients, referred to her, don’t have ME at all, but other conditions. It may well be that some patients do have conditions that are helped by GET. It might also be that, for some patients, pain and physical disability are less of an issue, than for others, and other symptoms cause them the most distress. This would mean that they can achieve a level of activity that the OTs consider to be acceptable, without suffering significant PEM. I have spoken to some people who didn’t crash completely during GET, but said that they felt much worse. When their course of treatment is completed they say that they then feel much better. Whether this is much better than they felt whilst doing GET, or much better than before GET is something that people are not always sure of when I’ve asked.

    That some people are irrevocably harmed by CBT/GET is reason enough to scrap it, as some countries have already done. Thanks for everything that you’re doing to achieve this David.

  • Adrienne 5 April 2018, 3:53 am

    It is great to see that Lloyd now “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.” On the basis of what he said during this interview it appears that Lloyd now recognises that the physiology of people with ME/CFS is compromised. Does this mean that Lloyd will introduce the use of physiological tools such as heart rate monitors at his clinics and in the UNSW “treatment” guides so as to ensure that patients pace within their physiological limits?

  • Adrienne 5 April 2018, 6:38 am

    Lloyd now “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.” this is good news and fits with what some of the bio-medical researchers are finding and is consistent with patients lived experience. I am confused however as to how Lloyd tallys his knowledge that the physiological systems of a person are compromised with the GET/CBT and cognitive activity therapy promoted at his fatigue state clinics and in the UNSW training material published online. Has Lloyd changed his views on how ME/CFS is to be managed? Does Lloyd now support the measures taken by patients to reduce their symptom load ie avoidance of stimuli, pacing within their energy envelope and pacing with a heart rate monitor? What steps does he recommend people with ME/CFS take to avoid further compromising their physiology? The NCNED advise that GET (as per the UNSW manuals that are based on PACE) are NOT safe due to the fact that people with ME/CFS are physiologically compromised. The Workwell Foundation, Physiologic et al recommend people with ME/CFS stay under their anaerobic threshold. Does he plan to introduce continuous heart rate monitoring or other physiological monitoring measures at the fatigue clinics to safeguard patients?

  • Adrienne 5 April 2018, 7:10 am

    Interesting that Lloyd “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.” Ignoring causation this view fits with what many of the bio-medical researchers are finding and what patients experience. I’m confused as to how Lloyd reconciles this view of ME/CFS with the practices and procedures at his clinics and the e-medical program he has distributed which are based on the PACE manuals. Is it Lloyd’s intention to introduce practices and procedures into the clinics that will safe guard the compromised physiology of future patients? The abnormal physiology in ME/CFS is easy to measure as Workwell, Physiologic et al have demonstrated with CPET tests both to threshold, to exhaustion and 2 day tests and physiological abnormalities are detailed in the ICC. Has Lloyd any plans to incorporate physiological measurements/monitoring/guidance into the practices and procedures at his clinics e.g. continuous heart rate based pacing? The NCNED recommends that due to being physiologically compromised people with ME/CFS do NOT exercise. What safe guards has/is Lloyd putting in place to ensure that people are phsyiologically healthy enough to do the GET recommended at his fatigue clinics.

  • James G 8 April 2018, 10:45 pm

    Hi David, thank you so much for all you are doing. As someone above said, please don’t feel like you have to rush to get things up on your website! Try and get a bit of rest time too – the flight here alone is exhausting, never mind all of the other travel and countless engagements you have on. I don’t think anyone will mind if your write-up of your Oz trip waits until you get back home and have recovered from the jet-lag.

    Many thanks for your work, we all appreciate it so much.

  • Alan Gurwitt 9 April 2018, 9:08 pm

    Andrew Lloyd is spewing the same nonsense as he did in the 1990’s when appearing on a panel in Cambridge MA at a IACFS/ME meeting. In reviewing the history of ME since the first epidemic occurred in 1934, several researchers have recently pointed to 1970 as the year when British psychiatrists began to preach that ME was either a form of “epidemic hysteria” or later a psychosomatic illness. Not now nor has it ever been such. Non-psychiatric physicians swallowed that nonsense without looking at the flawed evidence. Lloyd and his fellow travelers in the UK have refused to see what damage they have done. Thank goodness and David Tuller for exposing the pseudo-science that physicians around the world have perpetrated. Now we are back to recognizing the vast gaps in our knowledge of the serious disease known again as ME. with 40 years wasted on useless psychobabble.

  • Kathy C 10 April 2018, 7:13 pm

    I’m appalled that in 2018, there are still doctors who are clueless about ME. In 1988 I was diagnosed with CFS by the late Dr. Jay Goldstein.
    Back then PWCs had to watch out for the many doctors who would slap a diagnosis of Major Depression and prescribe antidepressants.
    What can be done to entitle us PWCs with credibility when we present articles to our docs about new scientific research?