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(by Peter White) "Chronic fatigue syndrome service: St Bartholomew’s (Barts) Hospital, London"

Dolphin

Senior Member
Messages
17,567
(Originally posted on Co-Cure)
"In the Barts service, an outcome of improvement in 75 per cent of patients is expected, with a third of those (25 per cent) expected to recover if given sufficient treatment."

- yet Peter White and the other PACE Trial investigators are not planning to publish the recovery outcome measure (a secondary outcome measure) from the £5m PACE Trial, nor will they give it in response to a Freedom of Information Act request.
---

"The PACE trial showed outcomes of approximately 60 per cent of patients making a clinically useful improvement* in both symptoms and disability with either CBT or graded exercise therapy."

The definition was broad: 42% in the SMC (control-type group) also satisfied the post-hoc criteria for a clinically useful improvement.
The more strict primary outcome "overall improvers" has never been published and they do not intend to publish it or release it in response to a Freedom of Information request]


=====================

http://bit.ly/RieusW i.e.

http://www.nhsconfed.org/Publications/Documents/Investing in emotional and psychological wellbeing for patients with long-tern conditions 18 April final for website.pdf



"Chronic fatigue syndrome service: St Bartholomew's (Barts) Hospital, London

The chronic fatigue syndrome service at St Bartholomew's (Barts) Hospital, jointly provided by Barts & The London NHS Trust and East London NHS Foundation Trust, and managed by the latter, is unique in that it is clinically led by a consultant physician (infectious

diseases) and a consultant liaison psychiatrist (see http://bartscfs.eastlondon.nhs.uk). This allows it to properly assess patients, referred mainly by GPs, since three service audits from different NHS services have shown that around

40 per cent of such patients are found not to have chronic fatigue syndrome, with half of these having an alternative medical diagnosis (for example, sleep apnoea) and the other half having an alternative psychiatric diagnosis (for example, depressive illness). Assessment is therefore crucial to a good outcome.

Once a diagnosis of chronic fatigue syndrome is made, patients are referred to one of the multidisciplinary team for further assessment, with a view to rehabilitative therapy. The NICE
guidelines162 suggest that the two therapies with the best research evidence of effectiveness are individually delivered cognitive behaviour therapy (CBT) and graded exercise therapy.

The recently published PACE trial (see www.pacetrial.org) showed that these therapies were both moderately effective and safe, when added to specialist medical care, and when individually delivered by appropriately qualified therapists who had received appropriate training and supervision. Receipt of specialist medical care alone and specialist medical care supplemented by pacing therapy (staying within limits imposed by the illness) were less effective at helping both symptoms and disability. The aims of therapy are to provide amelioration of maintaining factors that are keeping a patient unwell. These are known to be illness beliefs, inactivity (or extremes of activity) as well as deconditioning, sleep and mood problems.

The Barts service provides patient choice, in that both individually delivered CBT and graded exercise therapy are available, as well as individually delivered occupational therapy (providing graded activity therapy and occupational support). A recent audit of group-delivered rehabilitation therapy (combining all the above) showed high levels of patient satisfaction, but limited effectiveness.

This is now being reviewed. Complementary to this, all patients receive specialist medical care, which consists of generic advice about managing the illness as well as prescribed medicines to treat associated symptoms (such as insomnia) and co-morbid illnesses (such as depressive illness). An information session has recently been introduced for all newly diagnosed patients to educate about the illness and treatment options. The session is available to patients, their families and carers.

The PACE trial showed outcomes of approximately 60 per cent of patients making a clinically useful improvement* in both symptoms and disability with either CBT or graded exercise therapy. In clinical practice, slightly less impressive results would be expected, as demonstrated by the National Outcome Database of 26 NHS services (see www.bacme.info/document_uploads/ NOD/NODpres.pdf). These services are equally effective at reducing symptoms, but less effective at improving disability. In the Barts service, an outcome of improvement in 75 per cent of patients is expected, with a third of those (25 per cent) expected to recover if given sufficient treatment. A normal course of treatment is composed of 30 sessions, including medical care. In the PACE trial, participants received up to 15 sessions of therapy and about four medical consultations in a year.


