BBC Radio 4: Rewriting The Psychiatrist’s Bible Tuesday 4 August

Update:  Available via BBC iPlayer until

8:42pm Tuesday 11th August 2009

http://www.bbc.co.uk/iplayer/episode/b00kf117/Rewriting_the_Psychiatrists_Bible/

 

http://www.bbc.co.uk/pressoffice/proginfo/radio/2009/wk31/7day.shtml

Rewriting The Psychiatrist’s Bible

Tuesday 4 August

8.00-8.40pm BBC Radio 4  |  Sky 0104  |  Freeview 704

Matthew Hill explores the ties between psychiatry and the pharmaceutical industry, in Rewriting The Psychiatrist’s Bible.

The Diagnostic And Statistical Manual Of Mental Health Disorders (DSM) is currently being revised. It has a huge influence, not only in the United States where it is published by the American Psychiatric Association (APA), but globally. In Britain, most psychiatrists would not get their work published if they did not follow the DSM diagnostic guidelines.

Panellists are selected by the APA. Its critics say the manual provides an invaluable service for the drug industry by defining new conditions for which new drugs can be marketed. Previous editions have been heavily criticised for a lack of transparency between the panel members and pharmaceutical companies. But the last edition was published in the Nineties and the APA says that things have changed since then and that this time it will be different. Members of the panel have to declare their interests and there is a limit to the amount they can earn from outside interests.

Also under review is the “Chinese Menu” aspect of its diagnostic criteria and the sheer number of conditions it includes. Many British psychiatrists are concerned about the prospect of bipolar disease in children being added to the next edition – not least because the drugs used to treat the disorder have serious side effects.

For the fifth edition, new conditions under consideration include shopping addiction, internet addiction and sex addiction.

Rewriting The Psychiatrist’s Bible investigates whether the APA’s new transparency policy goes far enough and whether real conditions are being medicalised or just traits of human personality.

Presenter/Matthew Hill, Producer/Geraldine Fitzgerald

BBC Radio 4 Publicity

Repeated Sunday 9 August 5.00pm and should also be available on R4 iPlayer

RSM “Medicine and me” event: Commentary by John Sayer

Royal Society of Medicine “Medicine and me” event on ME and CFS held Saturday, 18 July 2009

Commentary

John Sayer (Chair, M.E. Support-Norfolk)

25 July 2009

The half-day conference was organised jointly by the Royal Society of Medicine, the MEA, AfME, AYME, the 25% ME Group and TYMES Trust.

The promotional literature informed us that:

“‘Medicine and me’ conferences, initiated and developed by the Royal Society of Medicine, are specifically designed for patients. These meetings bring together patients, their families, carers, advocates, patient support groups, clinicians and researchers to discuss care and research issues in a particular condition…[and]…aim to provide a forum in which patients’ concerns about their illness are given top priority.”

Unfortunately, the pattern of the day – two presentations at a time followed by a five-minute slot for questions – did not really provide for much in the way of patient-led questions and/or discussion. It was, however, an opportunity to see what the various bodies involved had to say for themselves (and encouraging to hear Jane Colby of TYMES Trust underline in her welcome address that the title of the proceedings was “Medicine and me: ME *and* CFS”).

(This write-up is based on notes taken at the time by myself and Gus Ryan.)

Session 1 was chaired by Dr Charles Shepherd (MEA), who reminded us that there had been two parliamentary meetings [i.e. the All-Party Parliamentary Group on ME and the Countess of Mar's ForwardME Group] earlier in the week and that people still had a chance to submit written evidence to the APPGME’s NHS service provision inquiry.

Dr Abhijit Chaudhuri (of the Essex Centre for Neurosciences) spoke on “A rational, efficient and practical approach to diagnosis”. He said that ‘CFS’ represents a wide group of patients and the term does not help matters; that there should be earlier diagnosis, perhaps three months into illness onset (six weeks where children are concerned). He does not think the NICE Guideline has helped. In his view, post-exertional malaise, muscle cramps and *well preserved motivation and interest* (my emphasis) are key symptoms of M.E. and referral should be to a neurologist, since even psychiatrists admit that roughly 10% of ‘CFS’ sufferers have a neurological problem. He said that we need a national centre and funding for it (Romford being a treatment – not research – centre). His talk ended with a slide presentation of inflammation of the dorsal root ganglion, which he pointed out was “the gatekeeper of sensations”.

In the question slot Ciaran Farrell asked how we could change the NHS – to much applause from the audience. Dr Chaudhuri repeated that we need a national research centre.

“M.E. in children and adolescents” was presented by Shannen Dabson, a teenager whose story struck a particular chord with me as a teacher (prior to M.E.). She has had M.E. for six years, and now has very little trust in adults, having received virtually no respect for herself and her diagnosis. She found herself “written off” by her school, who didn’t send her work, didn’t mark the work she managed to do, didn’t send her the school newsletters or keep her informed of such things as the school photographs (which was the part that had me closest to tears, as I’d suffered the same treatment from my last employer: I will never forgive them for my absence from the school photograph of my form pupils; for both Shannen and me, it was like being airbrushed out of history). Shannen had had to make her own arrangements for taking exams, as her school refused to enter her on the grounds of a poor attendance record. To her admirable credit, she got six GCSEs anyway! I’m hoping to reproduce her talk for “MES-N” members, as it should be inspirational, especially for youngsters. She came up with what I personally consider to be a very practical, appropriate and *scientifically sound* slogan: “Work smarter, not harder!”

Hardip Begol (of the Department for Children, Schools and Families) spoke on “Addressing the educational impact of ME”, and said that Shannen’s situation is all too common from an educational point of view and that it was difficult to make teachers believe in ME/CFS. No personal disrespect to Mr Begol, but it struck me that what he had to say in his presentation did not have all that much immediate relevance, being, as one might expect, current government ‘fudge’. His comments were not actually specific to M.E., but here’s hoping that the conference gave him something to think about and take back to the DfCSF (though I’m not really holding my breath on that one).

In the question slot following these two talks Mary-Jane Willows (of AYME) said that the balance of power was with schools and Jane Colby pointed out that parents are too afraid to complain. (Personal note – no wonder, with the spectre of Social Services waiting in the wings, ready to pounce.)

Catriona Courtier (of the West London M.E. Self Help Group) spoke on “Treatment: the patient’s perspective”. She has had M.E. for twenty six years and her daughter is also ill. She reminded us that an AfME survey revealed that patients received very little proper treatment and that an MEA survey demonstrated that graded exercise therapy (GET) was the most dangerous form. She is ‘anti-NICE’. She said that staff at her local clinic *want* to help – but are misinformed.

Prof Anthony Pinching of the Peninsula Medical School, Plymouth, spoke on “Treatment – evidence-based and pragmatic approaches” and thinks that things are changing for the better. In his view, M.E. is a physical illness with psychological consequences and that people should work together and “not lob bricks at each other”. He said that the Cornwall service does make home visits. He advocates a ‘symptom-control’ approach: which symptoms does a patient want most help with? I found him to be a bit vague and general, really, and he seemed to be saying that every individual needs different treatment (including psychological approaches), to be negotiated between patient and physician, and seemed to imply that success depended on the doctor-client relationship (which I personally find a bit too New-Agey: “permission to be ill and permission to have fun whilst you’re ill”). He did, however, say that there is a need for “building M.E. into the medical curriculum” (note – although it depends on exactly *what* is built in!). In response to a question about CBT from Dr Charles Shepherd, he indicated that such treatment should be ‘individualised’.

In the question slot Dr Chaudhuri expressed disagreement with Prof Pinching, saying that patients are *not* listened to and that the NICE Guideline is aimed at a *broad* group – these points being applauded by the audience. Prof Pinching responded that the NICE Guideline is not perfect, but should be used “to best effect”.

After a short (very short!) break, Sir Peter Spencer (Chief Executive Officer, AfME) chaired Session 2.

