Keele University seeks CFS patients for new study – lead researcher Carolyn Chew-Graham

[lilpink]

Keele University seeks CFS patients for new study – lead researcher Carolyn Chew-Graham


A word of advice/warning:




https://www.keele.ac.uk/pchs/newsan...thchronicfatiguesyndromeneededfornewstudy.php




If anyone is thinking of responding to the above request for CFS patients to participate in this new study it’s worth bearing in mind the following about the lead researcher Professor Carolyn Chew-Graham:

• She co-chaired the JCPMH (Joint Commissioning Panel for Mental Health) flawed and discriminatory ‘Guidelines for Commissioners of services for people with medically unexplained symptoms’ - https://www.jcpmh.info/wp-content/uploads/jcpmh-mus-guide.pdf - which in Table 1 entitled “ Functional somatic syndromes by specialty” on page 6 lists CFS and ME as functional syndromes.
• The JCPMH Guidance seems to present a one-sided/stigmatizing view of ‘MUS’ patients (therefore including CFS/ME patients) on page 9, where the authors appear to ‘cherry-pick’ views and opinions from several qualitative studies, including a study by Professor Chew-Graham herself.
• The JCPMH Guidance identifies women as the prevalent group (page 6), thus particularly stigmatizing women in my opinion.
• Professor Chew-Graham has repeatedly selected or ‘cherry-picked’ one particularly stigmatizing/offensive comment expressed by a single GP in one of her studies to describe the impact that MUS patients have on their doctors, presenting them as a source of stress and frustration for clinicians. She has done this:
  • on a Keele University blog page - http://primarycarekeele.blogspot.co.uk/2017/02/mus-guidelines.html,
  • in this presentationCommissioning guidance for Medically Unexplained Symptoms (MUS)(see page 10 of 20) to leading practitioners at this conference - https://tavistockandportman.nhs.uk/...t-improving-support-somatic-symptom-disorder/ see also http://www.healthcareconferencesuk.co.uk/news/medically-unexplained-symptoms
  • In this 2017 published paper - https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5325626/
  • In this Helen Lester Memorial Lecture -
    at 25.50 mins where Professor Chew-Graham refers to this ‘stomach churn’ quote as “really powerful data”.

Perhaps Professor Chew-Graham, as a working GP, had a bad experience herself with a ‘MUS’ patient, or possibly with more than one. But if so, she shouldn't let her personal opinions bias her academic work. Wouldn’t there be an outcry if any other patient group or other identifiable group was referred to in this way? Just imagine if comments like this 'stomach churn' quote were used to describe the effect of cancer patients or schizophrenia patients on their doctors.

• Professor Chew-Graham and others met with Simon Wessely to discuss the development of the JCPMH Guidelines - Royal College of Psychiatrists Royal College of General Practitioners .
• As co-chair of the JCPMH MUS Guidance document Professor Chew-Graham should have been clear about the finding of the Bermingham et al paper that ‘MUS’ costs the NHS around 10% of that part of the NHS budget that is spent on working age people, but instead she ambiguously presented and/or misrepresented the cost of MUS to the NHS in:

• • her blog - http://primarycarekeele.blogspot.co.uk/2017/02/mus-guidelines.html
  • this presentation - Commissioning guidance for Medically Unexplained Symptoms (MUS) - where she indicates that MUS represents 11% of the NHS budget.
  • this 2017 published paper - http://bjgp.org/content/67/656/106 again - "11% of total NHS spend”

A professor in her position should be well aware that the NHS budget is well over £100 billion, so IF ‘MUS’ costs the NHS £3 billion then that would be less than 3% of the NHS budget, not 10% or 11%. It is incorrect to indicate that MUS represents 10% or 11% of the total spend of the NHS, when, from the Bermingham et al paper figure, it would actually represent less than 3%. Is simple maths beyond her?

• Professor Chew-Graham was involved with the FINE trial – see David Tuller’s blog on this - http://www.virology.ws/2015/11/09/t...-sister-trial-been-disappeared-and-forgotten/

 

[lilpink]

I should add:


Carolyn Chew-Graham played a role in the development of the 2009 NICE Guidelines for Depression as a ‘Guideline Development Group member’ - Depression in Adults (update) - NICE . This guideline referenced various ‘qualitative’ studies which is what Professor Graham apparently specialises in -

– 22 mins . With the forthcoming UK NICE Guidelines review for ME/CFS it would be interesting to know if she has a similar role in that, and if she intends to contribute her own ‘qualitative’ evidence to the review.


