Esther Crawley

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Esther Crawley, PhD, is a former medical doctor who was previously Professor in Child Health at the University of Bristol in the United Kingdom.[1] Before her retirement,[2] Esther Crawley worked a researcher and Consultant Pediatrician, in particular treating children with ME/CFS and managing an NHS clinic in Bath, UK. Esther Crawley was a very prominent and controversial figure in ME/CFS research, strongly promoted the controversial use of both Cognitive Behavioral Therapy (CBT) and Graded Exercise Therapy (GET) as primary treatments for paediatric and adult Chronic Fatigue Syndrome.[3]

Crawley left 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) in May 2023, and surrendered her registration to practice medicine in the UK in September 2023.[2][3] Her work has been funded by the National Institute for Health Research (NIHR) and previously by Action for ME.[4][5]

Crawley served as vice-chair of the UK CFS/ME Research Collaborative (CMRC) until 2018.[6]

She was on the guideline development group (GDG) for the controversial 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 [7] and collaborates with Peter White of Queen Mary University of London.

Between 2006 and 2016, Professor Crawley was awarded a total of £2.3 million in grants by various bodies to study CFS/ME, making her the second highest funded researcher in the UK by 2016.[8]

Education[edit | edit source]

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

Notable research[edit | edit source]

Esther Crawley has been lead researcher or involved with a number of ME/CFS research projects that have drawn heavy criticism from individual patients, charities, patient groups, members of the medical profession and scientists. She maintained a high media profile, and her controversy research included a publication on the pseudoscientific and secretive Lightning Process for children with ME/CFS,[9] which encouraged them to use thought stopping and other psychological techniques to stop them believing that they were ill.

SMILE trial[edit | edit source]

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 with SMC.[9] The initial budget was £164,000 funded by the Linbury Trust and the Ashden Trust.[10]

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[11] and gave evidence in support during the trial ethics procedure.

A Freedom of Information Act 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."[12]

MAGENTA trial[edit | edit source]

In the MAGENTA trial, Professor Crawley is studying graded exercise therapy in children.[13] The protocol Managed Activity Graded Exercise iN Teenagers and pre-Adolescents (MAGENTA) feasibility randomised controlled trial: study protocol was published in 2017.* 2016, Managed Activity Graded Exercise iN Teenagers and pre-Adolescents (MAGENTA) feasibility randomised controlled trial: study protocol[14]

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. The feasibility study was due to be published in 2017 but was not published until it was many years overdue.[15] The final MAGENTA trial results showed that graded exercise therapy did not have any benefits over activity management, with activity management showing marginally better results although neither approach showed clinically significant improvement.[16] The MAGENTA trial provided weak evidence of a deterioration of 27-% of ME/CFS patients undergoing graded exercise therapy, compared to 17% with activity management.[16]

FITNET Trial[edit | edit source]

FITNET-NHS is a major study led by Dr Crawley funded by the NIHR which began in May 2016 and was due to be completed by May 2022.[17] 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 were also involved to "help us inform patients".

The study aim was 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[18] and on 28 November 2016 he wrote a follow-up post.[19]

There was severe criticism by patients, including in the Bristol University student newspaper. [20]

MEGA[edit | edit source]

MEGA, the controversial ME/CFS Epidemiology and Genomics Alliance, is a group of 15 UK researchers including Professor Crawley, who have submitted requests for large amounts of research funding for ME/CFS studies. This has been supported by some ME/CFS patients and charities, but strongly opposed by others, including the Opposing MEGA group. The MEGA research was turned down for funding.[citation needed]

Pervasive Refusal Syndrome[edit | edit source]

Crawley was one of the authors of a paper describing several children with the proposed psychological disorder Pervasive Refusal Syndrome (PRS) who "presented as" having chronic fatigue syndrome; 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.[21] It is not clear how PRS is distinguished from severe ME/CFS as the description of PRS matches that of severe/very severe 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[22] 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]." 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.[23][citation needed]

Retirement from practicing medicine[edit | edit source]

In 2024, it was publicly revealed that Esther Crawley was no longer registered with the UK's GMC, and as such was no longer able to practice medicine within the UK. In one research paper Crawley was referred to as "retired",[2] but it is not known why she retired from medical practice significantly before reaching the usual retirement age. She gave up her GMC registration in September 2023.[3][1] Crawley is also no longer listed as a Professor of Child Health at University of Bristol, a post which she had held for many years.[1] Despite having a very high media profile as a researcher and CFS/ME doctor for many years, Crawley had noticeably reduced her media presence in recent years, and had withdrawn from some roles within ME/CFS since approximately 2019, including leaving her voluntary roles within the UK charities Action for ME and Sussex & Kent ME/CFS Society.[24] In May 2023, she left her role as Consultant Paediatrician in Bath.[3] The NHS trust appointed Dr Rachel Chute as Consultant Psychiatrist/Paediatrician, and a second Psychiatrist to the Bath clinic formerly led by Crawley. Esther Crawley retains the right to use the honorific title Doctor as a result of her academic Ph.D.

Controversies and criticism[edit | edit source]

Esther Crawley's prominent influence on ME/CFS, particularly in the UK, which lasted almost twenty years, was referred to as a 'reign of terror' for patients.[25]

GMC Complaint[edit | edit source]

Dr Crawley was the subject of a complaint in 2011 to the UK's General Medical Council (GMC), relating to the SMILE trial.[26] The GMC did not uphold the complaint, and closed the case.[27]

NICE Guidelines Review Panel[edit | edit source]

Esther Crawley, along with Action for ME's medical advisor and others, were part of the Guideline Development Group (GDG) for the controversial CFS/ME NICE guidelines CG53, which were published in 2007. The guidelines recommended cognitive behavioral therapy and graded exercise therapy as the only main treatments for ME/CFS in the UK. The were heavily criticized, with significant rates of harm reported by patents. In 2019, a survey on behalf of NICE found significant rates of harm caused by both treatments.[28]

PACE trial support and Science Media Centre[edit | edit source]

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.”[29][30]

She also stated in a BBC interview that the PACE trial was “a great, great study.” [31]

Allegations of harassment and vexatious tactics from critics[edit | edit source]

Esther Crawley presented at a conference in April 2017 in which she characterized critics of her work as being "anti-science" and engaging in harassment. She alleged that people engaged in tactics such as vexatious Freedom of Information requests, spread fake news, and instigated vexatious investigations.[32][33]