Dr Neil Abbott (ME Research UK) spoke on “Research: what do patients want and why isn’t it happening?” He suggested that the RSM host a biomedical conference on M.E. (Applause!) He said that the psychosocial model is predominant in the UK, although not quite so much in the US. He quoted Prof Simon Wessely with reference to psychosocial interventions: “certainly, those interventions are not the answer to CFS”. MERUK survey reveals that research on mitochondria, RBCs, immune cells, muscles, blood vessels, genes and brain are wanted; that this is not  “sexy” illness. ‘ME/CFS’ label is a problem: it is a process of elimination and that leads to a dustbin diagnosis. He is critical of the psychosocial approach, which is applicable to *all* illnesses (used to manage symptoms) and not specific to M.E. The real problem, in his view, is lack of funding.

Prof Stephen Holgate (University of Southampton) spoke on “ME: a research orphan for too long”. He said we need research because too little is known [sic] and said that the history of M.E. has dictated a mental health approach, it being perceived as having evolved from neurasthenia ['nervous debility']. He said, “It’s a system disorder” and that ‘omics’ should be used – i.e. genomics, proteomics and metabolomics. He referred to ‘ME/CFS’ as a “condition or conditions (25 or more)”; that the government won’t allow integrated research. He is putting together a workshop in November (the Medical Research Council Interdisciplinary Expert Group on M.E.), a systematic review deciding priorities, saying that a collaborative needs to be formed from charities [sic], the MRC and researchers, and that there is a need to ‘join up’ patients from clinics/centres. [Personal note: it all seemed to me a bit like reinventing the wheel and I have my misgivings about not only which 'charities' will be invited to participate but also the calibre of patients from the clinics/services.]

Dr David Misselbrook (Dean of the RSM) then invited questions to the panel of speakers. An elderly neuroscientist and his grandson tried to deliver a plug for the Lightning Process, the grandson claiming we had “wasted all this time talking when a cure has already been found” [sic], but Dan [from "M.E. Support-Norfolk"] pointed out that we hadn’t come all this way to hear a sales pitch for LP and Jane Colby expressed serious misgivings about success claims, citing an example of further harm caused to a patient; she also pointed out that no one can legally claim recompense if LP doesn’t cure a patient as it is not offered as a treatment, but a ‘training’.

Ciaran Farrell challenged Prof Holgate’s ‘history’ of M.E. but Prof Holgate said he had been misunderstood, that it wasn’t his own belief that M.E. was a form of neurasthenia and that he agreed with Ciaran, adding that he wanted to get rid of the terms “CFS” and “M.E.” [whatever that implies!].

In “Closing remarks”, Mary-Jane Willows said that there should be quick diagnosis, raising of awareness and no “one size-fits-all” approach. Doris Jones (of the 25% ME Group) read out a list of M.E. sufferers who have died and requested a minute’s silence in their memory, which was dutifully observed.

All in all, in my own opinion? A worthwhile day in order to find out what is going on in various quarters, but throughout the proceedings I did wonder who the ‘target audience’ was supposed to be, and for whose benefit this had all been arranged. Was it a ‘box-ticking’, ‘patient consultation’ exercise? The subtitle of the event, “Hearing the patient voice”, was a bit misleading, since we were mostly being talked at, not listened to; there certainly wasn’t enough time, as I said at the beginning, for much questioning or discussion. But maybe some of what was said will pay dividends. Fingers crossed.

John Sayer, Chair
M.E. Support-Norfolk

————————-

Ed Notes:

1] Terms of Reference for the MRC’s Interdisciplinary Expert Group on M.E. have yet to be agreed (FOI Act).

2] ME agenda is unable to enter into correspondence around the Lightning Process.

Green Paper: Shaping the Future of Care Together Consultation

Update: See:

100 days to save DLA and AA from the axe (Benefits and Work Campaign)

Green Paper: Shaping the Future of Care Together Consultation

From Action for M.E.’s News Page

15 July 2009

Care consultation

The Green Paper, Shaping the Future of Care Together, has been published, launching the Government’s consultation on proposals for a National Care Service for adults in England.

Although it acknowledges that: “There are many reasons why people might need care and support, such as: accidents, long-term illnesses, being disabled, growing older” the impetus for change is the potential cost and care implications of our aging population.

Health Secretary Andy Burnham says everyone in England will be guaranteed the right support to stay independent and well for as long as possible; joined up services; information and advice; personalised care and support; that care needs will be assessed and paid for in the same way across the country.

Proposals for funding the service include: a ‘partnership’ approach which shares costs between the individual and the state, an ‘insurance’ approach which would enable people to choose to take out protection against the risk of having high care and support costs, or what is being described as a comprehensive approach, in which everyone who could afford to would be required to pay in and would get free care and support in return.

The consultation will last until 13 November 2009. For more information, go to:

http://careandsupport.direct.gov.uk

The Green Paper and Supporting Documents

http://careandsupport.direct.gov.uk/greenpaper/the-green-paper-and-supporting-documents/

How to order a copy of the Green Paper

http://careandsupport.direct.gov.uk/how-to-order-a-copy-of-the-green-paper/

Invest in ME: Statement regarding Forward-ME

The Minutes of the last meeting of the Forward-ME group (a caucus group to the APPG on ME, convened and chaired by the Countess of Mar) held on Wednesday 8 July, at the House of Lords, can be read here on ME agenda or here on the website of Forward-ME.

Invest in ME, who are members of this group, have issued a statement in connection with Forward-ME and the last meeting of the group:

Invest in ME

[Forward-ME] Meeting 8th July 2009

IiME were not able to attend the meeting of this group on 8th July 2009 in London. As for every other meeting we submitted our comments to the Countess of Mar and all other members of this group in advance.

1 Attendance at Meetings and Visibility of Comments

We would like to return to our previous email (submitted in an email on 12th December 2008) where we stated the following -

We understand that, as we were unable to attend the last meeting, any decisions made at the meeting would not include our vote.

However, we see no reference in the minutes of either of the meetings to show that our views, as submitted in documentary form prior to each of the meetings, have been discussed or included in the discussions.

We would like to see that our comments have been entered into the discussions. Will the minutes reflect this?

We never received any response from our email of 23rd March.

2 GOSH medical meeting on ME/CFS in September to be discussed and the subject of Lightning Process

In the next meeting the subject of the GOSH at a day long medical meeting on ME/CFS in September is to be discussed and the subject of Lightning Process.

Mary-Jane from AYME has written “I share your concerns about this (LP) being included in the meeting”

We find this strange and hypocritical.

AYME have advertised LP for its members and freely allow discussion without seemingly making any critical comment on the lack of a research base, the numerous cases where people have been made worse and the fact that the practitioners of LP are generally not registered healthcare practitioners and take no responsibility for the results.

To state that there are concerns seems to us to be hypocrisy.

One should also remember that AYME and AfME are not in a position to criticise GOSH for including behavioural therapies/businesses as most of their recent joint conference in Milton Keynes included known advocates of the behavioural causality for ME and also included an insurance company representative.

3 Questions for Esther Crawley CNRCC Children’s Services

We have the following questions for Esther Crawley.

In your CV it states that you published research showing “children with CFS/ME don’t go to school because they are unwell not anxious”. However, isn’t it true that you believe there is a condition termed Pervasive Refusal Syndrome (PRS)?

If the answer to i) is yes then what proof do you have of this, what research is there to prove this really exists?

If the answer to i) is yes then how many children who were diagnosed with ME have you believed to have PRS?

What medical tests do you perform on patients who are suspected of having ME/have ME?

Do you test for acute and/or reactivated infections?

From the minutes of the meeting it appears none of our points were discussed. IiME were informed by CoM [Countess of Mar] that the questions to Esther Crawley were not asked as they were not appropriate to the discussion. The minutes of that meeting are available here

Ends

——————-

Please note that ME agenda is unable to enter into correspondence around the Lightning Process.  Please direct any enquiries regarding the content of the Minutes of Forward-ME meetings to the Chair of Forward-ME.  Please direct any enquiries regarding the content of Invest in ME’s statement to Invest in ME.

