Meeting 20/4/99                 Meeting 13/5/99             Meeting 8/12/99        APPG list of MP's
Meeting 23/11/99               Speech by Anita Roddam on 23/11/99         Meeting 25/1/2000
AGM, 22/3/2000

All Party Parliamentary Group on M.E.

Minutes of Meeting Held on 20th April 1999


Present:    Bob Blizzard MP, Russell Brown MP, Lord Clement Jones, Yvette
Cooper MP, Christopher Gill MP, Win Griffiths MP, Andy King MP, David
Marshall MP, Peter Pike MP, Ernie Ross MP, Vivienne Russell (for Simon
Hughes MP), Martin Smyth MP, Andrew Stunnell MP, Betty Williams MP,
Tony Wright MP

Guests:    Louise Fish (Action for M.E.), Mavis Moore (ME Association)

Apologies:    Roger Berry MP, Ian Bruce MP, John Burnett MP, Paul Burstow
MP, Judith Church MP, Tom Cox MP, Janet Dean MP, David Drew MP,
Barbara Follett MP, Andrew Hunter MP, Fraser Kemp MP, David Lepper MP,
Peter Luff MP, Steve McCabe MP, Angela Smith MP, Mark Todd MP, Don
Touhig MP, Dennis Turner MP, Malcolm Wicks MP, Phil Willis MP

1.    Tony Wright MP (Chair) welcomed members to the meeting, and introduced the guest speakers, who were to give an introduction to key issues surrounding ME.


2.    The minutes of the meeting on the 2nd March 1999 were passed as a true
record. There were no matters arising.

3. Mavis Moore - Chief Executive of ME Association
History / definition / symptoms / cures

Mavis Moore spoke about how ME affects the brain and nervous system. The usual age of onset was in mid teens through to mid 40s, and there was a slight female predominance.

Estimated that 150,000 had ME in Britain, that the causes were unclear, and there was no one single cure. If first came to public attention in the 1980's as "Yuppie Flu", although the illness goes back much further than that. The first recorded outbreak in the UK was in 1955. ME was ñrst defined in the Lancet in 1956.

There are a whole variety of symptoms. The term CFS is just an umbrella for the condition. It is often triggered by a viral infection. There are various co-factors such as tracing the illness back to an injection, with particular reference to Hepatitis B. Could be genetic, but no one knows for sure. Symptoms include: overwhelming fatigue, muscle pain and weakness, low attention span, clumsiness, light sensitivity, lack of tolerance to noise, headaches, poor temperature control. The symptoms fluctuate.
There are no diagnostic tests, and testing for ME is normally a process of checking medical history of the individual and eliminating other symptoms and illness.

There is no one single cure, only three clinical trials have been reported to have produced any real benefits, including one with the use of fish oil. Alternative therapy such as acupuncture has its merits but people with ME should not be over reliant on such treatments, as there are a lot of phoney claims by alternative doctors to have found a cure. For the individual, learning to pace yourself, diet, emphasis on gradual recovery may all help.

Action for ME and ME Association have helped several research projects to do with brain dysfunction and ME There is a need for more large scale research.

Louise Fish - Action for ME

Louise Fish spoke about practical difficulties with the Welfare Reform Bill for people with ME.

People with ME have difficulty attaining benefits. A lot of decision making is down to the Benefits Advisory doctors. People with ME may have a good day where they could attend and pass the tests, but the next day they could be bed ridden. A single assessment does not suit people with ME, they need to be assessed at home. People with ME are sometimes incoherent because of brain dysfunction/fatigue etc, so they find it hard to argue their case. Benefits Agency staff are not well trained in dealing with ME problems. There is a belief within the BA that ME is not a physical disability.

Very few get their benefits without having to go to appeal. There is a need for better training for BA staff and doctors. People with ME are worried about the changing regulations regarding the All Work Test and the adding on of a capability report. The new test, along with the single work focus gateway, will focus on what an individual can do, not can't. However, no differential is made between disability and illness, and the reality that people with ME may suffer relapses after only a short period of activity.

The Alliance of ME charities would like input into the implementation arrangements for the new system. Mavis Moore pointed out that the administration of the BA needs to be looked at, with many medical examiners appearing very negative to ME.

