Occupational Aspects of the Management of Chronic Fatigue Syndrome: a National Guideline, 2006

Sly Saint

Sly Saint

Senior Member (Voting Rights)
Occupational Aspects of the
Management of Chronic Fatigue
Syndrome: a National Guideline

Oct 2006

"Chronic fatigue syndrome (CFS) is a medically unexplained illness characterised by severe,
disabling fatigue and other symptoms. Although there is a large body of research into CFS
and its treatment, few studies have looked at the employment outcomes of individuals with
CFS. This review summarises current evidence and is intended to assist occupational health
professionals, managers and other interested parties in providing advice on fitness for work
in employees with CFS.
Three key questions were used as the basis for a systematic evidence review:
1. What treatments are effective in enabling individuals with CFS to return to or remain
at work?
2. What are the predictive factors for a successful return to work in individuals who are
currently absent from work?
3. What is the risk of relapse and what are the risk factors for relapse, in terms of
non-attendance or poor functioning at work?"

"
Guideline leader
Dr Karen Pratt
Specialist Registrar in Occupational
Medicine, BUPA Wellness, London

Director of NHS Plus evidence-based guideline project
Dr Ira Madan
Consultant Occupational Physician,
Guy’s and St Thomas’ NHS
(Foundation) Trust, London

External assessors

Professor Michael Sharpe
Professor of Psychological Medicine
and Symptoms Research, School of
Molecular and Clinical Medicine,
University of Edinburgh

Professor Peter White Professor of Psychological Medicine,
Wolfson Institute of Preventative Medicine
(School of Medicine and Dentistry),
Queen Mary’s University of London

Guideline Development Group members

Dr William Bruce-Jones
General Adult and Liaison
Psychiatrist, Avon and Wiltshire
Mental Health Partnership NHSTrust

Nikie Catchpool
Occupational Advanced Practitioner Therapist,
Bath and Wiltshire CFS/ME Service,
Royal National Hospital for Rheumatic Diseases
NHS Foundation Trust, Bath

Professor Trudie Chalder
Professor of Cognitive Behavioural
Psychotherapy,
Institute of Psychiatry, at the
Maudsley, King’s College, London

Chris Clark Chief Executive, Action for ME
(until March 2006), AfME,
3rd Floor, Canningford House,
38 Victoria Street, Bristol BS1 6BY

Sharon Hynes
Head of Human Resources and
Training, BUPA Wellness, London

Dr Meirion Llewelyn
Consultant Physician, Infectious
Diseases/General Medicine, Royal
Gwent Hospital, Newport, Gwent

Dr Jon Poole
Consultant Occupational Physician,
Dudley NHS Primary Care Trust,
Dudley, West Midlands

Suzanne Roche
Research Assistant, South London
and Maudsley NHS Trust, London

Gael Somerville
Occupational Health Nurse, British
Broadcasting Corporation, London

Bella Stensnas
Research Assistant, South London
and Maudsley NHS Trust, London

Conflicts of interest: none declared."

"
http://www.nhshealthatwork.co.uk/images/library/files/Clinical excellence/CFS_full_guideline.pdf

reading this you can see why PACE had to succeed one way or another and I imagine that this also played a big role in the 2007 guidelines.
 
Sly Saint said:
Precursor to the 2007 guidelines was this: http://www.nhshealthatwork.co.uk/images/library/files/Clinical excellence/CFS_full_guideline.pdf
Click to expand...

That was published in 2007 and stated "Review Date: 2011"

It is still on-line without being updated, despite the fact that they were eagerly awaiting the employment outcomes from PACE (which turned out to show no improvement with CBT and GET).

"A large multi-centre RCT is currently under way, comparing these three treatments as supplements to medical care with medical care alone. The trial, “Pacing, activity and cognitive behaviour therapy: a randomised evaluation (PACE) will include work outcomes [43]."

Very odd.
 
Esther12 said:
That was published in 2007 and stated "Review Date: 2011"

It is still on-line without being updated, despite the fact that they were eagerly awaiting the employment outcomes from PACE (which turned out to show no improvement with CBT and GET).

"A large multi-centre RCT is currently under way, comparing these three treatments as supplements to medical care with medical care alone. The trial, “Pacing, activity and cognitive behaviour therapy: a randomised evaluation (PACE) will include work outcomes [43]."

Very odd.
Click to expand...
@dave30th @Carolyn Wilshire @Tom Kindlon
 
I remember this very well. Dr Madan went to the APPG on ME and it was discussed there. Dr Shepherd tried to work with them to get it changed. Can't remember what happened after that.

Dr Maden said that Chris Clarke from AFME recommended either Sharpe and White for their role.

AFME was at the APPG as well and were not happy. Chris Clarke had left by then

http://www.meassociation.org.uk/2007/06/minutes-of-the-appg-may-17/
 
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This refers to the report; have not read it all but apparently there were spin off documents:

"
To accompany this Policy Document, NHS Plus has produced three booklets:
one for employers, one for employees and one for healthcare professionals, all of which contain misinformation about ME (about which the parent document states:
“The descriptive term CFS is preferable to previously used terms such as post-viral fatigue syndrome or ME”).

