Neil Sambell wrote a heartfelt letter of anguish to me in 1978. The half page letter took him 30 minutes to type with the one functional finger he could use; yet that letter changed his life and the lives of many others.
Neil explained he was severely immobilized by MS and wondered if the lifestyle-based, self-help program I had used to overcome my own cancer might help him. I replied I did not know and had no experience at the time with MS. However, I added that my approach involved doing all possible to build a healthy immune function and to gain the best from my capacity to contribute to my own healing. Knowing MS to be an auto-immune disease first and fore-most, I suggested the same program might be well worth trying. Neil did.
Over 40 years later, Neil is alive and well, writes fluently, has good mobility, a slight, almost imperceptible limp and a big smile. Neil’s outcome inspired me to agree to help others with MS who asked about our program; and then came George Jelinek.
Professor George Jelinek was Head of Emergency Medicine at Sir Charles Gairdner Hospital in Perth when diagnosed with MS in 1999. Being a research based academic clinician, George scoured the literature and discovered there was a lot of support for nutritional intervention along with other lifestyle factors. George gathered the research, added his own experience and published a book for which he asked me to write the Foreword.
From there it seemed a natural fit; George had the MS specific knowledge and personal experience, the MS program that he put together in his book was very similar to the one we used for people with cancer, and we had the experience with running intensive Residential programs. George accepted the offer to help establish MS specific programs in 2003 with myself and my wife, Dr Ruth Gawler who has expertise in Mind-Body Medicine.
A research evaluation of the new program was instigated from day one.
All of this is mentioned as it portrays a normal progression. Clinical observations of exceptional results need first to be noticed, and then tested. That is what research does. If we had waited for research to completely validate the MS program before we started, in all likelihood we would still be waiting. In fact, the research George set up provided remarkable results.
What follows is intended to bring together key research papers investigating the potential role for the practices of relaxation, mindfulness and meditation amongst people with MS. This is not intended as an exhaustive review, rather a good, representative sample of the published research in this field. We start with results of research into the program I helped to establish with Prof Jelinek and my wife, Dr Ruth Gawler.
Here is the basic issue. According to most measures for people affected by MS, quality of life usually deteriorates around 10% over 5 years. However, George’s investigations found attending the residential retreat promoting lifestyle modification and featuring deep relaxation, mindfulness and meditation had a significant short-medium term positive effect on quality of life for people with MS.
Participants showed significant improvement in HRQOL at one year and 2.5 year follow-up with significant gains in overall quality of life, physical health composite and mental health composite.
Li MP, Jelinek GA, Weiland TJ, Mackinlay CA, Dye S, Gawler I. Effect of a residential retreat promoting
lifestyle modifications on health-related quality of life in people with multiple sclerosis.
Qual Prim
Care. 2010;18(6):379-89. PMID: 21294980.
https://pubmed.ncbi.nlm.nih.gov/21294980/
After 5 years the gains were even better. By then data had been collected on nearly 300 participants. Each completed a standard, well-validated 54-item questionnaire, the MSQOL-54; at 1 and 5 year follow up. The only intervention provided was the 5 day retreat, although each group had group support via regular email after the retreat.
The results were remarkable! Not only had this group of people with MS stopped deteriorating, they rapidly began to get better as shown by the first data published, and that improvement continued to the five year mark. There was highly significant (p<0.001) improvements at one year in mental health of about 12%, physical health 19%, and quality of life 11%. At five years the benefit continued to accrue, with highly significant (p<0.001) improvements in mental health of about 23%, physical health 18%, and quality of life 20%.
In this 2014 paper, the authors observe MS is known to be adversely affected by several factors including stress and therefore decreasing MS morbidity and improving quality of life is meditation.
Therefore, a literature search of meditation being used in MS was conducted. Twelve pieces of primary literature fitting the selection criteria were selected: two were randomised controlled studies, four were cohort studies, and six were surveys. The review observed current literature (2014) varies in quality; however common positive effects of meditation include improved quality of life (QOL) and improved coping skills.