Claims of harassment[edit | edit source]

Prof. Crawley has claimed to have been subject to harassment.[34]

The Young ME Sufferers Trust submitted a Freedom of Information Act (FOIA) request to her employer, the University of Bristol. The request to the university was followed up, then escalated to the UK's Information Commissioner, who instructed the university to comply with the request. The University of Bristol eventually responded "We have received no official reports of harassment of University staff by a third party between September 2010 and June 2015."[35]

An article was published in Vada Magazine examining the Freedom of Information request and the alleged threats and harassment of Esther Crawley, which 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 wrote that the PACE trial tribunal had found claims of harassment relating to the PACE trial were "grossly exaggerated". The article also reported that a claimed threat that Crawley showed in talks was actually an artist's illustration used in a Sunday Times magazine article cover, where it was used to illustrate a phone call to different person.[36]

Subsequently the University of Bristol published a statement on their website and stated that it was aware "Professor Crawley in particular has experienced significant harassment and personal abuse over several years". 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."[36]

MUPPETS conference[edit | edit source]

Esther Crawley presented at a conference advertised as A day with the MUPP(ET)S on May 18, 2017[37]. The term Muppets is a derogatory word meaning stupid person, but MUPP is also a term used for medically unexplained persistent physical symptoms, also known as medically unexplained physical symptoms (MUPS). ME patients and charities condemned the title of the muppets talk. The Tymes Trust issued condemnation [38]. The offensive name of the talk was reported in local media, and was changed prior to the event. [39] It is not known who chose the name of the event, and Esther Crawley was not the organiser.

Buzzfeed investigation[edit | edit source]

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.[40] Buzzfeed investigated the issues and for balance spoke to both Dr David Tuller and Prof 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'.[41]

Open letter to TEDxBristol regarding Crawley's talk "Disrupting Your View of ME"[edit | edit source]

Esther Crawley continued with her talks and presented at a TEDxBristol talk called "Disrupting Your View of ME" on 2 November 2017 [42] 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 [43]. 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 an open letter[44] 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[45].

ME advocate Jennifer Brea tried to avoid singling out a single researcher but finally wrote[46] 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.[47]

Criticism of Crawley by scientific community and alleged attempts to suppress criticism[edit | edit source]

Dr David Tuller has criticised Crawley's approach to science and challenged her on her accusations that he was engaging in libellous blogging.[48] 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.[49] Crawley 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 stated 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."

According to Tuller, 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 said he 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.[50]

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."[51] Based on this, Crawley appeared to have 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 [52] in which she failed to respond to any of his emails. It later transpired that Esther Crawley and Bristol university did send a letter to Tuller's employer, the University of Berkeley the contents of which was unclear, but which were presumed to be an attempt to make Berkeley discipline Tuller. However, according to Tuller, 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.[53]

SMILE Trial: Editorial correction and calls for retraction[edit | edit source]

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: randomized controlled trial'.[54] Despite considerable well-founded criticism, the journal chose not to retract the publication.

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.[54]

Ethics investigation by University of Bristol[edit | edit source]

In 2019, University of Bristol announced it was investigating Professor Esther Crawley for research ethics violations, after being informed that she had published eleven ME/CFS articles using a research exemption obtained for an unrelated "school absence" study.[55][56][57] These publications included a systematic review of ME/CFS treatment outcomes in adults, using data from the United Kingdom National Outcome Database. David Tuller, a public health researcher who had raised the issue with the NHS Health Research Authority, expressed uncertainty about the independence of this investigation. The final report concluded that the publications were research rather than not service evaluations, but that research ethics approval was not necessary since the patient data was anonymised. The report outlined a number of steps that Professor Crawley needed to take, including having corrections to some paper published, but that no disciplinary action was necessary Professor Crawley.[58]

In 2022, more than three years after the research ethics investigation, David Tuller contacted both the University of Bristol and the Health Research Authority to ask why seven of the eleven the research publications by Esther Crawley still had not been corrected, as had been recommended by the 2019 investigation report.[58][59] The University of Bristol replied that the journals had been contacted, but that they were unable to explain why corrections had not been made and were unable to produce a copy of the requests for corrections sent by Prof. Crawley, something David Tuller referred to as Did the Dog Eat Professor Crawley's Seven Missing Corrections?[60][61]

Corrections[edit | edit source]

Prof. Crawley, as principal investigator, was told to correction the following eleven publications.

1. Crawley E, Sterne JAC Association between school absence and physical function in paediatric chronic fatigue syndrome/myalgic encephalopathy Archives of Disease in Childhood 2009;94 pp. 752-756.

2. Crawley, E., Hunt, L. & Stallard, P. Anxiety in children with CFS/ME. Eur Child Adolesc Psychiatry 18, 683 (2009). doi: 10.1007/s00787-009-0029-4

3. Collin, S.M., Crawley, E., May, M.T. et al. The impact of CFS/ME on employment and productivity in the UK: a cross-sectional study based on the CFS/ME national outcomes database. BMC Health Serv Res 11, 217 (2011). doi: 10.1186/1472-6963-11-217

4. Webb, C.M., Collin, S.M., Deave, T. et al. What stops children with a chronic illness accessing health care: a mixed methods study in children with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME). BMC Health Serv Res 11, 308 (2011). doi: 10.1186/1472-6963-11-308

5. Crawley EM, Emond AM, Sterne JAC Unidentified Chronic Fatigue Syndrome/myalgic encephalomyelitis (CFS/ME) is a major cause of school absence: surveillance outcomes from school-based clinics BMJ Open 2011;1 p. e000252. doi: 10.1136/bmjopen-2011-000252

Correction: unidentified chronic Fatigue Syndrome/myalgic encephalomyelitis (CFS/ME) is a major cause of school absence: surveillance outcomes from school-based clinics

6. Crawley, E., Collin, S.M., White, P.D., Rimes, K., Sterne, J.A.C., May, M.T. and CFS/ME National Outcomes Database, 2013. Treatment outcome in adults with chronic fatigue syndrome: a prospective study in England based on the CFS/ME National Outcomes Database. QJM: An International Journal of Medicine, 106(6), pp.555-565. PMC3665909

Correction: QJM. 2013 Jun; 106(6) p p. 567. Published online 2013 May 24. doi: 10.1093/qjmed/hct122 PMC3870018.

