United Kingdom: Newcastle-upon-tyne Hospital Trust

Hutan

Hutan

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The NUT Hospital Trust operates a 'Chronic Fatigue Syndrome (CFS/ME) therapy psychology service' to assess and treat 'patients with CFS/ME'.

Their services are described as

"Our team provides individualised care for patients to:
  • Sustain or gradually extend their physical, emotional and mental capacity
  • Manage the physical and emotional impact of symptoms and loss of physical capacity.
We offer Cognitive Behavioural Therapy (CBT) and Graded Exercise Therapy (GET) to people with CFS/ME, mindfulness, relaxation and acceptance therapy

After an initial assessment, we will work with you and in some cases your carers too to develop a care plan. This includes:
  • Checking the patient’s symptoms and history
  • Planning for care and treatment, including managing setbacks or relapses
  • Education, training or employment support needs
  • Information and contact details of the healthcare professionals involved
  • Reviewing the plan regularly."
Books recommended include:
  • Fighting Fatigue – Sue Pemberton, Catherine Berry
  • Overcoming Perfectionism – Roz Shafran
  • Overcoming Worry – Mark Freeston and Kevin Meares
 
Here are some excerpts from the Trust's comments on NICE ME/CFS Guideline draft (from page 422 in Part 1 of the comments). I first posted these on the Cochrane Exercise review thread, but I think potential patients of the NUT CFS/ME service should be aware of the views about ME/CFS that have been expressed on behalf of the Trust. I hate the thought of a young person, or anyone really, being exposed to the disrespect and ignorance that these comments illustrate.

Here the Trust is talking about people with severe ME/CFS, where apparently their problems are their anger, their involvement in patient groups, their misguided belief that they can't get better and their voluntary reduction in activity levels:
Additionally, clinical experience has demonstrated the presence of anger in the patient group towards staff. Clinical experience has also demonstrated the difficulties in engaging people with severe CFS/ME in rehabilitation. Our experience has indicated this is largely to do with most severe patients reporting being members of patient groups and having a negative view of the specialist teams before they come. It would be interesting to find out if the 9 who reported moving from moderate illness status to severe over the course of the illness held the belief that there was nothing they could do about their condition and also used the envelope theory, thus reducing their activity levels at the perception of an increase in symptoms.
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Here's a little of the criticism of expert testimonies and particularly that of @Jonathan Edwards, revealing an ideology that non-pharmacological interventions are somehow special and not amenable to being studied in trials that reach normal scientific standards.
We are particularly concerned by the testimony of Prof Edwards. He was asked to address the subject of ‘The difficulties of conducting intervention trials for the treatment of ME/CFS’. In our opinion, he significantly over-reaches the scope of his brief. It would have been much more helpful to discuss the types of treatment modality that might be trialled in CFS/ME and what the gold standard trial design would be for those modalities.

We are not convinced that Prof Edwards has the necessary expertise and knowledge in clinical trials of non-pharmacological interventions to make this assessment. 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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Here there seems to be an ideology of clinicians knowing best what goals people with ME/CFS should have, and ignoring the substantial uncertainty there is about illness trajectory. The Trust seems to have the ideology that they can be objective about how much fatigue and disability can be reduced for a particular patient. Further, they seem to have the ideology that identifying psychological factors that are maintaining the condition will lead to recovery:
It is important we communicate to patients realistic goals depending on their own disability, not the disability of others. Individual plans help patients to achieve their realistic goals. It is important that we are as objective as possible with patients in terms of the amount of fatigue and disability that can be reduced.
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Patients need to understand the complexity of the illness and medical/psychological testing will help to understand the complexities of the condition. Identifying factors that are maintaining the condition is a way out of the disability
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Here the Trust seems to have the ideology that ME groups hold an unrealistically pessimistic view of the illness and that informed ME/CFS patients are very angry people. They seem to have the ideology that these people being 'very angry' about a particular issue means that they are both wrong and are just generally very angry people. That ideology is surely not conducive to understanding what the 'very angry' people are actually complaining about.
Most patients who use specialist services report that online information and ME groups have frightened them and many patients felt that online information from patient groups are ‘all doom and gloom’ and that Facebook Groups are all ‘very angry’ people. We would agree that NHS services would benefit from developing less biased information on the interventions for CFS/ME.
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Here the Trust makes clear that their treatment approaches are based on the evidence that NICE found was useless. Clearly, there is an enormous incentive for the Trust to overturn the findings of NICE. Such a conflict of interest makes for strongly held ideologies.
Within the North of Tyne CFS/ME specialist team we are have constructed training packages for GPs, Medical assessors, mental health professionals, patient information on sleep, emotions, CBT, pacing, communicating with others, graded activity. These are all based on the evidence which has been rejected by the NICE 2021 committee. Therefore, we are at a loss to know what education we would be able to pass on to others.

