Keith Geraghty, B.Sc., B.Sc., M.Dip., M.P.H., Ph.D., is an Honorary Research Fellow within the Primary Care Section of the Institute of Population Health at the University of Manchester. His role is to support current grant applications and research projects and to conduct independent work in the area of public health, health services research and primary care. Keith has a special interest in medically unexplained symptoms, patient safety issues, doctor patient relations, and Chronic Fatigue Syndrome/ME.

Dr. Keith Geraghty is a member of the Royal Society of Medicine, the East Midlands Collaboration for Leadership in Health and Social Care, the International Association for CFS/ME Research.  He is also a member of the UK CFS/ME Collaborative (CMRC) and has contributed to a discussion thread on the Phoenix Rising forum about our petition ‘Opposing MEGA’.  MEGA is the acronym for the M.E./CFS Epidemiology and Genomics Alliance, a project of the CMRC.  Professor Stephen Holgate is Chair of the CMRC.

Comments posted on Phoenix Rising by Keith GeraghtyNovember 2016 

my dealings with the CMRC

I just want to recount to you all what joining CMRC meant. I contacted Prof. Holgate to join the CMRC – in good faith thinking it was a new beginning in ME/CFS research, with myself being a junior UK-based ME/CFS researcher. My first emails to Prof. Holgate were ignored. I actually sent three emails over months that were all ignored. I then had to contact the University of Southampton Press office to get Prof. Holgate’s direct line. I eventually got to send his secretary an email and she forwarded to him and he eventually got in touch with me. I intially asked could I have a chat on the phone – he said no, he asked me to travel to see him, now thats roughly an 8 hour car journey and meeting time just to have a talk, I could easily do in 25-30 mins by phone.

I was sent forms to complete to join the CMRC. Months went past and I heard nothing back. I phoned his secretary to ask whats happening to my application – she told me that my application had gone to Esther Crawley in Bristol for screening — I was like “what”. It then turned out that my application for membership had to be approved by the CMRC at their next meeting – this happened, and I was informed I needed to supply factual evidence of CFS/ME publciations in the last year – at the time I was only beginning to publish in this field.

To cut a long story short I think it took over 1/.5 years to join the CMRC. Since I have joined I’ve not once been asked to attend a single meeting. Recently, Prof. Holgate organised a meeting of researchers he and Crawley picked to come to Bristol to discuss MEGA – they obviously didnt invite me — after all who am I, only one of the few active ME/CFS researchers in the UK and unlike the very respected George Davy Smith who has told the CMRC conference two years in a row that he knows nothing much about ME/CFS – I would argue, I do.

Now lets move on to the even better story. In late 2014 I officially applied for access to the PACE trial data set from the PACE team. At first I was ignored (see a trend here) – I then contacted Prof. Holgate to ask him if he could ask fellow CMRC board member, Prof. White, if I could have access *given this was meant to be a collaborative, Any ways – my request was denied, with absolutely no reason given *such is the social etiquette of these so-called famous scientists. I went back to Holgate who advised me to make a complaint to the MRC. I considered this but later decided not to . however ……..

within weeks, a complaint was made to my home institution, the University of Manchester – from Prof. Peter White, stating I was acting in a highly unprofessional manner. (he had not contacted me)
wait for the best bit — when I asked the nature of the complaint I was supplied with screenshots of my posts on Phoenix Rising (as an individual) and copies of emails. I looked at these emails and realised that they were not emails I had to sent to Prof. White or anyone one else – they were emails I had previously written to Prof. Holgate telling him how upset and proplexed I felt about the PACE trial and the way patients have been treated (including copying in some statements from patients about their anger)
…..so essentially, Prof. Holgate had shared my personal emails to him, with White and I assume the whole PACE club.
…..yes, Prof. Holgate shared my emails complaining about the PACE trial, with the PACE trial author/authors

other PACE club members have made a similar complaint about a recent PACE-gate editorial I wrote in the Journal of Health Psychology.