The booklet for employers states:

“ This leaflet summarises the evidence-based guidance on how to support individuals back into, and to remain in, work. CFS is an illness characterised by severe, disabling tiredness. A feeling of being tired all the time is very common. ME and post-viral fatigue syndrome are terms that people with CFS often use (but) most healthcare professionals prefer the term CFS. (Appropriate treatments) for CFS (are) CBT, a structured form of psychotherapy (and) GET, a structured programme designed to increase aerobic activity. If an individual complains of fatigue, an employer should refer them to an occupational health professional. Ill-health retirement should only be considered if appropriate treatments such as CBT and GET have been explored”.

The booklet for employees says much the same:

“It is a good idea to try to stay at work even though you feel tired. CBT and GET are treatments that research has shown can increase the chance of returning to work. Ill-health retirement is not a first choice”.

The booklet for healthcare professionals is even more damaging:

“The perpetuation of CFS may include deconditioning, inappropriate avoidance of activity as a coping mechanism, personal conflicts and fears about the condition itself. Management (is by) a biopsychosocial approach. There are two interventions supported by good quality evidence (sic): CBT involves cognitive restructuring to tackle negative beliefs. (Its) effectiveness may be limited by excessive focus on bodily symptoms and taking medical retirement or disability benefit during the treatment. (In) GET, patients ‘negotiate’ an aerobic exercise programme. Patients should be advised against seeking early medical retirement until all rehabilitation strategies have been explored”. The reference to support this last statement says: “Evidence from expert opinion”.


http://www.25megroup.org/Campaigngi.../Klimas, Wessely and NICE Redefining CBT.doc
 
Thanks for revisiting this SlySaint!
Indeed NHS PLUS- Now morphed into NHS Health at Work is alive, well and spreading it's pernicious advice some 12 years on without review.
Despite my and others best efforts in 2008, we could never get the damaging 2006 Report withdrawn.

NHS Health at Work Occupational Guidelines are a real problem area. They are highly material to NICE and the Review, despite Professor Mark Baker saying in answer to my question at the January Stakeholder Engagement session, - he knew nothing of this guidance!!! Perhaps he should have read his July NICE Surveillance Report! which states;

NICE state,

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

"We propose to liaise with Cochrane about the possibility of updating a Cochrane review from 2008 on cognitive behavioural therapy for chronic fatigue syndrome in adults to include data from the ‘Pacing, graded Activity, and Cognitive behaviour therapy; a randomised Evaluation’ (PACE) trial. A further review of the guideline may be considered following publication of the updated Cochrane review.

During surveillance editorial or factual corrections were identified. Details are included in appendix A: summary of evidence from surveillance.

* Just what we were all worried about…..the “justification for review being PACE and "EC”.

Surveillance proposal for consultation

We propose to not update the NICE guideline on chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy) at this time.

We propose to remove the guideline from the static list because:

 Evidence has been identified of important ongoing research in this area – for example a UK trial of internet-based cognitive behavioural therapy in children and young adults. This guideline therefore no longer meets the static list criteria. "

* Additionally; NHS Health at Work about Chronic fatigue syndrome/myalgic encephalomyelitis. page 45,

"Editorial and factual corrections identified during surveillance

During surveillance of the guideline we identified the following issues with the NICE version of the guideline that should be corrected.

Recommendation 1.4.5.7 of NICE guideline CG53 has a footnote with a link to NHS Plus. However the NHS Plus project ended on 31 March 2013.


It is noted that NHS Health at Work is progressing and developing this work.


There is a section on NHS Health at Work about Chronic fatigue syndrome/myalgic encephalomyelitis. The following footnote needs to be updated with details on NHS Health at Work:


[9] NHS Plus has produced guidance on the occupational aspects of the management of CFS/ME (search for 'chronic fatigue syndrome').



NHS Health at Work about Chronic fatigue syndrome/myalgic encephalomyelitis.


http://www.nhshealthatwork.co.uk/chronic-fatigue.asp

The 25 organisations that protested are here;
http://www.meassociation.org.uk/2007/05/joint-statement-on-nhs-plus-occupational-health-
NHS Health at Work influences and advises Government and other bodies about occupational health in the NHS. We also provide a gateway for businesses in the broader community who are seeking occupational health advice and support.


MAJOR DEVELOPMENTS RECENTLY:
http://www.nhshealthatwork.co.uk/nhs-plus.asp
Progressing the work of NHS Plus
NHS Plus was set up in 2001 to increase the quality and delivery of health and work services and support the broader Health, Work and Wellbeing Strategy. It did this through:

  • helping develop the NHS as a model employer

  • delivering services to other public sector bodies and smaller businesses

  • supporting the development of quality occupational health practices
The NHS Plus project came to an end on 31 March 2013.

NHS Health at Work is progressing and developing this work so that NHS
employees receive the highest quality health and wellbeing services.

Syngentis - a new not-for profit health and work community interest company will also progress some strands of work. Coming from NHS Plus, the Syngentis team provide expert occupational health advice to the NHS and public sector. See details of their work here.

http://www.syngentis.co.uk/

BUT
Syngentis closure

The Health and Work Community Interest Company, trading as Syngentis, has ceased trading with effect from 28th February 2018. The Board of Directors are pleased that its key interests, MoHaWK and the NHS Health at Work Network will continue.