Documented pathology seen in ME/CFS that contra-indicates the use of GET: Margaret Williams 23 July 2009

Documented pathology seen in ME/CFS that contra-indicates the use of Graded Exercise Therapy

by Margaret Williams

23 July 2009

This document together with previous articles and commentaries by Margaret Williams can be found at ME Action UK

http://www.meactionuk.org.uk/Documented_pathology_seen_in_ME-CFS.htm

http://www.meactionuk.org.uk/Documented_pathology_seen_in_ME-CFS.pdf

The evidence-base of pathology that has been demonstrated in ME/CFS appears within a larger document that is already in the public domain, but is now provided as a 9 page separate item for ease of access.

The UK ME/CFS community may not yet be fully aware of the content of Dr Esther Crawley’s presentation on 8th July 2009 to the Countess of Mar’s “Forward-ME” group meeting held at the House of Lords. The Minutes of that meeting and Dr Crawley’s power-point presentation are accessible at http://www.forward-me.org.uk/8th%20July%202009.htm

Of particular note are the following points made by Dr Crawley:

· The CCRNC (CFS/ME Clinical and Research Network and Collaboration, of which she is Chair) is a “multidisciplinary organisation which exists to promote and support the delivery of evidenced based treatment for children, young people and adults with CFS/ME throughout the UK” whose objective is “To champion evidence-based approaches to the treatment of CFS/ME, such as those provided in the NICE guidelines” and which will use “clinical expertise to inform healthcare policy” and will “provide training for clinicians and researchers from all disciplines involved in the diagnosis and treatment of CFS/ME”.

· The CCRNC has an “Active training programme” and has “the ability to provide national training programmes”.

· The CCRNC will “invite no more than four people drawn from National UK CFS/ME organisations which explicitly support the aims and constitution of the organisation to sit on the Executive committee as either observers or members”.

· Its research strength is that it has the “Largest cohort in the world”.

· Its strengths are “working together — 600 clinicians and researchers, MRC, NIHR (National Institute for Health Research), Welcome (sic), patient and carer reps, charity membership”.

It is particularly notable that the Minutes record that when asked by Dr Charles Shepherd “whether, in the light of the widespread opposition to the NICE Guidelines, charities that were opposed to them would be invited to become members or associates of the CCRNC executive”, Dr Crawley’s response was: “In order to join the collaborative, charities would be expected to sign up to the evidence-based approach”.

The only possible interpretation of this is that patients’ charities are welcome to participate provided that they accept the behavioural modification interventions of CBT/GET recommended in the NICE Guideline (for which Dr Crawley was a member of the Guideline Development Group).

This would seem to be something akin to medical totalitarianism, especially given that Wessely School “evidence-base” upon which the NICE Guideline is predicated has been so stringently criticised by international ME/CFS experts.

See, for example:  http://www.meactionuk.org.uk/JR_Statements_-_extracts.htm

It is worth recalling that at the Royal Society of Medicine meeting on “Medicine and me: ME and CFS” held just three days later on 11th July 2009, MRC Professor of Clinical Immunopharmacology Stephen Holgate said that at the MRC, referees tend to reinforce the status quo and that he was not sure if his wish for an MRC inter-disciplinary group involving immunologists, neurologists and infectious diseases physicians would happen, which would seem to indicate that the psychiatrists’ stranglehold on MRC funding for biomedical research into ME/CFS is set to continue.

The Forward-ME Minutes also record that Dr Crawley said: “the reputation the CFS/ME charities had for infighting was not particularly helpful and prevented research and clinical involvement”.

Given that the “infighting” may have arisen because of the polarised views about the nature of ME/CFS, with the Government-funded charities (Action for ME and The Association of Young People with ME, to the latter of which Dr Crawley is Medical Advisor) supporting the NICE Guideline that is underpinned by flawed research, whilst other charities base their stance on the international evidence that shows the NICE Guideline to be seriously misinformed, it may be timely to look again at the following “evidence-base”.

Dr. Crawley stated that only those ME/CFS charities which agree to “sign up to the evidence based approach” are to be permitted to join her “collaborative”.

Given the volume of biomedical evidence that does not support Graded Exercise Therapy it would appear that in this instance signing up to an “evidence based approach” involves signing up to an approach that ignores most of the evidence.

Science is not furthered by a self-reinforcing “collaborative” determined to exclude dissenting voices; rather, a vigorous and honest dialectic is required. Medicine has no place for cabals and the lazy thinking they foster.

The “Forward-ME” Minutes record that Lady Mar said she hoped that Dr Crawley would “agree to continue to work with Forward-ME”; one can only wonder, sadly, just how far backwards her “Forward-ME” initiative will carry the UK ME/CFS community.

Evidence-based research showing pathology that contra-indicates the use of graded exercise in ME/CFS

There is an extensive literature from 1956 to date on the significant pathology that has been repeatedly demonstrated in ME/CFS, but not in “CFS/ME” or “chronic fatigue”; this can be accessed on the ME Research UK website at

http://www.meresearch.org.uk/information/researchdbase/index.html  and also at http://www.meactionuk.org.uk/Organic_evidence_for_Gibson.htm  

According to Professor Nancy Klimas, ME/CFS can be as severe as congestive heart failure and the most important symptom of all is post-exertional relapse (presentation at the ME Research UK International Conference held in Cambridge in May 2008).

Statements of Concern about CBT and GET provided for JR: Margaret Williams 22 July 2009

Statements of Concern about Cognitive Behavioural Therapy and Graded Exercise Therapy provided for the High Court Judicial Review of February 2009

by Margaret Williams

22 July 2009

This document together with previous articles and commentaries by Margaret Williams can be found at ME Action UK

http://www.meactionuk.org.uk/JR_Statements_-_extracts.htm

http://www.meactionuk.org.uk/JR_Statements_-_extracts.pdf

Over twenty renowned ME/CFS experts provided Statements in support of the Judicial Review of the NICE Guideline on “CFS/ME” heard in February 2009 in the High Court in London. They were specifically written in support of the challenge to the NICE Clinical Guideline on “CFS/ME” and they express concern about the recommendation by NICE that the only management of ME/CFS should be CBT and GET (the same interventions that are the subjects of the Medical Research Council’s PACE Trial).

None of the Statements was accorded the recognition that they merit.

Extracts from those Statements (some of which were of considerable length) are now being placed in the public domain in the interests of ME/CFS sufferers and those who support and care for them.

· “In my view, the Guideline is biased and over rigid in its recommendations and will put a large number of ME sufferers at risk of harm through its strong recommendations for the use of CBT and GET. CBT is based on the idea that somatoform disorders are maintained by abnormal or unhelpful illness beliefs which lead to abnormal or unhelpful behaviour. The first requirement for a somatoform diagnosis is that there be no physical cause for the symptoms. This is not the case in ME/CFS” (Malcolm Hooper, Professor Emeritus of Medicinal Chemistry, University of Sunderland, November 2007)

· “Two forms of treatment…are CBT and GET. CBT is a psychological treatment. Its application in what is certainly an organic disorder is basically irrational. Its putative mode of action is based on the proposition that patients with ME/CFS feel unwell because they have an ‘abnormal illness belief’, and that this can be changed with CBT. It has never been proven to be helpful in the majority of patients with ME/CFS. GET comprises a regime of graded exercise, increasing incrementally over time. It has been almost universally condemned by most patient groups. A number of patient surveys have shown it to be, at best, unhelpful, and at worst, very damaging. Its application is counter-intuitive, particularly when one of the most debilitating and well recognised symptoms of ME/CFS is post-exertional malaise which can put some patients in bed for days after relatively trivial exertion” (Dr William Weir, Consultant Physician, November 2007)

· “The GDG has placed undue reliance upon a small number of RCTs that were methodologically flawed because they did not adequately define the patient population” (Dr Terry Mitchell, formerly Consultant Clinical Lead (CNCC) of the Norfolk, Suffolk & Cambridgeshire NHS ME/CFS Service, 23rd June 2008)