We would not support patients accessing information from ME organisations as we do not share the same model of CFS/ME.
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Here the Trust's comment suggests that people will be advised to push through their symptoms. It also, in its reference to 'the CBT model of CFS/ME' seems to suggest that 'catastrophic thoughts about harming oneself' if a person stays within their capacity levels is a feature of the illness. And again, it reveals a strongly held ideology that patient groups don't understand ME/CFS.
Within the CBT model of CFS/ME – once a baseline is set and the patient understands their current energy capacity and keeping within this capacity – therapy would discourage patients from monitoring their symptoms. A fluctuation in energy levels and symptoms is ‘normal’ in everyday life for us all. When a patient knows they are working within their capacity, the CBT model helps them to challenge catastrophic thoughts about harming themselves if they stay within their capacity levels which they may have developed over several weeks. CBT uses activity sheets to monitor activity levels to help the patient understand if there is any particular reasons for symptom increase. The criticism comes from patient groups, and is NOT representative of all people with CFS/ME.
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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.

I think this statement indicates just how much these people are rationalising to protect their unhelpful beliefs in their treatment.

I will be focusing on the absurdity of these arguments being raised in serious academic debate in my book. At some point the medical establishment will have to come to its senses and realise that there needs to be more to medicine than cosy political convenience.

The casting of coercion as 'working with patients' or 'people and partnerships are important' is particularly creepy. I never had to defend the way I did medicine with that sort of double-talk.

What is needed at this point is a little humility from people who have got things wrong.



Notice that if it is truly impossible to separate the effect of the therapy per se from the effect of the therapeutic relationship then nobody can know that the therapy is any better than just the therapeutic relationship. So as far as we know it is useless!
 
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Jonathan Edwards said:
The casting of coercion as 'working with patients' or 'people and partnerships are important' is particularly creepy. I never had to defend the way I did medicine with that sort of double-talk.

Notice that if it is truly impossible to separate the effect of the therapy per se from the effect of the therapeutic relationship then nobody can know that the therapy is any better than just the therapeutic relationship. So as far as we know it is useless!
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I am glad you said it! It's extremely creepy (to put it mildly!). These justifications for what they are doing read like a pseudoscientific and sub-(?)fraudulent framework for coercion and abuse, and I really hope it can be exposed. Unfortunately I think some people understand this, but it's hard to get them to care or to think it's a problem worth doing anything about. I don't know how to do this.

The combination of an endorsement (tacit or overt) of coercive practices in general - usually cloaked in political language (with all this talk of "shared decision-making") - with obfuscation about the effect on outcomes of the "therapeutic relationship" is particularly dangerous and noxious. It's a mechanism for the transfer of even more power to the "therapists" and practitioners in such "relationships", which I am sure they must recognize and seek to promote further. There must be safeguards to protect patients against this power imbalance.
 
We would not support patients accessing information from ME organisations as we do not share the same model of CFS/ME.
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You know what they say, when reality conflicts with your model, stick to your model, put fingers in your ears and go LAH-LAH-LAH-LAH! The model is everything and reality is just a pale reflection of it. The ends justify the means, all the means.

Oh, wait, no, it's the exact opposite. Although there's something amazing that they think that most severe ME patients participate in support groups. They have no idea what severe ME is, or even bother checking their assumptions. Meaning they have absolutely no concept of the worst patients.
 
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The thing about feedback from patients who report patient organisations are scaring them and therefore a bad thing may contain a grain of truth, superficially.

