Year: 2009

Response from Public Services Development Unit, National Archives

Response from Public Services Development Unit, National Archives

Shortlink: http://wp.me/p5foE-2yP

I have been given permission to publish the following:

Related material: The Medical Research Council’s secret files on ME/CFS: Margaret Williams

Response from Public Services Development Unit, National Archives

Received via email, 22 December 2009

Dear XXXXXXXXXX,

         Thank you for your enquiry of 17th November 2009 requesting a review of FD 23/4553/1 – Myalgic encephalomyelitis (ME)/postviral fatigue syndrome (PFS): papers and journal articles; correspondence and enquiries with MRC replies – Closed extracts: 40 pages – 1988-1997.

The Freedom of Information Act 2000 gives you two rights of access when you write to us asking for information.  You have the right to know whether we hold the information that you are looking for, and you have the right to have the information given to you.  These rights may only be overridden if the information you are looking for is covered by an exemption in the Act.  

Unfortunately, all of the information which you are looking for is covered by exemptions. This means that we cannot give you any of the information.  We have set out details below of which exemptions we have applied and why.  

Which exemption applies?:

Section 40 exemption: this section exempts personal information about a `third party’ (that is, someone other than the enquirer), if revealing it would break the terms of the Data Protection Act 1998, or if the person that the information relates to would not have a right to know about it or a right of access to it under that Act (because of its exemption provisions). The 1998 Act prevents personal information being released if, for example, it would be unfair or at odds with the reason why it was collected, or where the individual whom the information was about had properly served notice that releasing it would cause major and unnecessary damage or distress.

Why this exemption applies:

The Section 40 (2) exemption is therefore seen to be engaged towards the overwhelming majority of this file on the grounds that such is seen contain the personal sensitive data of named individuals who are believed to still be living. Whilst The National Archives is unable to comment on the specific nature of such information, it may confirm that such includes the medical details of named individuals. As such it would be considered unfair to these named parties were this material to be released into the public domain. Consequently it has been determined that the public interest is best served in this instance by ensuring that the personal sensitive information of living individuals is not released into the public domain against their reasonable expectations and that all such material is processed fairly and lawfully.

Which exemption applies?:

Section 41 exemption: this section exempts information from any other person if releasing it would mean breaking the terms of confidentiality in a way that is actionable by that or any other person.

Why this exemption applies:

Section 41 exemption: this section exempts information from any other person if releasing it would mean breaking the terms of confidentiality in a way that is actionable by that or any other person. The files contain opinions and information that was given in confidence and the release of which could be actionable.

If you are dissatisfied with any aspect of our response to your request for information and/or wish to appeal against information being withheld from you please send full details within two calendar months of the date of this letter to:

            The Quality Manager
            Public Services Development Unit
            The National Archives
            Kew, Richmond
            Surrey TW9 4DU      
            
You have the right to ask the Information Commissioner (ICO) to investigate any aspect of your complaint. Please note that the ICO is likely to expect internal complaints procedures to have been exhausted before beginning his investigation.

If I can be of further assistance, please do not hesitate to contact me.
Kind regards,

(Signed on behalf of)

Freedom of Information Centre
Information Policy and Services Directorate 
The National Archives
Kew
Richmond
Surrey TW9 4DU
 
0208 876 3444 ext 2552 
Fax +44 (0)20 8487 1976

If you would like to contact us again regarding this request, please contact the helpdesk:

via e-mail:By replying to this e-mail or (020 8876 3444)

Remember to quote your call reference number: F0023328 in any correspondence, as this will assist us in providing you with a quick response.

www.nationalarchives.gov.uk

Forward-ME: Minutes of meeting 24 November 2009

Forward-ME: Minutes of meeting 24 November 2009

Shortlink: http://wp.me/p5foE-2yq

Ed: Forward-ME is a caucus group to the All Party Parliamentary Group on ME (APPG on ME) convened by the Countess of Mar in order to “hammer out areas where [the national patient organisations] shared common ground”.

Membership of Forward-ME is by invitation of Lady Mar, who also chairs these meetings. Members of the public are not permitted to attend the meetings, either as participants or observers. When the Countess of Mar had announced her desire, in mid 2008, to convene a group away from the APPG on ME, no discussions had taken place with the ME community around how, and on what basis it would be decided to whom invitations to participate in these meetings would be extended.

Nor had it been discussed whether the ME community would welcome such a group convening behind closed doors in between meetings of the APPG on ME (which members of the public are able to attend). Nor was it discussed who would be setting the agenda for these meetings.

Forward-ME meetings are attended by representatives of Action for M.E., the ME Association, AYME, The Young ME Sufferers Trust, BRAME, reMEmber (The Chronic Fatigue Society) and Mrs Sue Waddle, on behalf of ME Research UK.  

The 25% ME Group had been a member of Forward-ME but withdrew from the group following the “Countess of Mar NICE Guideline” issue.  Lady Mar was also asked to stand down as Patron to the 25% ME Group.

Invest in ME are also members of the group but have been dithering for sometime now over whether to also withdraw their support.

Since Forward-ME was convened, no further meetings of the ME Alliance have been held. It would appear that these meetings chaired by Lady Mar have become a substitute for (an extended) ME Alliance, although no formal statement on behalf of the Alliance has been issued around its current status or its future.

Correspondence between RiME and Lady Mar

Statement from Invest in ME on Forward-ME

Statement from 25% ME Group on Forward-ME

FORWARD-ME

http://www.forward-me.org.uk/24th%20November%202009.htm

Minutes of the meeting held on Tuesday 24 November 2009

At the House of Lords

1. Present:

Christine Harrison – BRAME
Bill and Janice Kent – ReMEmber
Peter Spencer – AfME
Charles Shepherd – MEA
Sue Waddle – MERUK
Margaret Mar – Chairman

2. Apologies:

Mary-Jane Willows – AYME
Jane Colby – TYMES Trust
Tanya Harrison – BRAME
Kathleen McCall – Invest in ME

3. Dr James Bolton, Deputy Chief Medical Adviser, Department for Work and Pensions.

The Chairman introduced Dr Bolton and thanked him for agreeing to address the Group.

Dr Bolton began by saying that the health and work agenda provided a lot to talk about. He had been looking at some graphs which showed that proportionally, there were more people of pensionable age, fewer people of working age, and those of working age were getting older. As the working population grew older they suffered from more adverse health conditions. The question then arose as to how to support people with health conditions in work. It was not only for economic reasons. There was a huge amount of evidence that showed the benefits of being in work and that being out of work was harmful.

This was the challenge. It would be necessary to get individuals, GP’s and employers to talk to each other and to work together. The current medical certificate or ‘sick note’ showed only that an individual was fit or not fit for work. This was in contrast with the proposed new ‘fit note’, for which legislation would be required, which would be used for people in work who would be capable of doing some kind of work which was not necessarily the same work as they had been doing. The GP would be expected to recommend which types of work were suitable. This would mean that appropriate and reasonable adjustments may have to be made in the workplace.

It was intended that pilot schemes would be run to make sure that people got appropriate treatment as soon as possible and that they were helped to get back to work. If these were successful the procedures were introduced universally. Most big businesses had access to occupational health services and were already able to cater for some changes. For small and medium enterprises (SME’s) an occupational health line with employment advisors would be appointed to provide an advisory service. This, again, would be piloted. Continue reading “Forward-ME: Minutes of meeting 24 November 2009”

Christmas and New Year on ME agenda

 

A peaceful Christmas and better health in the coming year

https://meagenda.wordpress.com

 

Let’s hope this coming year will be the year that sees proper recognition for this illness and of
the desperate need for funding biomedical research.

ME agenda site will remain active over the Christmas and New Year period. 
I’d like to thank readers for their kind messages of support and encouragement over the past twelve months.

Our thoughts are with the Gilderdale Family

candle

Can the MRC PACE Trial be justified: Margaret Williams 17.12.09

A new article from Margaret Williams:

Shortlink:  http://wp.me/p5foE-2xK

Open as Word document:  Can the MRC PACE Trial be justified Williams 17.12.09

Also available at:  http://www.meactionuk.org.uk/Can-the-MRC-PACE-Trial-be-justified.htm

 

Can the MRC PACE Trial be justified

by Margaret Williams

17 December 2009

In March 2003 the House of Commons Select Committee on Science and Technology produced its Report “The Work of The Medical Research Council” (HC 132) in which MPs issued a damning judgment on the MRC, lambasting it for wasting funds and for introducing misguided strategies for its research. The Select Committee had received seven representations about the MRC’s refusal to heed the biomedical evidence about ME/CFS. MPs found evidence of poor planning and of focusing on “politically-driven” projects that have diverted money away from top-quality proposals. The unprecedented attack was the result of a detailed probe into the workings of the MRC. In particular, MPs questioned why the MRC was content to support policies and projects that are likely to perpetuate such criticism.