· “The predominance of psychologists / psychiatrists on the GDG is entirely inappropriate and has led to a biased analysis in my opinion. The GDG has placed undue emphasis on a few UK clinical trials which support the use of psychological treatments, however, these studies did not properly or adequately define their patient population” (Dr Jonathan Kerr, Hon. Consultant in Microbiology; Consultant Senior Lecturer in Inflammation; Principal Investigator of the CFS Group, St George’s University of London, 11th August 2008)

· “You will see from my attached treatise that I consider that the recommendation of CBT and GET as blanket treatments of ‘clinically excellent’ first choice is extremely dangerous to patients. I am concerned that NICE claims that an adequate evidence base supports CBT/GET, when in fact the Guideline Development Group (GDG) relied almost exclusively on a handful of extremely controversial RCTs (random controlled trials). I have no doubt that patients in the research quoted by the GDG did not have ME/CFS” (Dr Irving Spurr, Newcastle ME Research Group; 12th August 2008)

· “My overall impression reading the Guidelines for the first time was one of alarm. I will limit my comments to the deficiency which has the greatest potential for harm to patients. The NICE Guidelines do not make any reference to the biomedical literature on ME/CFS. A physician who is new to the field and who has not had time to read the thousands of paper reporting measurable abnormalities in ME/CFS may get the impression that: (1) Biomedical issues are irrelevant in ME/CFS and that (2) CBT and GET actually make the core symptoms of people with ME/CFS better. A close read of the literature reveals that none of the core symptoms of ME/CFS improve with CBT or GET. The recommendation for GET stems from the often quoted but unproven assumption that deconditioning causes or exacerbates ME/CFS. In fact this assumption has been disproven (Bazelmans et al 2001; Harvey et al 2008) and cannot therefore be used as a basis for treatment. Informed consent is an ethical requisite in the practice of medicine. Informed consent requires that patients embarking on any therapy be told the potential benefits and risks of the therapy being recommended. Meeting this legal standard in ME/CFS requires that patients be told about the potential benefits and risks of CBT/GET. If patients are being coerced to believe what is not true, psychological trauma can result. If patients are pushed to increase activity beyond their capabilities, exacerbation of symptoms can be expected. The NICE Guidelines are biased towards a particular model of CBT/GET that is widely viewed as ineffective and potentially unethical” (Dr Eleanor Stein, Consultant Psychiatrist, Calgary, Alberta, Canada, 12th August 2008)

· “(Graded exercise therapy) is not therapy – it is simply the enforcement of an opinion rather than a treatment based upon any scientific examination of a patient’s pathology and treatment of that pathology. I believe that those who developed (the) graded exercise programme as a valid treatment of ME have already been soundly criticised to the Courts. I also believe scientific evidence that such a programme is against the best interests of ME patients has already been presented. The benefit of such a programme is to the interests of the insurance industry and not the patient. Graded exercise programmes may be significantly dangerous to many of these ME patients” (Dr Byron Hyde, Clinician specialising in ME, having examined over 3,000 patients between 1984 – 2008; Ottawa, Canada; 15th August 2008)

· “(The GDG) produced a Guideline that recommends CBT and GET as the prime treatment yet there is in fact published evidence of contraindication / potential harm with GET. This has been published by independent researchers (e.g. Peckerman et al). The NICE GDG claims that CBT/GET are supported by significant research. In fact the GDG relied almost exclusively on specious reports which are unproven” (Dr Derek Enlander, Virologist specialising in ME/CFS; formerly Assistant Professor at Columbia University and Associate Director of Nuclear Medicine at New York University; Physician-in-Waiting to the UK Royal Family and to members of HM Government when they visit New York; 18th August 2008)

· “I regard the continuing aura of disbelief surrounding the illness and mainly emanating from the psychiatrists as detrimental to both medical progress and the interests of sufferers” (Dr Nigel Speight, Consultant Paediatrician specialising in ME/CFS; 20th August 2008)

· “It is with regret that I note that the NICE Guidelines do not take into account recent developments in the management of ME. They lean towards a psychological and psychiatric basis, when it is now recognised that there are a large number of medical problems associated with ME. Recent studies on genetics, the central nervous system, muscle function and persistent infections have shown that there is a great deal of medical information available with regard to the management of ME” (Dr Terry Daymond, Consultant Rheumatologist and recently Clinical Champion for ME for the North-East; 22nd August 2008)

· “Research from the ‘organic school’ identified many pathophysiological abnormalities in patients with ME/CFS resulting from dysfunction in a number of vital control systems of the body such as the central nervous system, the autonomic nervous system, the endocrinological system and the immune system. The attitude of the ‘psycho-social’ school continues to be to largely ignore this research. It seems they can only maintain their hypothesis by discouraging the search for an organic basis and by denying the published evidence, which they are certainly doing. This unseemly battle of ideas has been settled politically by proclamation and manipulation, not by science, and not by fair and open means. CBT and GET appear to be based on the rationale that patients with CFS/ME have ‘faulty’ belief systems concerning the ‘dangers’ of activity, and that these aberrant beliefs are significant perpetuating factors. If CBT to ‘correct’ these ‘false’ beliefs can be combined with a graded exercise programme to re-condition these patients, it is virtually promised that a significant proportion of them will improve both their attitude and their physical functioning, and thus cure their illness. Using CBT, patients are therefore to be challenged regarding their ‘aberrant’ thoughts and expectations of relapse that the ‘psycho-social school’ psychiatrists believe affect symptom improvement and outcomes. Cognitions concerning fatigue-related conditions are to be addressed; these include any alleged ‘over-vigilance to symptoms’ and reassurance-seeking behaviours, and are to be dealt with using re-focusing and distraction techniques. It is when a therapy such as CBT begins to interfere with the natural warning systems, of which both pain and fatigue are a part, that the increased risks arise. In particular, musculo-skeletal pain and fatigue have essential function in modulating activity when the body is in a state of disease as in ME/CFS. NICE, however, recommends over-riding this essential safety-net, thus the risk of serious harm is increased in this situation of simultaneous activity and symptoms denial. This will become a more serious risk in patients with more severe ME/CFS. The Guideline does not indicate how the clinician can tell whether patients’ beliefs concerning their symptoms are aberrant and/or when the symptoms accurately point to the underlying state of the disease process” (Dr Bruce Carruthers, Consultant Physician, Vancouver, Canada, 29th August 2008)

· “There have been only five trials of CBT with a validity score greater than 10, one of which was negative for the intervention; and only three RCTs of GET with a validity score greater than 10. The total number of available trials is small; patient numbers are relatively low; no trial contains a ‘control’ intervention adequate to determine specific efficacy, and their results are relatively modest. In addition, some of the studies (particularly those on GET) have used the Oxford criteria for diagnosis, a rubric which allows selection of patients with chronic fatigue states and which do not necessarily exclude certain psychiatric disorders, raising the question of the applicability of the results of these studies to the many patients with specific biomedical symptoms and signs consistent with myalgic encephalomyelitis. Again, the heterogeneity of the trials, the potential effect of publication or funding bias for which there is some evidence, and professional doubts about the evidence base for some behavioural therapies themselves give grounds for caution as regards the usefulness of (CBT/GET). A commentary in the BMJ (Bolsover 2002) is particularly relevant: ‘Until the limitations of the evidence base for CBT are recognised, there is a risk that psychological treatments in the NHS will be guided by research that is not relevant to actual clinical practice and is less robust than is claimed’. Indeed, a large body of both professional and lay opinion considers that these essentially adjunctive techniques have little more to offer than good medical care alone” (Dr Neil Abbot, Director of Operations, ME Research UK; Hon Research Fellow, Department of Medicine, University of Dundee, 29th August 2008)

