If I was a clinician who had been given a hard time by ME/CFS patients and organisations, the setting up of a new 'fatigue' clinic that gave many of the people attending a POTS label and avoided all mention of ME/CFS would seem like a very good idea.
Perhaps there's some history that I'm unaware of. Was Julia Newton ever given a hard time by ME/CFS patients and organisations ? I've only ever seen complimentary stuff about her and she's had the confidence of the MEA and ME Research as well as AfME so I'm a bit puzzled.
I find it difficult to believe that Professor Newton, with her senior role in the Hospital Trust and her long history with ME/CFS, including being the Medical Advisor of AfME during the period when it was a lot less enlightened about ME/CFS than it is currently, has not had some influence on the treatment of people diagnosed with ME/CFS by the Trust and the training and professional oversight of the people who provide the ME/CFS service. After all, she was selected for the role in the Cochrane Exercise Therapy Review on the basis of her long involvement in ME/CFS - she is recognised as an expert. It's hardly credible that the Trust would have an ME/CFS expert, employed in a teaching and Medical Director role, and not have them have any input into the Trust's ME/CFS service. But yes, we are speculating. I guess it is possible to find out - these are public services.
According to the list on Newton's staff profile page
https://www.ncl.ac.uk/civi/staff/profile/julianewton.html#publications her first published research on ME/CFS was in in 2007, this according Newton's own 2010 paper was at least 2 years after the the Psychology Department run CFS service at Newcastle was started.
The Newcastle NHS Chronic Fatigue Syndrome Service: not all fatigue is the same
https://pubmed.ncbi.nlm.nih.gov/21132135/
This service evaluation examined the proportion of those referred to a specialist CFS service fulfilling the Fukuda diagnostic criteria for CFS and the alternative fatigue-associated diagnoses. The CFS database was interrogated to include every patient referred to the Newcastle service from November 2008 to December 2009. All medical notes were reviewed and the diagnosis, sex and age recorded. Data were compared to a previous service evaluation (2005–07)
I've previously tried to understand the discussions on the Cochrane and JN/GET threads - it's always difficult to grasp what was intended when not reading as a thread develops, however looking backwards it appears to me as though there was some misunderstanding of Newton's role.
The GET discussions seems predicated on Newton being part of the CFS service, while actually in the relevant video she is talking only about the CRESTA service. Of course the diagnostic capture of ME/POTS remains an issue but I don't see anywhere that Newton is looking to exploit that capture.
There's an earlier video from 2012, where Newton is giving a talk and provides an uncritical presentation of the 2007 Guideline, but given her audience I'm not sure what else she could have done, she was simply status the status quo, and even makes the (arguable ?) point that as part of the NHS there is no choice but to follow the Guideline.
In the video JN does talk about 'our' but that is clearly used (at least at some points) to mean the UK collectively - she's talking to a European audience, so I don't think it means she was taking moral ownership of the then Newcastle CFS service, as that's something that never comes up in her CV.
I don't know what the criteria for the Cochrane selection was but I would have thought Newton qualified on the basis of research - but perhaps Hilda or others were also confused between the CRESTA service - which of course Julia Newton was responsible for, and the CFS service which has run from before JN even began to research ME/CFS and which she has apparently never had any formal involvement with.
The bureaucracy of UK health is difficult at times to fathom. Departmental divisions can be jealously guarded both by administrators and clinicians - that Julia Newton whatever her expertise hasn't been asked to advise on a service run by a different department would not be out of character in an NHS Trust hospital.
Also her differing roles are not all within the Trust - her teaching and research roles are part of her University Professorship, and her Medical Director role is with a separate organisation. Currently her only role in the Trust appears to be that of a clinician.
To summarise - JN only started to research ME/CFS some years after the Newcastle BPS type CFS service had been created. There's no evidence JN ever worked in the CFS service, and professional rivalries may have ensured she had little to do with it.
JN was instrumental in setting up the CRESTA service some 8 years after the CFS service began, CRESTA specifically excludes patients who meet the CFS criteria, and at a time when JN was generally well recieved by ME/CFS patients and organisations (?). Diagnostic capture may mean that some patients who might more properly be diagnosed with ME/CFS receive a POTS diagnosis, and the CRESTA service may suggest inappropriate activity therapy for those patients.
JN has expressed the view (based on her research ?) that up to a third of patients diagnosed with ME/CFS actually have POTS. If JN is correct then it is certainly in the interest of patients that they receive the right diagnosis.
I think this probably matters because Newton has been the only(?) properly funded UK based biomed researcher looking at ME/CFS, and IMO we should be careful how we represent those who take on what at times looks like an unrewarding area of investigation.