7. Bould H, Collin SM, Lewis G, et al Depression in paediatric chronic fatigue syndrome Archives of Disease in Childhood 2013;98 p.425-428. PMID 23619200

8. Collin SM, Nuevo R, van de Putte EM, et al Chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME) is different in children compared to in adults: a study of UK and Dutch clinical cohorts BMJ Open 2015;5 p.e008830. doi: 10.1136/bmjopen-2015-008830

Correction: Chronic fatigue syndrome (CFS) or myalgic encephalomyelitis (ME) is different in children compared to in adults: a study of UK and Dutch clinical cohorts - November 01, 2019

9. Collin, S.M., Nikolaus, S., Heron, J., Knoop, H., White, P.D. and Crawley, E., 2016. Chronic fatigue syndrome (CFS) symptom-based phenotypes in two clinical cohorts of adult patients in the UK and The Netherlands. Journal of psychosomatic research, 81, pp.14-23. PMID 26800634

10. Norris T, Hawton K, Hamilton-Shield J, et al Obesity in adolescents with chronic fatigue syndrome: an observational study Archives of Disease in Childhood 2017(102) pp.35-39. PMID 27655658

Correction: Obesity in adolescents with chronic fatigue syndrome: an observational study - February 01, 2020

11. Brigden, A., Parslow, R.M., Gaunt, D. et al. Defining the minimally clinically important difference of the SF-36 physical function subscale for paediatric CFS/ME: triangulation using three different methods. Health Qual Life Outcomes 16, 202 (2018). doi: 10.1186/s12955-018-1028-2

BBC Complaint[edit | edit source]

Prof. Esther Crawley was interviewed on the BBC's Victoria Derbyshire show in 2016, along with Jane Colby of the Tymes Trust, about the launch of the FITNET-NHS trial involving cognitive behavioral therapy for children and young people with chronic fatigue syndrome. The BBC used briefing information from the Science Media Centre in both the Victoria Derbyshire show the BBC news online article, both of which were subject to a complaint, with the BBC Trust supporting several elements of the complaint, including that the Dutch FITNET study's results were "overstated".[62] The BBC online article was amended as a result of the complaint.[62]

Statements and research on severe ME[edit | edit source]

Despite the well-recognized fact that 25% of patients with ME have severe ME, with the UK charity for severe ME being called the 25% ME Group, Prof. Crawley has claimed the true figure is just 10% severely ill.[63] Prof. Crawley has been carrying out a number of different studies about the prevalence of ME/CFS in the UK using data from either schools or GPs, however many severely ill patients are housebound and don't have any medical professionals involved in their care due to a refusal to do home visits, and/or a refusal to accept that ME/CFS can be severe, or even life threatening.[64][65]

Action for ME funding[edit | edit source]

Action for ME, the UK's largest charity for ME/CFS, has funded a number of research studies that Esther Crawley was principle investigator for.[66][54] In 2016, Action for ME announced funding for a severe ME/CFS pediatric prevalence study led by Prof. Crawley using money donated by a donor who wanted the funding to benefit children with ME.[4][67] This study and the choice of Prof. Crawley to lead it were criticized by ME sufferers in forums and letters to the Action for ME chief executive; some ME sufferers reported that Action for ME had removed their posts for being "defamatory".[68] In 2018, Action for ME announced that AfME would not be funding that research, but did not provide a full explanation of the sources of the money and the reasons for doing so.[5]

Freedom of information requests[edit | edit source]

A number of Freedom of Information Act 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.[69]

Rejection of Canadian Consensus Criteria for ME/CFS[edit | edit source]

In an reply to an Editorial in the British Medical Journal by Fiona Godlee, 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."[70][71]

Prevalence at Age 16[edit | edit source]

In a study[72] published in 2016 using data from almost 6000 children in the Children of the 90s Project[73], 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[74] 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.[75]

Media coverage and interviews[edit | edit source]

Interviews, talks and blogs[edit | edit source]

Notable studies[edit | edit source]

  • 2011, The impact of CFS/ME on employment and productivity in the UK: a cross-sectional study based on the CFS/ME national outcomes database[79] - (Full text)
  • 2011, Unidentified chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) is a major cause of school absence: surveillance outcomes from school-based clinics[80] - (Full text)
  • 2012, Chronic disabling fatigue at age 13 and association with family adversity[81] - (Abstract)
  • 2013, Treatment outcome in adults with chronic fatigue syndrome: a prospective study in England based on the CFS/ME National Outcomes Database[64] - (Full text)
  • 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)[9] - (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)[82] - (Full text)
  • 2013, Depression in paediatric chronic fatigue syndrome[83] - (Full text) - partly funded by Action for ME
  • 2014, G160(P) Case series of Pervasive Refusal Syndrome presenting Chronic Fatigue: avoiding the pitfall of a wrong diagnosis[21] - (Full text)
  • 2015, Maternal and childhood psychological factors predict chronic disabling fatigue at age 13 years’. Journal of Adolescent Health[84] - (Full text)
  • 2016, Chronic fatigue syndrome (CFS) symptom-based phenotypes in two clinical cohorts of adult patients in the UK and The Netherlands[7] - (Full text)
  • 2016, "It’s personal to me": A qualitative study of depression in young people with CFS/ME[85] - (Full text)
  • 2016, Managed Activity Graded Exercise iN Teenagers and pre-Adolescents (MAGENTA) feasibility randomised controlled trial: study protocol[14] - (Full text)
  • 2016, Obesity in adolescents with chronic fatigue syndrome: an observational study’. Archives of disease in childhood[86] - (Full text)
  • 2016, Children’s experiences of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME): A systematic review and meta-ethnography of qualitative studies[87] - (Abstract)
  • 2016, Treatment for paediatric chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) and comorbid depression: a systematic review[88] - (Full text)
  • 2017, A qualitative investigation of eating difficulties in adolescents with chronic fatigue syndrome/myalgic encephalomyelitis[89] - (Full text)
  • 2017, Natural course of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis in adolescents[90] - (Full text)
  • 2017, Chronic Fatigue Syndrome and Chronic Widespread Pain in Adolescence: Population Birth Cohort Study[91] - (Full text)
  • 2017, Trends in the incidence of chronic fatigue syndrome and fibromyalgia in the UK, 2001–2013: a Clinical Practice Research Datalink study[65] - (Full Text)
  • 2017, Adult patients’ experiences of NHS specialist services for chronic fatigue syndrome (CFS/ME): a qualitative study in England[92]
  • 2017, (SMILE trial: before editorial correction) - Clinical and cost-effectiveness of the Lightning Process in addition to specialist medical care for paediatric chronic fatigue syndrome: randomised controlled trial[93] (Full text)
  • 2018, Adolescent’s descriptions of fatigue, fluctuation and payback in chronic fatigue syndrome/myalgic encephalopathy (CFS/ME): interviews with adolescents and parents[94] - (Full text)
  • 2018, Childhood sleep and adolescent chronic fatigue syndrome (CFS/ME): evidence of associations in a UK birth cohort[95] - (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[96] - (Full text)
  • 2019, (SMILE trial: Editorial correction) - Editor's Note on Correction to Crawley et al. 2018[54] - (Full text)
  • 2020, Development of a conceptual framework to underpin a health-related quality of life outcome measure in paediatric chronic fatigue syndrome/myalgic encephalopathy (CFS/ME): prioritisation through card ranking[98] - (Full text)
  • 2020, “The child’s got a complete circle around him ”. The care of younger children (5–11 years) with CFS/ME. A qualitative study comparing families’, teachers’ and clinicians’ perspectives’[99] - (Full text)

