Which patient organisations were involved in the development of the SMILE pilot study?

Which ME and CFS patient organisations were involved in the development of the SMILE Lightning Process pilot study in children 12 to 18 years?

Shortlink: http://wp.me/p5foE-3c8

In her response to the ME Association, Joan Kirkbride, Head of Operations, NRES, has said:

Given that this treatment is currently available, ME Association survey data suggests it has a similar profile to other therapies and the split opinions in the ME community (this study has the support of particular ME charities who have also been involved in its planning), we feel that a fair way forward is to seek the responses of the researchers, sponsor and the ME charities involved in the development of the study before asking the REC to review its favourable opinion. We also note that in this project, subjects will not be deprived of what is current care in this clinic. Research participants will receive this intervention in addition to their standard treatment.

It is already known from the SMILE Research Protocol document that AYME has a seat on the External Advisory Group. But Ms Kirkbride’s statement suggests that more than one patient organisation may have been involved in the planning and development of this controversial pilot study.

On 24 August, I had written to Sir Peter Spencer (CEO, Action for M.E.) with a query in relation to two published position statements issued by the organisation on the proposed Lightning Process pilot study:

I had asked:

[…]

To date, there is virtually no information in the public domain about the proposed study design and methods and the research protocol is not expected to be published until the end of this month.

a) What is Action for M.E.’s understanding of what will be applied to the children during the life of the pilot study and by whom?

Where has it obtained the information on which it has based its decision to support this pilot study and to support any decision by the ethics committee(s) to grant a “favourable opinion”, ie, to approve the application?

b) Would Action for M.E. please set out what information it has relied upon in order to inform its position on this pilot and whether the organisation has made any approaches to the researchers or to any other body to obtain information about the proposed study over and above the press release, and what was the outcome of any approaches made?

Sir Peter Spencer’s response (24 August):

Our position derives from our detailed reading of the MRC Ethics Guide for medical research involving children and from our understanding of the role of any ethics committee in satisfying itself that appropriate independent arrangements are in place to ensure patient safety.”

Action for M.E. has not seen the research protocol for this proposal and has no detailed knowledge of the way in which this trial would be conducted if approved.

We do, of course, want to see research into LP in adults too – but as children are already seeing LP practitioners, before the process has been subject to research published in respected peer-reviewed journals, we can see a case for investigating if it is feasible within the Ethics Guide to set up a controlled trial.

Yesterday, 28 October, I submitted a request for information to the University of Bristol’s Information Rights Office and will update when this request has been fulfilled.  I have asked for:

1] The names of all patient organisations who have been involved in the planning/development of the SMILE pilot study.

2] The names of all members of the External Advisory Group and the organisations with which they are associated, where applicable.

Key SMILE documents

SMILE Research Protocol

http://www.bristol.ac.uk/ccah/research/childrencomplexhealthneeds/chronic-fatigue/smilestudydocuments/smprotv6final.pdf

Open here: smprotv6final

Research Ethics  Application Form

http://www.bristol.ac.uk/ccah/research/childrencomplexhealthneeds/chronic-fatigue/correspondencewithethics/recfrmrfs.pdf

Open here: recfrmrfs

All published SMILE documents in this post:

Specialist Medical Intervention and Lightning Evaluation documents (Lightning Process pilot study – children [now aged 12 to 18] with CFS and ME)

Countess of Mar: Questions for Written Answer: Lightning Process pilot study ethical approval

Countess of Mar: Parliamentary Questions for Written Answer: Lightning Process pilot study ethical approval

Shortlink: http://wp.me/p5foE-3bG

http://www.publications.parliament.uk/pa/ld201011/minutes/101022/ldordpap.htm

House of Lords Business

Questions for Written Answer [House of Lords]

Tabled on 21 October and due for answer by 4 November.

[…]

The Countess of Mar to ask Her Majesty’s Government what assessment they have made of whether the decision by the South-West Research Ethics Committee to approve a pilot research study into the effects of the Lightning Process on children is consistent with the ethical guidance issued by the Medical Research Council to the effect that clinical trials should only include children where the relevant knowledge cannot be obtained by research on adults, and that research involving adults cannot provide the same benefits. HL3014

 

Related material

Children should not be used as guinea pigs: Prof Robin Gill, Church Times (Lightning Process Pilot study): http://wp.me/p5foE-3ak

House of Commons: Written answers and statements: Phil Parker Lightning Process: http://wp.me/p5foE-39J

Hansard Citation: HC Deb, 11 October 2010, c87W

11 Oct 2010 : Column 87W

Health
Phil Parker Lightning Process

Written answers and statements, 11 October 2010

Annette Brooke [Mid Dorset and North Poole, Liberal Democrat]: To ask the Secretary of State for Health what representations he has received on the research and development of the Phil Parker Lightning Process.[15725]

Paul Burstow [Minister of State (Care Services), Health; Sutton and Cheam, Liberal Democrat]: The Department has received representations, from individual members of the public and on behalf of chronic fatigue syndrome/myalgic encephalomylitis stakeholder groups, on research proposals associated with the Lightning Process.

————–

Annette Brooke, MP, is Vice-chair of the newly reformed APPG on ME and has been active in a number of Parliamentary Public Bill Committees (formerly known as “Standing Committees”) representing the rights of children and families:

http://www.theyworkforyou.com/mp/annette_brooke/mid_dorset_and_north_poole

Invest in ME submission to DSM-5 draft proposals

Invest in ME submission to DSM-5 draft proposals

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

Invest in ME submission

The American Psychiatric Association has recently called for comments to be forwarded regarding their draft proposal for DSM-V (Diagnostic and Statistical Manual of Mental Disorders (DSM) is the standard classification of mental disorders used by mental health professionals in the United States and contains a listing of diagnostic criteria for every psychiatric disorder recognized by the U.S. healthcare system).

Included in DSM-V is a section entitled Complex Somatic Symptom Disorders.

Considering that psychiatrists in the UK have caused such harm to people with ME and their families over the past generation Invest in ME decided that input needed to be made to the APA regarding this section.

Below is Invest in ME’s response – submitted on 19th April 2010.