Given that biomedical research, including gene research (which has shown that in people with ME/CFS, there are more gene abnormalities present than are found in cancer sufferers) has demonstrated that the psychiatrists who hold such sway at the MRC are comprehensively wrong about ME/CFS, nowhere could such criticism be more apposite than in relation to the PACE Trial.

Patients with ME/CFS and their families are in despair, because no-one in authority in the UK seems to be listening: as Mike O’Brien MP, Minister of State for Health, made plain at the APPGME meeting on 2nd December 2009, Ministers can no longer tell agencies of State what to do. This apparently means that, no matter what conclusions are arrived at or what recommendations are made or what evidence is put before a Minister, the Minister concerned can deny having any power to implement change. The Minister himself is reported to have said that he could not require the MRC to undertake research in any specific field, nor could he require Primary Care Trusts to follow Ministerial command. As far as ME/CFS is concerned, it seems that there is nothing the Government can – or will – do about the current situation.

It is apparent that the Government feels no duty of care towards those whose life has been devastated by ME/CFS, a situation that is borne out by Professor Stephen Holgate’s confirmation at the Royal Society of Medicine Meeting on 11th July 2009 (Medicine and me; hearing the patients’ voice) that the Government will not permit integrated research into ME/CFS.

This can only mean that the influence of the Wessely School over the lives of people with ME/CFS will continue and that their tactics of denial will remain unchallenged, no matter what the calibre of the biomedical evidence showing them to be wrong. As people recently drily commented on an ME group, those tactics include:

“load up your committees with your biased friends and pretend they are offering a fresh look; give really negative scorings to biomedical applications; try to stop biomedical papers getting published in the better known journals; make sure to keep on publishing psychiatric rubbish to bias the general medical population and scientific community against any other explanation, and give the impression that CBT/GET is all that is needed i.e. no need to waste all that money on silly biomedical projects” (LocalME@yahoogroups.com 6th December 2009) and

“ensure you use the sketchiest diagnostic criteria you can get away with; wherever possible, avoid seeing / talking to patients at all; never discuss / involve the severely affected; avoid using objective outcome measures; rotate the name of lead authors on papers and ensure you include plenty of reference papers from your psychosocial mates….” (LocalME@yahoogroups.com 7th December 2009).

As others have noted, the strategy is (1) to ignore ME; (2) to ensure that CFS is seen as a problem of false perception, then (3) to reclassify “CFS/ME” as a somatoform disorder (Co-Cure NOT:ACT: 12th January 2008), which is far removed from the reality of ME/CFS, the CNS dysfunctions of which are described by Dr Byron Hyde as being caused by “widespread, measurable, diffuse micro-vasculitis affecting normal cell operation and maintenance….The evidence would suggest that ME is caused primarily by a diverse group of viral infections that have neurotropic characteristics and that appear to exert their influence primarily on the CNS arterial bed” (ibid).

Patients and their families, many clinicians and researchers are well aware of such strategies and tactics but – so powerfully has the Wessely School myth about ME/CFS been promulgated – have been unable to halt them.

As Dr Jacob Teitelbaum reported, the XMRV virus study clearly documents that (ME)CFS is validated within the mainstream medical community as a real, physical and devastating illness, “again proving that those who abuse patients by implying that the disease is all in their mind are being cruel and unscientific…Though the economics may cause a few insurance companies to continue to unethically deny the science, so they can avoid paying for the health care and disability costs they are responsible for, this research should speed up understanding of the illness. Meanwhile, for those with the illness, their families and their physicians, it is now clear that this is a real and devastating illness” (Co-Cure RES: 4th December 2009).

There can be no doubt that, for patients with ME/CFS as distinct from those suffering from chronic “fatigue”, neither CBT nor GET is effective, otherwise everyone would by now be cured. Continue reading “Can the MRC PACE Trial be justified: Margaret Williams 17.12.09”

The Elephant in the Room Series Four: DSM-V: What do we know so far?

 Elephant70

image | belgianchocolate | creative commons

Keywords

APA    DSM    DSM-IV    DSM-V    DSM-5   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

 Shortlink: http://wp.me/p5foE-2wV

The Elephant in the Room Series Four: DSM-V: What do we know so far?

A copy of this material has been sent to:

Sir Peter Spencer, Heather Walker, Tristana Rodriguez (Action for M.E.); Dr Charles Shepherd, Neil Riley, Tony Britton (ME Association); Jane Colby (The Young ME Sufferers Trust); Mary Jane Willows (AYME); ME Research UK; Simon Lawrence (25% M.E. Group); Trustees Invest in ME; BRAME; RiME; The Countess of Mar; Dr Ellen Goudsmit; Professor Malcolm Hooper. Five documents have been also been provided, including WHO ICD Revision: Content Model Style Guide; WHO ICD Revision: Content Model Blank; WHO ICD Revision: Morbidity Reference Group Discussion paper: ICD-11 rules, conventions and structure available from:

https://sites.google.com/site/icd11revision/home/documents

Part One

DSM-V draft proposals

In the UK, the Diagnostic and Statistical Manual of Mental Disorders (DSM), published by the American Psychiatric Association (APA), does not have as much relevance for us as the WHO’s ICD. But the revision of DSM-IV will shape international research and literature in the fields of liaison psychiatry and psychosomatics for many years to come.

Until the APA publishes its alpha draft, we won’t know what the most recent proposals are. But if our corner needs fighting, then according to UK health psychologist, Dr Ellen Goudsmit C.Psychol. FBPsS, we can rely on US psychologists, Jason and Friedberg, to fight our corner for us. Who else might we rely on?

In his commentary Alert to the Research Community—Be Prepared to Weigh in on DSM-V, Psychiatric Times, 3 December, Allen Francis MD, who had chaired the DSM-IV revision Task Force, wrote:

The research community has a central role and a great responsibility in taking advantage of this precious opportunity to carefully review and identify the problems in the DSM-V drafts and to suggest solutions…

Will our own professional advocates – our researchers, clinicians and patient organisations be reviewing and commenting on these draft proposals when they are published, early next year?

According to a PowerPoint presentation delivered Dr B Üstün at the WHO’s September ICD-11 iCAMP meeting:

“ICD will be about 15 thousand Diseases, disorders…”

and will involve

“Between 5000 – 50,000 contributors”

We are just one patient constituency amongst thousands of diseases, disorders and syndromes. But because of the means through which ICD is being revised this time round, there will be opportunity for input from a far wider range of sources into the ICD-11 development process. Again, our interests will need to be effectively represented and it should not be left entirely to the patient community. Our researchers and clinicians will need to be encouraged to input into the ICD revision process, too.

The “H” word

The APA participates with the WHO in the International Advisory Group (AG) for the Revision of ICD-10 Mental and Behavioural Disorders and a DSM-ICD Harmonization Coordination Group.

The DSM-V Task Force and ICD-11 Revision Steering Group have committed as far as possible “to facilitate the achievement of the highest possible extent of uniformity and harmonization between ICD-11 mental and behavioural disorders and DSM-V disorders and their diagnostic criteria” with the objective that “the WHO and APA should make all attempts to ensure that in their core versions, the category names, glossary descriptions and criteria are identical for ICD and DSM.”

The forthcoming shift, scheduled for October 2013, to a US modification of ICD-10 (ICD-10 CM*) and the disparity between the proposed ICD-10 CM classifications and the current ICD-10 codings for Postviral fatigue syndrome, (Benign) myalgic encephalomyelitis and chronic fatigue syndrome may account for an apparent lack of interest in the US in the development of ICD-11. But the proposed structure of ICD-11 may have implications for the US patient population, even though the US might not anticipate moving on to ICD-11 for many years.

From the APA’s 10 December press release:

APA will continue to work with the WHO to harmonize the DSM-5 with the mental and behavioral disorders section of the ICD-11. Given the timing of the release of both DSM-5 and ICD-11 in relation to the ICD-10-CM, the APA will also work with the CDC and CMS to propose a structure for the U.S. ICD-10 CM that is reflective of the DSM-5 and ICD-11 harmonization efforts. This will be done prior to the time when the ICD-10-CM revisions are “frozen” for CMS and insurance companies to prepare for the October 1, 2013, adoption.

It was reported, in August (DSM-V Field Trials Set to Begin Elsevier Global Medical News), that the APA planned to launch some field trials for DSM-V in October, with all field trials scheduled for completion by the end of 2010, for a previously anticipated publication date of May 2012.

According to Christopher Lane, author of Shyness: How Normal Behavior Became a Sickness, most of the field trials have yet to begin because the Work Groups can’t agree on their criteria (Psychology Today).

