APPG on ME Legacy Paper

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Subject: Subject: APPG on ME Legacy Paper

Date: Mon, 8 Mar 2010 15:05:41 +0000

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Campaigning for Research into ME (RiME)

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@...

Good Wishes,

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 Years

During this period, the composite term 'CFS/ME' has been used. It is used,

Tony 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. said that GET/CBT

benefit people with ME; the basis for his view - York Review 1 (not about G93.3

ME). Mr. 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. 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 Years

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

MP.

Same old, same old...

At the November 2006 Dr. 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. , 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. . In the same vein as Mr. , Dr. 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 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. 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 allowed

RiME to be interrupted and heckled (while I was speaking he appeared to sit

there smiling); concerns re. 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 ( important points made by RiME were omitted altogether (see RiME

website - APPG meetings). But there are others - Doris 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.

RiME

rimexx@...

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. 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

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

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.

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.