The CSSD criteria are described here –

[Content superceded by third DSM-5 draft criteria.]

The link to the APA web page – entitled DSM-5: The Future of Psychiatric Diagnosis is at –

http://www.dsm5.org/ProposedRevisions/Pages/proposedrevision.aspx?rid=368  

Submission – to the American Psychiatric Association on DSM-V

Invest in ME is an independent UK charity campaigning for bio-medical research into Myalgic Encephalomyelitis (ME or ME/CFS), as defined by WHO-ICD-10-G93.3 – (also referred to as Chronic Fatigue Syndrome (CFS) – although in this letter we shall use the term ME/CFS).

Even though we are not mental health professionals or represent people with mental health disorders we feel it important to comment on the draft proposal of DSM-V.

This response should be seen against the backdrop of the devastation caused by some psychiatrists in the UK regarding their treatment of people with ME/CFS and their promotion of false perceptions about the disease to the public, healthcare authorities and government.

When a generation of patients have been adversely affected by misinformation promoted by a section of psychiatrists in the UK and when the field of psychiatry has been brought into disrepute by these same psychiatrists then it is of paramount importance that the American Psychiatric Association are aware of the dangers inherent in establishing incorrect categories of disorders which are based on poor science, vested interests or which do not serve the patients for whom they must surely be priority in all healthcare provision.

We are especially concerned about the criteria described in the new category of Complex Somatic Symptom Disorder which seems to lump together many illnesses. It cannot be helpful for clinicians or researchers to have such a variety of patients under one category especially when very little is known of the pathophysiology of these conditions placed in this category.

In the CSSD Criteria B there are terms used which are subjective and not measurable – such as “health concerns” and “catastrophising”.

Based on our experience with the treatment of an organic illness such as ME/CFS our concern is that there is a great danger of mis- or missed diagnoses when looking at this category and its diagnostic criteria.

Not all physical illnesses can be easily determined without extensive investigations and this category may allow clinicians to miss brain tumours, rare cancers and other illnesses which are difficult to diagnose.

The criteria are very vague and allow too much subjectivity.

In fact, ME/CFS could mistakenly be placed in this category if one were to ignore the huge volume of biomedical research and evidence which shows it to be an organic illness and if one were to use only the broad CSSD criteria to diagnose.

Such an action would be a major and costly mistake.

The patients we are concerned with suffer from Myalgic Encephalomyelitis which is a neurological disease but all too often these patients are being treated as if they had a somatoform illness.

Parents of children with ME are restricted in visiting their severely ill children in hospital or worse still the children are taken away from their families as the healthcare professional believes it is the family that is keeping the child ill.

Severely ill grown ups with this disease are denied usual medical care and threatened with sectioning if they are too ill to care for themselves and ask for help.

This not only sets patient against healthcare professional but also is a waste of resources and of lives. In the UK the profession of psychiatry also suffers as psychiatrists are often derided as uncaring, unscientific and unprofessional. The possibility of litigation ensuing against psychiatrists who cause such damage should also not be forgotten.

A broad unspecific category such as the proposed Complex Somatic Symptom Disorder does not help patients who need an honest and clear diagnosis. Any illness lacking a diagnostic test is in danger of being put into this non specific category which helps no one.

We are at least thankful that the APA has not attempted to repeat the major mistake being made by prominent UK psychiatrists in attempting to classify Myalgic Encephalomyelitis in amongst Complex Somatic Symptom Disorders.

Such a course of action would create another source of conflict between patients and the field of psychiatry and lead to unnecessary loss of health, potential loss of life and possible legal actions being taken against those professional organizations and/or individuals who use incorrect guidance for their diagnoses,

Yours Sincerely,

Kathleen McCall

Chairman Invest in ME
Charity Nr 1114035

Invest in ME
PO Box 561
Eastleigh SO50 0GQ
Hampshire
England

US Federal Chronic Fatigue Syndrome Advisory Committee: Minutes of October meeting

The Minutes of the October 2009 meeting of the US Federal Chronic Fatigue Syndrome Advisory Committee (CFSAC) are now available

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

CHRONIC FATIGUE SYNDROME ADVISORY COMMITTEE (CFSAC)

http://www.hhs.gov/advcomcfs/

Meeting

Thursday, October 29, 2009
9:00 a.m. to 5:00 p.m.

Friday, October 30, 2009
9:00 a.m. to 4:00 p.m.

Room 800, Hubert H. Humphrey Building
200 Independence Avenue, SW
Washington, DC 20201

The document minutes the proceedings of the Chronic Fatigue Syndrome Advisory Committee (CFSAC) Meeting held on October 29-30, 2009.

Download PDF version: http://tinyurl.com/yjarxlf or open here on ME agenda: CFSAC meeting 29.10.09

HTML version: http://www.hhs.gov/advcomcfs/meetings/minutes/cfsac102909min.html

 

Access a podcast video of entire meeting proceedings for Day One and Day Two at:

Day One: http://videocast.nih.gov/Summary.asp?File=15408

Day Two: http://videocast.nih.gov/Summary.asp?File=15409

[Video transmission has Auto Subtitles. RealPlayer required]

RiME: APPG on ME Legacy Paper

RiME: APPG on ME Legacy Paper

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

Related material:

The next All Party Parliamentary Group on M.E. will meet in Committee Room 18, House of Commons, between 1.30 and 3pm, Wednesday 10 March 2010.

Agenda meeting 10 March 2010

Meet up informally for pre-meeting coffee and chat at the Jubilee Cafe from 12.15pm.

APPG on ME Legacy Paper can be downloaded here: APPG Legacy Paper 26.02.10

Campaigning for Research into ME (RiME)  www.rime.me.uk 

APPG on ME Legacy Paper

Below are (1) RiME’s submission (2) the latest Legacy Paper taken off AfME’s website.

If you have any comments, write to tristana.rodriguez@afme.org.uk

Good Wishes, Paul

RiME Submission 20/11/09

The APPG on ME 1999-2009 has been disappointing. RiME doesn’t feel it has been fighting the corner of people with the illness described by ICD-10 G93.3; rather, it has been more a vehicle for promoting Government policy.