*For current proposals for US modification ICD-10 CM see: 
http://en.wikipedia.org/wiki/History_of_chronic_fatigue_syndrome#ICD-10-CM   

**Postviral fatigue syndrome and (Benign) myalgic encephalomyelitis are classified in Chapter VI of ICD-10: Volume 2: The Tabular List at G93.3; Chronic fatigue syndrome is indexed at G93.3 in ICD-10: Volume 3: The Alphabetical Index.

See:  http://apps.who.int/classifications/apps/icd/icd10online/?gg90.htm+g933 
See:  http://www.scribd.com/doc/7350978/ICD10-2006-Alphabetical-Index-Volume-3  (Page 528, top right hand column)

 

Somatic Distress Disorders

The DSM-V Work Group that has relevance for us is the Work Group for “Somatic Distress Disorders” (aka “Somatic Symptom Disorders”).

This group has responsibility for the revision of the DSM classifications currently listed under “Somatoform Disorders”. The equivalent section in ICD-10 is “Somatoform Disorders” classified in Chapter V: Mental and Behavioural Disorders between codes F45 – F48.0.

Go here: https://meagenda.wordpress.com/dsm-v-directory/

scroll down to the heading “Related documents” and open Document [6] DSM-IV ICD-10 Classifications

This document sets out how the two classification systems currently correspond for “Somatoform Disorders”. You will also find links in Document [6] for ICD Chapter V classifications for “Somatoform Disorders” codings at F45 – F48.0, and for G93.3 (ICD Chapter VI, the Neurological chapter).

The members of the Somatic Distress Disorders Work Group (SDD WG) are published on the APA’s website here:

http://www.psych.org/MainMenu/Research/DSMIV/DSMV/WorkGroups/SomaticDistress.aspx

This document also includes biosketches and disclosure information for each Work Group member. The group is chaired by Professor Joel E. Dimsdale, MD. The nine members of the DSM-V Somatic Distress Disorders Work Group are:

Arthur J. Barsky, MD*; Francis Creed, MD*; Nancy Frasure-Smith, PhD; Michael R. Irwin, MD; Francis J. Keefe, PhD; Sing Lee, MD; James L. Levenson, MD*; Michael Sharpe, MD*; Lawson R. Wulsin, MD.

DSM-V Task Force member, Javier Escobar, MD, serves as Task Force liaison to the DSM-V Somatic Distress Disorders Work Group and works closely with this group.

Four out of the ten members of the DSM-V Somatic Distress Disorders Work Group (asterisked) were also members of the CISSD Project workgroup; Prof Michael Sharpe served as the CISSD Project’s UK Chair. The CISSD Project’s International Chair was Prof Kurt Kroenke, MD.

We have no information on how closely the ICD Topic Advisory Group for the revision of Mental and Behavioural Disorders (TAG MH) is collaborating with the DSM-V SDD Work Group over the revisions of their respective “Somatoform Disorders” sections. Until the iCAT platform is launched, it is not apparent what changes TAG MH might be proposing for the structure and content of its corresponding Chapter V: F45 – F48.0 codes or to what extent ICD Revision intends that any changes to its own “Somatoform Disorders” will mirror Task Force proposals for DSM-V.

If the DSM-V Task Force were to approve radical changes to its “Somatoform Disorders” category, will ICD Revision still aim for “harmonization”?

Earlier this year, I called publicly on the ME Association to publish an analysis and commentary on the aims, objectives and recommendations of the CISSD Project in the context of the ICD and DSM revision processes and to inform its members, generally, around the forthcoming revisions of these two classification systems, which have been in progress since 2007 and 1999.

To date, apart from trumping Action for M.E. by publishing a summary report on the CISSD Project, provided by Dr Richard Sykes (in response to which the ME Association has expressed no comment or opinion whatsoever), this organisation has done nothing to inform its membership and the wider ME community around the forthcoming ICD revision, or that of DSM.

Nor has the ME Association clarified whether it intends to participate in draft consultations or in the submission of proposals to ICD, and if so, whether its membership will be given an opportunity to inform its position.

I have provided the ME Association board members with key information and documents: not a flicker of interest.

Stephen Ralph, who maintains the ME Action UK website, reports that when he approached Dr Charles Shepherd, recently, to ask what the ME Association was doing in relation to DSM and ICD, Dr Shepherd’s response had been that this was not an issue he had time for or was interested in.

An extraordinary response from an Honorary Medical Adviser given:

  The influential membership of the CISSD Project workgroup and the positions that some of its members now hold on the DSM Task Force and Somatic Distress Disorders Work Group.

•  The potential for review and revision of the current ICD-10 classifications and codings for Postviral fatigue syndrome, (Benign) myalgic encephalomyelitis (both currently classified in Chapter VI at G93.3) and chronic fatigue syndrome (currently indexed in Volume 3 at G93.3, only);

•  The means through which ICD-11 will be developed (the iCAT electronic multi-authoring platform) enabling a wide range of input from many sources;

•  The potential for, and implications of a radical revision of the DSM-IV category currently known as “Somatoform Disorders”;

•  The commitment of ICD and DSM to “harmonization” and congruency between the two systems;

•  The potential for considerably more content to be included in ICD-11 than in previous versions of ICD*.

*See: Key documents, particularly: Content Model Style Guide on the ICD-11 Revision site at: https://sites.google.com/site/icd11revision/home/documents 

The ME Association has adopted and promotes the use of the term “myalgic encephalopathy”. Is this at the root of Dr Shepherd’s disinclination to become drawn into debate around the forthcoming ICD revision, since “myalgic encephalopathy” has no classification or coding within ICD-10, at all?

Given the views expressed by Jane Colby, Executive Director of The Young ME Sufferers Trust, it would be useful if Ms Colby would also set out her organisation’s position in relation to PVFS, ME, CFS in the context of ICD-11.

Part Two

The 10 December APA press release noted that draft changes to the DSM will be posted on the DSM-V website in January 2010 and that comments will be accepted for two months and reviewed by the relevant DSM-V Work Groups in each diagnostic category.

That’s not very long for consultation for a patient community like ours.

A number of patient communities and interest groups have already been engaging for some time with DSM-V Work Groups. For one category (schizophrenia), quite detailed proposals have been made available for discussion and posted online. But for the DSM-V Work Group that has relevance for us – the “Somatic Distress Disorders” aka the “Somatic Symptom Disorders” Work Group, very little has emerged to date, and what has been published is lacking in detail.

What do we know so far?

Since the DSM-V Work Groups were announced in May 2008, each group has published just two progress reports.

The November 2008 report of the Somatic Distress Disorders Work Group can be read here:

http://tinyurl.com/DSMSDDWGNov08

The April ’09 progress report of the Work Group can be read here:

http://tinyurl.com/DSMSDDWGApril09

Since April, no further updates have been issued by any of the DSM-V Work Groups. So until a draft for DSM revision proposals is released we are forced to glean what we can from journals.

In April ’09, the Somatic Distress Disorders Work Group reported that they were exploring the potential for eliminating criteria such as “medically unexplained symptoms”:

…More controversial is a proposal the group has been examining, which would combine somatization disorder, hypochondriasis, pain disorder and undifferentiated somatoform disorder into one overarching disorder (tentatively entitled, “complex somatic symptom disorder”). The hallmark of this disorder would be somatic symptoms associated with significant distress and disability. In some cases the patient’s response is disproportionate and maladaptive. Our group is exploring the potential for eliminating criteria such as “medically unexplained symptoms” as a marker of this disorder because such considerations are commonly unreliable, divisive between doctor and patient and lead to mind-body dualism…

This was followed, in June, by an Editorial co-authored by DSM-V Work Group Chair, Joel Dimsdale, and fellow Work Group member, Francis Creed, which expanded on the themes in the April ’09 update. This Editorial was published as free access, so at least those without access to journal papers were able to read it – assuming they were aware of it.

The Editorial: “The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV – a preliminary report” was published on behalf of the Somatic Symptom Disorders Work Group in the June ’09 issue of the Journal of Psychosomatic Research, for which Francis Creed is a co-editor. Several Letters to the editor in response to this Editorial have been published in the January ’10 edition of this journal, but these are not free access.

Free full text and PDF versions of the June ’09 Editorial here:

http://www.jpsychores.com/article/S0022-3999(09)00088-9/fulltext

The relevant section is “Psychological factor affecting a general medical condition” – towards the end of the document.

Under this section, Dimsdale and Creed wrote that some authors have recommended wider use of this existing DSM-IV category as “a diagnosis that encompasses the interface between psychiatric and general medical disorders”, citing the 2005 paper by Mayou R, Kirmayer LJ, Simon G, Kroenke K, Sharpe M: Somatoform disorders: time for a new approach in DSM-V. Am J Psychiat. 2005;162:847–855.

