Nigel Speight

Doctor Nigel Speight is a semi-retired British doctor based in the North East of England who specialises in Pediatric ME/CFS and has been involved in fighting many child protection cases in which children with ME/CFS were at risk of being removed from their parents. He has acted as a voluntary paediatric medical advisor for many ME/CFS charities.

He features in the film Voices from the Shadows, a documentary about severe ME/CFS.

He has been outspoken about the risks to children with ME/CFS being misdiagnosed as having a psychiatric condition.

He is one of the authors of the 2011 case definition, International Consensus Criteria.and the 2017 Pediatric Primer.

Awards

• Jun 29, 2017 - Exceptional Paediatrician Award from Tymes Trust

2017 Pediatric Primer

Dr. Speight was one of the authors of the 2017 Pediatric Primer published in Frontiers in Pediatrics.

• Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer (OPEN ACCESS/FULL TEXT). Authors: Peter C. Rowe, Rosemary A. Underhill, Kenneth J. Friedman, Alan Gurwitt, Marvin S. Medow, Malcolm S. Schwartz, Nigel Speight, Julian M. Stewart, Rosamund Vallings and Katherine S. Rowe

  Abstract:Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex disease that affects children and adolescents as well as adults. The etiology has not been established. While many pediatricians and other health-care providers are aware of ME/CFS, they often lack essential knowledge that is necessary for diagnosis and treatment. Many young patients experience symptoms for years before receiving a diagnosis. This primer, written by the International Writing Group for Pediatric ME/CFS, provides information necessary to understand, diagnose, and manage the symptoms of ME/CFS in children and adolescents. ME/CFS is characterized by overwhelming fatigue with a substantial loss of physical and mental stamina. Cardinal features are malaise and a worsening of symptoms following minimal physical or mental exertion. These post-exertional symptoms can persist for hours, days, or weeks and are not relieved by rest or sleep. Other symptoms include cognitive problems, unrefreshing or disturbed sleep, generalized or localized pain, lightheadedness, and additional symptoms in multiple organ systems. While some young patients can attend school, on a full or part-time basis, many others are wheelchair dependent, housebound, or bedbound. Prevalence estimates for pediatric ME/CFS vary from 0.1 to 0.5%. Because there is no diagnostic test for ME/CFS, diagnosis is purely clinical, based on the history and the exclusion of other fatiguing illnesses by physical examination and medical testing. Co-existing medical conditions including orthostatic intolerance (OI) are common. Successful management is based on determining the optimum balance of rest and activity to help prevent post-exertional symptom worsening. Medications are helpful to treat pain, insomnia, OI and other symptoms. The published literature on ME/CFS and specifically that describing the diagnosis and management of pediatric ME/CFS is very limited. Where published studies are lacking, recommendations are based on the clinical observations and practices of the authors.

2016 General Medical Council complaint

In 2016 Dr. Speight was subject of a complaint to the General Medical Council, the organisation responsible for maintaining the register of doctors licensed to practice medicine in the UK. The substance of the complaint and the identity of the person who made it were not made public. As a result of the complaint, the GMC imposed limits on Dr Speight's medical license, restricting him to working in NHS posts as a consultant general paediatrician but forbidding him to carry out any work in relation to ME/CFS, including unpaid work. The restriction holds until July 2017.

The ME Association immediately sent a detailed letter to the GMC in support of Dr Speight, and coordinated a further, joint letter of support from ME/CFS charities, professional colleagues and parents of children with ME/CFS in the UK and abroad.

Dr. Speight issued a public statement on the situation. Meanwhile, an e-card in support of Dr Speight received over 1,000 signatures and messages in less than 48 hours.

Background

Dr. Speight was born in India, where his father was a missionary doctor. Dr Speight left India when he was 10 and went to secondary school at Merchant Taylors’ School, Crosby (Merseyside). He qualified in 1966 from Cambridge and University College Hospital, worked as a junior doctor in London and then taught at the new medical school in Dar es Salaam, Tanzania.

When he returned to the UK four years later, he changed from Adult Medicine to Paediatrics and did his paediatric training in Newcastle. In 1982 he became a consultant and took up his post in Durham, where he worked for 25 years.

He developed special interests in childhood asthma, food intolerance, child abuse and neglect, emotional and behavioural problems and ADHD.

He retired in 2007 but works in locum posts for several months a year.

He is married and has four children and four grandchildren. He is a keen cyclist, and has cycled in Ecuador, Cuba, Jordan, and South India, and from Land’s End to John o’ Groats.