For further details, contact:

Professor Peter White, Professor of Psychological Medicine, Wolfson Institute of Preventive Medicine, Barts and The London School of Medicine and Dentistry p.d.white@qmul.ac.uk"


====================
Taken from:

http://www.nhsconfed.org/Publicatio...ndPsychologicalWellbeingLongTermPatients.aspx

Investing in emotional and psychological wellbeing for patients with long-term conditions.

Date: 18/04/2012 (i.e. April 18th, 2012)

Stock Code: BOK60053

Format: Electronic

A guide to service design and productivity improvement for commissioners, clinicians and managers in primary care, secondary care and mental health.

For many patients, several physical illnesses will coexist at any one time, and for some a mental health disorder will also be present. In the face of such multi-morbidity and need, focus on the patient journey across the lifespan and across the care system will maximise effective service design and delivery.

The collation of evidence and emerging economic analysis, together with examples of service design and delivery in this guide, will assist commissioners, clinicians and managers in primary care, secondary care and mental health in designing services, improving productivity and learning across disease-specific groups.
 

user9876

Senior Member
Messages
4,556
So there claim is pace gave 60% improvement and they say they expect slightly less impressive results in a clinical setting. Yet they expect 75% of patients to improve with 25% recovery.

They can't even be consistant in there own summarys
 

Enid

Senior Member
Messages
3,309
Location
UK
What's a clinically useful improvement from these wonkos - like unaided I eventually made the bathroom, recognised neighbours unaided except turning to the understanding and recognised supplements from those who know all the underlying pathologies to address. Pathetic these psychos. I had to educate my own GPs, Neurologists - hey any idea why I've passed out etc - they hadn't a clue either.
 

GracieJ

Senior Member
Messages
772
Location
Utah
Just went to the PACE Trial home site. There is tacit agreement that ME/CFS is a physical disorder within their very definitions of each "therapy."

Wall. Head. Bang. Repeat.

o_O:confused::eek::rofl::thumbdown::ninja::ill: Take your pick!!! (Wonder if straitjackets come in lavender... lol)
 

Enid

Senior Member
Messages
3,309
Location
UK
Psychos becoming "physical" - all the emotions from me GracieJ.This man who understands nothing, is not equipt with science/medical research findings should ever speak belongs in some fairyland (to be kind).4 specialist real Docs in my own family agree.

Yep the morning breeze as we battle on against this ignorance specific to the UK. Thanks Gracie. There are people who come on this site for help and support not c....p from psychos pretending science.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
Thanks for highlighting this, Dolphin.

I'm not sure what the "NHS confederation" is. Does anyone know how much influence it has?

I've made some observations of the leaflet, posted below, mainly to organise my thoughts.

Most of you will not find anything you don't already know, in my comments, below.


Mental Health Network
NHS conferderation

'Investing in emotional and psychological wellbeing for patients with long-term conditions'

http://www.nhsconfed.org/Publications/Documents/Investing in emotional and psychological wellbeing for patients with long-tern conditions 18 April final for website.pdf

Medically unexplained symptoms

Case Study
Chronic fatigue syndrome service:
St Bartholomew’s (Barts) Hospital, London
(Page 53)​

The following section of text is actually quite interesting, and encouraging:
The chronic fatigue syndrome service at St
Bartholomew’s (Barts) Hospital, jointly provided
by Barts & The London NHS Trust and East
London NHS Foundation Trust, and managed
by the latter, is unique in that it is clinically
led by a consultant physician (infectious
diseases) and a consultant liaison psychiatrist
(see http://bartscfs.eastlondon.nhs.uk). This
allows it to properly assess patients, referred
mainly by GPs, since three service audits from
different NHS services have shown that around
40 per cent of such patients are found not to
have chronic fatigue syndrome, with half of
these having an alternative medical diagnosis
(for example, sleep apnoea) and the other half
having an alternative psychiatric diagnosis
(for example, depressive illness). Assessment
is therefore crucial to a good outcome.

This is very worrying:
The aims of therapy are to provide amelioration of
maintaining factors that are keeping a patient
unwell. These are known to be illness beliefs,
inactivity (or extremes of activity) as well as
deconditioning, sleep and mood problems.

Based on the above quote, the following is very worrying:
An information session has
recently been introduced for all newly diagnosed
patients to educate about the illness and
treatment options. The session is available
to patients, their families and carers.