Louise Fish pointed out that the average waiting time for appeals is one year. Medical people on the appeal panel need to be aware of ME. Claimants' medical evidence is being disregarded. They often give out short term awards, expecting to see some improvement.
The All Work Test does not account for how ME affects people. They had comments submitted for consultation, none of the changes they proposed were made. Implementation has focused on mental impairment, not physical side of the illness.

4.    Questions. Members questioned Mavis and Louise on a number of points raised by their talk.

The main points arising were that the medical treatment received varied according to where that person lived, with some areas having particularly good services for people with ME, while others had little or no service.

Only 8000 people with ME are in receipt of Incapacity Benefit, which is a lot less than the number of people with the illness.

Members asked for clarification between CFS and ME. CFS is a separate condition to ME, although neither provides a perfect definition for the illness. CFS is still used as it is the preferred term of most medical practitioners.
Members were asked to make the Officers of the group aware of any casework they have dealt with in relation to people with ME and benefit problems.

5.    Any Other Business.
The All Party Parliamentary Group on M.E. would sponsor a room for
ME Awareness day on May 12th", for a briefing on the Chief Medical
Officer's Working Group on Children.

6.    Date and agenda of next meeting.

The next meeting will be held on Tuesday 22 June at 4pm in Committee
Room 5. Hugh Bayley MP would be invited to discuss the impact of the Welfare Reform Bill on people with ME.

INTERNATIONAL M.E. AWARENESS DAY MEETING All Party Parliamentary Group on ME.

House of Commons, Grand Committee Room
Wednesday 12th May


No formal minutes were made of the meeting, but the following report has been compiled for members' information.


Speakers:    Naomi Wayne, Deputy Chair,
Chief Medical Officer's Working Group on CFS/ME
Judith Waterman, Chair
Chief Medical Officer's Subgroup on Children with CFS/ME
Rachel Lynds, Member of CMO's Subgroup on Children and
Association of Youth with ME (AYME)

1.    Chair's Introduction

Tony Wright MP thanked colleagues for attending the meeting. He stated that it was taking place to mark International ME Awareness Day. He also thanked members who took part in the Adjournment Debate on ME during the morning.

2.    Naomi Wayne, Chief Medical Officer's Working Group on CFS/ME

Naomi Wayne outlined the progress of the Chief Medical Officer's Working Group on CFS/ME.

The CMO's Working Group was announced in August 1998. Its terms of reference are to "produce good practice advice and information based on the most up to date understanding of the illness, on aspects of clinical management for adults and children".

The Working Group uses the term CFS/ME, rather than ME, because this is the designation used by the Chief Medical Officer. CFS/ME is also used by the group as an inclusive term, rather than using either term exclusively.

The CMO's Working Group consists of:
o    a Key Group - who are responsible for actually making recommendations;
o    a Children's Group - even very young children through to those in their late teens can have ME, and this group aims to address their specific problems;
o    a Reference Group - consisting of around 40 medical professionals, carers, and people with CFS/ME who are an expert resource for the working group, receiving relevant papers etc.
The Key Group meets around every 3 months. It aims to complete its work in around 18 months to 2 years, which is an indication of the huge amount of work which it has to address and the very difficult problems it must tackle.

The Key Group is committed to making its work as transparent as possible. At the end of each meeting briefings are produced. They will be circulated to members of the Working Group and MP's in hard copy, and they are also posted on the Department of Health's website at www.doh.gov.uk/cfs-me.htm. Discussion documents are also produced for discussion and circulation to the Reference Group, and some of these are also posted on the website for information.

At the moment, three initial areas of medical debate have been identified.
First, the need for an epidemiological study to identify the number of people suffering from CFS/ME. Second, whether CFS/ME is one illness or whether there are a number of sub-groups within this umbrella term. Finally, theWorking Group is clear that there is a need for a review of current treatment research. The group is planning to commission a systematic review of current treatment research in the English language, and it is hoped that this review will be complete by next March.

The Working Group is also putting together a rolling work programme to address other areas which impact on the lives of people with CFS/ME. This programme includes reviewing diagnostic criteria and procedures, and work to address the difficulties people with CFS/ME currently face when obtaining benefits.

3.    Judith Waterman, Chief Medical Officer's Subgroup on Children with
ME

Judith Waterman outlined the progress of the Chief Medical Officer's Subgroup on Children with ME.