Online presence[edit | edit source]

Directorships and Shareholdings[edit | edit source]

Esther Madeleine Crawley has 1 total appointment.

See also[edit | edit source]

Learn more[edit | edit source]

References[edit | edit source]

  1. ↑ 1.0 1.1 1.2 Tuller, David (June 12, 2024). "Trial By Error: Professor Esther Crawley, Bristol University's Methodologically and Ethically Challenged Pediatrician, Has Retired From Medicine | Virology Blog". Virology blog. Retrieved August 15, 2024.
  2. ↑ 2.0 2.1 2.2 Low, Karen Jaqueline; Watford, Amy; Blair, Peter; Nabney, Ian; Powell, John; Wynn, Sarah L; Foreman, Julia; Firth, Helen; Ingram, Jenny (May 16, 2024). "Improving the care of children with GENetic Rare disease: Observational Cohort study (GenROC)—a study protocol". BMJ Open. 14 (5): e085237. doi:10.1136/bmjopen-2024-085237. ISSN 2044-6055. PMC 11103197. PMID 38760043.
  3. ↑ 3.0 3.1 3.2 3.3 "Request for information regarding Clinical leads for Paediatric Specialist Fatigue Service - a Freedom of Information request to Royal United Hospitals Bath NHS Foundation Trust". WhatDoTheyKnow. July 12, 2024. Retrieved August 15, 2024.
  4. ↑ 4.0 4.1 Action for ME. "Action for ME announces grant for Esther Crawley on incidence Severe Paediatric ME". Archived from the original on May 15, 2016.
  5. ↑ 5.0 5.1 "Action for ME terminates, by mutual agreement with the University of Bristol, contract to fund Crawley study". Science for ME. Retrieved August 31, 2019.
  6. ↑ "CMRC Executive Board and Becoming a Member". Retrieved July 17, 2019.
  7. ↑ 7.0 7.1 Collin, Simon M.; Nikolaus, Stephanie; Heron, Jon; Knoop, Hans; White, PeterD.; Crawley, Esther (February 2016). "Chronic fatigue syndrome (CFS) symptom-based phenotypes in two clinical cohorts of adult patients in the UK and The Netherlands". Journal of Psychosomatic Research. 81: 14–23. doi:10.1016/j.jpsychores.2015.12.006. ISSN 1879-1360. PMID 26800634.
  8. ↑ Action for ME (2016). "ME/CFS Research Funding - CMRC (Sept 2016)" (PDF).
  9. ↑ 9.0 9.1 9.2 Crawley, Esther; Mills, Nicola; Beasant, Lucy; Johnson, Debbie; Collin, Simon M; Deans, Zuzana; White, Kate; Montgomery, Alan (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 (SMILqE study)". Trials. 14 (415). doi:10.1186/1745-6215-14-415.
  10. ↑ The ME Association (March 2010). "£164,000 grant for study into the Lightning Process and children with ME - ME Association (March 2010)".
  11. ↑ "SMILE Protocol documents: Bristol University December 2013" (PDF). December 2013.
  12. ↑ Coyne, James (October 3, 2016). "Bristol University Refuses to Disclose Money Paid for Quack Therapy - James Coyne (Oct 2016)".
  13. ↑ "The MAGENTA trial: can we investigate the effectiveness and cost effectiveness of managed activity compared to graded exercise in teenagers and pre-adolescents". UK Clinical Trials Gateway.
  14. ↑ 14.0 14.1 Brigden, Amberly; Beasant, Lucy; Hollingworth, William; Metcalfe, Chris; Gaunt, Daisy; Mills, Nicola; Jago, Russell; Crawley, Esther (July 4, 2016). "Managed Activity Graded Exercise iN Teenagers and pre-Adolescents (MAGENTA) feasibility randomised controlled trial: study protocol". BMJ open. 6 (7): 011255. doi:10.1136/bmjopen-2016-011255. ISSN 2044-6055. PMC 4947787. PMID 27377634.
  15. ↑ Tuller, David (September 17, 2018). "Trial By Error: So What's Happening with the MAGENTA Trial?". Virology blog. Retrieved October 20, 2018.
  16. ↑ 16.0 16.1 Gaunt, Daisy M.; Brigden, Amberly; Harris, Shaun R. S.; Hollingworth, William; Jago, Russell; Solomon-Moore, Emma; Beasant, Lucy; Mills, Nicola; Sinai, Parisa; Crawley, Esther; Metcalfe, Chris (May 1, 2024). "Graded exercise therapy compared to activity management for paediatric chronic fatigue syndrome/myalgic encephalomyelitis: pragmatic randomized controlled trial". European Journal of Pediatrics. 183 (5): 2343–2351. doi:10.1007/s00431-024-05458-x. ISSN 1432-1076. PMC 11035451. PMID 38429546.
  17. ↑ "FITNET to treat Paediatric CFS/ME (NIHR)". NIHR.
  18. ↑ Tuller, David. "Trial By Error, Continued: The New FITNET Trial for Kids". Virology blog.
  19. ↑ Tuller, David. "Trial By Error, Continued: A Follow-Up Post on FITNET-NHS". Virology blog.
  20. ↑ "Backlash for 'landmark' University research trials". Epigram. November 2016.
  21. ↑ 21.0 21.1 Herberholz, N.; Collin, S.; McCowat, A.; Crawley, E. (April 1, 2014). "G160(P) Case series of Pervasive Refusal Syndrome presenting with Chronic Fatigue Syndrome: avoiding the pitfall of a wrong diagnosis" (PDF). Archives of Disease in Childhood. 99 (Suppl 1): A70–A70. doi:10.1136/archdischild-2014-306237.168. ISSN 0003-9888. 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. The diagnosis of PRS is important as the treatment is different
  22. ↑ Jaspers, Tine; Hanssen, G. M. J.; van der Valk, Judith A.; Hanekom, Johann H.; van Well, Gijs Th. J.; Schieveld, Jan N.M. (November 2009). "Pervasive refusal syndrome as part of the refusal–withdrawal–regression spectrum: critical review of the literature illustrated by a case report". European Child & Adolescent Psychiatry. 18 (11): 645–651. doi:10.1007/s00787-009-0027-6. ISSN 1018-8827. PMC 2762526. PMID 19458987.