Free full text: http://ajp.psychiatryonline.org/cgi/content/full/162/5/847 

The Editorial reports that the [Psychological factors affecting a general medical condition] diagnosis “has been underused because of the dichotomy, inherent in the ‘Somatoform’ section of DSM-IV, between disorders based on medically unexplained symptoms and patients with organic disease”, and that by doing away with the “controversial concept of medically unexplained”, the proposed classification might diminish the problem.

The conceptual framework the Work Group were proposing, at that point:

…will allow a diagnosis of somatic symptom disorder in addition to a general medical condition, whether the latter is a well-recognized organic disease or a functional somatic syndrome such as irritable bowel syndrome or chronic fatigue syndrome.

The Editorial goes on to list a variety of different subtypes included within the diagnosis of “Psychological factors affecting a general medical condition” including a specific psychiatric disorder which affects a general medical condition; psychological distress in the wake of a general medical condition and personality traits or poor coping that contribute to worsening of a medical condition.

It suggests that these might be considered in the rubric “adjustment disorders” but that the location of this type of adjustment disorder had yet to be settled within the draft of DSM-V and that the text and placement for these different variants of the interface between psychiatric and general medical disorders was still under review.

(The current use of the diagnosis “Psychological Factors Affecting Medical Condition” in DSM-IV is set out here: http://www.behavenet.com/capsules/disorders/psyfactorsmedcon.htm )

The recently published Editorial: Is there a better term than “Medically unexplained symptoms”? Creed F, Guthrie E, Fink P, Henningsen P, Rief W, Sharpe M and White P (Journal of Psychosomatic Research: Volume 68, Issue 1, Pages 5-8 January 2010) discusses the deliberations of the EACLPP study group* on which I have previously reported. The Editorial also includes references to the DSM and ICD revision processes.

* https://meagenda.wordpress.com/2009/05/18/the-elephant-in-the-room-series-two-more-on-mups/
* http://www.eaclpp.org/documents/Patientswithmedicallyunexplainedsymptomsandsomatisation.doc

References to DSM and ICD revision in:

Is there a better term than “Medically unexplained symptoms”? Creed F, Guthrie E, Fink P, Henningsen P, Rief W, Sharpe M and White P. J Psychoso Res: Volume 68, Issue 1, Pages 5-8.

[Extract]

Introduction

The European Association of Consultation Liaison Psychiatry and Psychosomatics (EACLPP) is preparing a document aimed at improving the quality of care received by patients who have “medically unexplained symptoms” or “somatisation” [1]. Part of this document identifies barriers to improved care and it has become apparent that the term “medically unexplained symptoms” is itself a barrier to improved care…

…The authors of this paper met in Manchester in May 2009 to review thoroughly this problem of terminology and make recommendations for a better term….The deliberations of the group form the basis of this paper…

[…]

Our priority was to identify a term or terms that would facilitate management – that is it would encourage joint medical psychiatric/psychological assessment and treatment and be acceptable to physicians, patients, psychiatrists and psychologists.

Criteria to judge the value of alternative terms for “medically unexplained symptoms”

Ten criteria were developed in order to judge the value of potential terms which might be used to describe the group of symptoms currently referred to as medically unexplained symptoms. Obviously, this list of criteria does not claim to be exhaustive, but we believe that it captures the most important aspects. The criteria are that the term:

1. is acceptable to patients
2. is acceptable and usable by doctors and other health care professionals, making it likely that they will use it in daily practice.
3. does not reinforce unhelpful dualistic thinking.
4. can be used readily in patients who also have pathologically established disease
5. can be adequate as a stand alone diagnosis
6. has a clear core theoretical concept
7. will facilitate the possibility of multi-disciplinary (medical and psychological) treatment
8. has similar meaning in different cultures
9. is neutral with regard to aetiology and pathology
10. has a satisfactory acronym.

Terms suggested as alternatives for “medically unexplained symptoms”

The group reviewed terms which are used currently or have been proposed for the future. An extensive list was abbreviated to the following 8 terms or categories: The terms we reviewed were:

1. Medically unexplained symptoms or medically unexplained physical symptoms
2. Functional disorder or functional somatic syndromes
3. Bodily distress syndrome/disorder or bodily stress syndrome/disorder
4. Somatic symptom disorder
5. Psychophysical / psychophysiological disorder
6. Psychosomatic disorder
7. Symptom defined illness or syndrome
8. Somatoform disorder

[…]

Implications for DSM-V and ICD-11

There is overlap between the discussion reported here and the discussion currently under way towards the creation of DSM-V. Two of the authors (FC, MS) are also members of the working group on Somatic Distress Disorders of the American Psychiatric Association (APA), which is proposing a new classification to replace the DSM-IV “somatoform” and related disorders. In this working group, similar concerns about the use of the term and concept of “medically unexplained symptoms” have been raised [12]. The current suggestion by the DSM-V work group to use the term “Complex somatic symptom disorder” must be seen as step in a process and not as a final proposal. Unfortunately this term does not appear to meet many of the criteria listed above.

[…]

One major problem for reforming the classification relates to the fact that the DSM system includes only “mental” disorders whereas what we have described above is the necessity of not trying to force these disorders into either a “mental” or “physical” classification. The ICD-10 system has a similar problem as it has mental disorders separated from the rest of medical disorders.

The solution of “interface disorders”, suggested by DSM IV, is a compromise but it is unsatisfactory as it is based on the dualistic separation of organic and psychological disorders and prevents the integration of the disorders with which we are concerned here. This lack of integration affects the ICD classification also. For example functional somatic syndromes (e.g. irritable bowel syndrome) would be classified within the “physical” classification of ICD or Axis III in DSM (gastrointestinal disorders) and omitted from the mental and behavioural chapter entirely [13].

[End Extract]

Peter Denton White, Professor of Psychological Medicine, Barts and the London Medical School, has had quite a lot to say, recently, about ICD-10. In December 2008, Prof White gave a workshop presentation titled “Chronic fatigue syndrome: neurological, psychological or both?” at a Neurology and Psychiatry SpRs Teaching Weekend held in Oxford and sponsored by UCB Pharma and Biogen Idec UK. In the workshop handbook, Prof White talks about the taxonomy of CFS as being “a mess”.

Prof White writes:

My personal view is that it is high time that all mental health disorders and neurological diseases affecting the brain were classified within the same chapter, simply called diseases/disorders of the brain and nervous system.

(Workshop Handbook: Prof Peter White: Pages 46 – 50 http://bnpa.org.uk/doc/HANDBOOK.pdf  )

During his Royal Society of Medicine “CFS” Conference presentation, in April 2008, Prof White had told the conference:

…So ICD-10 is not helpful and I would not suggest, as clinicians, you use ICD-10 criteria. They really need sorting out; and they will be in due course, God willing.

See: Document [5] Extract, transcript, RSM CFS Conference presentation: Prof Peter White discouraging Conference from using ICD:  https://meagenda.wordpress.com/dsm-v-directory/  

In the paper: “Risk markers for both chronic fatigue and irritable bowel syndromes: a prospective case-control study of primary care” Psychological Medicine, Nov 2009, co-authored by Prof White, the authors propose a change to current ICD-10 codings ( http://www.ncbi.nlm.nih.gov/pubmed/19366500 ).

In the section “Implications for Further Research” the authors state that because the paper finds, “These data also suggest that fatigue syndromes are heterogeneous (Vollmer-Conna et al. 2006), and that CFS/ME and PVFS should be considered as separate conditions, with CFS/ME having more in common with IBS than PVFS does (Aggarwal et al. 2006). This requires revision of the ICD-10 taxonomy, which classifies PVFS with ME (WHO, 1992).”

According to DSM-V Task Force member, Javier Escobar, who works closely with the Somatic Distress Disorders Work Group, the so-called “Functional Somatic Syndromes (FSS)”, or “Medically Unexplained Symptoms (MUS)” include a long list of medical conditions:

Irritable bowel syndrome, Chronic fatigue syndrome, Fibromyalgia, Multiple chemical sensitivity, Nonspecific chest pain, Premenstrual disorder, Non-ulcer dyspepsia, Repetitive strain injury, Tension headache, Temporomandibular joint disorder, Atypical facial pain, Hyperventilation syndrome, Globus syndrome, Sick building syndrome, Chronic pelvic pain, Chronic whiplash syndrome, Chronic Lyme disease, Silicone breast implant effects, Candidiasis hypersensivity, Food allergy, Gulf War syndrome, Mitral valve prolapse, Hypoglycemia, Chronic low back pain, Dizziness, Interstitial cystitis, Tinnitus, Pseudoseizures, Insomnia, Systemic yeast infection, Total allergy syndrome [1]

[1] PSYCHIATRY AND MEDICAL ILLNESS Special Report
Unexplained Physical Symptoms What’s a Psychiatrist to Do? Humberto Marin, MD and Javier I. Escobar, MD,  Psychiatric Times. Vol. 25 No. 9, 01 August 2008
http://www.psychiatrictimes.com/display/article/10168/1171223

——————

Over the past four or five years, dozens of journal reviews, papers and editorials have been published to inform the DSM revision process (with a very few papers specifically ICD-centric). Research planning conferences, symposia and monographs have further generated dialogue within the field around the taxonomy of the so-called “somatoform disorders” – it’s been quite an industry for liaison psychiatry and psychosomatics.

