PACE Trial: Chronic Fatigue Syndrome/Myalgic Encephalomyelitis

Baroness Hollins Excerpts

Wednesday 6th February 2013 Grand Committee

[Baroness Hollins]

My Lords, I also thank my noble friend Lady Mar for raising such an important topic. I have read the research very carefully in preparing my short contribution.

We know that some patients who develop symptoms of CFS/ME will recover fully but that the majority go on to have a fluctuating long-term condition. I agree with the noble Lord, Lord Alderdice, that there is no single cause for this condition. Some 10% to 12% of people who have glandular fever develop the symptoms of CFS/ME, but there are many other precipitants, too. It is a very distressing condition for people to have and is confusing and difficult for families, friends and employers, particularly because the condition may fluctuate in its effects so dramatically and vary in its severity. It is not surprising that people with CFS/ME may feel that they are not believed and that their family and friends are unsympathetic at times. Imagine living with an illness that fluctuates, recurs after mild exertion and is associated with what people describe as brain fog? As it stands, a very limited range of therapies are available and, understandably, this patient group has ended up feeling overlooked and neglected.

The greatest weapon against illness and disease is robust, peer-reviewed research. Research into both causation and the factors that sustain symptoms is important, as is research into effective interventions. I am particularly pleased that current biomedical research funded by the MRC is trying to understand some of the mechanisms at play, including by looking at mitochondrial function, autonomic dysfunction and sleep disturbance. It is essential that we continue to look at the best possible treatments.

I will speak briefly about the PACE trial, which of course most noble Lords have spoken about and which enrolled 640 participants. Just last week, the follow-up study, looking at recovery after one year, was published in the journal Psychological Medicine. Noble Lords may know that the trial showed that an average of only 13 sessions of CBT or graded exercise therapy, over just six months and as a supplement to good specialist medical care, had rates of recovery of 22%. My understanding is that, by “recovery”, the researchers included the fact that after a year these patients no longer met the criteria for CFS/ME. This would be heralded as a fantastic outcome for the treatment of MS, Parkinson’s disease or cancer. Only 8% of those receiving adaptive pacing therapy and 7% of those receiving just specialist medical care achieved the same degree of recovery. In other words, the successful treatments were three times more likely to lead to recovery than the comparison treatments. Of course, that was after just one year, but follow-up is continuing, and I look forward to hearing whether these results will be sustained. I hope the Minister will agree with me that it would be very useful for this study to be funded for follow-up for five years, particularly given the fluctuating nature of the condition.

Better outcomes are achieved for all illnesses, from heart disease and cancer to schizophrenia and depression, when the overall well-being of the patient—biological, psychological and social—is taken into account. That is not to say that there is no physical reason behind the onset of illness, or that physiological effects are not continuing to maintain or modify the disease process. My noble friend’s debate today is concerned with both health and care, including access to benefits. It is yet another reminder of the importance of a holistic approach to care, an intertwining of body and mind. This complex interaction has been acknowledged since ancient times but somehow, over the past 100 years, with the elucidation of many physical causes for illness, the mind-body connection has been somewhat forgotten. Thankfully, this connection has again been brought to the fore by the Government’s welcome commitment to parity of esteem between physical and mental health. The Royal College of Psychiatrists, of which I am a former president, has long been concerned about the physical effects of psychological stress and the psychological effects of physical stress. Interdisciplinary research—which brings together, for example, the neuropsychiatrist with the immunologist—is vitally important.

Could the Minister clarify whether the arrangements being made to ensure that evidence-based treatments, such as those tested in the PACE trial and recommended by NICE, are commissioned and that they do not fall through any gaps caused by what has been called an orphan status for this condition? To explain what I mean, CFS/ME can be classified under both neurological and psychiatric disorders for clinical purposes; it is not clearly claimed by any one specialist group as being its primary responsibility. This means that many people diagnosed with CFS/ME will not be referred to a specialist centre and that the treatment they need will just not be available. Research will shine more light on this condition and begin to distinguish whether subgroups of patients will be more responsive to different new treatments being evidenced and introduced.

Research is needed into all aspects of the illness so that more effective treatments can be found. This must include both biological aspects and any psychological factors that may sustain or lead to the further deterioration of the illness such as, for example, major life events, which are known to cause a relapse in CFS/ME patients. Thankfully, the MRC has recognised the past underinvestment in this poorly understood condition—or set of conditions—by highlighting it as a priority area for research. Through the particular efforts of Professor Stephen Holgate, the CFS/ME research collaborative mentioned by my noble friend will be launched in April, bringing together researchers from all relevant disciplines with patient groups and charities. This is so important. The future is looking brighter for people with CFS/ME and the constructive collaboration of people with different perspectives and contributions will, I hope, prove to be a major step forward.