United Kingdom: Newcastle-upon-tyne Hospital Trust

Hutan · Nov 27, 2021

CRG said: ↑

my reading is that ME/CFS patients are parsed very strictly away from the CRESTA service and directed into the Psychology service set up. So I wouldn't see the CRESTA service as a way to give GET to ME/CFS patients, rather the opposite, it looks like CRESTA is ME/CFS adverse.

Under the NHS, POTS has a separate clinical pathway from ME/CFS, so again I wouldn't see the CRESTA clinic acquiring ME/CFS patients via a POTS diagnosis, excepting of course some patients may fall between two diagnostic stools, but that's always been the case.
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Looking over Newton's Feb 2021 presentation to POTSUK on fatigue management, she notes that 30% of people with a diagnosis of POTS responding to a POTSUK survey also had a diagnosis of CFS. Given that a diagnosis of POTS might preclude someone subsequently getting a CFS diagnosis, it is likely that the overlap is even higher. Both conditions are fuzzy diagnostically, and I'm sure which label you get depends to a great extent on which physician you see. I think it's entirely possible that people with fatigue and other symptoms after a Covid-19 infection that would qualify them for a diagnosis of ME/CFS will end up at the Cresta Fatigue Clinic, possibly be given a diagnosis of POTS and certainly encouraged to set recovery goals and incrementally increase activity levels.

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.

CRG said: ↑

I couldn't see any evidence that Julia Newton has had any involvement in the Psych service at Newcastle - which operates at a different location to CRESTA. JL helped start up the CRESTA service in 2013 and was the clinical lead for several years but at some point she relinquished that role, and now just keeps her clinical hand in on limited basis. It's generally seen as desirable for academic clinicians to continue to see patients face to face even if only at a weekly clinic.
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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.

CRG · Nov 28, 2021

Hutan said: ↑

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.
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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.

Hutan said: ↑

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.
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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)
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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.

Jonathan Edwards · Nov 28, 2021

CRG said: ↑

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.
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It takes some time to get to a publication after starting involvement with a service - probably 2 years minimum, so I am not sure the time lag means much.

Two things may be relevant. Julia Newton had a close collaboration with the psychiatrist Stuart Watson looking at ME/CFS. Watson seemed to me intelligent but I suspect that there ere basic BPS assumptions involved somewhere.

Newton got an MRC grant to work on ME/CFS around 2014. At that time her hypothesis was that all fatigue had the same origin - probably relating to haemodynamics. It did not seem to me that she recognised fatigue in ME with PEM as something special. I think she said she quit ME research because it was so hard to get funding - presumably her MRC project as not renewed.

If I remember rightly she is primarily a geriatrician so the CRESTA service may relate to fatigue and rehab issues relevant to that service requirement.

So I think Neton has never run an ME service press herself but I think she as involved in the ME service under psychological medicine in terms of her research interests.

I doubt she would have had any input into the remarks made about my testimony.

Jonathan Edwards · Nov 28, 2021

Another point is that Newton's MRC project was on fatigue and maybe not on ME/CFS as such.
So the only group that has had substantial biomedical funding (several million from US NIH) for ME/CFS is probably London School of Hygiene.

dave30th · Nov 28, 2021

Hutan said: ↑

I have sent off an email to the Hospital Trust, pointing out the clinic's apparent non-compliance with the new NICE guideline and expressing concern about the comments provided on behalf of the organisation.
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Thanks for flagging these. seems like good material for a post...

JemPD · Nov 28, 2021

Interesting that Newton was featured heavily in this AfME vid in 2016, she was also on a tv news item circa 2015 talkling about the cardiac research, i remember because one of my family saw it & changed their attitude to me completely afterwards, suddenly becoming sympathetic where they hadnt been before. So i was very grateful to her for that, it was on youtube, i wish i could find it but i cant.

What is M E ? - YouTube

Trish · Nov 28, 2021

Perhaps the sensible thing to do would be to ask Julia Newton herself what her role is and was in the services for people with ME/CFS in Newcastle.

My assumption has been that she diagnosed people, and if she diagnosed ME/CFS they would have been offered the 'treatment' run by the ME/CFS therapists. Doctors don't do GET or CBT, they refer people to them. So it's perfectly possible that a doctor could be doing biomedical research on the patients they diagnose, but at the same time refer them to GET/CBT as the only option allowed under the 2007 NICE guideline. I thought I remembered Vincent Deary who is very BPS oriented was in charge of ME/CFS therapy in Newcastle.

Hutan · Nov 28, 2021

CRG said: ↑

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.
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I agree things are unclear, and yes, I think the separation of the CRESTA clinic and the ME/CFS service was not understood when recent comments on the Cochrane thread were made. It would be good to find out the facts. And yes, it would be great if someone who knows Julia Newton could ask her what her position is on the comments provided on behalf of the NUTHT and about her relationship with the Newcastle clinics.