I don't like this bit about pacing, because 'pacing' was not tested in the PACE Trial:
Receipt of specialist
medical care alone and specialist medical care
supplemented by pacing therapy (staying within
limits imposed by the illness) were less effective
at helping both symptoms and disability

This is misleading:
The PACE trial showed outcomes of
approximately 60 per cent of patients making
a clinically useful improvement in both
symptoms and disability with either CBT or
graded exercise therapy.

(It should say "The PACE Trial showed outcomes of an extra 14% or 16% of patients making a clinically useful improvement in both symptoms and disability, with either CBT or GET")

At least they acknowledge the following, in relation to the PACE results:
In clinical practice,
slightly less impressive results would be
expected, as demonstrated by the National
Outcome Database of 26 NHS services
(see www.bacme.info/document_uploads/
NOD/NODpres.pdf). These services are equally
effective at reducing symptoms, but less
effective at improving disability.

But a figure of less than 16% for improvement rates is really not "impressive".

And seeing as CBT and GET had such pitiful results for objectively-measured disability outcomes in the PACE Trial, then if clinical practice has worse (or "less impressive") outcomes than the PACE Trial, for disability, then things are not looking good for clinical practice.

These are interesting stats, even if unhelpful:
In the Barts
service, an outcome of improvement in 75
per cent of patients is expected, with a third
of those (25 per cent) expected to recover if
given sufficient treatment

It's an acknowledgement that a majority of CFS patients do not 'recover' (based on their own definition of 'recovery'), even if the patients' alleged ('maladaptive') "illness beliefs" etc. are addressed and 'treated'.

Of the 25% who allegedly 'recover', we do not know how many would have 'recovered' without treatment with CBT or GET.
 
Messages
1,446
.
The Barts designed and linked Sussex CFS NHS Services. Please note the only symptom listed is 'fatigue' with emphasis on "Illness beliefs". These services were negotiated and accepted by the local Sussex CFS Society (known locally as the 'Sussex Fatigue and Depression Society'....... which alienates and sidelines people with CCC ME.

.
I cannot extrapolate much on this issue at the mo as I have a broken right arm and am very slowly typing with one finger. But I provided a dossier of evidence re what is wrong with the 'cfs/me' Services in Sussex to the APPG NHS Services Inquiry of 2009.

.


.

http://meagenda.wordpress.com/2009/06/13/rime-sussex-services-june-2009/

Sussex Services

Sussex wide CFS/ME MDT service http://rwstgp.org.uk/site/cfs.html


Referral criteria
Patients accepted as referrals into the Sussex CFS/ME MDT need to fulfil the following criteria;

Aged 16 or above, but no upper age limit
  • Under 16s should be referred to Acute or Community Paediatrics or CAMHS
  • A primary complaint of unexplained fatigue which is disabling and affects physical and mental functioning.
  • No clear alternative medical or psychiatric diagnosis has been made
  • The duration is at least 4 months
  • There are copies or reports of normal or negative investigations, as described below (see notes on medical screening), performed in the previous three months
  • The patient is willing to have a biopsychosocial and management assessment
  • The GP or referring doctor is responsible for providing reports for benefits/employment/insurance purposes as appropriate, which will not be provided by LMDT staff.
Notes on Medical Screening
Assessment
All patients will be assessed by a doctor experienced or trained in the diagnosis and management of CFS/ME. The assessment process is intended to determine whether the diagnosis of CFS/ME is appropriate and what further management is indicated
N.B. The medical assessment here is designed to be done by the LMDT doctor, but it may be possible in the future to give this responsibility to the GP or other referring doctor, with appropriate protocols and training.


Medical assessment will include :
History
Particular emphasis should be placed on:
History of present complaint
Any atypical features suggesting alternative diagnoses
Current activity level/pattern
Mood disorders (including both depressive and anxiety disorders)
Illness beliefs
Sleep pattern
Common medical and psychiatric exclusions


Examination
All patients will undergo a physical examination. The extent of this examination is at the discretion of the examining doctor, and will be influenced by the history.
All patients will undergo a mental state examination.