My own personal advice to any ME/CFS sufferers who are thinking of taking part in this study would be –

‘I WOULDN’T TOUCH THIS STUDY WITH A BARGEPOLE’.

 

[adambeyoncelowe]

I should add:


Carolyn Chew-Graham played a role in the development of the 2009 NICE Guidelines for Depression as a ‘Guideline Development Group member’ - Depression in Adults (update) - NICE . This guideline referenced various ‘qualitative’ studies which is what Professor Graham apparently specialises in -

– 22 mins . With the forthcoming UK NICE Guidelines review for ME/CFS it would be interesting to know if she has a similar role in that, and if she intends to contribute her own ‘qualitative’ evidence to the review.


My own personal advice to any ME/CFS sufferers who are thinking of taking part in this study would be –

‘I WOULDN’T TOUCH THIS STUDY WITH A BARGEPOLE’.

But would it be worth skeptics going and telling her that what's stigmatising is her approach and that what we want is an end to MUS and FND?

 

[lilpink]

But would it be worth skeptics going and telling her that what's stigmatising is her approach and that what we want is an end to MUS and FND?

Going on past performance, I suspect that any contributions that people make to raise concerns and grievances about the way in which CFS patients have been treated are likely to be conveniently missed out of future papers or presentations, while perhaps one cherry-picked quotation from a patient who has fallen for their BPS banter and seemingly empathetic words is publicized to the hilt to doctors and commissioners etc. If you like, my suspicion is that Professor Chew-Graham could be fishing here for that one quotation, that one piece of ‘evidence’ that she can brandish about, that shows or implies that patients are perfectly happy with their approach or with the results of their literature review.


(I do wonder if they'll be recording the meeting to have a record of patients' views, otherwise how will they be able to use the patients' feedback on the literature review, other than to perhaps claim that x number of patients who were in attendance endorsed the findings or that they've ticked the 'patient involvement' box?)


If, however, anyone wishes to attend the meeting on the 21st June to put all the issues that I raised in the first 2 posts of this thread to all those in attendance, not least the ‘stomach churn’ quotation that she has repeatedly used and whether Professor Chew-Graham's material will end up in the NICE Guidelines review, then be my guest, but please make sure that you do raise them come hell or high water. If anyone does go, then I think it would be worth them doing some background reading and viewing beforehand from the material and links I supplied in #1 and #2 . (For extra viewing there is also a video entitled "Distress in Primary Care: Learning from patients and colleagues", Professor Chew-Graham's inaugural lecture, that is available on YouTube and is quite similar to the other one). I imagine that the event will be very well stage-managed though and opportunities for raising these issues may be quite limited. And be prepared to be thrown out or asked to leave like David Tuller was in Exeter. A group effort or pincer movement may be more effective.

 

[lilpink]

Professor Chew-Graham and Professor Chris Burton are fellow Section Editors of the ‘Knowledge, attitudes, behaviors, education, and communication’ section of the BMC Family Practice journal - https://bmcfampract.biomedcentral.com/about/editorial-board/editor-profiles. Given that Professor Chris Burton now appears to disagree with the use of the term 'MUS' and with the idea that 'medically unexplained symptoms' are the direct result of somatization https://www.mddus.com/resources/pub...17/diagnosis-unforthcoming?platform=hootsuite , which he describes as an 'older view', I wonder….. does Professor Chew-Graham agree with him on this?


If so, then how does she respond to the fact that the NHS in England is coding all 'MUS' patients on the IAPT programme with ICD-10 F45.0 'somatization disorder'? http://link.ict.hscic.gov.uk/m/3c611b7e9eb34d508a403979c7fa1450/BE3C5593/2DE2C3B1/022018n


Why doesn’t Professor Chris Burton challenge the NHS and the Government on this? And why doesn’t Professor Chew-Graham, IF she agrees with him?

 

[lilpink]

Professor Chew-Graham and Professor Chris Burton are fellow Section Editors of the ‘Knowledge, attitudes, behaviors, education, and communication’ section of the BMC Family Practice journal

So what have the BMC editors chosen to include in this BMC journal?


Well very recently, this month in fact, this Norwegian study was published:

https://www.ncbi.nlm.nih.gov/pubmed/29720093

“How general practitioners understand and handle medically unexplained symptoms: a focus group study.”