What faith could I have in Prof. Holgate or Esther Crawley, given my personal experience of the CMRC? Imagine any other researcher had to endure what I had to? – yet Prof. Holgate recently went to support Esther Crawley give a talk to journalists at the Science Media Centre in London to promote FITNET. It appears only researchers hand-picked by Holgate and the PACE club are brought into the CMRC – the same appears true for MEGA. Its not a collaborative in my experience – thats a misnomer, it appears to be a PR and body to seek funding (primarily for Esther Crawley it would appear from the outside), via MEGA, which she will control and lead from Bristol.

Given the outrageous statements Crawley made last week of radio BBC Bristol, that PACE was a “great great trial” and that critics were a “tiny minority” and that rates of CFS among kids is 2% and that CBT-GET (FITNET) can bring about a 63-67% recovery rate – I have no faith in her as an informed and knowledgeable ME/CFS researcher.

thats my story and perception of the CMRC – less collaborative and more cabal.
(source – comment #866)

the first complaint by White was dismissed – there was another complaint also, I wont say who by but very easy to guess. I believe the aim of both complaints was to tarnish my name, cause distress, enourage me to stop my work in this area and to generate some response from the University that hosts me – this was a clear case of bullying and harassment.

The sustained nature of these vexatious complaints to my host institution has provoked me to put my story in the public domain, sharing it here on PR with the patient community and patient advocates.
(#921)

I simply wanted to share the facts of my experience of a junior researcher who sought to join the CMRC – because the idea its a big tent, is fairly disingenuous – critical views/researchers are not well represented, and I agree with Prof Edwards that the CMRC have sought to get the patient community to support MEGA, without details of the study and without any recognition of past trials that pushed the psyco-behavioural model as an effective treatment, and MEGA is being headed by a researcher who believes 2% of kids have CFS and can be cured with CBT-GET, and has tested unscientific mind-control (the Lightening Process) on children with the illness. The patient community should not be asked to support such researchers or research.

I tweeted about trial names and the clear lack of sensetivity among the PACE-cohort and related cabal – eg FINE trial, PACE, SMILE, FITNET – clear lack of understanding of the reality of this illness.
(#925)

The sustained nature of these vexatious complaints to my host institution has provoked me to put my story in the public domain, sharing it here on PR with the patient community and patient advocates.

I may suffer even more negative consequences just for writing an account of my experience over the past two years, but I feel I have no choice but to stand up against bullying and harassment. What is ironic, is that the PACE team claim patients have harassed them, yet their claims were not substantiated in the Information Tribunal.

I am doing fine, I appreciate every comment of support, I dont need or want any accolades, I just think its important the patient community are given accurate information about many things – I am very busy with my work and hope to have some good papers on the way, and a very interesting project starting in 2017 looking at neuro-cognitive function in ME/CFS.
(#948)

It was obvious to me from the inception of the CMRC that there would be problems in the future. Prof. Holgate’s email to Simon Wessely and his subsequent response calling for ‘a sprinkling of psychologists’ was telling. My own personal experience of finding it almost impossible to join, then membership meaning nothing tangible per se, showed me that the CMRC was not an inclusive tent at all. – its a bit like ‘more of the same, with a new hat’.

MEGA is promoted without details of what it will actually involve – I would argue it should be designed and then there should be a consultation process and then the CMRC should come to the patient community to seek support. – however given Esther Crawley’s recent statements and trials on kids with CFS (eg the Lightening Process and FITNET) I dont think she is the right person to head up any large biomedical study of ME/CFS.

I agree with Prof. Edwards, the closeness of the CMRC to the MRC may blur a line in conflict of interest – the CMRC has direct access to the MRC (Prof. Holgate has been involved with them for a long time and MRC members are emailed and sit in on meetings, as does the Science Media Centre) – I have no problem with promoting science, but I have a problem with Prof. Holgate and Esther Crawley promoting themselves and asking us all to support them as they funnel funds to Esther Crawley in Bristol. She has had more than £3.5 million in funding – I know of two other established researchers who applied to the MRC for funding to do biomedical studies and they were turned down – they didnt have the CMRC behind them and access to the MRC.

