Please sign the MEA's petition asking NICE to review the guidelines for ME (CLOSING MONDAY JULY 24)

Countrygirl

Countrygirl

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https://sapc.ac.uk/conference/2017/...treatments-mecfs-symptoms-analysis-of-patient

The Effect of CBT, GET and Pacing Treatments on ME/CFS Symptoms: Analysis of a Patient Survey compared against Secondary Surveys
Conference:
SAPC ASM 2017 - Warwick
Talk Code:
EP2C.08
Presenter:
Dr Keith Geraghty or Dr Stoyan Kurtev
Co-authors:
Stoyan Kurtev, Mark Hann
Author institutions:
University of Manchester, Coventry University, University of Manchester
Problem
Myalgic Encephalomyelitis (ME)/Chronic Fatigue Syndrome (CFS) severely impacts the quality of life of sufferers. Most ME/CFS patients will be managed in primary care. Cognitive behavioural therapy (CBT) and graded exercise therapy (GET) are the only evidence-based treatments recommended for ME/CFS. In contrast, patients anecdotally report that CBT and GET deliver little benefit, in comparison to pacing or pacing therapy (PT). Our study explores patients’ symptom and illness changes in response to these treatments. We analyse results from a large patient survey (n=1,428) and compare findings against other comparable surveys (n=16,665).
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Our results suggest that CBT and GET are of limited benefit in terms of helping ME/CFS patients improve symptoms. The majority of patients experience no benefit. In contrast, pacing brings about the greatest positive impact with the least negative reactions. GET brings about a substantive deterioration in symptoms for around half of patients and it is the least favoured treatment approach, compared with pacing, which is most favoured by patients. Adding GET in combination with other treatments worsens outcomes and contributes to increases in illness severity, whereas adding pacing in combination improves outcomes. These findings conflict with NICE guidelines and some randomised controlled trials that report CBT and GET to be superior treatments, but are consistent with findings from multiple patient surveys that span fifteen years and multiple countries. Therapists’ views have an impact on patient outcomes, with views of ME/CFS being a physical illness associated with better outcomes than views of ME/CFS being psychological illness. All three treatment approaches have little impact on disability status. Further research is needed to better understand the role of pacing in ME/CFS and potential adverse responses to CBT and GET.
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charles shepherd

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Countrygirl said:
https://sapc.ac.uk/conference/2017/...treatments-mecfs-symptoms-analysis-of-patient
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This presentation to a conference at the University of Warwick refers to the largest ever survey of patient evidence relating to acceptability, efficacy and safety of CBT, GET and Pacing

Executive summary here:

http://www.meassociation.org.uk/2015/05/23959/

The MEA has also been working with Keith on the preparation of academic papers covering the results of this report

We will be including these findings in our submission to NICE

CS
 
slysaint

slysaint

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charles shepherd said:
This presentation to a conference at the University of Warwick refers to the largest ever survey of patient evidence relating to acceptability, efficacy and safety of CBT, GET and Pacing

Executive summary here:

http://www.meassociation.org.uk/2015/05/23959/

The MEA has also been working with Keith on the preparation of academic papers covering the results of this report

We will be including these findings in our submission to NICE

CS
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In the surveillance review proposal it says:
"If the PACE trial evidence was downgraded or set aside in a new systematic review, other evidence from RCTs and systematic reviews shows benefit of CBT and GET in line with current recommendations".

3 things:
1) Would these have got off the ground let alone been published/passed peer review if it had not been for PACE?
2) What was the average/mean figure(%) of those who supposedly 'benefited' from CBT/GET from these other RCTs?
3) Did any of these other RCTs use any actual performance/biomedical measurements or were they all reliant on subjective questionnaires (eg CFQ designed for PACE).
 
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Valentijn

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slysaint said:
3) Did any of these other RCTs use any actual performance/biomedical measurements or were they all reliant on subjective questionnaires (eg CFQ designed for PACE).
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Some did. But they all used Oxford criteria, and the data suggested that few patients, if any, suffered from any physical disability. Eg, CPET scores were already normal or low-normal at the start.
 
TiredSam

TiredSam

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Countrygirl said:
https://www.nice.org.uk/guidance/cg53/documents/surveillance-review-proposal

For those who have the energy time, you might be interested to read the document produced by NICE above.
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Topic experts agreed with the conclusions of the surveillance team about the 3 US reports which were that no impact on the guideline was anticipated. They indicated that until and unless further research suggests otherwise, the NICE diagnostic criteria for CFS/ME remain valid.
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The IOM report and all those who contributed to it can quite safely be dismissed then.
 
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charles shepherd

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I have now informed Board members on the CMRC that the MEA has created a petition calling on NICE to basically overrule the recommendation of their expert group that has been reviewing all the evidence (which appears to be reviewing abstracts rather than actual papers) and to move forward with a proper and comprehensive review of the NICE guideline on ME/CFS

I have also informed the CMRC that the MEA petition has gathered more than 8800 signatures in less than four days - so I do not think this demonstation of patient dissatisfaction can be ignored by NICE

The CMRC has NOT been involved with the NICE guideline review, nor the guideline development process, and is NOT a stakeholder in the consultation process. Neither is the MRC.

However, there are members of the CMRC Board who have input into various stakeholder groups - so I feel it is important for them to be aware of the position being taken by the MEA

Interesting to note some of the names on the NICE stakeholder list:

British Medical Journal
Cochrane centre for depresion, anxiety and neurosis
Eli Lilly (drug company)
Ministry of Defence
Royal College of Psychiatrists

Full list of ME/CFS stakeholders in the ME/CFS guideline here:
https://www.nice.org.uk/guidance/cg53/documents/stakeholder-list-2

Dr Charles Shepherd
Hon Medical Adviser, MEA
 
Countrygirl

Countrygirl

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TiredSam said:
The IOM report and all those who contributed to it can quite safely be dismissed then.
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Well, @TiredSam ! ......they are .......foreign..............:wide-eyed:.......................as in................not English :vomit:..............you can't expect NICE to take notice of...............foreign.............research..............let alone ......foreign......opinion. :aghhh:
 
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