CFS Research

I wish to write two books based on my PhD research and the articles in preparation: a reference text for practitioners and a lay book. These are separate from the CFSTP manuals and other materials but could be used to draw awareness to the CFSTP. 

A primary goal is to supervise a team of researchers who would repeat the phenomenological investigation of CFS, which I established in my PhD, and extend this research to include men and a focus on vulnerable ethnic groups.

Given the opportunity, I would like to update my review of the literature on CFS and publish a review article. This could be done in collaboration with a research student.

To investigate the social, environmental and biomedical epidemiology of CFS in men and women is an area of deep interest I would like to pursue. This will require collaboration with at least one epidemiologist.

I would also like to conduct a population-based study of the diagnosis patterns of CFS amongst men and women.

After I have published my PhD findings with respect to the adequacy of the present diagnostic criteria for CFS, I would like to see alternative diagnostic criteria developed, applied and the effectiveness of these new criteria assessed and validated.

CFS Programmes

In light of my research and the experience gained from working with clients over the past two years, I believe it would be possible to create and research management and treatment programmes for CFS. An awareness that it will be important to assess the effectiveness of such programmes underpins my approach and I believe that such assessment will generate research opportunities.

My research suggests that successful management and treatment programmes for CFS need to be multidimensional and interdisciplinary in order to engage with the somatic and psychological dimensions of the disorder. 

Very limited successes have been reported by existing studies. Amongst these successes, however, have been combinations of allopathic and complimentary medicine. This approach may stand to be productive. 

Within CFS programmes, it will be necessary to assess the effectiveness of each component and its interactions with the programme as a whole. This assessment will entail the use of qualitative and quantitative methods employed separately and in tandem. Such a programme will need to be carefully managed. Decision-making processes will be of paramount importance.

Research suggests that contextually sensitive language and models for service delivery are critically important to the success of interventions with CFS patients. Issues of communication are critical.

CFS often involves co-morbidity with other functional and somatic disorders, seasonal affective disorder, multiple chemical sensitivities, anxiety and depression. These co-morbidities will need to be carefully monitored and accounted for.

First steps in the intervention process with CFS clients necessarily involve establishing a trusting relationship and clearly communicating to clients that they are being heard. Narrative therapy is an applicable approach to this process.

My research suggests that Gendlin’s body inclusive psychotherapeutic approach to emotional awareness, combined with mindful awareness, and other approaches to emotion regulation need to be part of CFS programmes.

To recover successfully, CFS sufferers need to be able to accurately access their own levels of motivation and monitor their activity level accordingly. This involves the selective use of ‘self-supervision’. Both the illness experience and the recovery process require the ability to manage change.

Aspects of cognitive behavioral therapy and solution-focused brief therapy work well to facilitate CFS clients to reassess certain beliefs, manage their illness experience and prepare for life after recovery.

Evidence from participants of my research strongly suggests that resilience is essential to recovery. Illness is a stressful life event and in the case of CFS it often involves either acute or cumulative trauma. Cultivating resilience, particularly where trauma has occurred, is a necessary component to a CFS programme. 

Both my research, and experience with clients, suggests that carefully graded sensory stimulation (proprioception and kinesthesia in particular), delivered in an easily accessible manner, is a crucial component in any intervention programme. Internet based tools that can deliver this stimulation to clients in their homes would be the ideal. These tools need to be designed so that the client can monitor their ability to hold their attention on the stimulation delivered, assess their ability to integrate this stimulation and choose the level of stimulation and the length of time involved.

Establishing the appropriate introduction of physical activity is of particular concern given the fear that has often resulted from inappropriate interventions of this kind. Although a necessary component to recovery, the inappropriate use of physical activity can cause symptom exacerbation. Establishing how to change behavior and beliefs with respect to exercise and determining how to introduce movement that is energy enhancing will be of critical importance. Disciplines such as Feldenkrais, Qigong and yoga therapy and dance are highly applicable.

Nutrition is also an important factor in the management or treatment of CFS.