We need to remember that people attending ME clinics are likely to be both mild to moderately affected and fairly newly diagnosed. In that situation, as I was once, I didn't enjoy going to my local ME group and finding the chat was all about the others having had to give up work. I wasn't ready to hear that. I was still trying to cope with continuing to work part time. I didn't go back to the group because I didn't want to hear that was my likely fate too.
 
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There are two services relevant to ME/CFS run by the Newcastle-upon-Tyne Hospital Trust:
The Chronic Fatigue Syndrome (CFS) /ME therapy psychology service assesses and treats patients with Chronic fatigue syndrome/ME.
The CRESTA Fatigue clinic cares for people who experience symptoms of chronic fatigue alongside a physical health condition.

The physical health condition that the CRESTA fatigue clinic treats seems to be most often POTS, or some other form of orthostatic intolerance. It is looking a lot like a way to treat ME/CFS patients with GET, without potentially falling foul of the new NICE ME/CFS Guideline. Perhaps we will see a trend to people, including people with Long Covid, being diagnosed with POTS rather than ME/CFS.

Professor Julia Newton is (or at least recently was) associated with this clinic. She presented to POTSUK in a Feb 2021 webinar - thread here -as a member of a team of 4 in the Cresta Clinic where she indicated that there was a substantial overlap of POTS and CFS. There was a statement by Newton that the clinic dos not typically treat POTS with drugs.

It is quite difficult to find out what Julia Newton's current involvement in these clinics actually is. The Cresta Clinic webpage, updated in July 2021 does not mention her but does mention a consultant, Dr Adam Evans. The CFS/ME therapy psychology service webpage, updated in Oct 2020 does not mention any staff at all.


Julia Newton's NUTHT webpage (last updated Feb 2021) says:
Professor Julia Newton is a Consultant Physician specialising in fatigue and falls and syncope

Professor Julia Newton is a clinical academic who has a clinical and research interest in the symptoms of fatigue. She is also Medical Director of the Academic Health Science Network; North East & North Cumbria. She has a background in investigating and managing fatigue in chronic diseases, including liver disease, renal disease and chronic fatigue syndrome. Professor Newton is am (sic) a member of Newcastle’s Falls and Syncope Service team and predominantly see patients with autonomic dysfunction including POTS (Postural Tachycardia Syndrome) and vasovagal syncope.
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Under Department, it says 'Falls and Syncope Service, Older People's Medicine'.

The webpage says
Screen Shot 2021-11-27 at 6.20.43 AM.png
This seems out of date, as she is, as far as I know, no longer a medical advisor of AfME. She is however one of seven medical advisors of POTSUK.

From the POTSUK website:
Julia Newton is Clinical Professor of Ageing and Medicine and Dean for Clinical Medicine at Newcastle University, Faculty of Medical Sciences. Her research and clinical interests include regulation of the autonomic nervous system and its involvement in symptoms such as the fatigue that is seen frequently seen in patients with chronic disease. She sees a large number of patients with POTS at the Falls and Syncope Service, Newcastle Hospitals NHS Foundation Trust at the Royal Victoria Infirmary.
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We are not convinced that Prof Edwards has the necessary expertise and knowledge in clinical trials of non-pharmacological interventions to make this assessment. 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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Like ... ensuring objective outcomes are specified and retained, in order to sort the wheat from the chaff? It is, I think, the non-pharmacological trials investigators who fall way short.
 
Jonathan Edwards said:
Sounds as if they must be some of those who are doing the treatment wrong. I seem to remember that all Simon Wessely's patients loved him to bits.
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I've always wondered if they would throw specific colleagues under the bus with that line when pressed. The Dutch BPS mop has used the same line of unproper execution of the treatment. I always wondered what would happen if there was some sort of public discussion-platform and they were confronted with a bad experience like mine, if they'd throw that clinic under the bus, and if they would what that would do to the dynamic in their little niche-corner.
 
Trish said:
The thing about feedback from patients who report patient organisations are scaring them and therefore a bad thing may contain a grain of truth, superficially.

We need to remember that people attending ME clinics are likely to be both mild to moderately affected and fairly newly diagnosed. In that situation, as I was once, I didn't enjoy going to my local ME group and finding the chat was all about the others having had to give up work. I wasn't ready to hear that. I was still trying to cope with continuing to work part time. I didn't go back to the group because I didn't want to hear that was my likely fate too.
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Yes. Also if you have an established diagnosis and a significant degree of impairment, possibly getting progressively worse it can be terrifying to hear worst case outcomes are real and not actually terribly unlikely.