The authors concluded all studies suggest possible benefit to the use of meditation as an adjunct to the management of multiple sclerosis. They suggested additional rigorous clinical trials are required to validate the existing findings and determine if meditation has an impact on disease course over time. Neurol Res Int. 2014
More recent findings from the ongoing HOLISM study compare health outcomes of people with MS coming to the YVLC retreat programs, with those who did not engage with self-help resources.
This 2015 study of 2233 participants recruited online compared health-related quality of life, fatigue and depression risk between people who had, or had not, attended a Yarra Valley Living Centre week-long retreat, read the book ‘Overcoming Multiple Sclerosis’ or visited the Overcoming MS website (www. overcomingmultiplesclerosis.org).
The results were remarkable, showing people who attended a retreat program had physical-health quality of life scores 18 per cent higher (on a scale of 0 to 100), and mental-health quality of life scores 14 per cent higher, than those who did not attend.
Even more so, people who attended a retreat program, read the book and accessed the website had 19.5 and 15.6 better physical-health and mental-health quality of life scores, respectively, than those who did not attend.
The research team noted that there had been a “paradigm shift” in the management of chronic diseases, towards a patient-centred approach of self-management and prevention.
“People who are proactive in their health may achieve better outcomes than those more passive,” they said in the paper.
Indeed, the study’s depression outcomes were particularly striking, showing that depression risk among retreat program attendees (8.6 per cent) was around half that of the whole sample. Further analysis showed that no engagement with the retreat program, book or website was associated with tenfold higher odds of depression risk.
Dr Jelinek said the findings, that people using the three resources had one-tenth the risk of depression, were “astonishing”. “Roughly every second person with MS will have depression and to have such a dramatic fall in incidence of depression is really quite startling.” “No anti-depressant ever achieves that.”
Lack of engagement also found nearly threefold higher odds of clinically significant fatigue. This is a crucial issue for people with MS as 85 per cent report significant fatigue, and for most, it is the most disabling symptom they have. Professor Jelinek said the findings showed that people were one third less likely to suffer fatigue, a significant problem not successfully treated with medication, if they engaged in the three educational resources compared to those who did not.
In the study discussion, researchers noted the role of patient empowerment in dealing with MS. “Rather than the effect of lifestyle modification itself, or perhaps additional to that effect, perceived benefits for health-related quality of life, depression and fatigue may arise from participants’ level of empowerment or self-efficacy,” they said.
“Empowerment is both a process and an outcome—‘‘a process to increase one’s ability to think critically and act autonomously…an outcome when an enhanced sense of self-efficacy occurs as a result of the process’’. “This is distinguished from a patient simply becoming more compliant.”
They added that actively engaged patients may also have a greater understanding of their condition, a better relationship with their doctor, be more likely to attend appointments and stick to their treatments – leading to better outcomes.
“In general, in medicine we significantly underestimate and underutilise people’s own resources in dealing with their illness,” Professor Jelinek said. “We expect people to become compliant.”
Retreat programs such as those run by the Yarra Valley Living Centre also gave people connectedness by providing a supportive environment, the benefits of which can be profound. “The whole basis of the retreat program is that people become the captain of their own health ship,’’ he said. Neurol Sci
Three studies (n = 183 participants) were included in the final analysis. Statistically significant beneficial effects relating to quality of life, mental health, and selected physical health measures were sustained at 3 and 6 month follow up.
The authors concluded from the limited data available, MBIs may benefit some MS patients in terms of QOL, mental health, and some physical health measures. They added further studies are needed to clarify how MBIs might best serve the MS population. BMC neurology
Twelve RCTs including 744 PwMS were eligible for inclusion in this systematic review, eight had data extractable for meta-analysis; n=635. Ethnicity, socioeconomic status, comorbidity and disability were inconsistently reported. MBIs varied from manualised to tailored versions, lasting 6–9 weeks, delivered individually and via groups, both in person and online. Only three adverse events were reported.