  23. ↑ The treatment for pervasive refusal syndrome as described here for PRS, is exactly the same as the protocols used by patients worldwide, experienced clinicians, Dr. Nigel Speight.
  24. ↑ "Medical Advisers". Sussex & Kent ME/CFS Society. Retrieved August 15, 2024.
  25. ↑ Tuller, David (March 9, 2024). "Will MAGENTA's Null Results Finally End Professor Crawley's Long 'Reign of Error'?". Virology blog. Retrieved July 17, 2024.
  26. ↑ "GMC Complaint - Dr Esther Crawley". frownatsmile. July 31, 2011.
  27. ↑ "GMC says case closed". web.archive.org. January 26, 2013. Retrieved August 3, 2022.
  28. ↑ ME Association (April 3, 2019). "Forward ME and Oxford Brookes University announce results of patient survey on CBT and GET in ME/CFS 3 April 2019".
  29. ↑ "Expert reaction to Lancet study looking at treatments for Chronic Fatigue Syndrome/ME - Science Media Centre Feb. 17, 2011". February 17, 2011.
  30. ↑ "Expert reaction to new research into therapies for Chronic Fatigue Syndrome/ME - Science Media Centre Jan. 31, 2013". Science Media Centre. January 31, 2013.
  31. ↑ "Radio on ME/CFS Sat 5th Nov 9-10am GMT". Phoenix Rising. 2007.
  32. ↑ "DISCUSSION: Crawley: How to deal with anti-science BRS2017". Phoenix Rising ME/CFS Forums. Retrieved August 3, 2022.
  33. ↑ "DISCUSSION: Crawley: How to deal with anti-science BRS2017". Phoenix Rising ME/CFS Forums. Retrieved August 3, 2022.
  34. ↑ ME Association (July 29, 2011). "Death threats saga - transcript of discussion on BBC radio 4 today programme 29 July 2011".
  35. ↑ The Young ME Sufferers Trust. "No harassment at Bristol University" (PDF).
  36. ↑ 36.0 36.1 Lowe, Adam (October 30, 2017). "Esther Crawley claims harassment, university has no record". Retrieved August 3, 2022.
  37. ↑ "Meeting". Internet Archive. May 18, 2017.
  38. ↑ The Young ME Sufferers Trust. "The MUPP(ETS) Conference". facebook.com.
  39. ↑ "Esther Crawley - 18th May 2017 - A day with the MUPP(ets) and more". Phoenix Rising ME / CFS Forums. Retrieved July 17, 2019.
  40. ↑ Chivers, Tom. "A Controversial Therapy For ME Has Led To Claims Of Death Threats, Harassment, And Pseudoscience". Buzzfeed.
  41. ↑ Tuller, David. "Trial By Error: Professor Crawley's Bogus BuzzFeed Claims". Virology blog. Retrieved July 17, 2019.
  42. ↑ TEDxBristol. "TEDxBristol: The Speakers". TEDxBristol. Retrieved March 2, 2019.
  43. ↑ "TEDx Program". ted.com. Retrieved July 17, 2019.
  44. ↑ "Open letter to TEDxBristol regarding Esther Crawley's presentation on 2 November 2017". Science for ME. Retrieved March 2, 2019.
  45. ↑ Crawley, Esther (November 2, 2017). "TEDx talk" (MP4) (Video).
  46. ↑ Brea, Jennifer (December 30, 2017). "I've made a practice of not publicly calling out Esther Crawley in part because the issues we face are so much bigger than any one researcher". @jenbrea. Retrieved March 2, 2019.
  47. ↑ "Thread by @jenbrea: "I've made a practice of not publicly calling out Esther Crawley in part because the issues we face are so much bigger than any one researche […]"". threadreaderapp.com. Retrieved March 2, 2019.
  48. ↑ Tuller, David (May 3, 2017). "Trial By Error, Continued: My Libelous Blogging on Virology Blog". Virology blog. Retrieved March 2, 2019.
  49. ↑ Tuller, David (November 20, 2017). "Trial By Error: My Brief Encounter with Professor Crawley". Virology blog. Retrieved March 2, 2019.
  50. ↑ Tuller, David (November 22, 2017). "Trial By Error: Hey Bristol, Where Is My Cease and Desist Letter?". Virology blog. Retrieved March 2, 2019.
  51. ↑ "Trial By Error: The Crawley Chronicles, Continued". Virology blog. Retrieved July 17, 2019.
  52. ↑ Tuller, David (December 4, 2017). "Trial By Error: My One-Sided Correspondence with Professor Crawley". Virology blog. Retrieved March 2, 2019.
  53. ↑ "Trial By Error: Bristol's Complaint to Berkeley". Virology blog. December 23, 2017. Retrieved March 2, 2019.
  54. ↑ 54.0 54.1 54.2 54.3 Brown, Nick (July 2019). "Editor's Note on Correction to Crawley et al 2018". Archives of Disease in Childhood.
  55. ↑ Tuller, David (February 3, 2019). "Trial By Error: A Recap of the School Absence Study". Virology blog. Retrieved July 17, 2019.
  56. ↑ "Trial By Error: Bristol Investigating Crawley Papers". Virology blog. Retrieved July 17, 2019.
  57. ↑ "Trial By Error: A Bit More About Bristol's Investigation". Virology blog. Retrieved July 17, 2019.
  58. ↑ 58.0 58.1 University of Bristol (2019). "Report of a publications review jointly commissioned by the Health Research Authority and the University of Bristol". Health Research Authority. Retrieved October 29, 2019.
  59. ↑ Tuller, David (October 6, 2022). "Trial By Error: Update on Professor Crawley's Uncorrected Ethics Statements". Virology blog. Retrieved October 26, 2022.
  60. ↑ Tuller, David (October 16, 2022). "Trial By Error: Did the Dog Eat Professor Crawley's Seven Missing Corrections?". Virology blog. Retrieved October 26, 2022.
