Voices from the Shadows

ME Specialists

Professor Leonard Jason

Dr Leonard Jason is a Professor of Psychology and the Director of the Center for Community Research at DePaul University, Chicago. He is a former president of the Division of Community Psychology of the American Psychological Association. He has received more than$26 million in federal grants and published over 600 articles, 77 book chapters and 23 books on ME/CFS; recovery homes; the prevention of alcohol, tobacco, and other drug abuse; media interventions; and program evaluation.  The last of his books, “Principles of Social Change” was published by Oxford University press in 20013. It is an inspiring account of his work to date and illustrates the five principles he has developed in his work as an activist bringing about extraordinary and positive social change. Many of us in the ME world only know of Dr Jason for his research work in ME/CFS, but he has made an enormous impact on varied social issues such as the prevention of smoking among youth and recovery support for those with addiction problems. In 2011, he was presented with the Tom Fellows Award by the Oxford House Organization for his 20 years of research documenting the process of long term recovery from addiction.

“Throughout history, it has been ordinary people, driven by a desire for social justice, who have achieved meaningful, life-changing reforms, often starting in their own communities. Ordinary individuals who do not lose faith can overcome enormous odds to target the root of a systemic problem.” Jason’s lecture at SCRA 2013 - Principles of Social Change: Community Partnerships Promote Social Justice

From 2006-2012 Leonard Jason  was a member of the USA Government Chronic Fatigue Syndrome Advisory Committee and chair of the research subcommittee since 2007. From 2004-2009 he was Vice-President of the International Association for CFS/ME . In 2011 he was awarded the Perpich Award for distinguished service to the IACFS/ME and the CFS/ME community.

Professor Jason is particularly interested in topics of epidemiology, case definition and stigma. He has produced influential research in these areas, clarifying many widespread misconceptions. His work has been particularly useful in showing that patients suffering from major depression can inadvertently be included as subjects in research into ME/CFS, leading to distorted research findings. He has also shown that ME is not confined to particular socio-economic groups such as white middle class women as has often been portrayed by the media, but occurs worldwide among all races, classes, ages and both sexes. The breadth and depth of Prof Jason’s work, his publications and books can be seen here – http://condor.depaul.edu/ljason/cfs/publications.html  He has also written many articles e.g. Wall Street Journal 2011 or the IACFS Problems with the New CDC CFS Prevalence Estimates

Recently Prof Jason was one of the authors of “ME/CFS: A Primer for Clinical Practitioners” –  Published in 2012. This a very clear, informative  and readable document which can be downloaded from the IACFS website here.

 

Dr Nigel Speight. MA, MB, BChir, FRCP, FRCPCH, DCH.

01Dr Nigel Speight has been a Consultant Paediatrician in Durham for over 25 years. He has seen a large number of cases of childhood ME in his own area and has frequently been called on to give a second opinion, often in very severe cases all over the country. He has played a major role in rescuing children from Care Proceedings, sadly a job which continues to this day. By the time he retired he had been involved with over 500 childhood cases of all grades of severity. He also developed special interests in childhood asthma, food intolerance, Child Abuse and Neglect, emotional and behavioural problems and ADHD.

Dr Speight is currently a medical advisor for The ME Association, The 25% Group, TYMES Trust, and the MEA of Wales. For many years Dr Speight was the  paediatric adviser to both AYME and Action for ME but after many years of happy association with AYME he says, “our paths diverged and I recently resigned as their Patron”.  He is widely considered to be the most knowledgeable and experienced ME Consultant Paediatrician in the UK. He has been invited to lecture on ME in Australia, Ireland and Norway. He was on the Chief Medical Officer’s Working Party which reported in 2002 and also the College of Paediatrics Guidelines group. He gave evidence to the Gibson Inquiry and on three occasions has talked to the ME interest group at the Scottish Parliament. He was not involved in drawing up the NICE Guideline for ME.

Recently, along with 25 other specialists representing 13 countries, Dr Speight  was a member of the International Consensus Panel which published the   ‘Myalgic Encephalomyelitis: International Consensus Criteria’ 2011 for diagnosing and researching ME. This was a development from the Canadian Consensus Criteria. It is based on the most up-to-date international research and clinical experience which ‘strongly point to widespread inflammation and multisystemic neuropathology’. and stresses that, “Individuals meeting the International Consensus Criteria have myalgic encephalomyelitis and should be removed from the Reeves empirical criteria and the National Institute for Clinical Excellence (NICE) criteria for chronic fatigue syndrome”.

Dr Speight has also participated in the very informative document “Myalgic Encephalomyelitis – Adult and Paediatric: International Consensus Primer for Medical Practitioners” edited by B Carruthers and M van de Sande and published  in 2012. This explains that “the criterial symptoms, such as the distinctive abnormal responses to exertion can differentiate ME patients from those who are depressed or have other fatiguing conditions.”

There is a handout about Childhood ME written by Dr Nigel Speight here and a recent article Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Review of History, Clinical Features and Controversies. can be down loaded from this link www.sjimms.net

 

 

Professor Malcolm Hooper

Professor Malcolm Hooper became the Emeritus Professor of Medicinal Chemistry at the University of Sunderland in 1993. His degrees, B Pharm and PhD, are both from the Faculty of Medicine at London University. Medicinal chemistry is the science of drug design and development and requires knowledge of the relevant medicine, biochemistry and pharmacology as well as chemistry.  In 1997 he became  involved with the sick Gulf War veterans from the first Gulf War and served on two Government Committees; the Independent Panel established to consider the possible interactions between vaccines and NAPS tablets, and the Depleted Uranium Oversight Board.

Many sick veterans were also diagnosed with CFS/ME and this lead Professor Hooper to become involved with Myalgic Encephalomyelitis and the John Richardson Research Group in Newcastle, UK. Dr John Richardson was one of the wisest, most knowledgeable, experienced and respected clinicians in the field of ME. Since that time Prof Hooper has been speaking and lecturing on ME/CFS to interested groups throughout the country and at National and International Conferences. He regularly chairs the annual Invest in ME International Biomedical Conferences in London and wrote ‘Engaging with ME’ in 2003, out of his early experience of ME and these overlapping syndromes. He has subsequently published extensively on the internet numerous articles in association with many members of the ME community, particularly Margaret Williams. (see www.meactionuk.org.uk ) Further involvement with organophosphate (OP) poisoned farmers and aircrew followed as he developed his broader understanding of ME and these overlapping syndromes.

He is deeply concerned about the injustices and suffering of sick people with ME caused by Government policy in the UK that is driven by psychiatrists bent on reclassifying ME as a mental and behavioural disorder in defiance of the biomedical science and WHO classification of this devastating condition..

Hooper M (May 2007). “Myalgic encephalomyelitis: a review with emphasis on key findings in biomedical research”. J. Clin. Pathol. 60 (5): 466–71. doi:10.1136/jcp.2006.042408. PMC 1994528. PMID 16935967.