The Children's Group was set up because of the specific problems facing children with ME. ME often affects children at around twelve years old, although it can affect children as young as five, and intrudes into their physical, educational and social development. They may recover in around four years, but obviously this is a long time in a child's development.

Children need help with diagnosis and treatment. The fact that around 50% of GPs don't believe that ME exists is particularly significant for children, who cannot speak for themselves.

The Children's Group is very committed and hardworking, and includes a good cross-section of opinions including paediatricians. The group is hoping to develop guidelines which will help local providers to improve services. The guidelines will emphasise the need to listen to children and provide support for their parents. The group will also be looking carefully at the issue of education.
4.    Rachel Lynds, Association of Youth with ME

Rachel gave a personal perspective on the work which the Chief Medical Officer's Working Group is undertaking.

Rachel is a member of the Children's Group. She is 20 years old, and has had ME for six years. She is currently studying part time to take A level Maths and Psychology, and has improved significantly since the early stages of her illness when she was bedridden and had to be tube fed.

Rachel was lucky to be diagnosed within six months of becoming ill. Her GP was understanding, and she is sure that the information she was given at diagnosis helped her to understand and manage her illness.

Rachel feels that when she was first diagnosed she knew little about ME. Today she feels that people know more, but they are unaware of the severity of the illness since they only see sufferers on their 'good' days. Particularly for young people, this lack of understanding leads to isolation from their peers. For Rachel, an organisation called the Association of Youth with ME helped to fill this void by putting her in touch with other young people in her position.

ME has affected Rachel's whole family. The impact of having a seriously ill child while having no respite care affected her parents, and her brothers and sisters. The financial burden placed on the family was also significant.

Rachel hopes that the Chief Medical Officer's Working Group will be able to help young people and others with ME when it reports.

*******************************************************
Meeting between All-Party Parliamentary Group on M.E. and Hugh Bayley MP,
The Parliamentary Under-Secretary of State, Department of Social Security
10am, Wednesday 8th December 1999
Richmond House


Present:

DSS: Hugh Bayley MP, Dr Peter Dewis & Dr Philip Sawney (Department of Social Security Medical Policy Group), Trish Griffiths

APPG:    Tony Wright MP, Christopher Gill MP, Betty Williams MP, Bradley Chase

Agenda:

The All-Party Parliamentary Group on M.E. had previously submitted to the Minister a series of issues relating to the new ONE single gateway for benefits on people with ME. and questions on disability benefits in general. It was agreed that the Minister would respond to each issue in turn, and any questions could be asked after each response. Christopher Gill stressed the need for movement and urgency on the issues that affect people with ME.

Issue I: Difficulty with assessment on a single occasion for people with M.E. The symptoms and intensity of M.E. can vary widely from day to day, and over-exertion and stress can lead to relapse.

Hugh Bayley noted that there were a number of conditions that varied in their intensity from day to day. Protocols provided to Department of Social Security (DSS) doctors asked them to make an assessment of the degree of disability of an applicant over a period of time, to find a typical level of incapacity. Dr Philip Sawney noted that the All Work Test assessment considers incapacity over a period of time and is not a snapshot of a particular day. The period considered is not strictly defined, but should be reasonable. The criteria do not include the ability to perform a task on one single occasion, but the ability to repeat that task over a period of time.

Tony Wright noted that a large proportion of people with M.E. who were turned down for disability benefits on first application had these decisions overturned on appeal. He also pointed out that there appeared to be some geographical distortion regarding how successful people with M.E. were on having their first application accepted. Dr Philip Sawney responded that the DSS guidance is national and should be applied by doctors consistently across the country. If trends showed different areas had differing results to the rest of the country this would be followed up.

Issue 2: Training of ONE advisors. Will there be a handbook of advice for the ONE advisors and will it include the advice issued by charities on their client group?
Hugh Bayley pointed out that ONE advisors were not clinicians, but that they needed to be aware of the needs of disabled people. They receive a handbook, which provides guidance on M.E., which was produced in consultation with Action for M.E. The DSS also provides disability awareness training to all advisors. So far the feedback is that ONE is working well. The Minister would welcome feedback on the experience of people with M.E. with ONE.