  61. ↑ Tuller, David (October 25, 2022). "Trial By Error: So the Dog Ate Professor Crawley's Corrections AND Her Correspondence As Well". Virology blog. Retrieved October 26, 2022.
  62. ↑ 62.0 62.1 BBC Trust (March 2017). "Editorial Standards Findings Appeals to the Trust and other editorial issues considered by the Editorial Standards Committee: Decisions by the Head of Editorial Standards, Trust Unit February and March 2017" (PDF). Retrieved March 2, 2019.
  63. ↑ BBC Radio 4 (2007). "Case notes: Programme number 10 - ME" (Transcript). Archived from the original on December 21, 2007.
  64. ↑ 64.0 64.1 Crawley, E.; Collin, S.M.; White, P.D.; Rimes, K.; Sterne, J.A.C.; May, M.T. (June 2013). "Treatment outcome in adults with chronic fatigue syndrome: a prospective study in England based on the CFS/ME National Outcomes Database". QJM: An International Journal of Medicine. 106 (6): 555–565. doi:10.1093/qjmed/hct061. ISSN 1460-2725. PMC 3665909. PMID 23538643.
  65. ↑ 65.0 65.1 Collin, Simon M; Bakken, Inger J; Nazareth, Irwin; Crawley, Esther; White, Peter D (March 30, 2017). "Trends in the incidence of chronic fatigue syndrome and fibromyalgia in the UK, 2001–2013: a Clinical Practice Research Datalink study". Journal of the Royal Society of Medicine. 110 (6): 231–244. doi:10.1177/0141076817702530. ISSN 0141-0768. PMC 5499564. PMID 28358988.
  66. ↑ Cite error: Invalid <ref> tag; no text was provided for refs named MAGENTA
  67. ↑ Action for ME. "Questions and answers". Retrieved August 19, 2019.
  68. ↑ "Esther Crawley Paediatric Prevalence Study Funded by Action for ME". Phoenix Rising ME / CFS Forums. Retrieved August 19, 2019.
  69. ↑ "Number of children re-diagnosed with a psychological or psychiatric illness, by Dr Esther Crawley or any team led by Dr Crawley, or any team where Dr Crawley has worked/advised/trained". whatdotheyknow.com.
  70. ↑ "Ending the stalemate over CFS/ME: British Medical Journal". British Medical Journal.
  71. ↑ ME Association (July 18, 2011). "Use of the Canadian criteria to diagnose CFS: ME Association".
  72. ↑ "Chronic Fatigue Syndrome At Age 16 Years: Pediatrics (Jan 2016)". Pediatrics. January 22, 2016.
  73. ↑ "Children Of The 90s Project: Avon Longitudinal Study Of Parents And Children".
  74. ↑ Radio Four (January 2016). "BBC Radio Four Womans Hour Interview with Esther Crawley: Jan 2016".
  75. ↑ "Copy of unpublished letter from Charles Shepherd to Pediatrics: Feb 2016". Phoenix Rising. February 2016.
  76. ↑ Crawley, Esther (2017). "Doing what is right in a controversial field". National Institute for Health Research. Retrieved February 16, 2019.
  77. ↑ Crawley, Esther (November 2016). "Trials and tribulations". New Scientist. 232 (3099): 20–21. doi:10.1016/s0262-4079(16)32073-5. ISSN 0262-4079.
  78. ↑ Stoll, Sarah; Loades, Maria; Crawley, Esther (October 19, 2016). "Anxiety in paediatric Chronic Fatigue Syndrome (CFS/ME): A systematic review".
  79. ↑ Collin, Simon M; Crawley, Esther; May, Margaret T; Sterne, Jonathan AC; Hollingworth, William (December 2011). UK CFS/ME National Outcomes Database. "The impact of CFS/ME on employment and productivity in the UK: a cross-sectional study based on the CFS/ME national outcomes database". BMC Health Services Research. 11 (1). doi:10.1186/1472-6963-11-217. ISSN 1472-6963. PMC 3184626. PMID 21923897.
  80. ↑ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3244656/
  81. ↑ https://publications.aap.org/pediatrics/article/130/1/e71/29892/Chronic-Disabling-Fatigue-at-Age-13-and
  82. ↑ Crawley, Esther; Mills, Nicola; Hollingworth, Will; Deans, Zuzana; Sterne, Jonathan A; Donovan, Jenny L; Beasant, Lucy; Montgomery, Alan (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)". Trials. 14 (1): 444. doi:10.1186/1745-6215-14-444. ISSN 1745-6215. PMC 3879423. PMID 24370208.
  83. ↑ Crawley, Esther; Rimes, Katharine; Lewis, Glyn; Collin, Simon M.; Bould, Helen (June 1, 2013). "Depression in paediatric chronic fatigue syndrome". Archives of Disease in Childhood. 98 (6): 425–428. doi:10.1136/archdischild-2012-303396. ISSN 0003-9888. PMID 23619200.
  84. ↑ Collin, Simon M.; Tilling, Kate; Joinson, Carol; Rimes, Katharine A.; Pearson, Rebecca M.; Hughes, Rachael A.; Sterne, Jonathan A.C.; Crawley, Esther (February 2015). "Maternal and Childhood Psychological Factors Predict Chronic Disabling Fatigue at Age 13 Years". Journal of Adolescent Health. 56 (2): 181–187. doi:10.1016/j.jadohealth.2014.09.002. ISSN 1054-139X.
  85. ↑ Taylor, Anna K; Loades, Maria; Brigden, Amberly LC; Collin, Simon M; Crawley, Esther (April 2017). "'It's personal to me': A qualitative study of depression in young people with CFS/ME". Clinical Child Psychology and Psychiatry. 22 (2): 326–340. doi:10.1177/1359104516672507. ISSN 1359-1045. PMC 5405821. PMID 27742756.
  86. ↑ Norris, T; Hawton, K; Hamilton-Shield, J; Crawley, E (January 2017). "Obesity in adolescents with chronic fatigue syndrome: an observational study". Archives of Disease in Childhood. 102 (1): 35–39. doi:10.1136/archdischild-2016-311293. ISSN 0003-9888. PMC 5256402. PMID 27655658.