MoHaWK, the on-line clinical benchmarking tool which was developed by Syngentis, will continue and has been transferred to the Faculty of Occupational Medicine, where it will sit alongside the national SEQOHS accreditation scheme. Hilary Winch, who has led MoHaWK over the past 5 years as Director of Nursing and Quality with Syngentis, will be continuing to lead the development and delivery of MoHaWK on behalf of the Faculty.

If you have any queries regarding MoHaWK please contact hilary.winch@nnuh.nhs.uk.

Syngentis has also provided support to the NHS Health at Work Network since its inception and Andrew Gilbey and Wendy Coleman [Network Manager and Network Administrator respectively] will be continuing their association with the Network, on a part-time, self-employed basis.

If you have any queries about the Network please contact admin@nhshealthatwork.co.uk.

Andrew is also establishing his own occupational health consultancy business and you can continue to contact him on andrew.gilbey@syngentis.co.uk.

The Directors and staff of Syngentis would like to thank all our clients and customers over the past 6 years for your support.

Part of NHS Plus's remit was to sell occupational health services from NHS
occupational health departments to external businesses, particularly small and
medium sized enterprises (SMEs).

SMEs can get occupational health advice and support through the free adviceline and through the network of NHS providers. See here for further details.

https://www.healthandworkconsultancy.co.uk/our-clinicians.htm

Syngentis
For more details on the services we provide please click on the links below:



Faculty of Occupational Medicine

Health at Work
A key aim of the Faculty of Occupational Medicine is to improve health in the workplace by providing sound sources of advice and information for employees and employers.

This section sets out:

  • why health at work matters, for both employees and employers

  • using occupational health services

  • sources of information

  • getting back to work after illness and treatment

  • dealing with health problems in the workplace

  • advice for people with disabilities.
http://www.fom.ac.uk/about-us/contact-us



Staff List and Contacts
Main telephone number: 020 7242 8698
 
The MUS/..."Fatigue", "Chronic Fatigue" plot thickens!

Question is, can a leopard change it's spots?

This NHS Guidance is critically important IMHO and I am determined to chase and get it dealt with! It's material to the NICE Scoping.....

Work to date, contacts and with movers & shakers and request for dialogue to be had with NICE and Mark Baker.


1. First, establish your facts- rang FOM this morning and spoke with a very helpful Comms lady about the fact this guidance still exists, was done by FOM in 2006 and was never reviewed in 2011.
Is that still the case?
It seems so!

2.Are any plans afoot to address this oversight? - Maybe.......
3. If NICE are reviewing ME/CFS Guidance and reference this, should this not be addressed at the same time? Perhaps.......
4. She offered they DO have expertise, training opportunities( don't ask!) and specialist interest in this at FOM- their chosen "expert" being Dr Ira Madan who now operates at Kings........
In fact DR M did a specialist talk at the last FOM conference last year on MUS, .....ahhhhh!
5. The conversation went thus, "It is presumed" DR M is entirely "up to speed" on these matters.......latest developments, latest research, etc, etc -so she carries a lot of influence, kudos and clout, especially as still the Parliamentary Occupational Health Physician....I said I have to beg to differ on that and take on things until I see for myself what her thoughts are.... and that I would contact her soon to satisfy my curiosity....
6. Dr M REFUSED to alter the 2006 Report, which is still extant- so I am not raising my hopes.


A must go event......... The GREAT AND THE GOOD
http://www.occupationalhealthconferences.co.uk/index.html

The SOM/FOM annual conference is the international event of the year for occupational health professionals.

The SOM/FOM annual conference is the international event of the year for occupational health professionals. Topics include mental health, the changing world of work and multi-disciplinary working; with hot topics of specific skills to make a difference to your work, such as on fitness to drive and legal issues.


Monday 25th June
Occupational Medicine 2018 Trainee Conference

Topics include mental health, the changing world of work and multi-disciplinary working; with hot topics of specific skills to make a difference to your work, such as on fitness to drive and legal issues.
Confirmed Speakers
  • Dame Carol Black Expert Advisor on Health and Work to the Department of Health
  • Professor Neil Greenberg King's College, London
  • Professor Craig Jackson Birmingham University
  • Professor Diana Kloss MBE Occupational Health Law Barrister
  • Professor Gina Radford Deputy Chief Medical Officer
09.15 Eponymous Lecture: the 2018 Thackrah lecture Minister of State for Health Q and A

13.45 b) Building a return to work intervention
Dr Ira Madan, Consultant and Honorary Reader in Occupational Medicine, Guy’s & St Thomas’ NHS Foundation Trust and King’s College, London

19.30 Gala dinner
venue TBC. After-Dinner speaker: Norman Lamb, MP, SOM Patron – speaker; with an introductory speech from Dr William Buchta, ACEOM President

Wednesday 27th June
Main Conference Day 2

09.25 The future of Occupational Health and Medicine Research Convenor: Dr Ira Madan
Professor Gina Radford, Deputy CMO
 
The document Suffolkres just posted included this section on Madan:

Notably, the same people (Professors White, Sharpe and Chalder) were involved with the production
of the NHS Plus Guideline on returning people with “CFS/ME” to employment (Occupational Aspects
of the Management of Chronic Fatigue Syndrome: a National Guideline; October 2006), where they
also declared no conflict of interests.