· “The overall flavour of the Guideline is to lump together all patients with ‘medically unexplained fatigue’, from relatively mild to profoundly disabling illness and to treat all patients with a standard approach of gradual reconditioning and cognitive behavioural modification. By lumping such a heterogeneous mix of patients…patients with CFS or ME are left with very limited options, and little hope. In addition, this document proscribes immunological and other biologic testing on patients with (ME)CFS in the UK, despite the evidence in the world’s medical literature that such testing produces most of the biomedical evidence of serious pathology in these patients. Equally unfortunate is the GDG’s recommendation for behavioural modification as the single management approach for all ‘medically unexplained fatigue’. This month we participated in the International Conference on Fatigue Science in Okinawa, Japan. Dr Peter White of the UK presented his work using behavioural modification and graded exercise. He reported a recovery rate of about 25%, a figure much higher than seen in US studies in (ME)CFS and, even if possible, simply not hopeful enough to the 75% who fail to recover” (Professors Nancy Klimas and Mary Ann Fletcher, University of Miami; 13th September 2008)

· Attached as an appendix to their Statement was a separate Summary of Current State of Understanding of (ME)CFS), from which the following quotations are taken: “Many of the symptoms of (ME)CFS are inflammatory in nature. There is a considerable literature describing immune activation in (ME)CFS. Overall the evidence has led workers in the field to appreciate that immunologic abnormalities are a characteristic of at least a subset of (ME)CFS and that the pathogenesis is likely to include an immunologic component. Fulcher and White (2000) suggest a role for deconditioning in the development of autonomic dysfunction and overall level of disability in (ME)CFS patients. On the other hand, Friedberg et al (2000) suggest the long duration (ME)CFS subjects are more likely to have symptoms suggestive of chronic immune activation and inflammation. We are currently working with investigators at the Centres for Disease Control and the University of Alberta looking at the mediators of relapse after exercise challenge using gene expression studies, neuroendocrine, immune and autonomic measures”

· “My main concern about the NICE document is that what must be great uncertainty in both costs and particularly in quality of life difference is not allowed for” (Martin Bland, Professor of Health Statistics, University of York, 17th September 2008)

· “The guideline is dominated by positive and largely uncritical recommendations for CBT and GET. However, the guideline plays down the fact that patient experience has consistently reported that significant numbers of people with ME/CFS find these approaches to be either unhelpful or, in the case of GET, makes their condition worse. Some of the hospital-based services are not being physician-led but ‘therapist-led’. In some cases people are now being given little more than a ‘therapist-led’ management assessment followed by an offer of CBT and/or GET. I received some very unhappy patient feedback on this type of service on Saturday 11th October (2008) in Colchester, Essex, where great dissatisfaction was expressed by many members of the audience who attended the ME Association’s ‘Question Time’ meeting” (Dr Charles Shepherd, Medical Adviser, ME Association, 24th October 2008)

· “I am a consultant immunopathologist and before retirement worked at St James’ University Hospital, Leeds. A key area of my professional interest was and remains myalgic encephalomyelitis and I have carried out research into the disorder. For a number of years I ran clinics specifically for patients with ME. In my opinion NICE guidelines overemphasise the usefulness of CBT and GET to the detriment of patients. I have no hesitation in stating that in my opinion, the situation for ME/CFS patients is worse, not better, since the publication of the NICE Guideline” (Dr Layinka Swinburne, Leeds, 22nd October 2008)

· “As my clinical freedoms were progressively eroded, it meant that I was becoming ineffective and indeed possibly dangerous as a practitioner. All that patients could be offered was CBT coupled with GET, which I consider not to be appropriate for many of my patients and in the case of GET potentially damaging for some” (Dr Sarah Myhill, General Practitioner specialising in ME/CFS, Powys; Secretary of the British Society for Ecological Medicine, 10th November 2008).

Round up of Scottish ME and CFS issues

Round up of Scottish ME and CFS  issues:

http://www.festivalofpolitics.org.uk/2009day3.htm 

Past Present & Future – The Developing Role of the Cross Party Group on ME In Engaging with Health Service Provision

Thursday 20 August 2009

14.30 (15.30) Committee Room 3 FREE*

What have been the experiences of the Cross Party Group on ME since its inception, and how have the strategies it has adopted related to policies for health service delivery? One of a number of Cross Party Groups addressing health issues, the Cross Party Group on ME has often faced difficulty in achieving its aim of representing the needs of people with ME to decision makers. Are these circumstances unusual, or do they signify a limit to the effectiveness of Cross Party Groups which may have implications in the future?
In association with the Cross Party Group on ME.

To Book Past Present & Future – The Developing Role of the Cross Party Group on ME In Engaging with Health Service Provision online go to: http://www.hubtickets.co.uk/auto_choose_ga.asp?area=1186

————————-

http://www.afme.org.uk/news.asp?newsid=371

Cross Party Group
11 September 2008

The next meeting of the Cross Party Group on M.E. will take place in the Scottish Parliament on Wednesday 17 September at 1pm in Committee Room 3.

The meeting will incorporate the AGM and election of office bearers and include updates on the Scottish Good Practice Statement for GPs and the Scottish Needs Assessment.

The agenda will also include items on Welfare Benefits, the Welfare Reform Green Paper and Telemedicine.

Anyone wishing to attend who is not an MSP will require a pass should in the first instance contact Patricia Chambers, tel: 01355 806223 or e-mail: Patricia.Chambers@scottish.parliament.uk  

————————-

The Scottish Government published its national action plan “Improving Health and Wellbeing of People with Long Term Conditions in Scotland” on 16 June 2009

Site: http://www.sehd.scot.nhs.uk/details.asp?PublicationID=2980

PDF: http://www.sehd.scot.nhs.uk/mels/CEL2009_23.pdf

————————–

Action for M.E. News Launch of new Scottish GP guide
15 May 2009

http://www.afme.org.uk/news.asp?newsid=544

Two healthcare initiatives for people with M.E. were press launched in the Scottish Parliament yesterday, 14 May 2009.

The first was a Scottish Good Practice Statement for GPs on the diagnosis and management of ME-CFS and the other, a national consultation on a Needs Assessment of healthcare services for people living with the illness.

Both initiatives are supported by the Scottish Government Health Directorates.

The Good Practice Statement for GPs has been produced by Dr Purdie, NHS Dumfries & Galloway, with administrative support from Action for M.E.

The needs assessment has been undertaken by the Scottish Public Health Network, which commissioned Action for M.E. to organise focus groups to help inform its thinking in the early stages.

The launch was hosted by Andy Kerr MSP, Convenor of the Cross Party Group on M.E. and attended by the Presiding Officer of the Scottish Parliament, Alex Fergusson MSP, together with Kenny MacAskill MSP, Elaine Murray MSP and Robin Harper MSP, representatives from NHS 24, Health Boards, Action for M.E., the ME Association, local M.E. support groups, people with M.E. and their carers.

Andy Kerr MSP welcomed the launch of both documents and thanked everyone who contributed, before welcoming the speakers: Will Scott, Head of the Long Term Conditions arm of the Scottish Government Health Directorates, Dr Purdie, as lead author on the Good Practice Statement and Phil Mackie, Scottish Public Health Network (ScotPHN), as lead author on the Needs Assessment.

The Good Practice Statement has benefited from substantial input from people with M.E. The proof copy produced for the launch will now be finalised for distribution to GPs and other healthcare professionals and it will shortly be made available online and in hard copy to people with M.E. and others.

The guide will also be the subject of a one-day training conference for GPs and other medical professionals and academics on Wednesday 9 September.

The report of the ScotPHN Needs Assessment is now available for comment as part of a national consultation taking place 14 May–1 September.

In a press release issued before the launch, Public Health Minister Shona Robison said:

“Both the Good Practice Statement for GPs and the needs assessment consultation are very important pieces of work. I welcome the contribution they will make to the care of people with ME and CFS here in Scotland – both conditions that are debilitating and distressing for those who live with them day by day.

“A great deal of work has been undertaken by many people to produce these, and both show great sensitivity towards the needs of people with M.E. Together, these two initiatives will help professionals support and manage M.E. and CFS and ultimately improve care.”

Ends

and

ME Association:

http://www.meassociation.org.uk/content/view/866/161/  

ME/CFS good practice guide launched for Scotland

A Scottish Good Practice Guide for GPs on the diagnosis and management of ME/CFS was launched at the Scottish Parliament on Thursday (May 14).

