Derek Pheby

Dr. Derek F. H. Pheby, BSc, MB, BS, LLM, MPhil, FFPH, is a Visiting Professor of Epidemiology, Buckinghamshire New University, Wycombe, England, United Kingdom. He served as the Project Coordinator of the National ME Observatory, a collaborative project involving three universities, aiming to fill gaps in research knowledge, as well as the scientific coordinator of, EUROMENE, a European research network on ME, with some thirty participating institutions in fifteen countries. He was a former member of the Chief Medical Officer’s Working Group on CFS/ME and former trustee of Action for ME.

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.'"
 * 2010, Severe ME/CFS in Adults-A report from the CHROME Database"'Abstract - BACKGROUND: Case History Research on ME (CHROME) was established in 1994 to undertake research on severely affected patients. Since 1995 CHROME has collected data on volunteers with severe ME/CFS. All are medically diagnosed, conform to Fukuda criteria, are or  were  house-bound, and ill for at least two years. Participants complete initial and annual follow-up questionnaires, and report their condition at onset of illness, a year previously, on recruitment, and annually thereafter. METHOD: We report symptom severity and ability to undertake activities of daily living in 324 participants recruited between 1995 and 1998, their evolution through time, and, for later onset (age  17+) subjects, changes occurring between recruitment and the latest questionnaire. Significance was assessed using the McNemar test or its binomial equivalent. RESULTS: For most  features, subjects deteriorated between onset and recruitment, with subsequent improvement, often slow  and uneven, among later onset cases. Complete recovery was unusual. There were marked individual variations, and many subjects remained severely incapacitated or deteriorated. All features examined were more prevalent and severe in patients with a younger age of onset. Age at onset was bimodal, with peaks at 11-20 and 31-40. Most subjects, at recruitment, had been ill for 2-10 years. The proportion of early onset cases rose significantly in the mid-1980s. CONCLUSIONS: Caution is necessary in interpreting the results, given problems of self-selection, recall bias, and subjective interpretations of symptom ratings. It is unclear whether the reported trends are inevitable features of ME/CFS, or perhaps due to poor management at the outset."
 * 2009, Risk factors for severe ME/CFS (Full Text)
 * 2007, The Development of an Epidemiological Definition for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome"'Abstract - 'An epidemiological case-definition was developed to distinguish myalgic encephalomyelitis/chronic fatigue syndrome from other chronic fatiguing conditions by evaluating the discriminatory potential of different criteria from previous definitions. A two-part model was derived using consensus and discriminant analytic approaches. The optimal discriminators for the first part were severe debilitating fatigue affecting physical and mental functioning, a reduction in activity to less than 50% of the patient's premorbid activity level, and muscle discomfort (sensitivity 92%, specificity 66%). The variables for the second part included a reduction in activity to less than 50% of the patient's premorbid activity, myalgia, generalized muscle weakness, migratory arthralgia, and swollen lymph nodes (sensitivity 77%, specificity 88%).'"
 * 2005, Chronic Fatigue Syndrome: a survey of GPs' attitudes and knowledge."'METHODS: A postal questionnaire was sent to 1054 GPs served by Taunton, Bristol and Gloucester laboratories. GPs' attitudes to nine statements about CFS/ME were assessed and the factors associated with positive or negative responses were determined. Knowledge of the clinical features was also assessed. RESULTS: 811 GPs (77%) returned the questionnaire. 48% of GPs did not feel confident with making a diagnosis of CFS/ME and 41% did not feel confident in treatment. 72% of GPs accepted CFS/ME as a recognisable clinical entity and those GPs had significantly more positive attitudes. Three other key factors that were significantly, positively associated with GPs' attitudes were knowing someone socially with CFS/ME, being male and seeing more patients with the condition in the last year."
 * 2004, Risk Factors for the Development of Severe ME/CFS — A Pilot Study"'Abstract - The pilot phase is reported of a case-control study to determine risk factors for severe CFS/ME. One hundred fifty-seven members of the ME Association, selected at random, were sent postal questionnaires, with a 56% response. The Barthel index was used as a validated proxy measure to distinguish severe disease (cases) and those less severe. Thirteen of 88 respondents had severe disease, and 44 mild disease. Two matched controls from the ‘mild’ group were selected per case. Of possible risk factors, odds ratios greater than 2 were found for comorbidities, damaging initial treatment and occupational chemical exposure, although in this study they were not statistically significant. These data suggest that additional studies are warranted.'"

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