The CISSD Project, initiated in 2002 by Dr Richard Sykes, PhD, and administered by Action for M.E., between 2003 and 2007, is one project that has fed into both the DSM and the ICD revisions. Dr Sykes describes his project’s objective “to stimulate a multidisciplinary dialogue about the taxonomy of somatoform disorders and the medical diagnoses of functional somatic syndromes (e.g., irritable bowel syndrome, chronic fatigue syndrome, fibromyalgia)” and that the three CISSD Project workshops “brought together American and European experts to further consider the key questions and potential changes to be addressed in any revision of the Somatoform Disorders category, with the explicit aim of informing the development of DSM–V.”

The members of the CISSD Project workgroup were drawn almost exclusively from the fields of liaison psychiatry and psychosomatics. There were no patient organisation representatives on board and the only patient rep had co-authored a book on CFS with Prof Michael Sharpe, the project’s UK Chair.  Little wonder that Action for M.E. sought to keep a lid on this project for so long.

Understand that this unofficial project, initiated by Dr Richard Sykes and administered by Action for M.E. as part of the “merger” deal between Action for M.E. and Westcare UK, in mid 2002, does not have the authority of either the WHO or the APA, but that a number of influential CISSD Project workgroup members now serve on DSM-V Task Force and DSM-V Work Group committees – including Sharpe, Creed, Barsky, Levenson, Escobar and Dimsdale.

The first two tranches of funding paid to Dr Sykes for his co-ordination of the CISSD Project (£24,000 and £18,750) had been recorded in Action for M.E.’s year end accounts for 2006, and 2007, as a grant administered for the WHO Somatisation Project This grant is provided to help lobby the World Health Organisation for the recognition of M.E. and its re-categorisation as a physical illness.”

But the review paper resulting out of the CISSD Project, published by project leads Kroenke K, Sharpe M, Sykes R: Revising the Classification of Somatoform Disorders: Key Questions and Preliminary Recommendations. Psychosomatics 2007 Jul-Aug;48(4):277-285, was DSM-centric.

(Full free text: http://psy.psychiatryonline.org/cgi/content/full/48/4/277  )

A single reference to ICD appears in Table 2: Recommendations for Revising Somatoform Disorders in DSM-V at point VII. under “Other Recommendations: 3. The APA and WHO should work together to make DSM-V and ICD-11 compatible with respect to the categories, disorders, and criteria for mental disorders…”

Chronic fatigue syndrome is mentioned twice: in the introduction, and under Key Questions 5. How should functional somatic syndromes be classified? These so-called functional somatic syndromes include conditions such as irritable bowel syndrome, fibromyalgia, chronic fatigue syndrome, interstitial cystitis, and others. These syndromes are overlapping and frequently coexist…”

There is no reference in the review to Postviral fatigue syndrome or to (Benign) myalgic encephalomyelitis; the paper does not set out what its authors understand by the term “chronic fatigue syndrome” or their understanding of its relationship to Postviral fatigue syndrome or to (Benign) myalgic encephalomyelitis nor does it set out existing ICD-10 classifications and codings for any of these terms.

The paper fails to acknowledge that in ICD-10, Chronic fatigue syndrome is indexed in Volume 3 at G93.3. In fact, Dr Sykes had undertaken his project under the misapprehension that Chronic fatigue syndrome was not included anywhere in ICD-10 – a point he has since conceded.

The review paper has informed both the DSM and ICD revision processes and its recommendations have been submitted to the ICD Update and Revision Platform by Dr Sykes, in 2008, on behalf of the CISSD Project workgroup.

Note that the journal review paper, published in Psychosomatics 2007 Jul-Aug, by CISSD Project leads, Kroenke K, Sharpe M and Sykes R, is an entirely different document to the “CISSD Project and CFS/ME Report on the CISSD Project for Action for ME” which was an internal document handed to the project administrators, Action for M.E., in December 2007, by project co-ordinator, Dr Sykes, and not intended for publication. A copy of Dr Sykes’ Report for Action for M.E. and an accompanying “Co-ordinator’s Report” are now in the public domain.

( http://www.afme.org.uk/res/img/resources/CISSD%20project%20report%201.pdf  )
( http://www.afme.org.uk/res/img/resources/CISSD%20project%20report%202.pdf  )

In addition to its 13 Work Groups, DSM-V also uses external advisers whose names are not being disclosed. ICD Revision Topic Advisory Group Managing Editors (TAGMEs) will be networking for external peer reviewers for revision proposals and content.

( http://whoicd11.blogspot.com/2009/09/who-icd-11-googlesite.html#comments  )

One of the questions I raised, in October, with the WHO’s Dr Robert Jakob [Medical Officer (ICD) Classifications, Terminologies, and Standards] is whether those acting as independent peer reviewers to the various TAGs, and also external sources from whom input/opinion might otherwise be being sought, would be identified via iCAT to users outside the ICD revision process; whether the evaluations undertaken by external reviewers and input from external sources would be visible to those outside ICD revision and whether COI disclosures would be required of external reviewers.

——————

This represents about all that is available to me at the moment on the deliberations of the DSM-V Work Group – other than the Letters to the editor in response to “The proposed diagnosis of somatic symptom disorders in DSM-V to replace somatoform disorders in DSM-IV – a preliminary report”.

According to the APA, we can anticipate DSM-V draft proposals published in the New Year.

ICD-11 Alpha Draft is timelined for May 2010. We have no ETA yet for the launch of iCAT, the wiki-like electronic authoring platform through which ICD-11 will be developed so it is not yet evident what content will form the “Start-up list” for those categories of relevance to us.*

*Each Chapter of ICD-11 will have a “Start-up list” which, according to ICD Revision documentation, will include current ICD-10 content, input from ICD clinical modifications and WHO affiliate organisations, proposals already received via the ICD Update and Revision Platform.

——————

For information, commentary and updates on the development of ICD-11 and DSM-V on ME agenda: https://meagenda.wordpress.com/dsm-v-directory/

For detailed information on the proposed structure of ICD-11, the Content Model and operation of iCAT, the collaborative authoring platform through which the WHO will be revising ICD-10, please scrutinise key documents on the WHO’s ICD-11 Revision Google site:

https://sites.google.com/site/icd11revision/
https://sites.google.com/site/icd11revision/home/documents

For ICD Revision iCamp YouTube videos:  http://www.youtube.com/user/WHOICD11

For DSM-V pages on the website of the American Psychiatric Association (APA): http://www.psych.org/MainMenu/Research/DSMIV/DSMV.aspx

Psychiatric Times for updates, articles and commentary on DSM-V:  http://www.psychiatrictimes.com/dsm-v

Report of Meeting of the All Party Parliamentary Group on ME by John Sayer

Shortlink: http://wp.me/p5foE-2wI

Update: A second report, in the form of a YouTube video, has also been published:

Dr Charles Shepherd’s unofficial summary of the 2 December APPG on ME meeting, published on behalf of the ME Association on 4 December, can be read here:

Summary of meeting of APPG on ME 2 December 2009: http://wp.me/p5foE-2sj

—————-

Video Report on the UK Parliament All Party Group, APPG, on ME meeting of the 2nd of December

The APPG on ME met on the second of December this year to conclude the Inquiry the APPG has been conducting into publicly funded UK NHS health services for people with ME. APPGs are low level parliamentary committees made up of members of the elected House of Commons and the unelected second or upper tier of Parliament.

However, APPGs are not part of the structure of the UK Government and neither are they part of the official parliamentary committee structure for the scrutiny of government legislation or government departments like the Health Select Committee which scrutinises the Secretary of State for Health and their junior ministerial colleges in order to have parliamentary oversight of the Department of Health.

The main purpose of the APPG on ME’s Inquiry was to interest the Health Select Committee in setting up a similar and more powerful and well resourced Inquiry into NHS services for people with ME. This appears to be a very unlikely outcome given the way the APPG’s Inquiry was conducted and the way in which the Inquiry was concluded.

The meeting of the APPG held on 2/12/09 has proved to be a particularly controversial one and there have been a number of rumours running around the Internet about what took place. The first of a series of three videos gives a factual account of what took place at this meeting with comment and analysis. The remaining videos set out the background to the Inquiry from its inception through to the way in which the Inquiry was carried out.

I would therefore recommend that anyone who has seen the various accounts of the proceedings of the 2nd of December meeting on the Internet might like to watch these videos in order to place the events of the 2nd of December meeting in wider context of the APPG Inquiry as a whole, and then judge matters accordingly.