Another difficulty is people with resources and sufficient care options preaching absolute rest excellent nutrition and private medical treatment to people who have no option at all to follow this path. People who will struggle to survive until total physical collapse and still be denied help.
 
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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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Thank you for this @Hutan.

When I see such comments on severely affected patients being shared in writing publicly by a publicly funded body, the publicly funded healthcare body, I am in two places at once.

One. I feel sick.

Two. I feel relief.

Direct. Honest. Unabashed. Loud proud. Open. Straight forward contempt for their own patients and potential patients.

I am gratified to see that some are rather slow to recognise the utility of a good scrub, launder or relaunch.
 
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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Is there anyone else this could or should be reported to? What is the structure of responsibility/etc?

How do we stop people in general cleaning up their public materials whilst still carrying on with these attitudes and practices behind closed doors?
 
Barry said:
"Additionally, clinical experience has demonstrated the presence of anger in the patient group towards staff."

Why could that possibly be be I wonder ...
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And another one for the file of so-called lessons learned from the AIDS crisis. We may be vindicated with time, but we will have been just as hated, if not more because it has lasted far longer. And that anger was explicitly and disgustingly used against us, just like it was. Zero lessons learned, not even one. If anything, they learned to be even more indifferent and hostile.
 
Just been looking through other CFS/ME CFS, clinics (am yet to find one that is ME/CFS) and a lot seem to be avoiding actually saying what they do with regards to treatment by saying
"using evidence based treatment programmes following NICE guidelines"
eg:
https://www.sussexcommunity.nhs.uk/...e-me-service-cfsme-service-sussex-wide/108935

they haven't bothered to even change the name and their links for further info are to AYME that no longer exists, and the Sussex and Kent ME society.

then we have this sort of thing
"Our team includes professionals with a variety of skills and is able to provide a number of treatment approaches. These include pacing and graded activity, occupational therapy, psychological therapy, psychiatry and physiotherapy."

Chronic Fatigue Syndrome Service (CFS) Humber
https://www.humber.nhs.uk/Services/chronic-fatigue-syndrome-service-cfs.htm

can't see much change yet.



 
Hutan said:
There are two services relevant to ME/CFS run by the Newcastle-upon-Tyne Hospital Trust:
The Chronic Fatigue Syndrome (CFS) /ME therapy psychology service assesses and treats patients with Chronic fatigue syndrome/ME.
The CRESTA Fatigue clinic cares for people who experience symptoms of chronic fatigue alongside a physical health condition.

The physical health condition that the CRESTA fatigue clinic treats seems to be most often POTS, or some other form of orthostatic intolerance. It is looking a lot like a way to treat ME/CFS patients with GET, without potentially falling foul of the new NICE ME/CFS Guideline. Perhaps we will see a trend to people, including people with Long Covid, being diagnosed with POTS rather than ME/CFS.

Professor Julia Newton is (or at least recently was) associated with this clinic. She presented to POTSUK in a Feb 2021 webinar - thread here -as a member of a team of 4 in the Cresta Clinic where she indicated that there was a substantial overlap of POTS and CFS. There was a statement by Newton that the clinic dos not typically treat POTS with drugs.

It is quite difficult to find out what Julia Newton's current involvement in these clinics actually is. The Cresta Clinic webpage, updated in July 2021 does not mention her but does mention a consultant, Dr Adam Evans. The CFS/ME therapy psychology service webpage, updated in Oct 2020 does not mention any staff at all.
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From looking up the details for the replies I made on the Cochrane Review thread:

https://www.s4me.info/threads/indep...ed-by-hilda-bastian.13645/page-85#post-394030

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.

Julia Newton currently has three distinct professional roles -

1. teaching and research https://www.ncl.ac.uk/civi/staff/profile/julianewton.html#teaching

2. Medical Director at AHSN NENC https://ahsn-nenc.org.uk/who-we-are/impact-brochure-2018/

3.her clinical practice at CRESTA - which I think is a one day week commitment

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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