Esther Crawley

Esther Crawley is Professor in Child Health at the University of Bristol in the United Kingdom. She is a proponent of Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) as treatments for paediatric Chronic Fatigue Syndrome.

She is vice-chair of the UK CFS/ME Research Collaborative (CMRC) and leads the paediatric centre for children and young people with ME/CFS at the Royal United Hospital in Bath. (Previously at the Royal National Hospital for Rheumatic Diseases in Bath). Her work has been funded by the National Institute for Health Research (NIHR) and Action for ME. .

She has published studies in the Journal of Psychosomatic Research and collaborates with Peter White of QMUL. Prof Crawley is the Lead Medical Advisor at the British charity Association of Young People with ME (AYME) having replaced Dr Nigel Speight in 2009.

Since 2006, Prof Crawley has been awarded £2.3 million in grants by various bodies to study ME/CFS.

Notable studies
S.M.I.L.E. Lightning Process trial

SMILE was a pilot trial on children with ME/CFS and involved comparing the effects of standard medical treatment (SMC) against that of the Lightning Process & SMC. The initial budget was £164,000 funded by the Linbury Trust and the Ashden Trust.

Children aged 12 to 18 were drawn from the Bristol & Bath areas, with those too unwell to attend hospital appointments excluded. The charity Association of Young People with ME (AYME) was a participant in the trial and gave evidence in support during the trial ethics procedure.

A Freedom of Information request asking for the cost of the trial and payments to Phil Parker were turned down as they university states the "information is held by the University but is exempt from disclosure under section 22(1) of the Freedom of Information Act as it is information intended for future publication."

MAGENTA trial

Prof Crawley is studying CBT and GET in children. . The protocol and peer review history have been published.

The trial started in September 2015 and studies 100 paediatric patients aged 8-17 in centres in Bath, Newcastle and Cambridge who randomly receive graded exercise therapy or activity management. It aimed to be completed in August 2016.

FITNET online CBT study

This is a major study led by Dr Crawley funded by the NIHR which began in May 2016 and is due to be completed by May 2022. The projected cost is £994,430 and participants include UMC Utrecht and Radboud University Medical Centre in the Netherlands. The charity AYME and the Science Media Centre are also involved to "help us inform patients".

The study aim is to test FITNET-NHS (specialist CBT for paediatric CFS/ME delivered on-line) compared with Activity Management in terms of cost-effectiveness and clinical success.

David Tuller who exposed the PACE trial scandal in his Trial by Error series of investigations wrote about FITNET in November 2016. On 21 Nov, 21016 he wrote Trial By Error, Continued: The New FITNET Trial for Kids and on 28 November 2016 he wrote Trial By Error, Continued: A Follow-Up Post on FITNET-NHS.

Ester Crawley was one of the authors in a paper on Pervasive Refusal Syndrome (PRS) presenting with Chronic Fatigue Syndrome: avoiding the pitfall of a wrong diagnosis in which Patients with PRS were similar to those with CFS/ME in terms of age, gender, presence of anxiety or depressive symptoms, time to assessment and pain. They were more disabled than CFS patients and had higher levels of fatigue. It is not clear how PRS is distinguished from severe ME/CFS as the description of PRS matches that of severe/profound ME/CFS. The study suggests that clinicians should think about PRS in patients with refusal symptoms affecting, eating, social interaction, self-care, mobility and treatment. Patients have extremely high levels of fatigue and/or disability. Postexertional fatigue and disrupted sleep occur but patients are less likely to have characteristic symptoms of CFS/ME such as unrefreshing sleep. Of major concern is that the treatment for PRS is admittance to a psychiatric ward and coercion to do more activity i.e. the exact opposite of the needs of a child with profound ME/CFS. A clinical case that describes a child with pervasive refusal disorder (3) is consistent with a description of profound ME/CFS, and the description of what works to help the child is also consistent with what helps a child with profound ME/CFS, "Treatment must involve tender loving care. The carers must be very patient and sensitive. It takes a long time for the patients to recover, and pressuring them makes their condition worse. It typically takes a few months of treatment before it becomes possible to implement a very gradual rehabilitation programme. Therapeutic enthusiasm in the early stages is almost always counterproductive [11]." Ironically the authors did not appear to collect any physiological data such as the childs temperature (despite her complaints of being cold, or her heart rate, and blood pressure. . https://www.researchgate.net/publication/273874213_G160P_Case_series_of_Pervasive_Refusal_Syndrome_presenting_with_Chronic_Fatigue_Syndrome_avoiding_the_pitfall_of_a_wrong_diagnosis G160(P) Case series of Pervasive Refusal Syndrome presenting with Chronic Fatigue Syndrome: avoiding the pitfall of a wrong diagnosis

Article in Archives of Disease in Childhood 99(Suppl 1):A70-A70 · April 2014 with 246 Reads DOI: 10.1136/archdischild-2014-306237.168