CRG said:

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.
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The paper that CRG referred to upthread notes that Newton was involved with the CFS clinic:
https://www.rcpe.ac.uk/journal/issue/journal_40_4/newton.pdf

The Newcastle NHS Chronic Fatigue Syndrome Service: not all fatigue is the same, 2010
1JLNewton, 2H Mabillard, 3A Scott, 4A Hoad, 5GSpickett

1Professor of Ageing and Medicine, NIHR Biomedical Research Centre in Ageing and Institute for Ageing & Health, Newcastle University, and Consultant Physician, Northern Regional CFS/ME Clinical Service, Newcastle upon Tyne Hospitals NHS Trust; 2,3Medical students, NIHR Biomedical Research Centre in Ageing and Institute for Ageing & Health, Newcastle University; 4Foundation doctor; 5Consultant Immunologist and Northern Regional CFS Clinical Service Champion, Northern Regional CFS/ME Clinical Service, Newcastle upon Tyne Hospitals NHS Trust, UK

So, it appears that in 2010, she was the/a consultant physician for the NUTHT Northern Regional CFS/ME Clinical Service.

Julia Newton's presentation on fatigue to POTSUK this year is something that we can be sure accurately represents her views - and there she seems to be promoting an approach that amounts to GET. And, having earlier said that there is a big overlap between POTS and CFS, she does not say that this approach is not used with those patients presenting to the clinic with both with POTS and CFS.

Hutan said: ↑

Question at 43 minutes: 'Nice have removed the recommendation for graded exercise in CFS/ME..'?

Julia Newton: "Absolutely right. We don't use graded exercise therapy, that's a very protocol driven intervention. So, you are absolutely right, the NICE guidelines, in the draft, are no longer recommending GET. We have never used graded exercise therapy.

Our approach is very individualised, so it's not about that you follow a path that you are on, that everybody's on, everybody is individualised in terms of their management and its about finding things in your life that allow you to create a baseline and then we increment. So, it was a mistake using the word 'graded' because it has connotations.

We increment your activity and, you know 10% of 2 seconds of standing up is a very small amount, it's not a set amount. It's about, in your mind, thinking about, 'well, I'm going to try to do a little bit more today', and we say 'then try and do 10% more today than you did yesterday'.

So, yeah, I hope that's reassured people that we are not, and would not, use Graded Exercise Therapy."
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My earlier impression of Julia Newton had been that she was an ally in the fight against BPS thinking. It was reading this 2011 paper that had me first question that. Physical activity intensity but not sedentary activity is reduced in CFS and is associated with autonomic regulation, 2011, Newton et al

Furthermore, she was AfME's medical advisor until recently. While of course a single person can't do everything, I think someone in such a role has to take some of the responsibility for the very poor BPS-promoting materials that AfME has provided as information to people with ME/CFS.

I find it difficult to square Professor Newton's reputation as an ally of people with ME/CFS with these facts.

Hutan · Dec 1, 2021

I've received a reply to my Freedom of Information request, trying to find out who bears responsibility for the comments provided by Newcastle-upon-Tyne Hospital Trust on the NICE ME/CFS Guideline. It's not very informative, other than suggesting that the comments are not the result of a rogue individual, dashed off when feeling annoyed with patients. Instead, it seems that the process is better described as the result of review, workshopping and collective preparation by everyone involved in providing CFS/ME services in the Trust.

The FOI question:
The Newcastle-upon-Tyne Hospital Trust provided comments on the NICE ME/CFS 2020 draft guideline in December 2020 (from page 422 in Part 1 of the published comments on the NICE website).
Can you please provide the process that was followed to approve the submission of these comments and give as much detail as is possible about who was involved in the process including the drafting and approval of the comments.

The response:
The Trust did submit evidence to the consultation. The draft guidelines were reviewed by all members of the adult CFS/ME therapy team as well as medical consultant leads for adult and paediatric CFS/ME services. The response was then prepared collectively by team members, and workshopped by these individuals prior to submission to NICE.

Wonko · Nov 30, 2021

Interesting variation on throwing someone under the bus.

Instead they would prefer to stand together and hope that no one is so inclined as to use a fleet of buses.

Instead of responsible qualified professionals they'd rather be a gang.

