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 and adult Chronic Fatigue Syndrome.

She 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.

Crawley served as vice-chair of the UK CFS/ME Research Collaborative (CMRC) until 2018.

She was on the guideline development group (GDG) for the NICE guidelines published in August 2007 and the Medical Research Council CFS/ME expert working group (2009-2010).

She has published studies in the Journal of Psychosomatic Research and collaborates with Peter White of Queen Mary University of London.

Since 2006, Professor Crawley has been awarded £2.3 million in grants by various bodies to study CFS/ME and is the second highest funded researcher in the UK.

Education
BA(Hons), BMBCh(Oxon) Bachelor of Medicine, PhD(UCLond)

Notable studies
Esther Crawley is involved with a number of research projects that have drawn heavy criticism from individual patients, charities, patient groups, members of the medical profession and scientists.

SMILE 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 and 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
In the MAGENTA trial, Professor Crawley is studying 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
FITNET 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.

There was severe criticism by patients, including in the Bristol University student newspaper Backlash for ‘landmark’ University research trials.

MEGA
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. Post-exertional 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 child's temperature (despite her complaints of being cold, or her heart rate, and blood pressure.

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

Controversies and criticism
GMC Complaints and claims of abuse and death Threats

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

No evidence was provided of such abuse claims.

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, labeling 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 (GDG) for the controversial NICE guidelines CG53 which were published in 2007.

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.”

She also stated in a BBC interview that the PACE trial was “a great, great study.”

Smearing critics as "anti-science" and unauthorised use of personal photos 

Esther Crawley presented at a conference in April 2017which she accused all critics of her work being "anti-science' and being harassed. She smeared patient groups, scientists and Dr David Tuller. She inferred about patients being drug users, criminals, with financial and relationship problems. She also defamed a US college student whose picture she took without any permission and used in her presentation.

MUPPETS conference

Esther Crawley presented at a conference called 'A day with the MUPP(ET)S on 18 May 2017. The term Muppets is a derogatory word meaning stupid person. ME patients and charities condemned the title of the muppets talk. The Tymes Trust issued condemnation. The offensive name of the talk was reported in local media.

Continued gaslighting of all ME patients & advocates in science conferences

Crawley continued her smear campaign and theme of portraying sick and disabled ME patients and advocates and other scientists of criticising her flawed science as harassment and abusive and militants at a 'Better Science Better Data' conference in October 2017. She provided no actual evidence of her claims of harassment and instead made numerous unfounded statements to smear all disabled ME patients and advocates who advocate for biomedical research as "fake news".

Freedom of Information Request showed zero evidence of harassment 

The Tymes Trust was concerned about the repeated accusations of harassment by Crawley the PACE trial authors and submitted a Freedom of Information Act (FOI) request to Bristol University who are Crawley's employers. Bristol University was followed up for the request and including with escalation to the Information Commissioner who instructed the university to comply with the request. Bristol University eventually responded "We have received no official reports of harassment of University staff by a third party between September 2010 and June 2015.". Therefore there was no evidence of any harassment despite the campaign in the media and science conferences. .

An article was published 'Esther Crawley claims harassment, university has no record' examining the Freedom of Information request and the alleged claims of widespread threats and harassment to Esther Crawley and stated "a Freedom of Information request to her own institution by The Tymes Trust, revealed that no such incidents had been reported to them." The article examined a number of alleged claims of harassment and  threats and that they had been rejected by the courts in the PACE trial tribunal. Also  that some threats and repeated by Crawley in a number of live talks which she said were sent to her were false as it transpired  it was actually an artists illustration used in a magazine  article cover.

Subsequently the University of Bristol published a confusing statement on their website and stated that it was aware "Professor Crawley in particular has experienced significant harassment and personal abuse over several years". This was inconsistent with the actual official FOI response. It explained that "The University does not have a process for 'official recording' of harassment by third parties of our members of staff hence the response to this FOI request" Voices from the Shadows commented on the controversy in their article 'Bristol University both denies and supports Prof Crawley in her career enhancing “heroic victim” narrative'. They stated of the inconsistency "However, this is seriously at odds with their website, which now echoes the accusations Prof Esther Crawley has been making very publicly at several lectures this year." and "If this really is true, then the University has given a fraudulent response to the Freedom of Information requests."