Investigations
Prior to Referral – all patients will have the following investigations performed: Full blood count, ESR or C-reactive protein, urea and electrolytes, liver function tests, calcium, albumin, creatine kinase, thyroid function (TSH and free T4), coeliac screen, random blood glucose, urinalysis for blood, sugar and protein.
(NB these tests are to be completed by the referrer, before a referral is accepted. Depending on the length of history and age of the patient, these tests should normally be done within three months of referral.)
The history may suggest the need for other tests (e.g. ANA, Lyme serology) but in the absence of a suggestive history no further tests are mandatory.




————————


Link to Barts

The CNCC for the Sussex Wide CFS/ME Service is Barts, London. The minutes of a West Sussex PCT Meeting 24/5/07 say:

… The Sussex MTD will be linked to Barts’ who will provide consultation and training support in its role as CNCC. The support provided by the CNCC will be mainly in terms of education and advice to the Local Multi Cisciplinary Team, in order to enable patients to receive their care locally. The Barts’ CNCC will also offer one-off consultation on more complex cases where this is appropriate…


.##########################################################




the full Rime report on the SUSSEX SERVICES and some comments from local patients/carers is on this link
http://meagenda.wordpress.com/2009/06/13/rime-sussex-services-june-2009/

.
 

Bob

Senior Member
Messages
16,455
Location
England (south coast)
In the reference to 'clinical' outcomes not being as successful as 'trial' outcomes, the NHS confederation leaflet includes a citation for a National Outcomes Database presentation (2010):

In clinical practice,
slightly less impressive results would be
expected, as demonstrated by the National
Outcome Database of 26 NHS services
(see www.bacme.info/document_uploads/NOD/NODpres.pdf).
These services are equally
effective at reducing symptoms, but less
effective at improving disability.

The link is for a 2010 presentation.

A more recent 2011 presentation can be found here:
http://www.bacme.info/document_uploads/NOD/NODpresentation2_b135d.pdf

This 2011 doc, includes 'changes' for SF-36 physical function scores. (see the last slide.)
I can't quite interpret it, but it could potentially provide some interesting info.

If my initial guessing interpretation is correct, then maybe the various clinical centres have seen average changes of between zero and 7.5 points for SF-36 physical function scores. But is this for CBT/GET only, or for overall treatment at the clinical centres? (PACE saw average SF-36 Physical Function score changes of 7.1 and 9.4 for CBT and GET)

More National Outcomes Database info, including all of the above links, can be found here:
http://www.bacme.info/nod/
 

biophile

Places I'd rather be.
Messages
8,977
Bob said:
This is very worrying: ...

Based on the above quote, the following is very worrying: ...

This is misleading: ...

The South London and Maudsley NHS Chronic Fatigue Service are aware of trouble makers such as yourself Bob!
Challenging problematic beliefs which interfere with progress, which may relate to the rehabilitation programme, ...

https://www.national.slam.nhs.uk/wp-content/uploads/2011/05/Chronic-Fatigue-Service.pdf

Questions and concerns about the credibility of rehabilitation? Why, that's a lashing of CBT!

I am going to open up my own CBT clinic for CFS researchers. Goals of therapy include challenging problematic beliefs or fears which interfere with the use of objective measures or openly admitting to the implications of the limited objective data already collected, with actively warning patients that CBT/GET probably does not help employment/welfare status, and with the release of data which was originally promised when they accepted millions of pounds from the tax payer.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
So there claim is pace gave 60% improvement and they say they expect slightly less impressive results in a clinical setting. Yet they expect 75% of patients to improve with 25% recovery.

They can't even be consistant in there own summarys

They are doing 30 treatment sessions where as the PACE trial only had 15 hence they can use that to "explain" their better results. In other words.. suggest we all need just more CBT and GET for better outcomes.

A normal course of treatment is composed of 30 sessions, including medical care. In the PACE trial, participants received up to 15 sessions of therapy and about four medical consultations in a year.
 

taniaaust1

Senior Member
Messages
13,054
Location
Sth Australia
What's a clinically useful improvement from these wonkos - like unaided I eventually made the bathroom.

Yeah probably.. I guess if a patient finally manages to shower but due to the post excertional symptoms afterwards then cant go and get themselves a drink like they usually manage and are then too sick to also eat... it would then be counted as an improvement as hey they showered.
 