Two years later, after sustained representations, on 20th November 2008 the Department of Health
confirmed (in writing) in relation to the NHS Plus Guideline about Professors White, Sharpe and
Chalder: “I can confirm that the guideline contributors gave written confirmation that they had no
conflicts of interest”.

Since it was believed that Professors White, Sharpe and Chalder all did have obvious and serious
conflicts of interest and since any such conflicts had been denied by them, further representations
were made questioning why their known conflicts of interest had been denied.

Following these representations, on 23rd December 2008 a remarkable revelation was made – in
writing – by Dr Ira Madan, Director of Clinical Standards, NHS Plus (who, with Wessely and Chalder,
was based at King’s College):

“The Department of Health have asked me to investigate your concern that one of the guideline
development group members, Professor Trudie Chalder, and the two external assessors, Professor
Michael Sharpe and Professor Peter White, had conflicts of interest whilst involved in the production of
the guideline. I can confirm that I was aware of the potential for competing interests that you have
stated. The roles that Professor White, Professor Sharpe and Professor Chalder have undertaken for
the agencies and companies that you stipulate (i.e. the DWP and the medical and permanent
health insurance industry) were in the public domain prior to the publication of the NHS Plus guideline.
I am content, as the Director of that guideline, these potential competing interests did not
in any way influence the synthesis of the evidence or the guideline recommendations”.

There is thus written confirmatory evidence from Dr Ira Madan that Professors White, Sharpe and
Chalder all did have what she referred to as “competing interests”, but that she was “content”
about the situation.

However, the MRC PACE Trial Minutes twice record that these same people had declared no
conflicts of interest (recorded first in the Minutes dated 22nd April 2004 and again in the Minutes
dated 27th September 2004). Thus there is written evidence -- from Dr Madan at the Department of Health
-- illustrating how the normal rules of independent peer review and conflicts of interest seemed to have
been suspended when it came to the “evidence-base” for CBT/GET in people with ME/CFS because,
in relation to the NHS Plus Guidelines, two reviewers were allowed to sit in judgment on their own publications, with
the prior knowledge and permission of Dr Ira Madan. Furthermore, they were not required to make
conflict-of-interest declarations, even though their conflicts were known about by Dr Madan. This is not
peer-review as the rest of the scientific world understands it.
Click to expand...

Thanks for digging into this @Suffolkres. Even if you can't get changes, getting them on the record refusing to make changes could still be helpful. The guidance is clearly out of date.
 
"
There is thus written confirmatory evidence from Dr Ira Madan that Professors White, Sharpe and
Chalder all did have what she referred to as “competing interests”, but that she was “content”
about the situation."

"This is not peer-review as the rest of the scientific world understands it."

words fail me.
 
I am seriously thinking of suggesting a peaceful protect outside of the FOM Conference in London in June?
What do others think?
Or we could sponsor some delegates like Jo Edwards and David Tuller to attend?


http://www.occupationalhealthconferences.co.uk/index.html

"25TH TO 27TH
June 2018
Regent’s University, London
The SOM/FOM annual conference is the international event of the year for occupational health professionals."

The iniquity of their guidance and influence on ME CFS matters needs to be robustly challenged and DR IM in particular who did a speech about MUS last year......

"Topics include mental health, the changing world of work and multi-disciplinary working; with hot topics of specific skills to make a difference to your work, such as on fitness to drive and legal issues."

FOM http://www.fom.ac.uk/ wield such power, http://www.fom.ac.uk/health-at-work-2 yet they are only a "membership" of 400 and total with hangers on of of just over 1500, http://www.fom.ac.uk/wp-content/uploads/170803-Annual-Report-2016-Signed.pdf

http://www.fom.ac.uk/press-releases/fom-takes-over-running-of-mohawk
"MoHaWK – or Management of Health at Work Knowledge – is a national web-based benchmarking tool which supports local audit for occupational health services. It measures evidence-based clinical practice and processes in order for services to identify if improvements are required. It allows services to benchmark against their peers and promotes the use of data to drive successful improvements across the specialty."

"MoHaWK promotes a data-driven approach to clinical audit, which allows services to plot and manage performance in key areas such as time to intervention and health surveillance. This ‘big picture’ view of trends offered by MoHaWK has helped over 200 services improve their practice performance. The tool has assisted services in winning contracts, boosting customer satisfaction, meeting SEQOHS accreditation standards and increasing staffing levels."
 
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Suffolkres said:
I am seriously thinking of suggesting a peaceful protect outside of the FOM Conference in London in June?
What do others think?
Or we could sponsor some delegates like Jo Edwards and David Tuller to attend?
Click to expand...

I don't know. Naturally I'm wary of how things might come across to people immersed in the UK's prejudices about ME protesters, but it might be helpful to spread awareness, and I can sometimes be over cautious. I expect a lot of people would utterly dismiss the concerns raised, regardless of how valid they were.
 