Work in ME/CFS

Dr. Speight became interested in ME/CFS from around 1984, when he was consulted by a young girl in a wheelchair who announced that she had ME, which at the time, he knew nothing about. Lectures by Dr. Betty Dowsett, Alan Franklin and Dr. David Bell helped develop his interest in the topic.

Over the next 20 years he saw over 500 cases, all over the UK, and gave numerous lectures to medical audiences around the country on the subject.

He served on the Chief Medical Officer’s Working Party, which reported in 2002, and on the College of Paediatrics Guidelines group. He gave evidence to the Gibson Inquiry and on three occasions talked to the ME interest group at the Scottish Parliament.

He has worked as an honorary paediatric medical adviser for several UK ME/CFS charities, including the ME Association, the Tymes Trust, the 25 Percent ME Group, Action for ME, and the Association of Young People with ME. He resigned from the latter group in 2009 when their “paths diverged”.

Writing about his work, he has said:

“The most distressing cases I have encountered were those in which families were being subjected to Child Protection proceedings. This was usually due to the failure of the local doctors to officially diagnose ME, or for them to diagnose it but to imply it wasn’t a real, i.e., organic condition. This left the families open to alternative explanations such as neglect, emotional abuse or Munchausen Syndrome by Proxy. I was involved in more than 20 of these cases around the country and am proud to have been instrumental in reversing the proceedings in all but a small handful.”

Open Letter to The Lancet

Two open letters to the editor of The Lancet urged the editor to commission a fully independent review of the PACE trial, which the journal had published in 2011. In 2016, Dr. Speight, along with 41 colleagues in the ME/CFS field, signed the second letter.

• 10 February 2016, An open letter to The Lancet, again - Virology blog

Talks & interviews

Dr Speight has recorded a number of video interviews:

• 'Exercise and ME/CFS': 2014 talk given at Bristol Watershed.
• Dr. Nigel Speight: 'Paediatric ME/CFS': 2014 talk given at Stockholm, Sweden.

The following interviews were given (in English) in 2014 with the Dutch group, Wetenschap voor Patienten ("Science for Patients"): (engels gesproken, nederlandse ondertiteling)

• 2014 28. Interview with Dr Nigel Speight / Interview met Dr. Nigel Speight
• 2014 30. Diagnostic tools for ME / Diagnostische handvatten voor ME - Dr. Nigel Speight
• 2014 34. Future and hope - Toekomst en hoop - Dr. Nigel Speight
• 2014 32. ME and children - Part 1 - ME en kinderen deel 1 -Dr. Nigel Speight
• 2014 33. ME and children - Part 2 - ME en kinderen deel 2 - Dr. Nigel Speight
• 2014 29. What is ME and what is CFS? - Dr. Nigel Speight
• 2014 31. ME/CFS and the course of the disease - Dr. Nigel Speight

Learn more

• Sick and Tired - BBC (TV show featuring Dr Speight)

See also

• ME Association
• 25 Percent ME Group
• Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Diagnosis and Management in Young People: A Primer

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.

etiology The cause of origin, especially of a disease.

cognition Thought processes, including attention, reasoning, and memory.

lightheadedness the condition of being dizzy or on the verge of fainting

orthostatic intolerance (OI) - The development of symptoms when standing upright, where symptoms are relieved upon reclining. Patients with orthostatic intolerance have trouble remaining upright for more than a few seconds or a few minutes, depending upon severity. In severe orthostatic intolerance, patients may not be able to sit upright in bed. Orthostatic intolerance is often a sign of dysautonomia. There are different types of orthostatic intolerance, including postural orthostatic tachycardia syndrome (POTS).

myalgic encephalomyelitis (M.E.) - A disease often marked by neurological symptoms, but fatigue is sometimes a symptom as well. Some diagnostic criteria distinguish it from chronic fatigue syndrome, while other diagnostic criteria consider it to be a synonym for chronic fatigue syndrome. A defining characteristic of ME is post-exertional malaise (PEM), or post-exertional neuroimmune exhaustion (PENE), which is a notable exacerbation of symptoms brought on by small exertions. PEM can last for days or weeks. Symptoms can include cognitive impairments, muscle pain (myalgia), trouble remaining upright (orthostatic intolerance), sleep abnormalities, and gastro-intestinal impairments, among others. An estimated 25% of those suffering from ME are housebound or bedbound. The World Health Organization (WHO) classifies ME as a neurological disease.