Snow Leopard

Hibernating
Messages
5,902
Location
South Australia
So there claim is pace gave 60% improvement and they say they expect slightly less impressive results in a clinical setting. Yet they expect 75% of patients to improve with 25% recovery.

They can't even be consistant in there own summarys

It is weird. There was a paper by Wessely/Chalder which showed that RCT results are clearly superior to that of clinical settings and there is no evidence that the gap can/has been bridged.
http://www.kcl.ac.uk/innovation/groups/projects/cfs/publications/assets/2007/Quarmbyrandomised.pdf
 

Sean

Senior Member
Messages
7,378
They are doing 30 treatment sessions where as the PACE trial only had 15 hence they can use that to "explain" their better results. In other words.. suggest we all need just more CBT and GET for better outcomes.
Yet the vast bulk of any treatment 'benefit' from PACE came in the first 3 months or so, then tapered right off, with minimal further gains over the remaining 9 months during which patients were still undergoing treatment.

Hardly supportive of the claim that simply more of the same treatment will deliver a proportionally better result.

These guys are just rewriting the rules as they go along.

"It is weird."

I can think of less polite, but more accurate ways of saying it. :whistle:
 

Sean

Senior Member
Messages
7,378
Yet the vast bulk of any treatment 'benefit' from PACE came in the first 3 months or so, then tapered right off, with minimal further gains over the remaining 9 months during which patients were still undergoing treatment.

To put it another way, the therapeutic response is basically asymptotic.

Not to mention minimal, and off a very low baseline.
 

biophile

Places I'd rather be.
Messages
8,977
The PACE trial showed outcomes of approximately 60 per cent of patients making a clinically useful improvement in both symptoms and disability with either CBT or graded exercise therapy. In clinical practice, slightly less impressive results would be expected, as demonstrated by the National Outcome Database of 26 NHS services (see http://www.bacme.info/document_uploads/NOD/NODpres.pdf). These services are equally effective at reducing symptoms, but less effective at improving disability. In the Barts service, an outcome of improvement in 75 per cent of patients is expected, with a third of those (25 per cent) expected to recover if given sufficient treatment. A normal course of treatment is composed of 30 sessions, including medical care. In the PACE trial, participants received up to 15 sessions of therapy and about four medical consultations in a year.

No control rates mentioned for any of these figures, giving the misleading impression that CBT or GET is wholly responsible. In the case of the 60% response rate given for the PACE Trial, the control rate was 45%.

The NOD source in the quote does not confirm that "these services are equally effective at reducing symptoms, but less effective at improving disability". We are not given control rates (natural course) for the fatigue scores, and disability is not even mentioned at all? Is this the later paper on the NOD data? http://qjmed.oxfordjournals.org/content/early/2013/03/28/qjmed.hct061.full . A follow-up rate of 51% does not sound impressive or reliable.

[ Edit: here is the corrected published version http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3665909/ ]

Results: Baseline data obtained at clinical assessment were available for 1643 patients, of whom 834 (51%) had complete follow-up data. There were improvements in fatigue [mean difference from assessment to outcome: −6.8; 95% confidence interval (CI) −7.4 to −6.2; P < 0.001]; physical function (4.4; 95% CI 3.0–5.8; P < 0.001), anxiety (−0.6; 95% CI −0.9 to −0.3; P < 0.001), depression (−1.6; 95% CI −1.9 to −1.4; P < 0.001) and pain (−5.3; 95% CI −7.0 to −3.6; P < 0.001). Worse fatigue, physical function and pain at clinical assessment predicted a worse outcome for fatigue at follow-up. Older age, increased pain and physical function at assessment were associated with poorer physical function at follow-up.

Baseline measures of fatigue and physical function in our study were very similar to the PACE trial. The mean change in fatigue in our study was 6.8 points (95% CI −7.4 to −6.2), which is consistent with results from the recently reported PACE trial, where the mean change in fatigue was 7.4 points in the CBT group.[25] This is in contrast with one previous study, which showed that improvement in fatigue was greater in trial participants.[14] However, in our study, the mean improvement on the SF-36 physical function subscale was much less [4.4 points (95% CI 3.0 to 5.8)] than in the PACE trial where the mean improvement was 19.2 points in the CBT arm and 21.0 in the GET arm. This remarkable discrepancy suggests that the poor outcome in physical function in our study may be due to differences in the delivery or content of treatments given in routine clinical practice. For example, most patients in NHS services appear to be offered five or six sessions (Table A1), whereas PACE trial participants attended 12–14 sessions. This needs urgent investigation.
 