Andy Kerr MSP, convenor of the Cross Party Group on ME in the Scottish Parliament, welcomed visitors to the press launch – which also included the start of a national consultation on the first-ever needs assessment of healthcare services for people living with the illness.

In a press statement to coincide with the event, public health minister Shona Robison said:

“Both the Good Practice Statement for GPs and the needs assessment consultation are very important pieces of work. I welcome the contribution they will make to the care of people with ME and CFS here in Scotland – both conditions that are debilitating and distressing for those who live with them day by day.

“A great deal of work has been undertaken by many people to produce these, and both show great sensitivity towards the needs of people with M.E. Together, these two initiatives will help professionals support and manage ME and CFS and ultimately improve care.”

The Good Practice Guide has been produced by Dr Gregor Purdie, from Castle Douglas, Dumfries. It will be the subject of a one-day training conference for GPs and other healthcare professionals on Wednesday, September 9.

The needs assessment has been undertaken by the Scottish Public Health Network. Their report is available for comment as part of a national consultation taking place 14 May–1 September.

The needs assessment report and comments template will be available from 14 May at their website here:

http://www.healthscotland.com/resources/networks/scotphn/projects/CFSME.aspx

Andy Kerr said:

“ME/CFS affects over 20,000 people in Scotland but there has been a lack of information about the illness, how it should be diagnosed and what treatments and services are available.

“These two documents will go some way towards informing those in the medical profession and in our National Health Service on issues related to ME and thereby improving the treatment and care of people with ME.

“They represent the first steps in developing a coherent, consistent service throughout Scotland.”

Ends

————————–

Health Care Needs Assessment of Services for People with ME-CFS

Final comments to be received by 1 September 2009. Further details on the site.
Finalisation of report – September 2009

Overview:

http://www.healthscotland.com/resources/networks/scotphn/projects/CFSME.aspx

Report:

http://www.healthscotland.com/documents/3402.aspx

Appendices:

http://www.healthscotland.com/documents/3403.aspx

HCNA – ME-CFS – Scrutiny 1 Patient scrutiny panel comments:

http://www.healthscotland.com/documents/3492.aspx

GOSH gives platform to Lightning Process

GOSH gives platform to Lightning Process

Shortlink: http://wp.me/p5foE-1Ok

(Correction: An earlier version of this post had erroneously associated Ms Anna Gregorowski with the PRIME Project – apologies to Ms Gregorowski for this misattribution. )

In the previous posting Forward-ME: Minutes of meeting 8 July 2009 Dr Charles Shepherd (ME Association) is reported as having raised concerns in relation to a forthcoming event at University College London in conjunction with Great Ormand Street Hospital (GOSH) at which Phil Parker of the Lightning Process is scheduled to give a presentation.  Also presenting is Prof Peter White (BARTs, co-PI for the PACE Trial). 

See:  Forward-ME: Minutes of meeting 8 July 2009  Minute item 5. Lightning Process

The event to which this item refers is:

University College London in conjunction with Great Ormond Street Hospital

http://www.ich.ucl.ac.uk/education/short_courses/courses/2S-88

From Assessment to Recovery: Holistic Approaches to Working with Young People with CFS/ME

This annual one day event will provide you with skills and knowledge on how to manage Chronic Fatigue Syndrome (CFSME) when working with children and young people.

The holistic theme is throughout the day from diagnosis to treatment. You will learn about motivational interviewing and have an introduction to the Lightning Process. You will hear from young people accessing support at GOSH and be able to ask them questions.

There will be two interactive workshops: Dietary management and Interdisciplinary skills for treatment. There will be a mini-lecture focussed on Medical management.

Date: 30 September 2009

Why you should attend

The day will provide

- Interdisciplinary assessment and treatment ideas

- opportunity for networking

- interactive workshops

- informative presentations

Who should attend?

Clinicians and health professionals who work with young people and /or have a special interest in CFSME

Programme

Please note that this is a draft programme and is likely to change before the event. Please continue to check the website for updates.

08.45 – 09.15 REGISTRATION & REFRESHMENTS

09.15 – 09.45 Keynote address Ms Anna Gregorowski

09.45 – 10.30 The importance of diagnosis & the power of labeling for patients with chronic, unexplained, disabling fatigue Professor Peter White

10.30 – 11.15 Helping kids get ready, willing & able to make changes: motivational interviewing in chronic illness Dr Deborah Christie

11.15 – 11.30 REFRESHMENTS

11.30 – 12.30 Video diaries Patient/parents

12.30 – 13.00 Outpatient Rehabilitation Programme at GOSH Dr Anna Hutchinson & Monica Samuel

13.00 – 13.45 LUNCH

13.45 – 14.00 Networking options

14.00 – 15.15 Workshops/Mini lectures (each delegate selects 1 workshop/mini lecture to attend)

1. Dietary management of CFS/ME Judith Harding

2. Clinical investigation…to test or not to test Dr Vic Larcher, Dr Jo Begent & Dr Terry Segal

3. Basic skills of treatment & management of CFSME, including relapse prevention Dr Anna Hutchinson & Monica Samuel

15.15 – 15.30 REFRESHMENTS

15.30 – 16.15 Introduction to Lightning Process Phil Parker

16.15 CLOSE

DISCLAIMER

The GOSH Chronic Fatigue Syndrome/ME (CFSME) service is committed to sharing expertise & knowledge related to CFSME & young people. We do not endorse or recommend treatment & management other then that recommended by NICE (www.nice.org.uk) & RCPCH guidelines (www.rcpch.ac.uk).

Speakers

Course Directors:

Dr Anna Hutchinson, Senior Clinical Psychologist

Monica Samuel, Senior Physiotherapist

——————–

Please refer to UCL site for meeting registration details

Forward-ME: Minutes of meeting 8 July 2009

Would Dr Esther Crawley like to provide evidence to support this statement?

“Dr Crawley explained that the reputation the CFS/ME charities had for infighting was not particularly helpful and prevented research and clinical involvement.”

In February, this year, Dr Crawley, who had been a member of the NICE Guideline Development Group, was awarded £730,000 for research into “CFS/ME” and “Fatigue” in children:

http://www.bristol.ac.uk/ccah/news/2008/12.htmldresthercrawley

 

The Minutes of the last meeting of the Forward-ME group, held on Wednesday 8 July at the House of Lords, have now been posted on the group’s website:

This is a caucus group to the APPG on ME convened by the Countess of Mar, last October. Membership of the group is by invitation only; members of the public are not permitted to attend either as participants or observers.

The 25% ME Group had been a member of Forward-ME but has since withdrawn all involvement with the group. 

—————————-

http://www.forward-me.org.uk/8th%20July%202009.htm

FORWARD-ME

Minutes of the meeting held on Wednesday 8 July 2009 at the House of Lords

1. Present: Christine Harrison – BRAME

Bill and Janice Kent – ReMEmber

Jane Colby – TYMES Trust

Peter Spencer – AfME

Charles Shepherd – MEA

Mary-Jane Willows – AYME

Margaret Mar – Chairman

 

2. Apologies: Tanya Harrison – BRAME

Sue Waddle – MERUK

Kathleen McCall – Invest in ME

 

3. Minutes of the Meeting held on 21 April 2009:

The minutes of the meeting were agreed and signed by the Chairman.

4. Dr Esther Crawley, FRCPCH; PhD, Senior Lecturer at the University of  Bristol and a Consultant Paediatrician, Chair of the CFS/ME Clinical  Research Network Collaborative (CCRNC)

and

Dr Hazel O’Dowd, MSc, D Clin Psych, Consultant Clinical Psychologist, Clinical Champion for CFS/ME services for Avon, Gloucester, Wiltshire and Somerset:

The Chairman introduced Dr Crawley and Dr O’Dowd and thanked them for coming to address the Group.

Dr Crawley gave a PowerPoint presentation a copy of which she kindly agreed to send to us after the meeting (see Presentations )

http://www.forward-me.org.uk/Presentations.htm 

Click the link to open/save the file depending on your browser

CFS/ME Clinical and Research Network and Collaboration by Esther Crawley – PowerPoint Show file

http://www.forward-me.org.uk/Presentations/forwardME_no_photos.pps  (Ed: MS PowerPoint or compatible reader required)

She explained that there were historical issues that had resulted in mistakes being made over patient participation. She had fought for patient/carer involvement and, by the time of the next CCRNC executive there will be 8 patient/carer representatives (4 from charities) on the Executive committee.