  87. ↑ Parslow, Roxanne M; Harris, Sarah; Broughton, Jessica; Alattas, Adla; Crawley, Esther; Haywood, Kirstie; Shaw, Alison (January 2017). "Children's experiences of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME): a systematic review and meta-ethnography of qualitative studies". BMJ Open. 7 (1): e012633. doi:10.1136/bmjopen-2016-012633. ISSN 2044-6055. PMC 5253584. PMID 28087544.
  88. ↑ Loades, Maria E; Sheils, Elizabeth A; Crawley, Esther (October 2016). "Treatment for paediatric chronic fatigue syndrome or myalgic encephalomyelitis (CFS/ME) and comorbid depression: a systematic review". BMJ Open. 6 (10): e012271. doi:10.1136/bmjopen-2016-012271. ISSN 2044-6055. PMC 5073581. PMID 27729349.
  89. ↑ Harris, Sarah; Gilbert, Matthew; Beasant, Lucy; Linney, Catherine; Broughton, Jessica; Crawley, Esther (January 2017). "A qualitative investigation of eating difficulties in adolescents with chronic fatigue syndrome/myalgic encephalomyelitis". Clinical Child Psychology and Psychiatry. 22 (1): 128–139. doi:10.1177/1359104516646813. ISSN 1359-1045. PMC 5207298. PMID 27215228.
  90. ↑ Crawley, Esther; Heron, Jon; Sterne, Jonathan AC; Stansfeld, Stephen A.; Nuevo, Roberto; Tilling, Kate; Collin, Simon M.; Norris, Tom (June 1, 2017). "Natural course of chronic fatigue syndrome/myalgic encephalomyelitis in adolescents". Archives of Disease in Childhood. 102 (6): 522–528. doi:10.1136/archdischild-2016-311198. ISSN 0003-9888. PMID 28104625.
  91. ↑ Norris, Tom; Deere, Kevin; Tobias, Jon H.; Crawley, Esther (March 2017). "Chronic Fatigue Syndrome and Chronic Widespread Pain in Adolescence: Population Birth Cohort Study". The Journal of Pain. 18 (3): 285–294. doi:10.1016/j.jpain.2016.10.016.
  92. ↑ Broughton, Jessica; Harris, Sarah; Beasant, Lucy; Crawley, Esther; Collin, Simon M (December 2017). "Adult patients' experiences of NHS specialist services for chronic fatigue syndrome (CFS/ME): a qualitative study in England". BMC Health Services Research. 17 (1). doi:10.1186/s12913-017-2337-6. ISSN 1472-6963. PMC 5457632. PMID 28576141.
  93. ↑ Crawley, Esther M; Gaunt, Daisy M; Garfield, Kirsty; Hollingworth, William; Sterne, Jonathan A C; Beasant, Lucy; Collin, Simon M; Mills, Nicola; Montgomery, Alan A (February 2018). "Clinical and cost-effectiveness of the Lightning Process in addition to specialist medical care for paediatric chronic fatigue syndrome: randomised controlled trial". Archives of Disease in Childhood. 103 (2): 155–164. doi:10.1136/archdischild-2017-313375. ISSN 0003-9888. PMC 5865512. PMID 28931531.
  94. ↑ Parslow, Roxanne M; Anderson, Nina; Byrne, Danielle; Shaw, Alison; Haywood, Kirstie L; Crawley, Esther (December 4, 2018). "Adolescent's descriptions of fatigue, fluctuation and payback in chronic fatigue syndrome/myalgic encephalopathy (CFS/ME): interviews with adolescents and parents". BMJ Paediatrics Open. 2 (1): e000281. doi:10.1136/bmjpo-2018-000281. ISSN 2399-9772. PMC 6307594. PMID 30613800.
  95. ↑ Collin, Simon M.; Norris, Tom; Gringras, Paul; Blair, Peter S.; Tilling, Kate; Crawley, Esther (June 2018). "Childhood sleep and adolescent chronic fatigue syndrome (CFS/ME): evidence of associations in a UK birth cohort". Sleep Medicine. 46: 26–36. doi:10.1016/j.sleep.2018.01.005. ISSN 1389-9457. PMC 5974860. PMID 29773208.
  96. ↑ Brigden, Amberly; Parslow, Roxanne M; Gaunt, Daisy; Collin, Simon M; Jones, Andy; Crawley, Esther (October 19, 2018). "Defining the minimally clinically important difference of the SF-36 physical function subscale for paediatric CFS/ME: triangulation using three different methods". Health and Quality of Life Outcomes. 16 (1). doi:10.1186/s12955-018-1028-2. ISSN 1477-7525. PMID 30340599.
  97. ↑ Katz, Ben Z; Collin, Simon M; Murphy, Gabrielle; Moss-Morris, Rona; Wyller, Vegard Bruun; Wensaas, Knut-Arne; Hautvast, Jeannine L.A.; Bleeker-Rovers, Chantal P; Vollmer-Conna, Uté; Buchwald, Dedra; Taylor, Renée; Little, Paul; Crawley, Esther; White, Peter D; Lloyd, Andrew (April 3, 2018). "The international collaborative on fatigue following infection (COFFI)". Fatigue: Biomedicine, Health & Behavior. 6 (2): 106–121. doi:10.1080/21641846.2018.1426086. ISSN 2164-1846. PMID 30666281.
  98. ↑ Parslow, Roxanne M.; Anderson, Nina; Byrne, Danielle; Haywood, Kirstie L.; Shaw, Alison; Crawley, Esther (January 6, 2020). "Development of a conceptual framework to underpin a health-related quality of life outcome measure in paediatric chronic fatigue syndrome/myalgic encephalopathy (CFS/ME): prioritisation through card ranking". Quality of Life Research. doi:10.1007/s11136-019-02399-z. ISSN 0962-9343.
  99. ↑ Brigden, Amberly; Shaw, Alison; Barnes, Rebecca; Anderson, Emma; Crawley, Esther (June 9, 2020). "" The child's got a complete circle around him ". The care of younger children (5-11 years) with CFS/ME. A qualitative study comparing families', teachers' and clinicians' perspectives'". Health & Social Care in the Community. doi:10.1111/hsc.13029.