Esther12 said:
I don't know. Naturally I'm wary of how things might come across to people immersed in the UK's prejudices about ME protesters, but it might be helpful to spread awareness, and I can sometimes be over cautious. I expect a lot of people would utterly dismiss the concerns raised, regardless of how valid they were.
Click to expand...

You can't keep quiet anymore out of fear of feeding some stereotype those bastards created of us. If we keep quiet nothing will change.
 
Suffolkres said:
I am seriously thinking of suggesting a peaceful protect outside of the FOM Conference in London in June?
What do others think?
Or we could sponsor some delegates like Jo Edwards and David Tuller to attend?


http://www.occupationalhealthconferences.co.uk/index.html

"25TH TO 27TH
June 2018
Regent’s University, London
The SOM/FOM annual conference is the international event of the year for occupational health professionals."

The iniquity of their guidance and influence on ME CFS matters needs to be robustly challenged and DR IM in particular who did a speech about MUS last year......

"Topics include mental health, the changing world of work and multi-disciplinary working; with hot topics of specific skills to make a difference to your work, such as on fitness to drive and legal issues."

FOM http://www.fom.ac.uk/ wield such power, http://www.fom.ac.uk/health-at-work-2 yet they are only a "membership" of 400 and total with hangers on of of just over 1500, http://www.fom.ac.uk/wp-content/uploads/170803-Annual-Report-2016-Signed.pdf

http://www.fom.ac.uk/press-releases/fom-takes-over-running-of-mohawk
"MoHaWK – or Management of Health at Work Knowledge – is a national web-based benchmarking tool which supports local audit for occupational health services. It measures evidence-based clinical practice and processes in order for services to identify if improvements are required. It allows services to benchmark against their peers and promotes the use of data to drive successful improvements across the specialty."

"MoHaWK promotes a data-driven approach to clinical audit, which allows services to plot and manage performance in key areas such as time to intervention and health surveillance. This ‘big picture’ view of trends offered by MoHaWK has helped over 200 services improve their practice performance. The tool has assisted services in winning contracts, boosting customer satisfaction, meeting SEQOHS accreditation standards and increasing staffing levels."
Click to expand...

It's not a bad idea. I did leaflet a conference that IM was involved with which was shortly after their Guideline was presented to the APPG. They approached me and asked me to leave. They did however, allow me to enter and put my leaflets on the desk with other information for the conference. I went back an hour later and some had been taken and they did allow the rest to stay there which was a good sign.

Was treated with politeness but a bit of the "lone nutter".

Too sick to attend a protest at the moment sorry.
 
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Solstice said:
You can't keep quiet anymore out of fear of feeding some stereotype those bastards created of us. If we keep quiet nothing will change.
Click to expand...

I'm definitely not saying we should keep quiet! I think it's worth trying to think about any prejudices we may face, in order to consider what might be te most effective way of speaking out, and what we may need to do to counter-act them.
 
ukxmrv said:
It's not a bad idea. I did leaflet a conference that IM was involved with which was shortly after their Guideline was presented to the APPG. They approached me and asked me to leave. They did however, allow me to enter and put my leaflets on the desk with other information for the conference. I went back an hour later and some had been taken and they did allow the rest to stay there which was a good sign.

Was treated with politeness but a bit of the "lone nutter".

Too sick to attend a protest at the moment sorry.
Click to expand...

http://www.meassociation.org.uk/2007/06/minutes-of-the-appg-may-17/

Worth a re read…….’cos it’s still out there being used and in July NICE suggested they would reference and link to it….I think this needs to be incoporated within David Tuller's work as it's all inextricably linked....It appears IM does virtually no "clinical work" ie see patients, let alone ME/CFS patients!
It may be a bit long winded and tortuous, but I am the elephant that never forgets!

Failures to mention that ME is classified by the WHO as a neurological disorder (in ICD10:G93.3), or to use the term ME. After some at times heated discussion, Dr Madan said this was a decision of the group, really arrived at because members did not want to confuse employers who are used to seeing the term CFS on sick notes. There had been no intention to denigrate the term ME.

Failure to reflect any doubt or caution about the efficacy of CBT and Graded Exercise in the treatment of ME. Dr Madan said the only evidence presented to the Guideline Development Group of therapies which assisted in getting people back to work were CBT and GET, although she acknowledged that neither was curative and CBT should in no way be considered a panacea.

Advising people who feel tired to try to stay at work on the basis that otherwise they will lose ‘work hardiness’. Dr Madan commented that it well known that people on sick leave from work get depressed after six weeks and people do indeed lose ‘work hardiness’. Hugh Berger said such comments were deeply offensive to people with M.E.

Failure to recognise that employees who are moderately affected with ME/CFS may be ill for years and that 25% of people with the illness are severely affected and may well have their illness for life. Dr Madan said of course she realised that 25% of people with CFS were severely affected and would probably never return to work. The guidance was not intended to include them.