The National Outcomes Dataset (NOD) is an essential tool for providing evidence for further research into causation and treatments.

There are many strengths upon which the CCRNC intends to build. Openness and their recognition of the importance of working together has already attracted MRC, NIHR and Welcome support. The list of current research studies currently being carried out by members of the CCRNC was extensive and covered many medical specialisms.

Provision of services was a serious weakness, especially where children were concerned. Most children did not even get a diagnosis; there was no domiciliary provision for them as, indeed, there was not for most adults who are seriously affected. There was, historically, a lack of patient involvement.

Opportunities for progress were opening up with the ability to do large-scale research on cohorts of 3,000 patients. There was no other comparable large scale cohort in the world.

An open approach which looked at both good and bad results was essential if improvements in care, data collection and sharing, and the ability to apply political pressure were to be achieved.

Dr Crawley explained that the reputation the CFS/ME charities had for infighting was not particularly helpful and prevented research and clinical involvement.

The meeting was opened to questions. Janice Kent asked whether the Genome Wide Association Studies were linked to the genetic research conducted by DR Jonathan Kerr. Dr Crawley explained that his work involved gene expression – how the genes function. This generated hypotheses for further investigations. The results could be altered by effects secondary to the illness – by alcohol, drugs or exercise, for example. Genome-wide association studies involved scanning the DNA of a large cohort of patients to find common genetic variations associated with illnesses which would enable researchers to detect, treat and prevent diseases.

Charles Shepherd asked whether, in the light of the widespread opposition to the NICE Guidelines, charities that were opposed to them would be invited to become members or associates of the CCRNC executive. Dr Crawley acknowledged that, whilst the NICE Guidelines were flawed, they were a start. There was a need for all to work together to produce evidence to effect a change in the guidelines. In order to join the collaborative, charities would be expected to sign up to the evidence based approach. It would be a matter for discussion.

Janice Kent asked about charities and groups that had been excluded from formal representations to the specialist clinics when they were being set up. She explained that they had a wealth of information and experience. Dr Crawley said that the CCRNC want to work with everyone concerned and ask Janice to write to her with the detail.

Christine Harrison asked about coverage by the CCRNC. She explained that the east of England had no specialist services at all. Dr Crawley agreed that provision for most areas was thin. The original budget had been for about £100,000 for each clinical team. To be assessed as cost effective, this would treat 100 patients. Some regions were dealing with 300 patients on this budget. There was a very real need for effective local services.

Christine asked about the grading of patient evidence as NICE had given the very large amount of evidence it received the lowest grading. Dr Crawley acknowledged that the method for grading was imperfect. Patient experience was valuable and should inform high quality research, opening the door to further research.

Jane Colby asked about the rationale of treatments offered for different aetiologies of CFS/ME. Dr Crawley explained that with an illness like CFS/ME which is a heterogeneous disorder there were differences between what was observed clinically and what was shown biologically. She cited schizophrenia and bipolar disorder, which were thought to be separate illnesses but are the same on genome wide association studies. There was a need for caution as not enough was known. In her clinics, patients were offered a variety of options which were individualised. If they made a wrong choice another option would be sought. There is currently no evidence of what will work for different subgroups. Jane asked about return to school. Dr Crawley said that she listened to her patients and helped them to achieve what they thought they could do, whether it was to improve their athletic performance, socialising or education, for example.

Peter Spencer commented on several of the points raised including analysis of data, measurements of effectiveness, benchmarking and people wanting to work with and learn from each other. There was a need to concentrate research resources. Greater patient involvement was key. There was no obligation on PCT’s to take the severely affected into account. The severely affected were particularly neglected; they had no voice and it was not surprising that they were particularly frustrated.

Charles Shepherd commented on the fact that those with the greatest need were given the lowest priority. Dr Crawley suggested a solution would be for them to use the NICE Guidelines which state that the severely affected have the right to have an immediate domiciliary visit and access to all services. If there were no specialists in their area they should ask for an out of area referral. These were costly and, if used enough, local services would be provided on cost grounds. It was not good practice to expect severely affected children and adults to travel long distances for consultations or for physicians to travel to make domiciliary visits. The situation was gradually improving, but effective outcomes were still a drop in the ocean compared with the unfulfilled need.

Dr O’Dowd spoke about training, for which she is responsible within the CCRNC. She accepted that it was not perfect. In 2003 she had to establish training for the first wave of teams with national training for the new clinicians. The DoH mandate was to improve diagnosis by GP’s. This was improving very slowly. Initially, when they set up training courses, only a few interested GP’s attended. It was difficult to attract those who were sceptical about CFS/ME. They then attached training to the end of other events that were more attractive to GPs. There were also local GP training schemes happening in a piecemeal way. They wanted to get CFS/ME on the core curriculum for medical, physiotherapy and occupational therapy training. This was difficult, but there were some successes. She acknowledged that there were regional variations. In some places there was a high staff turnover for specialist services. They were developing the workshops. Additionally, over the next 2 years they hoped to develop an on-line training package that would be easily accessible. Working with the CCRNC had been beneficial as the trainers could have access to a large body of training material from the regions which cut down their workload.

Speaking personally, she said that there was much less scepticism about CFS/ME amongst the people she worked with. She had seen a marked change in her day to day dealings with doctors and other health care professionals. She felt that it was essential that the GP, district nurse and other members of the primary care team should always be involved in home visits. The most successful encounters were those that occurred on a one-to-one basis.

Margaret Mar asked how Dr O’Dowd would address the charge of a lack of balance between the psychological and the biomedical models of the illness at the April meeting of the CCRNC. She said that, after her experience of working with patients with other chronic conditions such as cancer and arthritis, she had been surprised to find that this was an issue with CFS/ME. She had not had any personal problems with it – in fact she found that sufferers have broader minds that many with other illnesses, possibly because they had been so neglected and forced to fend for themselves. The April conference had been full of variety, with lots of biology, but she accepted that they did not get it right. There was a problem in that many invited speakers, whose contributions were valuable, would not attend or would not agree to their papers being made public because they were wary of criticism.

Charles Shepherd asked whether the CCRNC had a view about causation, particularly the roll of deconditioning and abnormal illness behaviour. Dr O’Dowd said there was no overall view as there was no defined causation and the processes were not yet understood. This should not stop people being helpful. Patients understood well what affected them and any fitness programmes were developed jointly with the patient. Very few could be described as deconditioned.

Mary-Jane Willows commented that there was ‘no one voice’. If everyone did the same there would be no learning. Models of service were one of the factors in terms of outcomes.

Janice Kent asked about adverse effects from participation in the PACE trial. She described what had happened to a particular patient from her group, she was advised to obtain the patient’s permission and to feed back to the PACE triallists. It was essential that they were aware of bad results as well as good ones. Dr Crawley pointed out that all treatments have some side effects and that it was important to find those that worked for individual patients.

Christine Harrison asked whether CCRNC had a website. She commented on the lack of any services in East Anglia and asked whether they used patients in their training sessions. She also asked whether CFS/ME should be included in neurology training. There was no dedicated CCRNC website. As CFS/ME was bigger than just neurology, it was not thought appropriate to confine it to ‘one box’. The lack of GP services meant no home visits. As a result, there was an unknown number of patients who had fallen off the radar of NHS care. Unfortunately, there were not enough resources to cover every contingency and it was impossible to train GPs who do not want to listen.