Central to this view is the Group’s position on matters of nomenclature and classification; its imprecise and cavalier attitude, in this respect, will become clear as the text unfolds…

1999 – 2005 The Wright Years

During this period, the composite term ‘CFS/ME’ has been used. It is used, Tony Wright MP Chair of APPG said, because it is the official term used by the Department of Health and Chief Medical Officer. Meetings were dominated by the CMO/MRC Reports (not about G93.3 ME) which used ‘CFS/ME’ and the type of treatments they recommended, notably GET and CBT. Mr. Wright said that GET/CBT benefit people with ME; the basis for his view – York Review 1 (not about G93.3 ME). Mr. Wright has connected the clinics set up following the CMO Report to the causation of ME. And re. the MRC funded PACE Trials, he has supported the use of the Oxford Criteria.

The APPG was a ‘closed-shop’ at this time. And it invited to its meetings parties favourable to the CMO Report (there is a widespread feeling that the APPG is biased toward AfME and the MEA). Those who didn’t support the CMO Report eg RiME, 25% Group, MERGE, Hooper et al. weren’t invited.

The pivotal issue of biomedical ME research was neglected.

A lot of ME parties wrote to Mr. Wright with concerns; some communications were inadequately answered; others not answered at all.

For a more detailed appraisal of the above, see RiME website – Petition to Committee on Public Standards re. Conduct of APPG on ME 2005.

APPG 2005-9 The Turner Years

In July 2005, Tony Wright resigned as Chair and was replaced by Dr. Des Turner MP.

Same old, same old…

At the November 2006 Dr. Turner circulated a document which said the APPG does recognise the G93.3 code. Does it?

In the Autumn of 2005 we discovered that the Sussex Group had hosted a meeting involving Dr. Turner, AfME and the MEA. And that a business plan for the APPG had been discussed involving issues such as supporting the development of the NHS services; each of the three ME organisations in attendance have demonstrated support for the clinics set up following the CMO Report.

At the next APPG meeting November 2005, representatives from AfME and the MEA were invited to speak about the clinics, which they did favourably.

More time has been awarded to the clinics than any other issue. Recent meetings, of course, have been to do with the NHS Inquiry, which is being chaired by Dr. Turner. In the same vein as Mr. Wright, Dr. Turner seems well-disposed toward the CMO report and the clinics. At the APPG meeting 2/7/08, he said he expected the inquiry would be taking evidence on progress (? – ed.) made since the CMO Report in January 2002 (is Turner not prejudging? – ed.). And he signed the Gibson Report whose authors said they were extremely pleased with the advent of these centres and hoped they will be maintained and rolled out (the Report said they were to his [Wessely’s] model).

In short, a similar pattern…

Meanwhile, the matter of publicly funded biomedical ME research continues to be neglected.

Returning to the caucus meeting Autumn 2005: RiME wrote to the Parliamentary Commissioner, and Dr. Turner was asked to explain his actions. It seemed to be primarily as a result of this meeting that APPG meetings got opened up to the public.

Having attended 10 meetings now, I would say that a number of meetings have been poorly chaired with persons expressing legitimate concerns not being well treated eg the July 2007 meeting where the Chair Des Turner allowed Paul Davis RiME to be interrupted and heckled (while I was speaking he appeared to sit there smiling); concerns regarding the way I was treated and the way the meeting was chaired were voiced at the next meeting (January 2008).

That meeting was little better. Chaired by Dr. Ian Gibson MP, I was again interrupted and heckled; and, again, the Chair did not keep control or act fairly. In each case the APPG Code of Practice was not implemented. At the latter meeting, a person presented a petition signed by over 500 raising concerns about the clinics. The Chair asked whether or not the matter should be included in the minutes.

Again, a lot of letters sent to the Chair with concerns have gone unanswered.

Re. the issue of the clinics: RiME has raised the concerns of ME patients at several meetings (see RiME website, APPG meetings). Notable concerns: the clinics are not about G93.3 ME; criticism of GET/CBT.

Secretariat (AfME and MEA):

(i) Minutes to meetings: The Secretariat has disappointed. One notable example was the July 2007 meeting where (a) RiME’s comments were reported inaccurately (b) important points made by RiME were omitted altogether (see RiME website – APPG meetings). But there are others – Doris Jones 25% Group said at the next meeting that controversial subjects are not always included in the minutes.

(ii) ME patients feel that the influence of AfME and the MEA within the APPG is disproportionate to the number of ME patients they represent (probably not 5% between them). It is apparent that their role within the APPG is not purely secretarial but has been to do with policy matters.

(iii) ME patients fear that their disproportionate level of influence may extend to the Legacy Paper. Other parties who have attended APPG meetings regularly and contributed must be allowed their fair say, and this must be demonstrated in the final document.

Venue for Meetings

Meetings seem to be in just about the most inaccessible part of the Palace of Westminster, making it difficult for disabled persons, especially those in wheelchairs. I have requested a number of times that meetings be held at Portcullis House (venue for April 2006 meeting) but nothing changes; moreover, I have not been told why meetings can’t be held at Portcullis House.

Summary

We deem the best criteria for adjudging the APPG 1999-2009 is to simply ask the question, ‘are ME patients better off now?’ Answer: No. Indeed, many would say they are worse off. The text above has focused upon concerns re. services and research. But are there not still problems in other areas such as welfare and child protection?

If those running the APPG were to counter by saying, we are essentially about awareness, not lobbying – then two questions come to mind (1) is awareness enough? (2) has the APPG been portraying an accurate picture eg has it painted too rosy a picture re. the clinics?

RiME recommends:

1. A fresh start with five new officers following 2010 General Election (it would seem there will be many new MPs entering Parliament).

2. An independent Secretariat.

3. Detailed attention to matters of nomenclature and classification.

4. The focus to be on biomedical research.

Paul Davis RiME rimexx@tiscali.co.uk    www.rime.me.uk 

AFME Website March 2010

APPG on ME Legacy Paper (2005/6-2009/10)

Introduction

The All Party Parliamentary Group on M.E. (M.E. as defined by the World Health Organisation) will formally break up for the forthcoming General Election (date to be confirmed.) The Group leaves the following legacy paper to the APPG that will be reconstituted after the election, so that the work that has been carried out over the last four years will be clear and may continue as seamlessly as possible.