The following is a commentary on the above paper that was sent to me by an anonymous contact:


This paper is worth reading just for how hard the authors seem to be trying to sell the BPS model to doctors. It presents what I see as 2 diagnostic approaches - one where the doctor relies on the patient’s own account of their biomedical symptoms but apparently struggles to believe it or trust in it and regards it as subjective (the biomedical approach), or one where the doctor thinks that by getting to know the patient they have a better understanding of what is going on and can then rely on their own subjective assessment rather than the patient’s first-hand account (the BPS approach). With the second approach I would say that there is a reliance on secondary rather than primary evidence, but arrogance allows doctors to think that their armchair psychiatry/psychology is superior and more reliable, such that they conveniently ignore the bias and prejudice that their own subjective assessment brings to it. The authors remark on this bias in their full Conclusion, but their comment unfortunately didn’t make it into the Abstract.

What comes over loud and clear in this paper though is that, as well as acting as gate-keepers to health services, GPs are acting as unofficial agents/assessors for the health insurance industry and government with respect to health, welfare and sick pay benefits. Furthermore, this appears to be an important consideration, and one that may well take precedence over patient welfare.

Medicine comes across here as an industry that has lost sight of its own customers. It seems more interested in the power dynamic and in ensuring that doctors feel less vulnerable and more confident and empowered than it does in addressing the health concerns of its customers, the patients, the very people who pay their wages in both the public and private sectors. The BPS model presents a means by which doctors can ignore the shortcomings/inadequacies of their own knowledge and medical practice within the current over-stretched system and focus on the shortcomings/inadequacies of their patients instead. Medicine is one of the few industries where doctors’ failings aren’t adequately monitored, and misdiagnosis rates and their causes seldom seem to feature in any discussion of ‘medically unexplained symptoms’.

It is unsurprising to learn from the text that it is junior staff who are considered the ‘less strict gatekeepers’, something which may be worth bearing in mind! The authors suggest that one reason for this could be that those who are biomedically inclined feel insecure and so change career. I would suggest instead that those more biomedically-inclined juniors haven’t yet quit through becoming disillusioned by the demands of the medical system/establishment or haven’t yet learnt to play the system to minimize their own stress and workloads.


NB This paper references papers by both Professor Chew-Graham and Professor Burton. However, it does at least also reference David Marks’ ‘Special issue on the PACE trial’ in the Journal of Health Psychology, so it’s good that the PACE Trial controversy seems to be something they feel they can no longer ignore.

 

[Snow Leopard]

Her previous CFS papers:

"Making the diagnosis of Chronic Fatigue Syndrome/Myalgic Encephalitis in primary care: a qualitative study"
https://bmcfampract.biomedcentral.com/articles/10.1186/1471-2296-11-16

"Using Multiple Sources of Knowledge to Reach Clinical Understanding of Chronic Fatigue Syndrome"
http://www.annfammed.org/content/6/4/340.short

"Developing resources to support the diagnosis and management of Chronic Fatigue Syndrome/Myalgic Encephalitis (CFS/ME) in primary care: a qualitative study"
https://bmcfampract.biomedcentral.com/articles/10.1186/1471-2296-13-93

"Overcoming the barriers to the diagnosis and management of chronic fatigue syndrome/ME in primary care: a meta synthesis of qualitative studies"
https://bmcfampract.biomedcentral.com/articles/10.1186/1471-2296-15-44

"A qualitative study of GPs' attitudes to self-management of chronic disease"
http://bjgp.org/content/56/527/407.short

"Diagnosis and management of chronic fatigue syndrome/myalgic encephalitis in black and minority ethnic people: a qualitative study"
https://www.cambridge.org/core/jour...tative-study/5C6E624EABBE8E414AC7977F728DD02E

"Diagnosing Chronic Fatigue Syndrome in South Asians: Lessons from a Secondary Analysis of a UK Qualitative Study"
https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3902687/

"Implementing resources to support the diagnosis and management of Chronic Fatigue Syndrome/Myalgic Encephalomyelitis (CFS/ME) in primary care: A qualitative study"
https://bmcfampract.biomedcentral.com/articles/10.1186/s12875-016-0453-8

The FINE trial:
https://www.bmj.com/content/340/bmj.c1777.full

"Challenges of nurse delivery of psychological interventions for long-term conditions in primary care: a qualitative exploration of the case of chronic fatigue syndrome/myalgic encephalitis" (also from FINE Trial)
https://implementationscience.biomedcentral.com/articles/10.1186/1748-5908-6-132

"Implementation of self management support for long term conditions in routine primary care settings: cluster randomised controlled trial" (note: they didn't find an effect)
https://www.bmj.com/content/346/bmj.f2882.full.pdf html

The study is likely to be more of the same along the lines of the qualitative studies above. The fact is that we can talk about how patient needs are being met poorly and GPs don't have the tools to deal with patients - but these qualitative studies aren't going to find the answer to that either - we need biomedical research first.