The authors concluded MBIs are effective at improving mental well-being for people with MS. More research is needed regarding optimal delivery method, cost-effectiveness and comparative-effectiveness.
Journal of Neurology, Neurosurgery &Psychiatry
150 adults with relapsing-remitting or secondary progressive MS were randomly assigned to the intervention - a structured 8-week program of mindfulness training.
This trial provides Class III evidence that MBI compared with UC improved HRQOL, fatigue, and depression up to 6 months postintervention. In addition, the findings demonstrate broad feasibility and acceptance of, as well as satisfaction and adherence with, a program of mindfulness training for patients with MS. The results may also have treatment implications for other chronic disorders that diminish HRQOL. (Neurology)
The results of this 2009 study revealed that compared with the control group, patients with multiple sclerosis in the experimental group who practiced the progressive muscle relaxation over eight weeks, experienced higher quality of life in physical and mental dimensions. J Clin Nursing
The authors of this 2014 study point out there is a well-established adverse reciprocal relationship between stress and multiple sclerosis (MS). However, stress management in these patients has been parsimoniously studied. In this parallel randomized controlled trial, relapsing-remitting MS patients were randomly assigned to undergo either an 8-week stress management program (n = 31; relaxation breathing and progressive muscle relaxation, twice a day) or not (n = 30).
In patients in the intervention group, perceived stress and symptoms of depression were significantly decreased after 8 weeks of relaxation. Repeated measures analyses showed significant group-by-time interactions for both the number of weekly symptoms and the mean intensity per symptom.
Archives of Clinical Neuropsychology
Twenty-five MS patients completed the MBSR training and psychological measures, of which 16 patients completed the cognitive tests. Significant improvements were found in depressive symptoms, quality of life, fatigue, mindfulness skills, and self-compassion. Of the cognitive tests, performance on a visual spatial processing test significantly improved after the intervention. Overall, this pilot study showed promising results of the effects of MBSR on reducing psychological distress, and it suggests MBSR might improve cognitive functioning in MS patients. Mindfulness
Chronic pain is a common symptom in people with multiple sclerosis (MS) and often requires a multimodal approach to care. The practice of mindfulness has been shown to decrease the experience of pain in other conditions, yet little is known about the relationship between mindfulness and pain in people with MS. The objective of this cross-sectional survey of 132 people with any type of MS was to evaluate the association between pain interference and trait mindfulness in people with MS.
The relationship between pain and mindfulness was found to be clinically meaningful and highly significant. These results suggest a clinically significant association between mindfulness and pain interference in MS and support further exploration of mindfulness-based interventions in the management of MS-related pain.These results support further exploration of mindfulness-based interventions in the management of MS-related pain. Int J MS Care.
This study aimed to describe website traffic and qualitatively analyse an e-health community discussion forum for people affected by multiple sclerosis visiting the Overcoming Multiple Sclerosis (OMS) website.
This mixed methods study combined descriptive analysis of website traffic over 7 years and 1 month, and qualitative analysis of 1 week of posts in the meditation topic, coded into theme groups using qualitative thematic analysis.
There were 166 meditation topics posted with 21,530 initial views of primary post and 785 sub-post responses. Meditation posts and sub-posts received 368,713 replies. Number of views increased from 4,684 in 2011 to over 80,000 in 2017, a considerably greater rate of increase than overall traffic.
Qualitative analysis of posts on the meditation forum identified themes of barriers and enablers to utilization of meditation resources. Enablement themes dominated, observed across six of the seven theme groups with various forms of positive social and emotional support to learn and practice meditation. One theme, negative emotion, was identified as a barrier.
The OMS peer-to-peer patient online discussion forum serves important functions in encouraging, educating and enabling its growing online community. Our analysis may help improve and innovate online support for lifestyle management in many chronic diseases.
Informatics for Health and Social Care
This exploratory efficacy study examined the effects of Healing Light Guided Imagery (HLGI), a novel variant of guided imagery, compared with a wait-list control in patients with relapsing-remitting multiple sclerosis.