The APPG operates a code of practice, circulated November 2006 (see Appendix.)

Background

1. APPG on ME Inquiry into NHS services

A Report to the Chief Medical Officer in January 2002 led to the announcement by Government in May 2003 of an investment of £8.5m over two years in a centrally planned programme to set up new clinical services for people with CFS/ME in England. In 2009, the APPG held an inquiry into NHS services in England.

The inquiry’s interim report was released on 3 December 2009, making 11 recommendations to improve health and welfare services for people with M.E. The final report will be published on 10 March 2010. The recommendations are unchanged.

Issues to address:

a) How to follow through recommendations.

2. Group on Scientific Research into Myalgic Encephalomyelitis (M.E.) or GSRME

This Group was chaired by Dr. Ian Gibson and was constituted as a Registered Group which was not on the Approved List. The Group was composed of Parliamentarians who were for the most part members of the APPG on ME, and the formation of this group arose out of the work of the APPG on M.E.

The GRSME report dated November 2006 concluded that the research areas defined by the CMO Report in 2002 had not been addressed. The report’s final conclusion was that further research is the single most important area in this field and that the UK should take this opportunity to lead the way in encouraging biomedical research into the potential causes of CFS/M.E.

Many members of the M.E. community did not consider that the report went far enough by simply calling for parity between public money spent on psychological and biomedical research into M.E., as M.E. suffers and carers wanted public research money spent only on biomedical research.

Ongoing work / areas of concern

1. Research

Following the CMO’s Report in 2002 the Medical Research Council (MRC) set up a Research Advisory Group in 2003 which was made up of independent scientists and patient representatives, to develop a research strategy.

The advisory group made a number of recommendations, in particular that in the short term the research community should be encouraged to develop high quality research proposals addressing case definition, understanding of the symptoms of CFS/ME, and new approaches to disease management. A ‘Highlight Notice’ was placed to ensure that research into CFS/ME would receive priority funding. This approach has not succeeded in attracting enough high quality research proposals that have been funded by the MRC, and a new initiative is needed.

In 2008 the MRC set up a new Research Expert Group under the leadership of Prof. Steven Holgate of Southampton University to review current research, identify research opportunities and encourage new research towards understanding the basis of CFS/ME.

Issues to address:

a) Review the work of Prof. Holgate’s expert group on research

b) Monitor future allocation of funds for bio-medical research into CFS / ME and the proportion spent on research into paediatric and the most severely affected M.E. patients.

c) Press for the establishment of at least one specialist M.E. Research Centre to provide a multidisciplinary biomedical research environment to support and provide access to appropriate clinical, educational and support services based on an enhanced understanding of the multisystem organic symptoms suffered by those with M.E. and the disabilities they produce.

2. National Institute for Health and Clinical Excellence (NICE) guidelines

NICE published Guideline on the diagnosis and management of chronic fatigue syndrome/myalgic encephalomyelitis (or encephalopathy) in adults and children, in August 2007.

The Guideline has been criticised by some patient groups as being not fit for purpose and was the subject of a Judicial Review at the High Court in London, February 2009. This aimed to overturn the Guideline’s recommendations for the treatments of Cognitive Behavior Therapy, CBT and Graded Exercise Therapy (GET) as the only effective treatment for CFS/ME, and to open up biomedical treatments precluded by the Guideline. The Judicial Review found in favour of NICE.

The NICE CFS/ME Guideline will be reviewed by NICE from August 2010.

Issues to address:

a) The Guideline focuses on chronic fatigue and not M.E. as defined by the World Health Organisation. Diagnostic criteria used in the Guideline are too broad. The Canadian Expert Consensus Panel Clinical Case Definition for ME/CFS of 2003 may be a useful starting point

b) NICE places an over-emphasis on randomised control trial (RCT) evidence over and above evidence from expert clinicians and especially patients.

c) Some M. E. sufferers and carers points to the interpretation and implementation of the Guideline as having an essentially “psychiatric” approach.

d) The NICE Guideline should be be reviewed in the light of emerging viral research, which should include the possibility of establishing testing and treatment for Xenotropic Murine Leukemia Retrovirus (XMRV), herpes and enteroviruses and other infections which may be found in people with M.E.

e) The review should revisit NICE’s management guidance on ME/CFS, in particular the mounting evidence for the need to broaden the range of appropriate therapies beyond CBT and GET, and to specify that all such therapies should be delivered by specifically ME/CFS trained professionals.

3. Welfare benefits and social care

M.E. suffers who are too ill to work and their carers, who may also be unable to work as a result of their commitments as a carer, are exceptionally vulnerable within the welfare benefits system. They face a number of very significant problems and hurdles in being able to successfully access, claim and retain their state benefit entitlements including Disability Living Allowance (DLA), Carers Allowance (CA, where applicable), Attendance Allowance (AA) Incapacity Benefit (IB) and more recently, Employment and Support Allowance.

There are serious issues with the Department for Work and Pensions (DWP) and Jobcentre Plus staff. Doctors and assessors in subcontracted medical services and decision makers often do not understand M.E.

Problems involved in benefit-claiming, assessment and decision-making have been illustrated by the high number of awards made at the appeal stage after rejection of the first claim.

Current social care proposals will have a significant impact on people with long-term conditions, in the short term and as they get older. The current economic climate threatens the provision of welfare support to those who need it most.

Issues to address:

a) The introduction of the new Welfare Reforms and how these affect people with M.E. In particular the impact and effectiveness of Employment and Support Allowance (ESA),Work Focused Interviews and Health Related Assessments.

b) The need for appropriate support from Government and employers for people with M.E. and other “fluctuating” conditions who want to stay in or return to work.

c) The impact of National Care Service proposals and the effect of these changes for people with M.E. eg. personal budgets and direct payments of personal allowances such as Disability Living Allowance (DLA) and Attendance Allowance (AA) to Social Services.

d) Improving knowledge about M.E. within local authority Social Services departments, the Department for Work and Pensions (DWP), Jobcentre Plus, subcontracted medical services.

e) The need for a fairer set of criteria / guidelines for CFS/M.E. claimants / patients to be issued by DWP and the Department of Health.

f) Review the current Occupational Health Guideline on CFS/ME used by the Department of Health for its own staff which acts as a benchmark in the health insurance industry.