Failure to mention that the CMO’s Report in 2002 and the full version of the NICE draft guideline both emphasise patient choice in undertaking treatment for the illness. Dr Madan said the NHS Plus guidance was totally different intended for total different audiences: “ I have had an awful lot of positive feedback, particularly saying how helpful it’s been”.

The charities’ joint response to the guidance had said that the guidance was insulting to people with the illness who had fought tooth and nail to keep their jobs and tried everything to get better. Dr Madan responded to this saying she had been in occupational health for 17 years and she had worked tooth and nail herself to keep people with CFS at work. She cited one case from her work as occupational health adviser to the Houses of Parliament.

APPG chair Dr Des Turner said the NHS Plus guidance had been produced with the best of intentions but nothing was ever totally beyond criticism. He hoped criticism would be voiced in an amicable way.

Christine Harrison (BRAME) said the evidence covered in the York Review clearly failed to reflect the growing volume of biomedical evidence on causes and pathogenesis. Barbara Robinson (Suffolk Youth and Parent Group) agreed, adding that the review also failed to reflect emerging evidence on iatrogenic illness. Dr Turner said one of the major problems was the very weak research base for ME.
--------------------------------------------------------------------------------------

* Now it appears IM said to a Select Committee (2010-2011) that she does 1 day a week at Parliament.... She goes on to say, " I am not doing clinical work elsewhere"...." .......have had work and contracts for the private sector industries....."

? (Doesn't that imply a "conflict of interest" working on guidance which benefits employers?)

https://academic.oup.com/occmed/article/60/4/246/1390148
Why I became an occupational physician…
Ira Madan

At medical school, a doctor from the Employment Medical Advisory Service gave us an excellent lecture in our public health module. She told us about her work, which was varied and interesting. She stressed the importance of disease prevention and a holistic approach to medicine, phrases hardly ever heard in the rest of my training. The lecture was inspirational and the seed was sown. After doing a general medical rotation, I needed to make a decision.
I loved hands-on clinical medicine but still wanted to explore less conventional clinical options, including occupational medicine. I arranged to meet Ching Aw who directed me to David Coggon and Kit Harling. They were welcoming and supportive, had appealing jobs, were well motivated and seemed to enjoy their work. They told me that the scope of occupational medicine was broad; clinical, managerial, National Health Service (NHS), non-NHS, research and teaching—in fact what you make of it.
It all seemed a far cry from the cut-throat world of acute clinical medicine, where my consultants moaned about their workload, administrators or the state of the NHS on a daily basis. I was sold. I have since spent 19 years in occupational medicine...........I have worked in the NHS, government and academia and have serviced non-NHS contracts....."

Professer David Coggon is obviously a highly esteemed mentor to IM.... but I have had run ins, rows. with him over ME when he was Chair of the Advisor Committee on Pesticides.

He is cited here.

https://www.ncbi.nlm.nih.gov/books/NBK274235/
Beyond Myalgic Encephalomyelitis/Chronic Fatigue Syndrome
Redefining an Illness
Committee on the Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome; Board on the Health of Select Populations; Institute of Medicine.

Washington (DC): National Academies Press (US); 2015 Feb 10.
ISBN-13: 978-0-309-31689-7ISBN-10: 0-309-31689-8


Coggan was Chair of the Advisory Committee on Pesticides and now resides
at Committee on Toxicity.
He did a dreadful paper on ME/CFS from ACP in reply to the Poyal Commission
on Environmental Pollution 2005 Report which featured ME!
It's all "perception2 etc....!

He was also instrumental in making comments which enabled Georgina to succeed
in the High Court!

He has written some much more entertaining than this!
MRC Epidemiology Resource Centre Date: Saturday 21 March 2009 23:52

"“Evidence is showing us that conditions such as repetitive strain injury
and lower back pain do not always occur simply through over-exposure to a
hazardous agent or activity. Rather, the risk of symptoms and disability
appears to be importantly modified by individual psychology and by societal
beliefs and expectations.”

"David has been involved in investigations into Gulf War illnesses, mobile
phone-related issues, chronic fatigue syndrome/ME and multi-chemical
allergies."

[Tom: UK taxpayers' money is paying for this]

http://www.mrc.ac.uk/Ourresearch/Unitscentresinstitutes/Profiles/ERC/MRC0053
14

Occupation and environment

Some of the ERC’s research continues within its original remit to
investigate occupational and environmental causes of disease. This programme
of work is being led by Professor David Coggon and Professor Keith Palmer.

Now that the causes of most of the serious occupational hazards of our
modern world have been identified and addressed, attention has shifted to
non-fatal work-related disorders that give rise to widespread illness and
disability and put financial pressure on employers and healthcare services.
Important among these are musculoskeletal disorders of the spine, upper
limbs and large joints. Back pain alone costs the NHS an estimated £690m
each year.

At the same time, increased public awareness of the potential dangers of
workplace hazards, including using mobile phones, could also pose important
unrecognised risks to health.

Keith, an Honorary Professor of Occupational Medicine at the University of
Southampton and Consultant Occupational Physician, explains: “Evidence is
showing us that conditions such as repetitive strain injury and lower back
pain do not always occur simply through over-exposure to a hazardous agent
or activity. Rather, the risk of symptoms and disability appears to be
importantly modified by individual psychology and by societal beliefs and
expectations.”