Issue 3: Training of Disability Benefits Analysts (Doctors). How are the doctors trained to assess M.E., particularly with regard to the fluctuating nature of the illness? Great importance is attached to the doctor's report during the initial assessment, and there are a large number of rejected applications that are overturned at the tribunal stage.

Hugh Bayley said that the DSS was seeking to improve equality and consistency of advice from Benefits Agency (BA) doctors. He noted that decisions on benefits were based on evidence provided by claimants, claimants own GP and/or specialist, other carers and from the BA's own doctor. The DSS had introduced a more stringent recruitment process for BA doctors, including a written examination and an induction period. These changes took place just over a year ago.

Betty Williams pointed out that although the decision is not solely based on BA doctor's written evidence, it could be crucial. Hugh Bayley responded that all evidence is given equal weight. Betty Williams asked when we might expect to see changes in the effectiveness of BA doctors when assessing people with M.E. Hugh Bayley pointed out that we are in a process of change. The changes to recruitment that came in last year initially applied to new recruits only and are now being extended to doctors already employed by the BA. In terms of formal complaints, only 3,500 had been made so far this year from over 700,000 medicals. The Minister assured Members that the issue of complaints is being addressed, and that he would welcome other suggestion on improving the medical management and professional standards of doctors employed by the BA.

Tony Wright was pleased with the positive moves taken by the DSS and will monitor their effects along with the associations representing people with M.E. He recognised the difficulties doctors faced in making assessments for people with fluctuating illnesses, but urged them to look more closely at supporting evidence provided by claimants. Hugh Bayley pointed out that the DSS wanted to cut down on appeals for everyone's benefit. The DSS have introduced a Diploma in Disability Assessment Medicine, which is a postgraduate qualification for doctors, and is designed to specifically improve the ability of doctors to assess people with disabilities. Appeal figures were moving in the right direction, but as disability benefits are subjective, as they assessed a person's needs based on their disability rather than compensating them for their disability, there would always be cases that led to appeal.

Betty Williams pointed out the need for doctors to improve their communication skills. Dr Philip Sawney said that this was part of the doctors' ongoing training. He believed that if a doctor was not able to assess a person with M.E. then they were not up to the job. Communication skills are a key part of the doctor's role, and part of the new Diploma in Disability Assessment Medicine was the emphasis on communication. Betty Williams noted the linguistic problems for those whose first

2
language was Welsh, and wondered what the percentage of bilingual doctors was in Wales. Hugh Bayley said he would look into this.

Issue 4: Advice given to Benefits Advisors in the Disability Handbook The ME Association worked with DSS to produce an entry for M.E. in the 1996 edition of the Disability Handbook. A crucial paragraph on ME. has been dropped from the subsequent edition. Can this be reinstated in the new handbook or future equivalent?

Dr Peter Dewis pointed out that the 1996 publication was an annexe that updated the then current edition and included M.E. In 1998 a complete new edition was published and there was no intention to omit any necessary advice. The paragraph was a short one at the end of the introductory section of the earlier version, which explained that care and mobility needs were more important for DLA purposes than any specific diagnosis. The intention was simply to make the overall chapter more readable, and there were a few other minor differences between the two versions. The DSS felt that the new chapter did not convey anything different to the earlier version. If organisation representing people with M.E. would like to make their views known to the DSS on this matter, they would try to respond positively to any suggestions in future versions of the handbook, although a complete new edition was some way off

Tony Wright accepted this, and asked that the views of M.E. organisations were taken into account in future revisions and editions.

Issue 5: Advice of individual's own GP or specialists. Is there any possibility of specifying the information from an individual's own GP of specialist could be taken into account in M.E. since the impact the illness has on individuals varies so greatly?

Hugh Bayley reiterated that the views of GPs and specialists are taken into account. Incapacity Benefit always requires the claimant to undergo a medical, but with DLA it was only necessary if there was a gap or conflict in the information provided. People often complain about the length of an examination by a BA doctor, but they may only need to clarify the conflict. Dr Philip Sawney pointed out that the criteria for the assessment were set out in law. Information given by the GP or specialist might not be the information needed or might not be given in the form needed for the decision-maker to use.

Betty Williams said that during an examination people often make themselves sound better than they really are. Dr Philip Sawney replied that doctors were aware of this and should be able to recognise when this happens. Hugh Bayley pointed out that this was a key skill for doctors and formed part of the new Diploma. The policy of the DSS is to get things right first time, therefore the decision maker has to take into account the GP's and specialist's advice, and it was in the BA's interest to look at this evidence.