Open letter to TEDxBristol regarding Crawley's talk "Disrupting Your View of ME" 

Esther Crawley continued with her talks and presented at a TEDxBristol talk called "Disrupting Your View of ME" on 2 November 2017 in which she claimed she was disrupting the views of the illness and was the voice of patients. TEDx are not the official TED conferences but TEDx are independent TED-like events, which can be organized by anyone who obtains a free license from TED. This was at the same time during the  Unrest film campaign in which Jennifer Brea promoted the film in the UK media for the launch. On the 15th December 2017, Carly Maryhew, one of the co-authors of the PACE trial data re-analysis, sent a letter, a copy of which is available on the Science for ME forum to TEDxBristol, explaining, in part, "the contents of that talk did not seem to comply with the standards of TEDx, as described in the TEDx Content Guidelines.[1] While that might be sufficient to result in the video merely being displayed with a warning regarding the contents, there are other portions of Professor Crawley's presentation which are highly offensive" The letter stated "Not only is she promoting blatant pseudoscience and making false accusations against the patients who oppose her work, she goes so far as to brazenly suggest that she should be our voice....All Professor Crawley needs to do is to stop attempting to silence us."

The TedxBristol talk was recorded and is available on-line.

Jennifer Brea tried to avoid singling out a single researcher but finally wrote 26 tweets on twitter about Esther Crawley's behaviour stating that "You do not need to "provide our voice." and that disabled ME sufferers have voices which they use daily and the full thread is available on thread reader.

Criticism of Crawley by scientific community and her attempts to silence such criticism

Dr David Tuller has criticised Crawley's approach to science and challenged her on her accusations that he was engaging in libellous blogging. She did not respond to attempts at discussion and contact.

Tuller then  attended a  talk by Esther Crawley  called   “What is new in paediatric CFS/ME research” at the University of Exeter’s Mood Disorders Centre. Crawley again repeated her accusation of harassment in the talk but did not specifically mention Virology blog as libellous. She refused to answer the questions and stopped the talk. Tuller also concluded that "I believe that Professor Crawley wants to bully those who raise concerns about her work into silence rather than engaging in robust debate about the very real methodological and ethical problems with her studies."

Crawley stated that a "cease and desist letter" had been sent in the talk and that she also mentioned the notion of consulting with the police over the matter. Dr Tuller did not receive any cease and desist letter and wrote to the University of Bristol legal department to enquire about whether such a letter had been written and what he was supposed to cease and desist from.

Her university did not respond so Tuller pursued the matter further and posted another article examining the issue and then a response was sent in which the legal department stated "If by a ‘cease and desist’ letter you mean a letter threatening legal action if the recipient does not stop a specified activity or behaviour, then I can confirm that the University of Bristol has not sent you or your institution such a letter". Crawley had again made a false statement over the sending of a cease and desist letter.

Dr Tuller has since published all his attempts at contact with Esther Crawley to discuss and attempt to resolve matters in his post 'Trial By Error: My One-Sided Correspondence with Professor Crawley' in which she failed to respond to any of his emails. It transpired that Esther Crawley and Bristol university did send a letter to Tuller's employer, the University of Berkeley to threaten and effectively silence his investigations into her work. However the University of Berkeley reviewed the matter and  confirmed that he did nothing wrong, and affirmed his right as a public health journalist to continue his work. Tuller wrote about this in 'Bristol’s Complaint to Berkeley'.

Buzzfeed investigation

Buzzfeed reported on the controversy and issues surrounding Esther Crawley and the SMILE trial and other related controversies  in their article A Controversial Therapy For ME Has Led To Claims Of Death Threats, Harassment, And Pseudoscience. Buzzfeed investigated the issues and for balance spoke to both Dr David Tuller and Dr Esther Crawley. Dr Crawley responded to some issues but the article stated "Crawley declined to talk about the issue when asked by BuzzFeed News" in relation to her allegations about libel and harassment. Bristol University responded to some issues but on the point about serious issues about probity raised by Prof Edwards, "Bristol said it didn’t feel it was appropriate to comment on this."

Dr Tuller commented on Crawley's attempts to justify her methodological choices in the article 'Professor Crawley's Bogus Buzzfeed claims'.