cognitive behavioral therapy (CBT) - A type of psychotherapy geared toward modifying alleged unhealthy thinking, behaviors or illness beliefs. One of the treatment arms used in the controversial PACE trial.

See cognitive behavioral therapy.

graded exercise therapy (GET) - A gradual increase in exercise or activity, according to a pre-defined plan. Focuses on overcoming the patient's alleged unhelpful illness beliefs that exertion can exacerbate symptoms, rather than on reversing physical deconditioning. Considered controversial, and possibly harmful, in the treatment or management of ME. One of the treatment arms of the controversial PACE trial.

See Graded exercise therapy.

UK CFS/ME Research Collaborative (CMRC) - A UK group of researchers and ME/CFS patient groups led by Professor Stephen Holgate. Its launch in 2013 was covered by the Science Media Centre. Since 2014, the collaborative sponsors the CFS/ME Research Collaborative Conference.

See ME/CFS.

somatic symptom disorder A psychiatric term to describe an alleged condition whereby a person's thoughts somehow cause physical symptoms. The actual existence of such a condition is highly controversial, due to a lack of scientific evidence. It is related to other psychiatric terms, such as "psychosomatic", "neurasthenia", and "hysteria". Older terms include "somatization", "somatoform disorder", and "conversion disorder". Such terms refer to a scientifically-unsupported theory that claims that a wide range of physical symptoms can be created by the human mind, a theory which has been criticized as "mind over matter" parapsychology, a pseudoscience.

See Association of Young People with ME.

Association of Young People with ME (AYME) - AYME was a UK national charity supporting children and young people affected by ME/CFS with members under 25. It's lead medical advisor was Doctor Esther Crawley. In April 2017 the charity merged with Action for ME, forming its Children's Services department run by Mary-Jane Willows.

randomized controlled trial (RCT) - A trial in which participants are randomly assigned to two groups, with one group receiving the treatment being studied and a control or comparison group receiving a sham treatment, placebo, or comparison treatment.

projection 1. In psychology, a defense mechanism involves attribution unpleasant feelings to another person. May be abusive, e.g., a person accusing someone else of something that they themselves are doing or feeling. Often linked to gaslighting.
2. Estimate or forecast based on trends.
3. Something that extends out from something else.
4. How something is presented. (Learn more: www.forbes.com)

Concerning living organisms, such as cells or the human body.[1]  Physio logical (as in physio) is not to be confused with psych ological (emotional stress).

physiological Concerning living organisms, such as cells or the human body.  Physio logical (as in physio) is not to be confused with psych ological (emotional stress).

(HR) - the number of times the heart beats within a certain time period, usually a minute[2]

heart rate (HR) - the number of times the heart beats within a certain time period, usually a minute

NICE guidelines Clinical guidelines used in the UK.

PACE trial A controversial study which claimed that CBT and GET were effective in treating "CFS/ME", despite the fact that its own data did not support this conclusion. Its results and methodology were widely disputed by patients, scientists, and the peer-reviewed scientific literature.

medically unexplained physical symptoms (MUPS) - Technically, this term means that no cause or explanation for the patient's symptoms has yet been found. However, patients diagnosed with "MUPS" are generally lumped into a psychosomatic, or psychologically-caused category by those in the medical profession, without any scientific basis for doing so.

See medically unexplained physical symptoms.

medically unexplained physical symptoms (MUPS) - Technically, this term means that no cause or explanation for the patient's symptoms has yet been found. However, patients diagnosed with "MUPS" are generally lumped into a psychosomatic, or psychologically-caused category by those in the medical profession, without any scientific basis for doing so.

The BMJ (previously the British Medical Journal) is a weekly peer-reviewed medical journal.

BMJ The BMJ (previously the British Medical Journal) is a weekly peer-reviewed medical journal.

Short Form 36-Item Health Survey (SF-36) - A 36-item patient-reported questionnaire, used to determine patient health status and quality of life.

cognitive behavioral therapy (CBT) - A type of psychotherapy geared toward modifying alleged unhealthy thinking, behaviors or illness beliefs. One of the treatment arms used in the controversial PACE trial.

See Action for ME.

Action for ME (AfME) - Action for ME is a British non-profit organization that was set up in 1987 as The M.E. Action Campaign. Its founders were Martin Lev, Sue Findlay and Clare Francis. In September 1993 it changed its name and logo to Action for ME and Chronic Fatigue. It then changed its name in 1993 to Action for ME.

Canadian Consensus Criteria (CCC) - A set of diagnostic criteria used to diagnose ME/CFS, developed by a group of practicing ME/CFS clinicians in 2003. The CCC is often considered to be the most complex criteria, but possibly the most accurate, with the lowest number of patients meeting the criteria. Led to the development of the International Consensus Criteria (ICC) in 2011.

chronic fatigue (CF) - Persistent and abnormal fatigue is a symptom, not an illness. It may be caused by depression, multiple sclerosis, fibromyalgia, chronic fatigue syndrome or many other illnesses. The term "chronic fatigue" should never be confused with the disease chronic fatigue syndrome.

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.

An alternate term that is sometimes used for myalgic encephalomyelitis, by people who believe the evidence for inflammation in ME is insufficient. This terminology reflects the belief that the "-itis" suffix implies inflammation.

myalgic encephalopathy An alternate term that is sometimes used for myalgic encephalomyelitis, by people who believe the evidence for inflammation in ME is insufficient. This terminology reflects the belief that the "-itis" suffix implies inflammation.

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.

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