Peter Spencer echoed the need for training and commented on the variations in awareness of CFS/ME. *He understood that Dr Miller of Liverpool University had developed a training module on CFS/ME for the Royal College of physicians. The workshops at the April conference had involved professional workshops and good interaction. Assumptions about the agenda for the conference were, unfortunately, based on assumptions about where speakers came from rather than facts based on what they actually said. AfME was associated with PACE and had been pleased by the very low drop-out rates. He agreed that adverse effects should be reported. There was a need to reconcile evidence of NHS providers with patient surveys on outcomes and to question the differences. In so far as GET was concerned, there was a need to look at the detailed evidence with clinicians. For example, he asked whether it was proper GET. Were randomised control trials appropriate for long-term, chronic conditions such as CFS/ME? He agreed that evidence based principles were essential.

Charles Shepherd asked whether there were exclusion criteria as he had a case where a patient had been excluded on grounds of obesity. Dr Crawley said there was no central policy. She screened her patients because there were other causes of fatigue and she had found one child with undiagnosed leukaemia. She could not judge decisions made by other clinicians.

5. **Lightning Process:

Charles Shepherd had been made aware of a meeting which was to take place at University College London in conjunction with Great Ormond Street Hospital which appeared to promote the Lightning Process for patients with CFS/ME. As Dr Crawley knew something about the subject, she was asked to remain and to contribute to the discussion. Of particular concern was the promotion of the programme to vulnerable clinicians who had just started to practice. After some discussion about the pros and cons of the programme, it was agreed that Mary-Jane Willows would talk to the organisers on behalf of Forward-ME highlighting our concerns.

6. APPG Inquiry:

As this had been discussed at the APPG meeting that took place immediately before the Forward-ME meeting, it was agreed that there was not much more to be said, though there were concerns about delays and the incomplete coverage of prospective witnesses with questionnaires.

7. MRC Project:

***Charles Shepherd reported that the latest information was in the MEA magazine and on their website.

8. Any Other Business:

Margaret Mar reported that she had had an interesting meeting with Dr Wendy Ewart, Director of Strategy for the MRC. She was interested to work with us and to meet the CCRNC team.

Following a letter from InvestinME [sic] in which the difficulties of working with charities and groups who were not of the same mind on particular matters, Margaret Mar had written to them asking whether they wished to continue with their membership of Forward-ME. This would be discussed further at the next meeting.

There being no further business, Margaret Mar thanked Dr Crawley and Dr O’Dowd for their very full presentations and for their candid responses to our questions. She hoped that they would both agree to continue to work with Forward-ME.

9 Date of Next Meeting:

To be advised.

——————-

*Dr Alistair Miller was a presenter at the Royal Society of Medicine “Chronic Fatigue Syndrome” Conference on 28 April 2008:

Download Abstracts and Biographies [PDF 86k]
http://www.rsm.ac.uk/chronicfatigue08/abs.pdf

What drugs can I use? [PDF 243k]
Dr Alastair Miller, Royal Liverpool University Hospital
http://www.rsm.ac.uk/chronicfatigue08/moss_miller.pdf

What drugs can I use? Dr Alastair Miller
http://rsm.mediaondemand.net/player.aspx?EventID=1337

**Please note that ME agenda is unable to enter into correspondence around the Lightning Process.  Please direct any enquiries regarding the content of these Minutes to the Chair of Forward-ME.

***Refers to the MRC CFS/ME multi-disciplinary panel chaired by Prof Stephen Holgate.  Although the group has held several meetings, the group’s Terms of Reference have yet to be agreed and published (FOI Act).

The Elephant in the Room Series Three: ICD-11 Topic Advisory Group for Neurology

Image | belgianchocolate | Creative Commons

Keywords

APA    DSM    DSM-IV    DSM-V    WHO    ICD    ICD-10    ICD-11    American Psychiatric Association    Diagnostic and Statistical Manual of Mental Disorders    World Health Organization    Classifications    DSM Revision Process    DSM-V Task Force    DSM-V Somatic Distress Disorders Work Group    Somatic Symptom Disorders Work Group    DSM-ICD Harmonization Coordination Group    International Advisory Group    Revision of ICD Mental and Behavioural Disorders    Global Scientific Partnership Coordination Group    ICD Update and Revision Platform    WHO Collaborating Centre    CISSD Project    MUPSS Project    Somatoform    Somatisation    Somatization    Functional Somatic Syndromes    FSS    MUS    Myalgic encephalomyelitis    ME    Chronic fatigue syndrome    CFS    Fibromyalgia    FM    IBS    CS    CI    GWS

The Elephant in the Room Series Three:

ICD Topic Advisory Group for Neurology and June 2009 ICD Revision Process Presentation slides

Not all Topic Advisory Groups (TAGs) working on the development of ICD-11 are listed on the ICD Update and Revision Platform. Evidently, some additional TAGs are in the process of formation.

At the time of writing, no TAG for Neurology is listed on the Update and Revision Platform intranet site but a TAG for Neurology is listed, here, on the WHO’s website (though no other information about the TAG Neurology is provided):

ICD Revision Topic Advisory Groups

http://www.who.int/classifications/icd/TAGs/en/index.html

“Topic Advisory Groups will serve as the planning and coordinating advisory body for specific issues which are key topics in the update and revision process, namely Oncology, Mental Health, External Causes of Injury, Communicable Diseases, Non-communicable Diseases, Rare Diseases and others to be established.

The primary charge of each group will be to advise WHO in all steps leading to the revision of topic sections of ICD in line with the overall revision process. In particular:

- Advise on particular topic revision steps and establish workgroups and partners to involve – The TAGs will advise WHO on constitution of working groups to undertake generation of necessary evidence, to develop proposals for changes and to focus on specific issues as needed. Each TAG will (a) determine the number and content areas of the workgroups, (b) identify the members and chairs of the workgroups, (c) present an initial mandate to each workgroup, (d) establish procedures for the activities of the workgroups, and (e) facilitate cross-fertilization of ideas and reducing redundant efforts by making workgroups aware of one another’s activities.

- Advise in developing various drafts of topic segments in line with the overall production timeline of ICD-11 TAGs will review initial recommendations of the workgroups and consolidate those to achieve consistency in proposals across groups and areas.

- Advise in developing protocols for and in implementing field trials – TAGs will also assist WHO in identifying appropriate representatives of various stakeholders and in establishing effective collaboration/consultative mechanisms.

Topic Advisory Group for Mental Health  (ToR and members)
GSPN  (ToR and members) (Global Scientific Partnership Coordination Group for Revision of ICD Mental and Behavioural Disorders) 
Topic Advisory Group for Oncology
Topic Advisory Group for Internal Medicine
Topic Advisory Group for External Causes
Topic Advisory Group for Rare Diseases
Topic Advisory Group for Ophthalmology
Topic Advisory Group for Dermatology
Topic Advisory Group for Neoplasms
Topic Advisory Group for Neurology
Topic Advisory Group for Reproductive and Genitourinal“

 

At a two day workshop (epSOS Semantic Interoperability workshop, 22-23 June 2009) Robert Jakob (Medical Officer, Classifications and Terminologies, WHO Geneva) gave a presentation which can be download here:

PDF file  WHO Presentation slides June 2009  (1.33 MB)  WHO Presentation slides June 2009  

Workshop Agenda: epSOS: Ontology-Driven Semantic Interoperability in eHealth

Day 2: Tuesday, June 23, 2009

Impact of semantic interoperable services on medical care and research
Robert Jakob (WHO) – The future of ICD – ICD Revision Process

 

ICD Revision Process

ICD 11 – June 2009

…building blocks of health information…

Robert Jakob / Bedirhan Ustun

Classifications, Terminologies, Standards

Open PDF file  WHO Presentation slides June 2009  (1.33 MB)  WHO Presentation slides June 2009  

Listed at Slide 12 under “Others in formation” are TAGs for Neurology; Musculoskeletal; Ophthalmology; Maternal – Gender; Dermatology; Dentistry.

See Slide 9 for Tentative Timeline (for overall revision process)

See Slides 12, 13, 14  for ICD-11 Revision Organization Structure

See Slides 17 thru 34 for sample Definition of Disease taxonomy (example given is for Myocardial Infarction)

See Slide 38 for ICD-11 Alpha Drafting Timeline (to May 2010)

See Slide 39 for ICD-11 Alpha Draft Calendar (to May 2010)