4. Child Protection Issues

Some children with M.E. and their families are caught up in unnecessary, damaging and distressing child protection conferences and care proceedings because there is misunderstanding about M.E. amongst teachers, social workers, health workers and other professionals. Guidelines published by the Royal College of Paediatrics and Child Health in 2004 have largely gone unnoticed and have not had any real impact on the situation.

Issues to address:

a) Consider the needs identified by children and young people’s ME charities for:

(i) The Department for Children, Schools and Families to alert Social Services professionals to the frequency of misunderstandings in cases of M.E. There should be an investigation into the cost of pursuing these cases.

(ii) All parents under suspicion of putting their child at risk should be informed of their rights, and given information clarifying child protection procedures and details of organisations which can support them

(iii) Directive to be issued by the Royal College of Paediatrics and Child Health for all paediatricians to refer to the college’s guideline when treating children and young people with M.E.

(iv) M.E. to be included in the training of all GPs and paediatricians.

(v) M.E. education for all teaching professionals.

5. Mental Health Act and Mental Capacity Act – the implications for M.E.

Although the Government made important concessions to protect patients and their families, there have been concerns that the Bill might increase the number of people sectioned for refusing treatment. There was a risk of over-use of community treatment orders and there were concerns about the powers given to clinicians.

Issue to address:

a) Plan a discussion at a future APPG meeting inviting witnesses and considering documents and case-histories.

6. Occupational Health and NHS Plus guidance

The APPG played an active role during 2007 in obtaining changes to the NHS Plus guidance on occupational health that is aimed at employees, employers and occupational health staff.

Issue to address:

a) Work related issues, including strategies for returning to work on a flexible or part time basis, and ill health retirement for those who are unable to return to work, continue to cause considerable difficulties for people with ME/CFS.

Programme of work

1. Consider how to take forward issues to be addressed in 1-6 above.

2. Consider future opportunities for adjournment debates (last suggested July 2007; attempt unsuccessful)

3. Consider future opportunities for Early Day Motions (last suggested 2007 but deferred)

4. Possible APPG speakers:

· Chief Executive of the Medical Research Council (last spoke April 2006)

· Chair of the NHS CFS/M.E. Clinical & Research Network and Collaborative (CCRNC) Conference (last spoke Nov 2005)

· Secretary of State for Work and Pensions (previously spoke Nov 2006, Oct 2008)

· Chairman of the National Institute for Health and Clinical Excellence (last represented Feb 2007)

· Secretary of State for Health Services (last represented by Parliamentary Under Secretary of State for Health Services, January 2008)

· Chairman, Care Quality Commission

· Inspector of Social Services

· Human Rights Lawyer (relates to Mental Health Act and Mental Capacity Act)

· Representative from mental health charity (regarding sectioning rights)

5. Encouraging more MPs and members of the House of Lords to join the APPG and take an active part in the proceedings

Structural issues

The new APPG on M.E. may consider the following in order to review the new Group’s structure :-

1. Reviewing the Terms of Reference for the APPG on ME.

2. Reviewing the “Code of Practice for the APPG on M.E.” (See appendix.)

3. Drawing up a structured and prioritised Work Plan and programme of work, and an annual schedule of meetings each year, to accompany the Work Plan, which the APPG ought to revise and review annually at the APPG’s AGM. The Work Plan should be able to be adjusted at each APPG meeting to meet the prevailing needs of the day, and there should be an item on the agenda of APPG meetings entitled “Work Plan” for this purpose.

4. Consider making available a slot on the agenda of its meetings for members of the Public to raise items of concern in accordance with the terms of reference of the APPG on M.E.

5. Should the APPG on ME adopt the specific political objective of seeking parity between M.E. and other neurological and immunological medical conditions such as Multiple Sclerosis and HIV/AIDS?

6. The current Group has committed itself to using the World Health Organisation (WHO) Classification of M.E., for its work. However, it has not committed itself to the use the WHO International Classification of Diseases, ICD Classification Code for M.E. listed in the Neurological Chapter of the WHO ICD – 10 at G93.3, which is the single code the WHO uses for M.E. The new Group may wish to revisit this issue.

APPENDIX: Code of practice for the APPG on M.E.

1. The APPG and the Secretariat (Action for M.E. and the M.E. Association) accepts the WHO Classification of M.E. as a neurological condition and welcomes the recognition by the Department of Health of M.E. as a long term neurological condition.

2. The APPG strives to support the improvement of health, social care, education and employment opportunities for people affected by M.E.

3. The meetings of the APPG are held in public and it is expected that attendees will adhere to the principles of best practice in meetings:

Attendees will abide by the APPG Governance Procedures and Practices

This means that the attendees will honour the policies set up by the APPG to govern its own activities, including meeting protocols, committee rules etc. It is anticipated that attendees will follow basic rules of personal courtesy, attendance and being prepared. The APPG and the Secretariat recognise the connection between the behaviour of individuals in meetings and the ability of the APPG to address its business effectively. Attendees will be expected to participate so that APPG business progresses smoothly and efficiently.

· Participants will give apologies ahead of time to the Chair if unable to attend meetings

· The Secretariat will ensure that information is distributed prior to meetings, allowing participants time to read and digest important information ahead of a discussion

· Attendees will honour the authority of the Chair and respect his/her role as the meeting leader. When problems arise with meetings they should be dealt with as procedural issues rather than a personal criticism of the Chair and other officers.

· Participants will engage in debate according to procedures, maintaining a respectful attitude towards the opinions of others whilst making their own point.

· Attendees must express their views clearly when it is their turn to speak and then allow others to express their opinions in turn.

· Attendees must listen respectively to other meeting participants, to the Chair and to other speakers. They must not attempt to silence minority opinions, nor should they talk over others.