He adds: “Understanding the contribution of these non-occupational
influences is crucial to tackling the problem. For example, efforts to
prevent back pain through restrictions on lifting might have unintended
adverse consequences if they reinforce workers’ expectations of injury.”

Both scientists, and their colleagues, contribute widely to the public
debate on the risk factors and clinical management of occupational health.
David has been involved in investigations into Gulf War illnesses, mobile
phone-related issues, chronic fatigue syndrome/ME and multi-chemical
allergies. Keith chairs the Industrial Injuries Advisory Council, a
government body that advises ministers on occupational causes of illness and
their compensation."
 
Just saw Ira Madan had co-authored a 2014 paper with Trudie Chalder: https://www.sciencedirect.com/science/article/pii/S209379111400050X

A couple of comments on it from Tom Kindlon: https://pubpeer.com/publications/D4BB18D9664BA8ED61B8DEA6FE5161

Also, it looks like those leaflets had previously been even worse:

NHS PLUS LEAFLETS ON OCCUPATIONAL HEALTH ASPECTS OF ME/CFS

Following a joint initiative involving 23 local and national charities/organisations, Dr Ira Madan, who came to the APPG last year, has now produced revised versions of all three leaflets. These are now up on the NHS Plus website. Although not perfect the revision has incorporated a significant number of changes that were being requested by the charities and represent a significant change in content.
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https://www.meassociation.org.uk/20...n-me-meeting-held-on-wednesday-2nd-july-2008/

I thought this was of interest for White and Sharpe too:

"Finally, there were questions about possible conflicts of interest – especially relating to members of the guideline development group and external referees having links to insurance companies. Dr Madan stated that no conflicts of interest had been declared."

https://www.meassociation.org.uk/2007/05/appg-summary-may-17/

edit - @Suffolkres had already posted this even more interesting bit above:

Following these representations, on 23rd December 2008 a remarkable revelation was made – in
writing – by Dr Ira Madan, Director of Clinical Standards, NHS Plus (who, with Wessely and Chalder,
was based at King’s College):

“The Department of Health have asked me to investigate your concern that one of the guideline
development group members, Professor Trudie Chalder, and the two external assessors, Professor
Michael Sharpe and Professor Peter White, had conflicts of interest whilst involved in the production of
the guideline. I can confirm that I was aware of the potential for competing interests that you have
stated. The roles that Professor White, Professor Sharpe and Professor Chalder have undertaken for
the agencies and companies that you stipulate (i.e. the DWP and the medical and permanent
health insurance industry) were in the public domain prior to the publication of the NHS Plus guideline.
I am content, as the Director of that guideline, these potential competing interests did not
in any way influence the synthesis of the evidence or the guideline recommendations”.
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It looks like Action for ME's Chris Clarke bears major responsibility for all this. Ira Madan said that he had recommended one of the two external assessors (White & Sharpe).

I pulled out all their summaries of RCT & systematic review evidence they had on interventions leading to improved return to work in the appendix of their guidelines - there wasn't much:

Deale 2001:


56% of the CBT group were in full or part-time employment, in comparison to 39% of the relaxation group.


Mean number of hours worked per week: CBT group – 35.57 Relaxation group – 24


Mean number of relapses since completion of treatment: CBT group – 2.58 Relaxation group – 4.08

Fulcher:

[No mention of between group differences] 66% of patients who completed exercise treatment were working or studying at least part-time, compared with 39% of all 66 patients before treatment (95% confidence interval of difference 9% to 44%).

Morantz [systematic review]:

1. Some CFS patients who underwent a variety of interventions ranging from no treatment to individualised rehabilitation programmes were able to return to work, but the sample sizes are too small and the study designs too disparate to allow comparisons of different treatments in their association with returning CFS patients to work.

Prins:

Although at 14 months CBT was significantly more effective than both control conditions for fatigue severity, differences in the time spent working in a job did not reach the 5% level of significance.

Ross [systematic review]:

Only CBT, rehabilitation and exercise therapy interventions were associated with restoring the ability to work. No specific patient characteristics were identified as best predictors of positive employment outcomes.

Note: The Morantz (p.48) and Ross papers used the same data, although Morantz was published in 2003 and Ross in 2004. Despite using the same data, the papers have drawn slightly different conclusions.

Huibers:

There was no significant difference in outcomes between the experimental and control groups. Outcome measures were fatigue severity, self-reported absenteeism, registered absenteeism and clinical recovery. These were assessed at four months, eight months and 12 months. As study population was heterogeneous with only 44% of the employees meeting criteria for CFS at baseline. In addition, the duration of CBT was shorter than other studies which have shown CBT to be effective in CFS.