Dolphin

Senior Member
Messages
17,567
The NOD source in the quote does not confirm that "these services are equally effective at reducing symptoms, but less effective at improving disability". We are not given control rates (natural course) for the fatigue scores, and disability is not even mentioned at all? Is this the later paper on the NOD data? http://qjmed.oxfordjournals.org/content/early/2013/03/28/qjmed.hct061.full .A follow-up rate of 51% does not sound impressive or reliable.
Yes, NOD is even in the title:

"Treatment outcome in adults with chronic fatigue syndrome: a prospective study in England based on the CFS/ME National Outcomes Database"
They sometimes use the SF-36 physical functioning subscale, which is reported on, to describe disability.
 

biophile

Places I'd rather be.
Messages
8,977
Limited data available suggests "activity management" is more effective than CBT/GET:

Services reported that they treated patients with CBT, GET, a combination of both or activity management (Table A1). Comparing the three services that said they offered CBT/GET with the three services that only offered activity management, suggested that patients attending services offering CBT and GET had less improvement in fatigue at 12 months (fully adjusted coefficient 0.57; 95% CI 0.24 to 0.90; P = 0.001, corresponding to a difference of ∼2 points on the Chalder Fatigue Scale). However, this effect mainly represented a comparison between two large services which assessed 372 (CBT/GET) and 501 (only activity management) patients, respectively, in 2010.

Although our analyses suggested that patients who received activity management did better than those who received CBT and/or GET, this was based on a comparison between three services offering activity management only and three services offering CBT/GET only. As one service in each group was much larger than the others, our result is based on a comparison between two services. As treatment content and adherence were not assessed, it is not known whether CBT or GET conformed to existing protocols or whether activity management provided content consistent with CBT or GET principles. There are many other service-level factors that could affect outcome between two services, such as the number of sessions offered by the service, a known predictor of outcome,[16] the overall philosophy of the service, individual therapist effects and patient characteristics.[24]

Extract from the (full) 2007 NICE guidelines for CFS/ME:

Activity management

1.6.2.22 Activity management is a goal-oriented and person-centred approach tailored to the needs of the person with CFS/ME. It should include:
• Understanding that activities have physical, emotional and cognitive components, and identifying these components.
• Keeping a diary that records cognitive and physical activity, daytime rest and sleep. This will help to set baseline levels of activity (a stable and sustainable range of functioning), identify patterns of over- and underactivity, and develop an activity/exercise strategy.
• Establishing a baseline; specific activities may need to be increased or decreased while this is happening.
• Gradually increasing activity above the baseline in agreement with the person.
• Planning daily activities to allow for a balance and variety of different types of activity, rest and sleep. This may include making a weekly activity schedule.
• Spreading out difficult or demanding tasks over the day or week.
• Splitting activities into small achievable tasks according to the person’s level of ability/functioning, followed by gradual increases in the complexity of the tasks.
• Monitoring, regulating and planning activities to avoid a ‘boom and bust’ cycle.
• Goal setting, planning and prioritising activities.
• Explaining the role of rest in CFS/ME and helping the person work out how to build in rest periods and achieve a productive day (see recommendations 1.4.2.1–6).
• Regularly reviewing activity levels and goals.
• Offering information on the management of setbacks/relapses (see section 1.7).
 

Dolphin

Senior Member
Messages
17,567
Limited data available suggests "activity management" is more effective than CBT/GET:



Extract from the (full) 2007 NICE guidelines for CFS/ME:

"Activity Management" in the NICE guidelines had elements of GET/GAT. It was a "light" or "lite" version of GET/GAT for those who were severely affected, a group for which there wasn't much evidence and so they couldn't recommend GET/GAT directly.

However, I think if NHS services/clinics say they are using activity management, what they are likely saying is they're not big GET/GAT fans, and concentrate more on pacing.