· Attendees must not use their mobile phones in meetings or adopt any other bullying tactics.

· Attendees are invited to offer suggestions to the Secretariat or the Chair on how best to enhance the role and function of the APPG.

These guidelines are produced as a method of efficiency. If an individual attendee does not comply with the code the Chair may institute a warning system. The APPG anticipates that debate should be lively but controlled and every effort will be made to hear a wide range of different opinions and elicit the opinions of those who may be inclined to be silent.

Statement from P.A.N.D.O.R.A.: Ryan Baldwin case is an ominous wake-up call

Statement from P.A.N.D.O.R.A.: Ryan Baldwin case is an ominous wake-up call

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

Our very best wishes to Ryan and his family.

Related material:

Baldwin Family website: http://www.bringingryanhome.com/ 

Media:

Mountain Express

Home for good?
Black Mountain couple regains custody of son

by Nelda Holder in Vol. 16 / Iss. 31 on 02/24/2010

Statement from P.A.N.D.O.R.A., Inc.

FOR IMMEDIATE RELEASE

26 February 2010

By Marly Silverman, Founder & President

The case of Ryan Baldwin is an ominous wake-up call of the need for awareness of Pediatric Chronic Fatigue Syndrome

Nelda Holder’s article on young Ryan Baldwin and his family (“Home for good? Black Mountain couple regains custody of son” Mountain Express 2/24/2010) shines a long-anticipated and much needed spotlight on more research, proper diagnosis and treatment options for children and young adults under the age of 18 stricken with Chronic Fatigue Syndrome (CFS).

The sad case of Ryan Baldwin and his family underscores the dangerous lack of understanding as to the serious nature and special care of children with Chronic Fatigue Syndrome, as well as current objective medical research on the illness.

Clearly, as was the case of the Baldwins, government officials need better understanding and awareness of the complexities of this illness that strikes 1 to 4 million Americans including children, teenagers, young adults, adults, and the elderly, according to the Center for Disease Control and Prevention (CDC).”

CFS community advocates for Ryan

In 2009, Pat Fero, director of the Wisconsin CFS-ME association and Jerry Rice, the Baldwin family’s local advocate in their home in Buncombe County, North Carolina brought Ryan’s situation to our attention. County officials had removed Ryan from his family, alleging that his parents have not provided him with “mental health care and access to a pediatrician.”

Along with 23 other patient advocacy non-profit organizations, P.A.N.D.O.R.A. mobilized an awareness campaign that included letters and petitions to North Carolina Governor Bev Perdue, NC State Legislators and NC Federal legislators on behalf of then 16-year-old CFS patient Ryan and his family.

We were elated when Ryan was finally reunited with his family. We were even more excited when Lisa Baldwin, Ryan’s mother, joined P.A.N.D.O.R.A. early this year to help with creating awareness of the issues that surround families with children with Chronic Fatigue Syndrome so that no other family will have to go through “the hell” that the Baldwin family did.”

Pediatric Chronic Fatigue Syndrome Conference Committee Forming

To further address the need for better understanding and awareness of CFS in adolescents, P.A.N.D.O.R.A., a nationally recognized patient advocacy group which stands for Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy, Inc., is creating its first patient and physician CME committee to help plan a conference explicitly dealing with pediatric Chronic Fatigue Syndrome.

The Pediatric Chronic Fatigue Conference aims to provide the medical community and government authorities with the proper training and resources to launch important educational initiatives that will ensure that children with CFS and other chronic pain illnesses and their families will be treated with the respect and care that they deserve.

For additional information about the P.A.N.D.O.R.A. Pediatric Chronic Fatigue Syndrome conference committee, contact Marly Silverman at: contact@pandoranet.info .

About P.A.N.D.O.R.A., Inc- Patient Alliance for Neuroendocrineimmune Disorders Organization for Research & Advocacy P.A.N.D.O.R.A. was founded on July 1, 2002 by Marly C. Silverman, a Chronic Fatigue Syndrome and fibromyalgia patient. Our mission is to raise awareness of the plight of persons with chronic fatigue syndrome, fibromyalgia, Gulf War illness, multiple chemical sensitivities, environmental illnesses, and persistent Lyme disease and advocate on quality of life issues.

In 2008, P.A.N.D.O.R.A in partnership with the Lanford Foundation-Lifelyme, Inc. , established the NeuroEndocrineImmune (NEI) CenterT, a community, patient-driven grass roots project to be based in New Jersey. The NEI CenterT will be the first research center dedicated to understanding and treating chronic neuroendocrineimmune illnesses.

Walson Communications

www.walsonpr.com

TEL: 714-970-2268

Cell: 714-865-4147

Justice for Families News December 2009: John Hemming

Update from John Hemming, MP (Justice for Families)

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

Justice for Families News December 2009

05 December 2009

Apologies for the infrequent newsletters. In some senses we are making more progress in terms of getting systematic change. There have been a lot of media stories and we are not going to try to highlight any.

The most important campaigning issue is that of ensuring that Clayton v Clayton is not reversed. I believe that the government intend to continue increasing openness in the family courts, but the Chidlren, Schools and Families bill has the effect of reversing Clayton v Clayton.

There is an early day motion EDM 325

http://edmi.parliament.uk/EDMi/EDMDetails.aspx?EDMID=39885&SESSION=903

That this House notes that the Government has expressed a desire to increase accountability in the family courts; regrets that the Children, Schools and Families Bill as currently drafted would have the effect of increasing secrecy in the family courts; and calls on the Government urgently to draft amendments to deliver its commitment to accountability.

Please encourage people to write to their MPs to do this.

There has been a slight shift in the Court of Appeal and we have won a few cases there recently. One is this one.

http://www.bailii.org/ew/cases/EWCA/Civ/2009/1210.html

One strand of that is being appealed to the Supreme Court and will be taken to Europe.

The other judgments that we have won have not yet been published.

We are continuing to send cases to Europe.

Our casework for putting cases to the Court of Appeal and European Court has gone up a notch. Julie Haines is coordinating this process.