BMJ Archives of Disease in Childhood,

Dr. Nick Brown, Editor-in-Chief Archives of Disease in Childhood, BMJ, added an Editor's Note to the trial article 'Clinical and cost-effectiveness of the Lightning Process in addition to specialist medical care for paediatric chronic fatigue syndrome: randomised controlled trial'.


 * Editor's note


 * This study was published online in Archives of Disease in Childhood after peer review in September 2017. The trial tested the effectiveness of a neurolinguistic programming intervention (used widely but never formally tested) in children and young people with chronic fatigue recruited between 2010 and 2013. Though the number of participants was small, analysis suggested a benefit in terms of physical function (measured by the standard SF 36 scale) at both 6 and 12 months after intervention.


 * Since publication, the study has been criticised for failing to meet ICMJE and BMJ policy on trial registration and for not fully adhering to CONSORT guidance on trial reporting. The journal has been criticised for not detecting these issues during editorial and peer review. We have acknowledged these comments and reviewed our processes in relation to this paper and relating to EQUATOR guidance in general. In addition, we have received clarifications from the authors which are under editorial consideration.

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.

Media coverage and interviews

 * 2015, ME parents’ fury at child abuse claims "HUNDREDS of parents whose children suffer from a crippling illness that leaves them permanently exhausted have been falsely accused of child abuse." (See comments section.)
 * 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

Research publications

 * 2013, The feasibility and acceptability of conducting a trial of specialist medical care and the Lightning Process in children with chronic fatigue syndrome: feasibility randomized controlled trial (SMILE study) (Full text)
 * 2013, Comparing specialist medical care with specialist medical care plus the Lightning Process® for chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME): study protocol for a randomised controlled trial (SMILE Trial) (Full text)
 * 2015, Maternal and childhood psychological factors predict chronic disabling fatigue at age 13 years’. Journal of Adolescent Health (Full text)


 * 2016: Taylor, A, Loades, M, Brigden, A, Collin, S & Crawley, E, 2016, ‘“It’s personal to me”: A qualitative study of depression in young people with CFS/ME’. Clinical Child Psychology and Psychiatry.


 * 2016: Brigden, A, Beasant, L, Hollingworth, W, Metcalfe, C, Gaunt, D, Mills, N, Jago, R & Crawley, E, 2016, ‘Managed Activity Graded Exercise iN Teenagers and pre-Adolescents (MAGENTA) feasibility randomised controlled trial: study protocol’. BMJ Open, vol 6.


 * 2016: Norris, T, Hawton, K, Hamilton-Shield, J & Crawley, E, 2016, ‘Obesity in adolescents with chronic fatigue syndrome: an observational study’. Archives of disease in childhood.


 * 2016: Parslow, R, Harris, S, Broughton, J, Alattas, A, Crawley, E, Hayward, K & Shaw, ARG, 2016, ‘Children’s experiences of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME): A systematic review and meta-ethnography of qualitative studies’. BMJ Open.


 * 2016: Norris, T, Collin, S, Tilling, K, Nuevo, R, Stansfeld, S, Sterne, J, Heron, J & Crawley, E, 2016, ‘Natural course of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis in adolescents’. Archives of Disease in Childhood.


 * 2016: Loades, M, Sheils, E & Crawley, E, 2016, ‘Treatment for paediatric chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) and comorbid depression: a systematic review’. BMJ Open. Harris, S, Gilbert, M, Beasant, L, Broughton, J & Crawley, E, 2016, ‘A qualitative investigation of eating difficulties in adolescents with chronic fatigue syndrome/myalgic encephalomyelitis’.


 * 2016: Stoll, S, Loades, M & Crawley, E, 2016, ‘Anxiety in paediatric Chronic Fatigue Syndrome (CFS/ME): A Systematic Review’.


 * 2016, Trials and tribulations


 * 2017, Trends in the incidence of chronic fatigue syndrome and fibromyalgia in the UK, 2001–2013: a Clinical Practice Research Datalink study (Full Text)


 * 2018, Childhood sleep and adolescent chronic fatigue syndrome (CFS/ME): evidence of associations in a UK birth cohort (Full Text)
 * 2018, Defining the minimally clinically important difference of the SF-36 physical function subscale for paediatric CFS/ME: triangulation using three different methods (Full text)

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.