Barry · Dec 1, 2021

Hutan said: ↑

I've received a reply to my Freedom of Information request, trying to find out who bears responsibility for the comments provided by Newcastle-upon-Tyne Hospital Trust's comments on the NICE ME/CFS Guideline. It's not very informative, other than suggesting that the comments are not the result of a rogue individual dashed off when feeling annoyed with patients. Instead, it seems that the process is better described as the result of review, workshopping and collective preparation by everyone involved in providing CFS/ME services in the Trust.
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Newcastle-upon-Tyne Hospital Trust said:

For example, it is flawed logic to suppose that a trial of CBT or other psychological therapy should somehow attempt to separate the effect of the therapy per se from the effect of the therapeutic relationship. In real clinical practice, it is impossible to have one without the other, and a trial must reflect this reality.
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I think the trials do reflect the reality: no real improvement; risk of harms. That is the point.

Newcastle-upon-Tyne Hospital Trust said:

Furthermore, even if a treatment is proposed based on a mechanistic understanding that subsequently proves to be flawed, this does not de facto invalidate the findings of the trial. It is entirely possible for a treatment to show benefit (or harm) that is mediated through a different mechanism that the one we expected.
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But if so badly flawed that outcomes are grossly misinterpreted (e.g. adverse treatment effects mistaken for patients' non-adherence to treatment), then the findings of a trial most certainly would be invalid.

Hutan · Nov 30, 2021

Wonko said: ↑

Interesting variation on throwing someone under the bus.

Instead they would prefer to stand together and hope that no one is so inclined as to use a fleet of buses.
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Jonathan Edwards · Dec 1, 2021

FOI request: Who got it so wrong?

Response: We all did.

(And anyway we were already doing what the new guideline that we are so cross about says.)

NelliePledge · Dec 1, 2021

Leadership hiding behind a team. Workshop can mean a lot of different things - from a genuine collaboration to a token consultation with predetermined outcomes - depending on the attitude of those who have control.

rvallee · Dec 1, 2021

Hutan said: ↑

I've received a reply to my Freedom of Information request, trying to find out who bears responsibility for the comments provided by Newcastle-upon-Tyne Hospital Trust on the NICE ME/CFS Guideline. It's not very informative, other than suggesting that the comments are not the result of a rogue individual, dashed off when feeling annoyed with patients. Instead, it seems that the process is better described as the result of review, workshopping and collective preparation by everyone involved in providing CFS/ME services in the Trust.

The FOI question:
The Newcastle-upon-Tyne Hospital Trust provided comments on the NICE ME/CFS 2020 draft guideline in December 2020 (from page 422 in Part 1 of the published comments on the NICE website).
Can you please provide the process that was followed to approve the submission of these comments and give as much detail as is possible about who was involved in the process including the drafting and approval of the comments.

The response:
The Trust did submit evidence to the consultation. The draft guidelines were reviewed by all members of the adult CFS/ME therapy team as well as medical consultant leads for adult and paediatric CFS/ME services. The response was then prepared collectively by team members, and workshopped by these individuals prior to submission to NICE.
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Everyone forgets the second half after "a few bad apples". It's usually used incorrectly to mean that it's OK because it was only a few, when the whole point of the saying is that it only takes a few to corrupt the whole thing.

The whole batch has been spoiled. Hell, the whole orchard is.

Sly Saint · Jul 4, 2022

Moved post
Newcastle upon Tyne Hospitals NHS
bit confusing because there is this page

Chronic Fatigue Syndrome/ME therapy psychology service
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The Chronic Fatigue Syndrome (CFS) /ME therapy service assesses and treats patients with Chronic fatigue syndrome/ME.

This page is under construction in light of the recent NICE guidelines, and will be ready soon.
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last updated 03/12/2021

https://www.newcastle-hospitals.nhs.../chronic-fatigue-syndrome-me-therapy-service/

which is in the psychology dept

then they have this

Chronic fatigue clinic
The CRESTA Fatigue clinic cares for people who experience symptoms of chronic fatigue alongside a physical health condition.
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Page last updated: 19/07/2021

also called the CRESTA fatigue clinic.

most of the treatment/advice is as per ME/CFS treatment before the new guidelines but called graded activity see video:
Code:
https://www.youtube.com/watch?v=wUOgii2IDpQ
https://www.newcastle-hospitals.nhs.uk/services/chronic-fatigue/

MEMarge · Jul 4, 2022

Moved post
Interesting result from another CFS clinic site at Newcastle:
https://www.newcastle-hospitals.nhs.uk/services/chronic-fatigue/

Home > Services > Psychology in healthcare > Adult health psychology > Chronic Fatigue Syndrome/ME therapy psychology service
Chronic Fatigue Syndrome/ME therapy psychology service
The Chronic Fatigue Syndrome (CFS) /ME therapy service assesses and treats patients with Chronic fatigue syndrome/ME.

This page is under construction in light of the recent NICE guidelines, and will be ready soon.

Please contact us on 0191 213 8823 with any queries.

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