Patients who completed HLGI (N = 9) showed significant reductions in depressed mood and fatigue and showed significant gains in physical and mental quality of life compared with journaling (N = 8). Our results suggest that HLGI can improve self-reported physical and mental well-being in patients with relapsing-remitting multiple sclerosis.
These results suggest a clinically significant association between mindfulness and pain interference in MS and support further exploration of mindfulness-based interventions in the management of MS-related pain.
These results suggest a clinically significant association between mindfulness and pain interference in MS and support further exploration of mindfulness-based interventions in the management of MS-related pain.
This randomised trial assessed the potential effectiveness and cost-effectiveness of a specially adapted Skype distant-delivered mindfulness intervention, designed to reduce distress for people affected by primary and secondary progressive MS.
Forty participants were randomly assigned to the 8-week intervention. Distress scores were lower in the intervention group compared with the control group at postintervention and follow-up. Mean scores for pain, fatigue, anxiety, depression, impact of MS were reduced for the mindfulness group compared with control group at posttherapy and follow-up. There were no differences in quality-adjusted life years, but an 87.4% probability that the intervention saves on service costs and improves outcome.
Bogosian A, et al. Distress improves after mindfulness training for progressive MS: A pilot randomised trial. Mult Scler. 2015 Aug;21(9):1184-94.
https://pubmed.ncbi.nlm.nih.gov/25767124/
139 participants were randomly assigned to an MS-specific online mindfulness meditation intervention or to a psychoeducational (active control) group. Participants were assessed for QOL, depression, anxiety, sleep problems, and fatigue, at three different times: at recruitment, after 2 months, and after 6 months.
In comparison to the control group, the experimental subjects reported higher QOL and lower depression, anxiety, and sleep problems at the end of intervention. However, after 6 months these group differences were no longer significant.
An online MBI could be an effective psychological treatment for the promotion of well-being in MS in short-term. However, the lack of lasting effects requires the development of new strategies to support long-term changes. Mult Scler.
Thirty people with various forms of MS were 2:1 randomized to either active training (one hourly phone session per week) or a control condition of initial instruction only (with no further training) for six weeks.
Those in the mindfulness training group showed significant improvement in cognitive measures of information processing, along with greater reduction in fatigue, depressive symptoms and improved sleep quality after the mindfulness training. Fidelity to daily meditation practice was greatest for those who were initially seeking stress reduction training.
The authors concluded providing instruction and practice through a telemedicine platform greatly improves access and lowers the cost of this symptomatic treatment approach.
The aim of this meta-analysis of 15 randomised controlled studies was to estimate the overall effects of online MBIs on mental health. Results showed that online MBIs have a small but significant beneficial impact on depression, anxiety, well-being and mindfulness. The largest effect was found for stress, with a moderate effect size.
For stress and mindfulness, analysis demonstrated significantly higher effect sizes for guided online MBIs than for unguided online MBIs. In addition, effect sizes for stress were significantly moderated by the number of intervention sessions.
The researchers concluded their findings indicate online MBIs have potential to contribute to improving mental health outcomes. Clinical Psychology Review
Previous research has shown one in five Australians (21%) have taken time off work in the past 12 months due to feeling stressed, anxious, depressed or mentally unhealthy. Workers who took part in this 30 day app trial were assessed over 12 months and reported fewer depressive symptoms while scores for workplace performance, resilience and wellbeing had improved.
“This is the first time researchers have ever been able to achieve reductions in depression incidence using an app alone,” claimed the lead author Dr Mark Deady.
There is a solid evidence base for mindfulness and meditation being used to help people affected by Multiple Sclerosis (including their carers). These interventions can reduce the associated symptoms of MS such as fatigue and mobility issues, along with reducing stress, anxiety and depression, as well as assisting in actual recovery.
Also, there is good evidence online mindfulness - based programs have positive benefits and that these benefits are increased with the support of an on-line guide or mentor. Further, the evidence concludes increasing the number of guided sessions increases the measured benefits.