‘I need to start listening to what my body is telling me.’: Does mindfulness-based cognitive therapy help people with Chronic Fatigue Syndrome? by Bridie O’Dowd & Gemma M Griffith in Human arenas 2020, July 16 [https://doi.org/10.1007/s42087-020-00123-9]
Research abstract:
Mindfulness-Based Cognitive Therapy (MBCT) was lightly adapted for participants diagnosed with chronic fatigue syndrome (CFS). The aim of the study was to explore participants’ experiences of the MBCT course, with a particular focus on how they applied MBCT to living with and coping with the symptoms of CFS.
Nine participants with CFS who completed the MBCT course were interviewed using semi-structured interview methods. Inductive thematic analysis, a methodology designed to generate themes from the ‘bottom up,’ was used.
Four superordinate themes were generated from the data: (1) awareness of unhelpful
behavioral patterns associated with CFS, (2) benefits of group solidarity, (3) use of mindfulness tools to facilitate shifts in behavioral patterns, and (4) a sense of change and agency.
Participants became aware of three specific transformative changes that contributed
to a more skillful way of living with CFS: development of acceptance, improved self-care and self-compassion, and reduction in heightened stress response. MBCT appears to enable people with CFS to actively work with their symptoms, and make transformative changes in their behavioral patterns, resulting in benefits to well-being.
Excerpts from Discussion:
During the course, participants described how they became aware of specific vulnerabilities that are particular to CFS, and with the support of the group and specific mindfulness tools, reported a change in habit patterns which maintain and perpetuate CFS, such as perfectionism, being driven, people-pleasing, and tendency to catastrophize. There were three very specific transformative changes that occurred as a result of the MBCT course, which were supported across the four superordinate themes. These were the development of acceptance, a cultivation of self-care, and a reduction in heightened stress reaction.
Development of Acceptance
Given the chronic, unpredictable nature of CFS and the lack of curative treatment, cultivating a stance of acceptance of “what is,” shifted the participants’ agenda from a goal of “getting rid” of their condition to working skillfully with it. Crane (2008) describes the goal-driven “doing” mode as being cognitively focused and future orientated. This creates a tendency to discrepancy monitor, that is, monitoring the mismatch between where one actually is and the goal of where one wants to be (Bishop et al. 2004; Segal et al. 2013). The participants developed awareness that this striving to close the gap of how they found themselves and how they wished themselves to be, often demanded large amounts of draining energy.
The shift to acceptance, as a valid mode of coping with CFS, was enhanced by the mutual, supportive learning environment of the class. For some participants, acceptance involved acknowledging the fundamental truth of their current disability. For others, it was a recognition of the impossibility of meeting previous high standards and a welcome letting go of the exhausting maintenance of habit patterns. After the course, participants recognized that these patterns such as perfectionism, people pleasing, and feeling guilty were not only counterproductive but also potentially instrumental in the etiology of their condition (Hambrook et al. 2011; Luyten et al. 2011; Van Houdenhove and Luyten 2008).
Cultivation of Self-Care
The extant research which explores MBPs for CFS populations reported significant shifts in self-reported measures of anxiety, somatization, and unhelpful cognitions and behaviors (Rimes and Wingrove 2013; Sampalli et al. 2009; Surawy et al. 2005). However only the latter of these studies measured and reported improvement in self-compassion scores (Neff 2003). This study showed that increased self-care and self-compassion were fundamental to the shift participants experienced in managing their CFS.
This shift to enhanced self-kindness appeared to arise from a willingness to step out of the driven, energy-draining personality traits of perfectionism, high standards, conscientious, driven working style, and a strong susceptibility to self-criticism (Hambrook et al. 2011; Luyten et al. 2011). The mechanisms by which the mindfulness training enabled this shift appeared to be threefold. First, there was an increased awareness and an intention to “listen” to symptoms rather than ignore them. This led to a more gentle, kindly, and forgiving attitude towards their bodies experiencing fatigue and pain.