Seems a bit weak to add up to this in their summary:

Key findings of the review:

• Cognitive behavioural therapy and graded exercise therapy have been shown to be effective in restoring the ability to work in those who are currently absent from work.
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For what is worth, this is something I wrote in 2012 about the evidence regarding CBT and GET:

http://journals.plos.org/plosone/ar...notation/8f8ee0a6-dca3-4e0f-b0b7-9d5d504a18a2

Coercive practices by insurance companies and others should stop following the publication of these results
Posted by tkindlon on 06 Aug 2012 at 02:17 GMT
For over a decade now, some individual patients with Chronic Fatigue Syndrome (CFS)* in Great Britain and Ireland (and probably elsewhere) have been pressurised by insurance companies into undertaking graded exercise therapy (GET) and cognitive behaviour therapy, based on scheduling increases activity. This seems to have been largely due to hype around the efficacy of GET and CBT and extrapolations from subjective measures, as the evidence that such interventions are efficacious in restoring the ability to work is weak.

A lot of the evidence has been summarised in a review (1). For some reason this is quoted sometimes as justifying claims it is is evidence-based to say that GET and CBT have been shown to restore the ability to work in CFS. However the data is far less impressive. It is summarised in table 6. The accompanying text says: "Among the 14 interventional trials with work or impairment results after intervention, there were too few of any single intervention with any specific impairment domain to allow any assessment of association."

The PACE Trial is by far the biggest trial of these therapies in the field. It shows neither CBT nor GET led to an improved rate of days of lost employment [Means (sds): APT: 148.6 (109.2); CBT: 151.0 (108.2); GET: 144.5 (109.4); SMC (alone): 141.7 (107.5)] (Table 2) (2). Neither CBT nor GET led to improvements in numbers receiving welfare benefits or other financial payments (Table 4). These results are in contrast to the self-reported improvements in fatigue, physical functioning and some other measures (3).

This information comes a few years after a major audit of Belgian CFS rehabilitation (CBT & GET) centres (4). The sample size was large, with over 600 patients with a confirmed diagnosis of CFS (using the Fukuda et al. criteria (5)) taking part. It "comprised on average per patient 41 to 62 hours of rehabilitation" It found that "physical capacity did not change; employment status decreased at the end of the therapy." Again improvements were found in some self-reported measures.

The ethics of using coercion in medical practice generally is very questionable. Coercive practices should certainly be very questionable with therapies where they are plenty of reasons to believe they can cause harm (6). Furthermore, high rates of adverse reactions have been reported by patients, particularly with GET (7).

Also chronic fatigue syndrome causes a reduced amount of energy to be available to individuals. It can be very challenging to be ill with CFS, trying to balance the different aspects of one's life with reduced energy levels. People with CFS shouldn't be forced without good reason to have to do a time- and energy-consuming CBT or GET course. The data shows there isn't a good reason. Of course even if the results were better, its still very questionable whether coercion is justified: we don't coerce (healthy) people to exercise for at least 30 minutes five times a week even though it would be good on average in terms of people's health. Similarly, we don't force people to drink less than the recommended limit for daily and weekly alcohol assumption. And just to be clear again, the benefits (in comparison to the risks) of CBT or GET are not nearly as clear cut as the benefits (in comparison to the risks) of exercising regularly or avoiding excesses of alcohol are for people in the general population.

Hopefully the publication of this trial will stop coercive practices in the CFS field once and for all.

* I'll use the term for consistency.

References:

(1) Ross SD, Estok RP, Frame D, Stone LR, Ludensky V, Levine CB. Disability and chronic fatigue syndrome: a focus on function. Arch Intern Med. 2004 May 24;164(10):1098-107.
https://jamanetwork.com/journals/jamainternalmedicine/fullarticle/217015

(2) McCrone P, Sharpe M, Chalder T, Knapp M, Johnson AL, et al. (2012) Adaptive Pacing, Cognitive Behaviour Therapy, Graded Exercise, and Specialist
Medical Care for Chronic Fatigue Syndrome: A Cost-Effectiveness Analysis. PLoS ONE 7(8): e40808. doi:10.1371/journal.pone.0040808

(3) White PD, Goldsmith KA, Johnson AL, Potts L, Walwyn R, et al. (2011) Comparison of adaptive pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medical care for chronic fatigue syndrome (PACE): a randomised trial. Lancet 377: 823–836.

(4) [Fatigue Syndrome: diagnosis, treatment and organisation of care]
KCE Reports 88. (with summary in English). Accessed: 6th August, 2012.
https://kce.fgov.be/en/fatigue-syndrome-diagnosis-treatment-and-organisation-of-care

(5) Fukuda K, Straus SE, Hickie I, Sharpe MC, Dobbins JG, Komaroff A. The chronic fatigue syndrome: a comprehensive approach to its definition and study. International Chronic Fatigue Syndrome Study Group. Ann Intern Med. 1994 Dec 15;121(12):953-9.

(6) Twisk FN, Maes M. A review on cognitive behavorial therapy (CBT) and graded exercise therapy (GET) in myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS): CBT/GET is not only ineffective and not evidence-based, but also potentially harmful for many patients with ME/CFS. Neuro Endocrinol Lett. 2009;30(3):284-99. Review.

(7) Kindlon T. Reporting of Harms Associated with Graded Exercise Therapy and Cognitive Behavioural Therapy in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Bulletin of the IACFS/ME. 2011;19(2):59-111.
https://iacfsme.org/PDFS/Reporting-of-Harms-Associated-with-GET-and-CBT-in.aspx
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