European Investigation Launched into Family Court Human Rights Abuses

We also now have a rapporteur appointed in the Council of Europe for an investigation into Human Rights in the Family Courts across Europe.

Judicial review into government insanity

An application for judicial review of the government’s policy on the basis that they got the formula wrong for the adoption target has been issued.

————————–

This email is from Justice for Families. The Liberal Democrats have kindly agreed that Justice for Families can use their list server for free. Justice for Families, however, is not affiliated to any political party and the Liberal Democrats are not affiliated to Justice for Families.

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John Hemming blogs at: http://johnhemming.blogspot.com/

Sunday Times: Health and safety snoops to enter family homes

Image and video hosting by TinyPic

“We run your life, so you don’t have to” courtesy Gordon’s Good Idea

Shortlink for this posting: http://wp.me/p5foE-2oj

It was reported, earlier this year, that some local authorities were planning to instruct tradesmen working in the homes of council and housing association tenants to identify and report potential cases of neglect or child abuse.

* NICE Consultation

http://www.nice.org.uk/guidance/index.jsp?action=folder&o=46007

http://www.nice.org.uk/nicemedia/pdf/PUICHomeDraftGuidanceConsultation.pdf

or open here: PUIC Home Draft Guidance Consultation

NATIONAL INSTITUTE FOR HEALTH AND CLINICAL EXCELLENCE PUBLIC HEALTH DRAFT GUIDANCE
Issue date: April 2010

Preventing unintentional injuries in the home among children and young people aged under 15: providing safety equipment and home-risk assessments

From today’s Sunday Times:

http://www.timesonline.co.uk/tol/news/uk/article6917328.ece

Health and safety snoops to enter family homes

Robert Watts  |  15 November 2009

Health and safety inspectors are to be given unprecedented access to family homes to ensure that parents are protecting their children from household accidents.

New guidance drawn up at the request of the Department of Health urges councils and other public sector bodies to “collect data” on properties where children are thought to be at “greatest risk of unintentional injury”.

Council staff will then be tasked with overseeing the installation of safety devices in homes, including smoke alarms, stair gates, hot water temperature restrictors, oven guards and window and door locks.

The draft guidance by a committee at the National Institute for Health and Clinical Excellence (Nice)* has been criticised as intrusive and further evidence of the “creeping nanny state”.

Until now, councils have made only a limited number of home inspections to check on building work and in extreme cases where the state of a house is thought to pose a serious risk to public health.

Nice also recommends the creation of a new government database to allow GPs, midwives and other officials who visit homes to log health and safety concerns they spot.

The guidance aims to “encourage all practitioners who visit families and carers with children and young people aged under 15 to provide home safety advice and, where necessary, conduct a home risk assessment”. It continues: “If possible, they should supply and install home safety equipment.”

The proposals have been put out to consultation and, if approved, will be implemented next year.

Matthew Elliott, of the TaxPayers’ Alliance, said: “It is a huge intervention into family life which will be counter-productive.

“Good parents will feel the intrusion of the state in their homes and bad parents will now have someone else to blame if they don’t bring up their children in a sensible, safe environment.”

About 100,000 children are admitted to hospital each year for home injuries at a cost of £146m.

—————-

See also Daily Mail  |  10 November 2009

Police report pregnant woman to social services over half-decorated home

—————-

See also, in today’s Sunday Times:

http://www.timesonline.co.uk/tol/news/uk/article6917160.ece

Think tank: freeing us from the ring of suspicion

Jenni Russsell  |  15 November 2009

“…In his Scott Trust speech, Cameron picked up on the themes that this newspaper has been highlighting: the hidden damage being caused by the government’s vetting and barring regimes. He was unequivocal about the malign effect that the new Independent Safeguarding Authority (ISA), with its plans to monitor at least a quarter of the adult population, would have on our lives.”

“Many responsible adults would, the Tory leader said, rather abandon volunteering than go through the rigmarole of a vetting procedure. That mass withdrawal would actually reduce the amount of care and love in children’s lives. This is already happening, although no one in government appears willing to recognise it. Ministers are so busy mouthing platitudes, both in public and in private, about “safeguarding children being our most important priority”, that they don’t want to hear or think about what it means for children when grown-ups decide it’s too risky to spend time with them. Ask them about sports or drama groups closing down for fear of breaking regulations, or of teachers deciding it’s too hazardous to organise school trips, and they say blandly that protection must come first.”

“…They don’t want to know about all the quiet and disastrous ways in which society is being reshaped by the constant message that adults can’t be trusted. Evidence has poured into this paper since the issue was raised here two weeks ago. Some came from professionals who cannot afford any misinterpretation of their interaction with children because of what it means for their jobs.”

Read full article here

Image and video hosting by TinyPic“They run your life, so you don’t have to” courtesy Gordon’s Good Idea

Medically Unexplained Psychologising of ME (MUPs) by Peter Kemp

An essay by Peter Kemp orginally published on Co-Cure

WordPress Shortlink: http://wp.me/p5foE-2lq

 

Medically Unexplained Psychologising of ME (MUPs)

Permission to repost

10 October 2009

In this essay I will explore some psychic phenomena that might be relevant to psychologising of illness.

Generalisations cannot practically be made, MUPs is not just heterogeneous from a psychic viewpoint – it is likely to be individual. So I can only explore my impressions and I hope you will read my theories as falling somewhere between the Origin of Speciousness and A Tale of Two Settees.

Use of some terminology has been unavoidable but I include a few definitions and illustrations as ‘Asides’ that I hope will help make the essay accessible to PWME.

Peter Kemp

Acronyms:

PWME = Person (or People) With ME

MUPs = Medically Unexplained Psychologising of ME

 

Medically Unexplained Psychologising of ME (MUPs)

Aside 1

AN ILLUSTRATION OF ‘PROJECTION’

Jack thinks that it would be very bad to be envious; this might be something his parents taught him. He notices envy in other people and condemns them for being envious. The envy that he so often notices might be real or not, it does not matter because it is HIS envy he is seeing. He is Projecting his envy onto other people to try and hide and control it within himself.

WITHDRAWAL OF PROJECTION

Projection is an unconscious process, people are not aware when they are doing it, but if they can become aware of the true source of a problem there may be an opportunity for growth.