I want scarce research funds to be allocated fairly – what is fair in assisting Esther Crawley to get a £5 million pound MEGA trial. Dont forget she calls PACE “a great great trial”, she has previously said some parents sustain illness beliefs in children with CFS and she seems to know very little about the pathophysiology of the illness – she believes re-setting sleep patterns resets the HPA axis and brings about recovery – this seems to be the level of her biomedical knowledge, simplistic, basic, narrow, lacking in wider insight or more advanced scientific knowledge. She is not qualified to lead MEGA in my opinion and is tarnished by her disasterous statements in the media about the illness — if MEGA is to go ahead, someone new, an expert, with no history of patient acrimony, needs to take charge. Then we need to go through the process I described above and in the interests of fairness Prof. Holgate needs to start supporting all UK ME/CFS researchers, not just hand-picked friends, or those people Simon Wessely points him towards.

I have found it much easier to make links with ME/CFS researchers in the US, I have found US researchers much more open and generous with time and assistance. I was offered an NIH grant to attend the recent IACFS/ME conference in Florida, but unfortunately I was unable to attend and recently I have become an editorial board member of the Journal of Fatigue, Biomedicine, Health and Behaviour. It is such a shame that the UK appears to be stuck in a guagmire.

It is very telling that Dr Nacul at the London School of Hygiene had to go to the US to get an award to fund his virus study, is Prof. Holgate and the CMRC working for people like Dr Nacul or me, to help us get funding? The fairness soon evaporates when you look at these examples. I have submitted my first grant applciation to the US and I co-wrote a second application to the US – this situation exemplifies everything that is wrong with the UK ME/CFS research environment and the CMRC.

Big doesnt mean better – the PACE trial was the biggest ever RCT in ME/CFS – we all know how that turned out. Lets not waste another £5 million.
(#1029)

Source – http://forums.phoenixrising.me/index.php?threads/petition-opposing-mega.47466/

A neat summary of the response to this account of events –

@Keith Geraghty this seems to be consistent with the suspicion that the CMRC primarily exists to serve the CBT/GET lobby while presenting an outward appearance of listening to patients and doing serious biologically oriented research. (#874)

Keith Geraghty has authored and co-authored a number of published articles, including the following recommended reading –

‘PACE-Gate’: When clinical trial evidence meets open data access
Geraghty, K. 23 Sep 2016 In : Journal of Health Psychology.

Cognitive behavioural therapy in the treatment of chronic fatigue syndrome: A narrative review on efficacy and informed consent
Geraghty, K. & Blease, C. 15 Sep 2016 In : Journal of Health Psychology.

Chronic fatigue syndrome: is the biopsychosocial model responsible for patient dissatisfaction and harm?
Geraghty, K. & Esmail, A. 1 Aug 2016 In : British Journal of General Practice. 66 , 649, p. 437-438 2 p.

The ‘all in the mind’ myth of myalgic encephalomyelitis/chronic fatigue syndrome
Geraghty, K. 27 Jun 2016 In : Nursing in Practice.

Deviant cellular and physiological responses to exercise in Myalgic Encephalomyelitis and chronic fatigue syndrome
Twisk, F. & Geraghty, K. 1 Nov 2015 In : Jacobs Journal of Physiology. 1, 2

Chronic Fatigue Syndrome and the Biopsychosocial Model: A Review of Iatrogenesis in the Medical Encounter
Geraghty, K., 1 Oct 2015Student thesis: Master’s Thesis

Chronic Fatigue Syndrome and the Biopsychosocial Model: A Review of Harm in the Medical Encounter
Geraghty, K., 1 Jun 2015Student thesis: Master’s Thesis

Full list and more about Dr. Keith Geraghty on his University of Manchester profile.

Sign Opposing MEGA – A Vote of No Confidence in MEGA Research for M.E.

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