Second, the participants developed metacognitive awareness (Bishop et al. 2004; Teasdale 1999), allowing them to observe their thought processes more clearly. This allowed them to recognize the critical, driven nature of their self-narrative and enabled them to create a kinder less judgmental inner-dialog. Third, the kindness and care developed within the group acted as a medium in which a “permission to self-care” was cultivated. This permission frequently translated into a license to rest, previously un-granted because striving and pushing was so ingrained and prevalent. This shift frequently resulted in protection and preservation and replenishing of limited energy.
Reduction in Stress Reaction
As the course progressed, many participants became aware of an exaggerated stress response, felt physically in the body as pain and fatigue, emotionally as anxiety, and cognitively as fast, racing thoughts. This awareness led participants to actively apply mindfulness to reduce their stress response. First, they found the breath gave them a sense of grounding, calming, stepping back, and providing rest from stressful experiences and reactions. Second, they found everyday mindfulness allowed them to shift attention from catastrophizing thoughts, which would inevitably generate a high stress response onto the more neutral actuality of what they were doing in that moment. Third, they developed a self-soothing inner-dialog that encouraged them to move attention to the breath, remember that thoughts are not facts, and recognize that there may be a habitually exaggerated response going on that they could disengage from. As a result, many of the group reported a reduction in pain and fatigue.
Cognitive dysfunction has been demonstrated during head-up tilt testing (HUT) in those with ME/CFS: worse scores on cognitive tests occur with increasing tilt angles and increasing complexity of the cognitive challenge. The aim of our study was to determine whether cognitive impairment persists after completion of HUT.
The current problem regarding Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) is the large proportion of doctors that are either not trained or refuse to recognize ME/CFS as a genuine clinical entity, and as a result do not diagnose it. An additional problem is that most of the clinical and research studies currently available on ME are focused on patients who are ambulant and able to attend clinics and there is very limited data on patients who are very severe (housebound or bedbound), despite the fact that they constitute an estimated 25% of all ME/CFS cases.
Illness severity often precludes attendance at healthcare facilities, and if an individual is well enough to be able to attend an appointment, the presentation will not be typical; by definition, patients who are severely affected are home-bound and often confined to bed.
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Background: Today, 24% of college and university students are affected by a chronic health condition or disability. Existing support programs, including disability services, within colleges and universities are often unaccustomed to addressing the fluctuating and unpredictable changes in health and functioning faced by students with severe chronic illnesses.
We studied 82 female patients who had undergone a 2-day CPET protocol. Measures of oxygen consumption (VO2), heart rate (HR) and workload both at peak exercise and at the 
Since the end of the 20th century, the Myalgic Encephalomyelitis / Chronic Fatigue Syndrome community tried to create medical credibility and patient visibility for a chronic, controversial disease with many symptoms, no cure, and no diagnostic test. Not taught in medical schools, it relied on television to make itself visible fighting stigma and prejudice, challenging the political system and the philosophical approach we use to think about illness itself, having patients re-appropriate the discourse. Keeping a cultural approach to health communication as a phenomenon that maintains, produces, and transforms health and illnesses, I analyze news, fictional and talk-show programs.
In doing so I will mainly focus on programs that aired at the turn of the century. This is not just for historical reasons, but for two other strong motives: if it’s true that new spaces, like the Internet and social media, opened up and gained strength in the meantime regular TV still maintains a broader and less topic-focused approach that can reach outside the intended foreseeable target audience; also, with regards to ME/CFS, some of the main communication issues are now still the same as in the beginning, and it is worth looking at the roots of how we talked about it to draw inspiration on what worked and what should be done differently.
Terri asked Dr. Anthony Fauci (Director of the National Institute of Allergy and Infectious Diseases and member of the White House Coronavirus Task Force), what NIH is doing to address Covid-19 “long-haulers” risk of developing ME and CFS and pointed out that there has been very little funding invested in research into ME and few medical providers know how to take care of people with ME. There are still no FDA approved drugs to treat ME.
NICE is aware of concerns about graded exercise therapy (GET) for people who are recovering from COVID-19. NICE’s guideline on ME/CFS (CG53) was published in 2007, many years before the current pandemic and it should not be assumed that the recommendations apply to people with fatigue following COVID19.