One day Jack says to Jill, ‘I think you are envious of Mary’s little lamb’; and Jill says, ‘actually, I love Mary so much I gave her that lamb. I think you are envious because I get on so well with Mary.’ Jack’s theories fall apart and his projection is laid bare. If he is honest and humble enough he can then discover his own envy and stop projecting it. It may help if Jill points out ‘what’s wrong with being envious anyhow? It is part of how I know what I like and what I want’.

Through this uncomfortable experience Jack stops projecting envy and finds that natural feelings of envy can help him to make decisions about what he wants in life.

———————————————

Projected Fear

PWME represent ‘ideal’ subjects for the projection of all sorts of fears, Fear of losing control, Fear of weakness, Fear of illness, Fear of physical inadequacy, and perhaps worst of all, Fear of fear. For some MUPs I suspect that subtler projections and issues arise, such as Fear of being wrong and Fear of being misunderstood. All these fears have their roots in the psyche and are most troublesome when their origins are unconscious and when strongly denied. This may result in odd behaviour that may nevertheless be easily justified, but the justifications do not reveal the true motives behind the behaviour, instead they contribute to their concealment.

To confront fear it must be acknowledged but if it originates from an intense inner conflict it might be that the ego is not ready to withstand it. In these circumstances an internal struggle is maintained to repress some aspects of a complex in order to protect the ego. Enacting these conflicts in the world is a common way of reinforcing defences and avoids addressing the conflict directly. Unfortunately, this never resolves the issue at its source and means that substitute conflicts must constantly be found. As such projecting Fear may be predisposing and initiating; and because projection is an avoidance strategy, it is likely to be a maintaining factor in MUPs.

Withdrawal of Projection

For some people in whom contact with PWME arouses issues with fear, the psyche may seize this as an opportunity for growth. If someone projects fear onto another they may sometimes be able to compare their projection with the actual person. If discrepancies are found then the projection might start to weaken, then the projector has an opportunity to challenge and eventually withdraw the projection.

For example; a person fearful of losing control might project this onto a PWME; if they then realize that the PWME is actually coping well (with what for many people is a terrifying aspect of disability), the projector may think something like; ‘I thought he was weak, but I could not cope so well with such a loss of control’. This represents a stage of withdrawal of a projection as the projector has discovered that the source of the fear is within himself. Such situations might be considered MUPs based on transient / opportunistic factors; and is I suspect, a very common occurrence. Some MUPs might be able to relate to this if they find they vacillate between impatience and respect towards a PWME. This could be a sign that projections are weakening and the source of fear might be discoverable. Continue reading

25% ME Group announces Byon Hyde MD as new Patron and Medical Advisor

The 25% ME Group has announced, today, that US Dr Byon Hyde, MD, is taking up the role of new Patron and Medical Advisor to this organisation for the severely affected.  The Countess of Mar had been a long time Patron to the 25% ME Group but was asked to stand down early this year following the NICE Guideline debacle.

WordPress Shortlink: http://wp.me/p5foE-2kj

25% ME Group  http://www.25megroup.org

PERMISSION TO REPOST

The 25% ME Group is pleased to report the appointment of their new Patron and Medical Advisor.

We are absolutely delighted to announce that Dr Byron Hyde will be taking up the role with immediate effect.

Dr Byron Hyde is leading physician and researcher specialising in Myalgic Encephalomyelitis (ME) and has worked exclusively with ME patients since 1985.

He is the founder and chairman of the Nightingale Research Foundation which is dedicated to explore, understand and treat patients disabled with ME and is at the forefront of the struggle to draw a clear distinction between ME and the current definitions of Chronic Fatigue Syndrome. In 1992 he published the medical reference book still used by researchers internationally “The Clinical and Scientific Basis of Myalgic Encephalomyelitis and Chronic Fatigue Syndrome”.

Dr Byron Hyde is an outspoken critic of the role psychiatry has played in ME. His entreaty that “Psychiatrists should not ever be placed in charge of diagnosis and treatment of M.E. patients” is one we fully support.

Dr Byron Hyde has been instrumental in bringing about recognition of ME as a serious illness and we feel he fully represents the interests and aims of the 25% ME Group. We are proud to have him as our Patron.

We also take great pleasure in announcing our new additional Medical Advisor, Dr Nigel Speight, who, as you will read below, recently departed from AYME. We are extremely pleased to have Dr Speight on board as he is a highly respected medical professional within the ME field and a great advocate for the biomedical view of ME.

Below we have posted resignation letter from Dr Nigel Speight to AYME (Young Childrens’ ME Charity) for your information.

Dear all

I just thought I should inform you officially that after a long and happy association with AYME I have decided to resign as their Patron. Without going into too much detail I would say that over the last couple of years I have become aware that they have changed their position on several areas and that our views have accordingly diverged.

In particular AYME seem to have become more willing to collaborate with the medical and psychiatric establishment in order to appear respectable. This appears to have been the cause of AYME’s relative enthusiasm for the NICE Guidelines, which most of us feel involve an overemphasis on CBT and GET. This compromise seems to have helped the psychiatrists to get a new lease of life.

The result of all this is that AYME appear to have alienated themselves from most of the other ME charities (with the exception of AfME who appear to be taking a similar position). In this controversy I feel more in sympathy with the rest of you.

I have gained the impression that AYME no longer appreciate my opinions and prefer my status as their figurehead to be a largely silent one.

It is a combination of all these factors that has caused me to resign and I am sure you will all understand.

With Best Wishes

Nigel Speight

We are especially delighted to announce the new Patron and Medical Advisor for our Group because as many of you will know, both stand for the true recognition and research of ME (as opposed to including it along with other Chronic Fatigue conditions). They also are firmly opposed to any psychological intervention within the area of ME.

We hope you will be delighted along with us regarding this news and please feel free to report or republish this information within your own publications etc.

With best wishes

Simon Lawrence

Chairperson

25% ME GROUP

21 Church Street
Troon
Ayrshire
KA10 6SQ

enquiry@25megroup.org

www.25megroup.org