(2) Eur Child Adolesc Psychiatry. 2009 Nov; 18(11): 645–651. Published online 2009 May 21. doi: 10.1007/s00787-009-0027-6 PMCID: PMC2762526 Pervasive refusal syndrome as part of the refusal–withdrawal–regression spectrum: critical review of the literature illustrated by a case report Tine Jaspers,corresponding author1,2 G. M. J. Hanssen,3 Judith A. van der Valk,3 Johann H. Hanekom,4 Gijs Th. J. van Well,5 and Jan N. M. Schieveld1

(3) Pervasive refusal syndrome as part of the refusal–withdrawal–regression spectrum: critical review of the literature illustrated by a case report Tine Jaspers,corresponding author1,2 G. M. J. Hanssen,3 Judith A. van der Valk,3 Johann H. Hanekom,4 Gijs Th. J. van Well,5 and Jan N. M. Schieveld1

Media coverage & interviews

 * 2016, New Scientist: Time to end the damagaging battle over Chronic Fatigue Syndrome (account needed). Also available via Phoenix Rising discussion
 * 2016, BBC News:Landmark chronic fatigue trial could treat two-thirds (about FITNET)
 * 2016, BBC News: Chronic fatigue syndrome on rise among 16-year-olds
 * 2016, BBC Radio 4: Women's Hour (27 Jan 2016): Talks about teenage girls and chronic fatigue syndrome

Controversies and Criticism
SMILE Trial

In a joint statement in August 2010, the ME Association and the Young ME Sufferers Trust called the SMILE study "unethical". They quoted the Medical Research Council guidelines on research in children - "Research involving children should only be carried out if it cannot feasibly be carried out on adults. The ME Association and The Young ME Sufferers Trust do not believe that it is ethically right to use children in trialling an unproven and controversial process such as the Lightning Process." Invest in ME in a letter to the National Research Ethics Committee (NRES) described the process as "rather like CBT but with bullying and risks of harm".

James Coyne has criticised Crawley's work with regard to public availability of data & the involvement of Phil Parker in the SMILE study.

Daniel Clark has noted that the primary outcome measure was changed from school attendance to scores on a self-report questionnaire. He stated, "Given that LP involves making claims to patients about their own ability to control symptoms in exactly the sort of way likely to lead to response bias, it seems very likely that this trial will now find LP to be 'effective'."

The study only received final ethical approval after prolonged protests from patient groups in January 2011.

MAGENTA Trial

James Coyne has urged patents not to enrol their children in the trial. He has highlighted the lack of information given to patients about potential harm, the consent procedure and the lack of published data on previous studies.

Complaints and Death Threats

Dr Crawley has been the subject of complaints to the General Medical Council (GMC) and claimed to have received death threats

Canadian Consensus Criteria

In an reply to an Editorial in the British Medical Journal by Fiona Goodle, Crawley (with Peter White and Alastair Miller) rejected using the Canadian Consensus Criteria to diagnose patients, labelling it as "not practical", although conceding post-exertional malaise (which is part of the criteria) "may need incorporating in future definitions to help differentiate CFS from more general fatigue."

Prevalence at Age 16

In a study published in 2016 using data from almost 6000 children in the Children of the 90s Project, Crawley and her team concluded that the prevalence of CFS at age 16 was 1.8%. However, the children were included as having CFS on the basis of questionnaires, no doctors were involved in the diagnosis, and there was no attempt to exclude other fatigue-related conditions except depression. If children reporting depressive thoughts were excluded, the prevalence was reduced to 0.6%, but the 1.8% figure was highlighted in the media. BBC Radio 4 coverage described the condition studied as ‘ME also known as chronic fatigue syndrome’. Dr Charles Shepherd of the ME Association wrote to express concerns about the methodology used but the journal did not publish his letter

NICE Guidelines

Esther Crawley was on the guideline development group for the NICE guidelines [ CG53]

Science Media Centre Expert on PACE trial 

Crawley was on of the experts chosen by the Science Media Centre to comment on the PACE trial publications in February 2011 and January 2013. She said “All children with chronic fatigue syndrome and their parents are desperate for new research to understand how to treat this condition. The next step is to do a study like this for children to find out if these treatments work.” Refs

Refs to add: http://www.sciencemediacentre.org/expert-reaction-to-lancet-study-looking-at-treatments-for-chronic-fatigue-syndromeme-2-2/ http://www.sciencemediacentre.org/expert-reaction-to-new-research-into-therapies-for-chronic-fatigue-syndromeme/

Freedom of information requests
A number of Freedom of Information requests have been made to Dr Crawley about her work. One request revealed records were not kept of patients subsequently re-diagnosed with another illness at Dr Crawley's paediatric clinic.

Online presence

 * Royal United Bath Hospitals: Fatigue Management, Children
 * Esther Crawley's PubMed history
 * University of Bristol - Esther Crawley
 * School of Social and Community Medicine at Bristol University
 * University of Bristol: Esther Crawley's research publications

Directorships and Shareholdings
Esther Madeleine Crawley has 1 total appointment.