The report on the meeting of the 2nd of December APPG meeting can be viewed on the You Tube Channel action4change4me at :-

http://www.youtube.com/watch?v=YyFp_sTNj08

The background to the APPG Inquiry can be found from a previous video report of the 1st of April 2009 APPG meeting which deals with the setting up and launching of the Inquiry which can be viewed through the You Tube Channel action4change4me at :-

http://www.youtube.com/watch?v=ndqP-pSrj6I

There is another video report on the APPG on ME meeting of the 8th of October 2008 at which the APPG first decides to initiate the Inquiry, which can be viewed on the You Tube Channel GBC One here :-

http://www.youtube.com/watch?v=vPPClZDko8c

Ciaran Farrell

15 December 2009

—————-

Meeting of the All Party Parliamentary Group on M.E.
12 December 2009

Report by John Sayer (Chair M.E. Support-Norfolk)

This was the first APPGME meeting I’d ever been able to attend (thanks to Dan, of M.E. Support-Norfolk, driving us down to London) and I’ve now seen for myself how the APPGME operates.

I was not impressed.

Worst of all was the appallingly unprofessional and unhelpful behaviour of the Chairman, Des Turner MP** and the Secretary, the Countess of Mar, right at the start of the meeting: Paul Davis (RiME) had tried to make a point to Turner as he started his opening remarks, and instead of the latter asking him to wait till he’d finished so he could take comments and/or questions (which would be the professional, polite and normal thing for someone chairing a meeting to do), he shouted at Davis for interrupting – like an angry teacher in a classroom – and continued remonstrating, subsequently also turning on attendee Ciaran Farrell, when he politely tried to calm the situation.

There must have been some background history of tension here, since there was no justification for Turner’s over-the-top outburst, and in the middle of his continuing rant Mar suddenly demanded that Davis and Farrell be ejected, otherwise she herself would leave. But without waiting for any response, and with attendees looking stunned and/or bemused, she grabbed her things, said she was leaving anyway, and promptly walked out.

Turner continued with his diatribe, and with belligerent looks and gestures, widened the target of his rebukes to apparently include the whole row of us who were seated together, at one point jabbing a finger in our direction and threatening to have anyone who interrupted him escorted out of the building by the police!

It was an apparent case of Turner, having lost his temper, further getting carried away with his emotions, because he then threatened to leave the meeting as well, actually getting to his feet and gathering up his papers. (Other attendees seated opposite us implored him to stay, which he did.)

This entire episode was completely ridiculous, and I suspect it was a case of Turner and Mar having anticipated trouble for some reason and behaving accordingly, but with no actual cause to do so. It was farcical.

As for the rest of the meeting, we ‘peasants’ were generally treated with what I can only describe as disdain. I would have been open-minded about anyone else’s account if I hadn’t experienced it for myself. It was a disgrace, in my view, and as far as I’m concerned we can do without ‘champions’ like these. What the motivation is for being involved, I don’t know, but I suspect it might have something to do with seeking to maintain control of ‘the movement’ through whatever channels available, the APPGME being just one of them.

My suspicions that this episode was artificially engineered were given strength by the subsequent address by Mike O’Brien MP**, Minister of State for Health Services, who – describing M.E. as “a set of conditions” (!) – appeared to labour the point that one of the obstacles to progress was the lack of unity and agreement amongst patient groups. (Where have we heard that one before?) How coincidental and convenient that the meeting began so ‘controversially’ and demonstrated what a bunch of ungrateful, bolshy irritants we M.E. patients are!

The overwhelming impression I got from this meeting (and not in isolation, as I’ve been following accounts of previous APPGMEs) is that the whole enterprise is becoming a sham. Having dragged myself down to London (at a cost that doesn’t need explaining here), I was well and truly hacked off at the Secretary walking out before the meeting had even got going, being treated like a pariah by a Chairman threatening to end the meeting and having chronically ill patients removed by the police, and being patronised by a Minister whose address was the epitome of political spin. O’Brien seemed to believe that having M.E. meant some days feeling poorly and some days feeling well – well enough to have a part-time job, in fact. So we know where he’s coming from: apparently the same place as Yvette Cooper MP** (guest speaker at the previous APPGME meeting), Secretary of State for Work and Pensions, who ‘had M.E’ some years ago but is now ‘fully recovered’…

In the meantime, Dr Charles Shepherd of the Myalgic Encephalopathy Association (MEA), has put his own account of the meeting on the MEA web site here

[extract]:

“Unfortunately, the meeting got off to an extremely regrettable start – all due to a very small section of the audience making repeated and sometimes very aggressive interruptions about various administrative matters. As a result of this gross discourtesy to the Minister, the time available for the ministerial response was being steadily eroded. Despite several polite requests from the Chairman, the interruptions continued. As a result, the Countess of Mar terminated her involvement with the meeting. The Chairman then stated that he would either terminate the meeting or arrange for those involved to be removed from the committee room by the House of Commons police if their interruptions continued. Shortly after, those involved calmed down and we managed to start dealing with the real business of the APPG report.

“On a personal note I am very much in favour of public attendance/contribution at these meetings. However, it needs to be said that if people with ME/CFS want to alienate parliamentary opinion about this illness, and not even have an APPG to put forward their case to ministers etc, then behaving in an aggressive and unpleasant manner is a very good method for achieving this aim. We already have a situation whereby some MPs are unwilling or reluctant to attend APPG meetings – all because of the obsessive and often unpleasant interruptions about administrative matters. And it could well be that after the Election, when the APPG will have to be reformed, it will be very difficult to find enough parliamentarians who are willing to take on an active APPG role. We just cannot afford to risk losing the support of distinguished parliamentarians like the Countess of Mar. It also needs to be said that the vast majority of people with ME/CFS who were present on Wednesday, or were being represented, had come to hear about the report, listen to the Minister, and then ask difficult questions about NHS services – they did not want to take up valuable time listening to complaints about the minutes and APPG administration. This could (and should) have waited till after the Minister had left.”

I’m afraid to say that this version of events at the start of the meeting is so inaccurate as to be justifiably called false. It is not just a distortion of the facts, it is blatantly wrong and I’m now ready to believe that this shameful episode really was deliberately engineered, in order to cast certain individuals – or ‘the M.E. community’ in general – in as bad a light as possible, presumably for the benefit of the Minister of State for Health Services and/or the TV production crew apparently, according to Shepherd’s notes, in attendance.

The “audience” as Shepherd calls us here, did not behave “in an aggressive and unpleasant manner”. Yes, technically speaking and in line with protocol, Davis should perhaps have waited for Turner to finish speaking before seeking to make a point to the Chair, but this was hardly the Crime of the Century and was certainly not a “very aggressive interruption”, as Shepherd would have it.

Neither did Turner make “several polite requests”; he was rude and abusive, to the point of verbal assault. That’s the simple truth. He behaved like an angry, out of control teacher trying to silence a pupil. It was a disgrace and an embarrassment and completely uncalled for. The ‘continued interruptions’ Shepherd refers to were actually contributions from those trying to calm Turner down – including, as I recall, Sir Peter Spencer, CEO of Action for ME!

It is not correct to say, “As a result [of the ‘contuinued interruptions’], the Countess of Mar terminated her involvement with the meeting”. She delivered an ultimatum and then left before anyone could even consider it. There was no need for “those involved” to “calm down”, because people were calm – so calmly spoken in contrast to Turner’s agitated outpourings, in fact, that it was a strain to hear what they were trying to say.

As if to reinforce O’Brien’s assertion that it is partly the fault of ‘the M.E community’ that progress is not being made, Shepherd writes, “…it needs to be said that if people with ME/CFS want to alienate parliamentary opinion about this illness, and not even have an APPG to put forward their case to ministers etc, then behaving in an aggressive and unpleasant manner is a very good method for achieving this aim. We already have a situation whereby some MPs are unwilling or reluctant to attend APPG meetings – all because of the obsessive and often unpleasant interruptions about administrative matters.”

No mention here of the APPGME Chairman “behaving in an aggressive and unpleasant manner” (which he did). No, let’s blame M.E. sufferers themselves for the lack of progress. This excuse just won’t wash any more, and in my own opinion, anyone – MP or otherwise – who is reluctant to get involved in our cause because of the justifiable frustration generally of M.E. patients who have had to suffer denigration, neglect and abuse for decade on decade, is quite simply of no use to us in the first place and we could well do without them.

(It is a ruse, in my view, to attempt to lay some of the blame for the lack of progress in our cause at the feet of patients attending these APPGME meetings and to thereby prejudice the understanding of those not privy to the facts. I have now reached the point, after 17 years, where I seriously believe that too many of our ‘supporters’ are not there to help us at all, but to make sure we don’t actually get any help.)

