Derek Pheby

Professor Derek Pheby is Visiting Professor of Epidemiology, Buckinghamshire New University, United Kingdom. Pheby initiated the establishment of the ME/CFS Disease Register in the UK by using a READ-code based algorithm on Electronic Medical Records which conformed to certain case definitions for ME/CFS. The ME/CFS Disease Register is used to recruit participants with ME/CFS in an unbiased way from a large population base. Likewise, he is attempting to establish a post-mortem brain and tissue bank for the study of myalgic encephalomyelitis/chronic fatigue syndrome.

Studies related to ME/CFS

 * 2014, Considerations in establishing a post-mortem brain and tissue bank for the study of myalgic encephalomyelitis/chronic fatigue syndrome: A proposed protocol."'ABSTRACT: BACKGROUND: Our aim...was to develop a protocol for a UK ME/CFS repository of high quality human tissue from well characterised subjects with ME/CFS and controls suitable for a broad range of research applications...FINDINGS: ...we developed the protocol presented here, which was designed to meet high technical and ethical standards and legal requirements and was based on recommendations of the MRC UK Brain Banks Network. The facility would be most efficient and cost-effective if incorporated into an existing tissue bank. Tissue collection would be rapid and follow robust protocols to ensure preservation sufficient for a wide range of research uses. A central tissue bank would have resources both for wide-scale donor recruitment and rapid response to donor death for prompt harvesting and processing of tissue. CONCLUSION: An ME/CFS brain and tissue bank could be established using this protocol...This initiative could revolutionise the understanding of this still poorly-understood disease and enhance development of diagnostic biomarkers and treatments.'"
 * 2014, Use of an online survey to explore positive and negative outcomes of rehabilitation for people with CFS/ME."'ABSTRACT: PURPOSE:...to build an understanding of reasons for the discrepancy between the notably mixed experiences regarding effectiveness reported in patient surveys and the RCT evidence about the efficacy of Graded Exercise Therapy (GET)....METHOD: An online survey conducted by the charity Action for ME generated qualitative data about 76 patient experiences of rehabilitation undertaken during or after 2008...CONCLUSIONS:... The negative themes indicate rehabilitation processes which contradict the NICE (National Institute for Health and Clinical Excellence) Guideline advice regarding GET, indicating that some clinical encounters were not implementing these.... Positive experiences of rehabilitation therapies include supportive communication with a therapist, treatment which included routines and goals, and value attached to baselines and controlled pacing. By contrast, factors leading to negative experiences include poor communication and support, conflict in beliefs about CFS/ME and rehabilitation, pressure to comply with treatment, worsening of symptoms, baselines experienced as unsustainable, and feeling blamed for rehabilitation not working.'"
 * 2011, A Disease Register for ME/CFS: Report of a Pilot Study."'ABSTRACT: BACKGROUND: The ME/CFS Disease Register is one of six subprojects within the National ME/CFS Observatory, a research programme funded by the Big Lottery Fund and sponsored by Action for ME. A pilot study in East Anglia, East Yorkshire, and London aimed to address the problem of identifying representative groups of subjects for research, in order to be able to draw conclusions applicable to the whole ME/CFS population...FINDINGS: Patients with unidentified chronic fatigue were identified in GP databases using a READ-code based algorithm, and conformity to certain case definitions for ME/CFS determined. 29 practices, covering a population aged 18 to 64 of 143,153, participated. 510 patients with unexplained chronic fatigue were identified. 265 of these conformed to one or more case definitions. 216 were invited to join the register; 160 agreed. 96.9% of participants conformed to the CDC 1994 (Fukuda) definition; the Canadian definition defined more precisely a subset of these. The addition of an epidemiological case definition increased case ascertainment by approximately 4%...CONCLUSIONS: Objective evaluation indicated that the aim of recruiting participants with ME/CFS to a Disease Register had been fulfilled, and confirmed the feasibility of our approach to case identification, data processing, transmission, storage, and analysis. Future developments should include expansion of the ME/CFS Register and its linkage to a tissue sample bank and post mortem tissue archive, to facilitate support for further research studies."
 * 2011, Social support needs for equity in health and social care: a thematic analysis of experiences of people with chronic fatigue syndrome/myalgic encephalomyelitis."'CONCLUSIONS: Changes in attitudes of health practitioners, policy makers and general public and more flexibly organised health and social care provision are needed to address equity issues in support needs expressed by people with CFS/ME, to be underpinned by research-based knowledge and communication, for public and professional education. Policy development should include shared decision-making and coordinated action across organizations working for people with CFS/ME, human rights and disadvantaged groups. Experiences of people with CFS/ME can usefully inform an understanding of equity in their health and social care.'"

Talks and Interviews

 * 2013, [[Action for ME] AGM 2013 part three - Research]
 * 2007, Speaker at the 2nd Invest in ME International ME Conference - Epidemiology of ME/CFS - DVD available

Online Presense
Derek Pheby Linkedin