And if they can’t cope with the issues surrounding ill and vulnerable people, how do MPs manage to deal with their constituents, and voters in general? (With the compensation of a life sweetened by the payment of their moat repairs, damp-proofing, fancy dress wigs and porn movies, perhaps?)

This meeting “got off to an extremely regrettable start” , alright – but not because of the M.E. patients present; it was thanks to the Chairman’s and Secretary’s inability to control themselves. But there’s no need to take my (or anyone else’s) word for what happened: the meeting was officially audio-recorded, and the transcript should eventually be made available for all to see.

Little wonder Shepherd refers in his account to “the audience” at this meeting. As far as I could make out, we were an audience, alright – watching a contrived performance.

—————-

**Footnote

(From the Daily Telegraph supplement “The Complete Expenses Files”; italicised comments are my own):

Des Turner (salary £64,766) Des Turner is a former teacher [aha!] with a PhD in biochemistry. He claimed mortgage interest payments of up to £450 per month on a flat in London and also claimed up to £400 each month on food… [Note – the MPs’ expenses allowance for food alone is equivalent to Incapacity Benefit payments for those unable to work!]

Mike O’Brien (salary £104,050) Claimed £825 for a Sony television in 2006-7, breaching £750 limit, and repaid money following year so he could move it to other home. Claimed £30 for a DVD player in March 2008, plus £250 a month mortgage interest on his designated second home in Nuneaton and £200 a month for food and more for other bills.

Yvette Cooper (salary £141,866) …At one point, Miss Cooper, the new Work and Pensions Secretary, and Mr Balls [husband], the Children’s Secretary, had their expenses docked, having each submitted two monthly claims for mortgage interest for nearly twice the cost of their actual payments. The couple denied flipping after switching their second home designation three times, saying that they had not sought to maximise their expenses and that, unlike some colleagues, they had paid capital gains tax on selling their home…In total, the couple claimed £24,400 between them on their second home allowance last year…

[And it’s the sick and disabled these people are supposed to help who are branded “benefits scroungers”?]

American Psychiatry Is Facing “Civil War” over Its Diagnostic Manual What’s the real reason DSM-V has been delayed? Christopher Lane

Shortlink: http://wp.me/p5foE-2wt

See also previous postings: 

Press Release: DSM-5 Publication Date Moved to May 2013  

Opinion on DSM-V (DSM-5) revision on Psychiatric Times site and in this week’s New Scientist, 9 December

PDF of press release here:  http://DSM5toMay2013.notlong.com

The American Psychiatric Association (APA) has yet to update its website to reflect last Thursday’s predicted announcement that the publication date for DSM-V is being shifted from May 2012 to May 2013. According to the press release, draft changes to DSM are to be posted on the DSM-V website in January 2010. Comments will be accepted for two months for review by the relevant DSM-V Work Groups for each diagnostic category. Field trials for testing proposed changes will be conducted in three phases.

DSM-V pages herehttp://www.psych.org/MainMenu/Research/DSMIV/DSMV.aspx

DSM-V Timeline page here:  http://www.psych.org/MainMenu/Research/DSMIV/DSMV/Timeline.aspx

——————–

Interesting piece on 12 December from Christopher Lane:

Christopher Lane is the Pearce Miller Research Professor of Literature at Northwestern University and the author of Shyness: How Normal Behavior Became a Sickness.

Psychology Today

Blogs
Side Effects
From quirky to serious, trends in psychology and psychiatry.

by Christopher Lane, Ph.D.

http://www.psychologytoday.com/blog/side-effects/200912/american-psychiatry-is-facing-civil-war-over-its-diagnostic-manual

December 12, 2009, Psychiatry

American Psychiatry Is Facing “Civil War” over Its Diagnostic Manual What’s the real reason DSM-V has been delayed?

What’s the real reason DSM-V has been delayed?

Yesterday, the American Psychiatric Association announced that it is pushing back the publication of DSM-V until 2013. The APA tried to put a good face on this rather embarrassing admission—embarrassing, because several spokespeople for the organization had insisted, quite recently, that they were on-track for publication in 2012 and that nothing would deter them. They maintained that position even as an increasingly acrimonious quarrel between current and former editors of the manual spilled onto the pages of Psychiatric News…Read on

The original dissemination date for ICD-11 had also been 2012, with the timelines for ICD-11 and DSM-V running more or less in parallel ( http://www.apa.org/international/s08agenda25-Exhibit1.pdf  ). ICD-11 has since slipped by two years.

The most recent timeline I can provide was included in the June 2009 PowerPoint presentation by Robert Jakob (Medical Officer, Classifications and Terminologies, WHO Geneva), download here: ICD Revision Process [PDF format 1.33 MB]

ICD Revision Process
ICD-11 June 2009

Presentation: Robert Jakob / Bedirhan Üstün

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

Tentative Timeline

2010 : Alpha version ( ICD 10+ → ICD 11 draft)
– +1 YR : Commentaries and consultations
2011 : Beta version & Field Trials Version
– +2 YR : Field trials
2013 : Final version for public viewing
– 2014 : WHA Approval
2015+ : Implementation

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

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

Alpha Draft Calendar

Preparations will finish before 31 August 2009
Overall Drafting Period: 14 September 2009 – 15 April 2010
Phase 1: 14 Sept – 11 Dec 2009 (10 WORKING WEEKS)
Provisional Interim Review: 15 Dec – 15 Jan
Phase 2: 18 Jan – 16 April 2010 (10 WORKING WEEKS)
Prefinal Review by WHOFIC: 15 April – Council
Submission for Systematic ALPHA TESTS: May 2010

According to “ICD Revision” on Facebook:

http://www.facebook.com/pages/ICD-Revision/117942832025

ICD-11 alpha draft will be ready by 10 May 2010
ICD-11 beta draft will be ready by 10 May 2011
ICD final draft will be submitted to WHA by 2014

It was reported, in August (DSM-V Field Trials Set to Begin, Elsevier Global Medical News), that the APA had planned to launch some field trials for DSM-V in October, with all field trials scheduled for completion by the end of 2010, for a previously anticipated publication date of May 2012. Lane claims that most of the field trials have yet to begin because the Work Groups can’t agree on their criteria.

The recently published Editorial: Is there a better term than “Medically unexplained symptoms”? Creed F, Guthrie E, Fink P, Henningsen P, Rief W, Sharpe M and White P (J Psychosoma Res:Volume 68, Issue 1, Pages 5-8, Jan 2010) discusses the deliberations of the EACLPP study group and includes references to the DSM and ICD revision processes which suggest that the progress of  the DSM-V “Somatic Distress Disorders” Work Group is in chaos.

In Advice To DSM V…Change Deadlines And Text, Keep Criteria Stable , (Psychiatric Times, 26 August), Allen Frances MD, who had chaired the revision of DSM-IV, raised the issue of non parallel timelines and the forthcoming shift from ICD-9-CM to ICD-10-CM in the US – a transition now scheduled for October 2013:

Frances wrote:

“Under normal circumstances, it would make sense to continue the tradition of publishing DSM-V and ICD-11 simultaneously, whenever ICD-11 is ready—probably in 2014. But there is also a problem with a 2014 deadline caused by a coding change that will go into effect before then. ICD-9-CM is now the official method of diagnostic coding used to specify all medical encounters in the United States. It will be replaced in October 2013 by a completely revamped ICD-10-CM. Publishing DSM-V much before October 2013 would result in great confusion and force a choice between 2 equally undesirable options: publish DSM-V in 2012 with the current ICD-9-CM codes, which would be usable only for 18 months; or else, publish DSM-V with the new ICD-10-CM codes even though DSM users would still have to use the ICD-9-CM codes for the next 18 months. Only by delaying publication of DSM-V until just before October 2013 would this problem be solved.”

On 09 July, in Dr Frances Responds to Dr Carpenter: A Sharp Difference of Opinion, Frances had called for the posting of all the suggested wordings for DSM-V criteria sets well before considering field trials:

“Will [Dr William Carpenter, MD] seems to think that his presentations at professional meetings in front of relatively small audiences provide a sufficiently open DSM-V process…We, the field, still know almost nothing about the content of what is being considered for DSM-V or how the options still in play are justified by the literature reviews and data reanalyses…We should have every wording of every proposed criteria set or dimension. Why not post these now to allow for the widest review well before field trials are started? I cannot imagine going to the trouble and expense of field testing before there is confidence that the diagnostic concepts make sense and that they are appropriately worded. Equally puzzling is the lack of posting of the literature reviews and of the methods of the proposed field trials. The DSM-V leadership has made the truly bizarre claim that they have provided the “most open process” of all the previous DSM revisions, but they have not posted any explicit or detailed indication of what they are doing and why…If the real reason for not posting is that the material is not yet in a presentable form, admit this and postpone the field trials until everything can be posted and fully vetted.”

We have no information on how closely ICD Revision and DSM have been collaborating on the revision of their respective “Somatoform Disorders” sections, what changes ICD Revision might be proposing for its corresponding Chapter V: F45 – F48 codes, or to what extent WHO intends that any changes to this section of Chapter V will mirror Task Force proposals for DSM-V. If DSM Task Force has approved radical changes to the categories currently classified under “Somatoform Disorders”, will ICD Revision still aim for “harmonisation”?

Despite the ICD Revision iCAMP meeting YouTubes, the ICD Revision blog and its Facebook site, we have no ETA for the launch of iCAT, the electronic platform through which ICD-11 will be developed. Is iCAT on schedule and will ICD-11 Alpha Draft be ready for May 2010 or is the WHO revision of ICD slipping, too?

CFS Research Foundation: CFS/ME – XMRV Is there a connection?

Shortlink: http://wp.me/p5foE-2w0

Prefaced with Notes by ME agenda:

The Chief Executive of the MRC, Sir Lezek Borysiewicz, is to step down in 2010 ( Source: ME Association News page ).

Dr Tim Harrison PhD, DSc, FRCPath. is a Trustee of the CFS Research Foundation and member of the CFSRF Research Committee.

Professor Stephen T. Holgate FMedSci, MRC Clinical Professor of Immunopharmacology, University of Southampton is a member of the CFS Research Foundation’s Research Committee.

Professor Holgate chairs the MRC’s “CFS/ME Expert Panel”.

Dr Jonathon Kerr is a member of the MRC’s “CFS/ME Expert Panel”.

Dr Paul Kellam BSc PhD, Department of Infection, University College London is also a member of the CFS Research Foundation’s Research Committee and one of the project supervisors for the UCL PhD Project: Project title:

A role for XMRV in human disease  Division of Infection & Immunity, University College London: Project Supervisors: Prof G Towers; Dr P Kellam

http://www.findaphd.com/search/showproject.asp?projectid=18971

—————————–

http://www.cfsrf.com/index.html

CFSRF Newsletter

CFS/ME – XMRV Is there a connection?

It is likely that you will have heard or read about the interesting work being carried out by Dr Judy Mikovits and her team at the Whitmore Peterson Institute in Reno, Nevada to see if the retrovirus XMRV (exenotrophic murine leukaemia virus-related virus) might be associated with CFS/ME.

This research has been given tremendous coverage by the media throughout the world and while anyone suffering from CFS/ME must feel a degree of excitement we must caution restraint. A good deal more work needs to be done before too many claims can be made as to the relevance of this virus in CFS/ME.

Recently the retrovirus XMRV was found in the tumour tissue of a subset of prostate cancer patients. Both XMRV positive cancer and CFS/ME have been linked to alterations in a certain antiviral enzyme. The team in Nevada decided to carry out a study to see if this retrovirus might be associated with CFS/ME.

When the team analysed blood taken from 101 CFS/ME patients 68 (67%) tested positive to XMRV genes compared with only 8 (3.7%)out of 218 healthy controls. They stated that their results are consistent with the hypothesis that CFS/ME patients mount a specific immune response to XMRV. The have discovered a highly significant association between XMRV and CFS/ME.

The research associating XMRV with CFS/ME leaves many questions to be answered. First, it will be necessary for the study to be repeated. Over the years there have been claims for other retroviruses in other illnesses which have come to nought so it is essential that this research is found to have been concluded correctly and for the conclusions reached to be confirmed in independent studies around the world.

We have to ask the question is XMRV a cause or factor in the pathogenesis of CFS/ME oe a passenger virus in the immunosuppressed CFS patient population. Several other viruses have been linked to CFS/ME, for instance the Epstein-Barr virus, enteroviruses or herpes viruses, so we must ask what is their relationship to XMRV and the presence or absence off theses viruses.

Another question must be to ask if the virus XMRV causes CFS/ME or is it just more common in people with the illness.

In the USA the National Institutes of Health (NIH) have taken this research very seriously. They have called meetings of different departments to discuss the implications of these findings, and they and various groups throughout the world are currently setting out to determine whether this association can be confined for CFS/ME patients in Europe and other countries. They have also made a grant of $2 million to take the research further.

Dr Jonathan Kerr and Dr Judy Mikovits have been awarded $2 million from the NIH to study the disease mechanisms in CFS/ME. $1 million has been awarded to the research team in Nevada, the other $1 million has been awarded to Dr Jonathan Kerr at St George’s University of London, the scientist well known to all the supporters of the CFS Research Foundation who carried out the research which discovered 88 genes which were abnormal in CFS/ME patients but remained normal in healthy people. Dr Kerr will study CFS/ME patients to identify important genes which are turned on and off, proteins in the immune system (cytokines) and mutations in the DNA. Some of these American patients have developed Mantle Cell Lymphoma (MCL) after many years of having CFS/ME; these patients will also be included.

The CFS Research Foundation tackles some of the questions.

In spite of the large grant which Dr Jonathon Kerr has received from the NIH the Research Committee has decided that it is imperative that we know if UK and USA patients are infected with XMRV. So the Foundation is to fund a study to establish whether there is a relationship between XMRV and CFS/ME by testing samples from the UK and the USA. Dr Jonathan Kerr and Dr Kate Bishop, who is working at the national Institute for Medical Research in London, are planning to examine patients with CFS/ME and match comparison groups. They will test for the virus itself as well as for the immune responses to this virus. It is of course, vitally important to confirm or refute the finding recently published in the USA.

The Gene Work Continues

While this work is causing such excitement the work of gene expression continues. Of the 88 genes which are abnormal in the CFS/ME group but normal in the control group, Dr Kerr found that these genes could be divided into 7 subtypes. What was so interesting was that theses subtypes were associated with distinct differences in their clinical patterns and severity. Each of these subtypes had a different list of genes which were abnormal.

In a further study Dr Kerr tackled a problem which always causes great concern to CFS/ME sufferers and their families and friends. For years there has been dissension among doctors and scientists as to whether CFS/ME patients were suffering from endogenous depression. Many sufferers felt that this was holding up scientific research. Dr Kerr tested the genes of people with endogenous depression and compared them with the genes of 29 healthy blood donors. Gene levels in the endogenous depressed patients were similar to those in normal controls, but, importantly they are different from the CFS/ME patients.

Dr Kerr and his team are currently extending the previous findings by including a larger number of well-defined patients. These investigations are being conducted on a blinded basis in order to ensure that there has not been any potential bias on the technical aspects of the study. The samples have recently been collected by Dr Tim Harrison, a Reader in Molecular Virology at University College London Medical School, who visited St George’s Hospital to prepare the blinding. The samples were placed in tubes, each one coded, and then frozen. Dr Harrison will keep the code, and no one else will know it until the time set for unblinding.

You will see that this team will have made sure that their findings are accurate. This contrasts with some previous attempts carried out by other groups on a purely empirical treatment methods that have no firm scientific basis. The research being conducted at the present time by Dr Kerr and his team may well result in not only a reliable diagnostic test but also the initial steps for appropriate therapy based on firm scientific data.

The Future

The outlook for CFS/ME research has never been brighter. Increasingly, doctors and scientists are believing that this is an organic disease which need organic research. The paper from Nevada suggesting that the retrovirus XMRV might be associated with CFS/ME has caused great interest and scientists throughout the world have been attempting to repeat this study. Whether or not it is confirmed we already know that virus infection is important in CFS/ME.

We have some encouraging news from the Medical Research Council (MRC). For years people with CFS/ME, their relations, friends and some research scientists have been frustrated by the MRC’s concentration on psychiatrists when conducting research into this illness. This has now changed. The Chief Executive of the MRC, Sir Lezek Borysiewicz is anxious that CFS/ME research should go ahead in a wide field. This must be the best possible news.

The Foundation is seeking new studies of a high standard. We shall have to re-double our efforts to produce these studies and we hope we can receive some part funding from the MRC. We see the possibility of our research expanding and producing even more radical results as it has in the past. The speed at which we can go forward is up to all of us. We can now look to the future with even greater hope.

Anne Faulkner, Honorary Director

Statements of Concern about CBT/GET provided for the High Court Judicial Review of February 2009 M Williams

Shortlink: http://wp.me/p5foE-2vO

Statements of Concern about CBT/GET provided for the High Court Judicial Review of February 2009

Open PDF MS Word document: Statements of Concern for High Court

http://www.meactionuk.org.uk/Statements-of-Concern-for-High-Court.htm

http://www.meactionuk.org.uk/Statements-of-Concern-for-High-Court.pdf

Margaret Williams

12 December 2009

This material has been remove by the editor of ME agenda since it contains references to ongoing formal complaints lodged by the Claimants “against their own former solicitors and barrister; initially, both Leigh Day & Co and the Head of Chambers at One Crown Office Row” and a complaint to the Bar Council Standards Board.