Tony Wright highlighted the presentation the APPG had just had on the epidemiology of M.E., and noted that there may well be a large upsurge in cases in the future, which would make life more difficult for the BA. Hugh Bayley said that the DSS would continue to use the best knowledge available when giving policy advice. Tony

3
Wright pointed out that there was still not enough research going into the background of M.E.

The Minister thanked the Members of the APPG for their input and said that he had found it useful to have to look hard at how the current system was working for people with M.E. He would welcome continued contact with the Group and would gladly attend a future meeting. Members thanked the Minister for his time.
*****************************************************************
All-Party Parliamentary Group on M.E. - December 1999

Additions since lust list appear in bold
MPs - Commons (141)    Constituency
David Amess    Southend West
Donald Anderson    Swansea East
Candy Atherton    Falmouth and Cambourne
Harry Barnes    Derbyshire North East
Roy Beggs    East Antrim
Gerry Bermingham    St Helens South
Roger Berry    Kingswood
Harold Best    Leeds North West
Liz Blackman    Erewash
Bob Blizzard    Waveney
Richard Body    Boston and Skegness
David Borrow    South Ribble
Graham Brady    Altrincham and Sale West
Tom Brake    Carshalton and Wallington
Peter Brand    Isle of Wight
Russell Brown    Dumfries
Angela Browning    Tiverton and Honiton
Ian Bruce    South Dorset
John Burnett    Devon West and Torridge
Simon Burns    Chelmsford West
Paul Burstow (Vice-Chair)    Sutton and Cheam
Christine Butler    Castle Point
Jamie Cann    Ipswich
Judith Church    Dagenham
Michael Clapham    Barnsley West and Penistone
Paul Clark    Gillingham
Tony Clarke    Northampton South
Harry Cohen    Leyton and Wanstead
Tony Colman    Putney
Michael Connarty    Falkirk East
Tom Cox    Tooting
Ross Cranston    Dudley North
Jim Cunningham    Coventry South
Cynog Dafis    Ceredigion
Janet Dean    Burton
Jeffrey Donaldson    Lagan Valley
David Drew    Stroud
Julia Drown    Swindon South
Clive Efford    Eltham
Bill Etherington    Sunderland North
Nigel Evans    Ribble Valley
Margaret Ewing    Moray
Howard Flight    Arundel and South Downs
Barbara Follett    Stevenage
Derek Foster    Bishop Auckland
Michael Gapes    Ilford South
Ian Gibson    Norwich North
Christopher Gill (Treasurer)    Ludlow
Cheryl Gillan    Chesham and Amersham
Donald Gorrie    Edinburgh West
Tommy Graham    Renfrewshire West
Damian Green    Ashford
Win Griffiths    Bridgend
Mike Hancock    Portsmouth South
Evan harris    Oxford West and Abingdon
John Hayes    South Holland and The Deepings
Ivan Henderson    Harwich
Stephen Hepburn    Jarrow
Stephen Hesford    Wirral West
Jimmy flood    Clydesdale
Lindsay Hoyle    Chorley
Simon Hughes    North Southwark and Bermondsey
Joan Humble    Blackpool North and Fleetwood
Andrew Hunter    Basingstoke
Brian Iddon    Bolton South East
Helen Jackson    Sheffield Hillsborough
Barry Jones    Alyn and Deeside
Ieuan Wyn Jones    Ynys Mon
Fraser Kemp    Houghton and Washington East
Charles Kennedy    Ross, Skye and Inverness West
Andy King    Rugby and Kenilworth
Ashok Kumar    Middlesbrough South and Cleveland East
David Lepper    Brighton Pavilion
Ivan Lewis    Bury South
Andy Love    Edmonton
Peter Luff    Mid Worcestershire
John McAllion    Dundee East
Steve McCabe    Birmingham Hall Green
John McDonnell    Hayes and Harlington
Eddie McGrady    South Down
Anne Mcintosh    Vale of York
Tony McNulty    Harrow East
Fiona Mactaggart    Slough
Tony Mc Walter    Hemel Hempstead
Paul Marsden    Shrewsbury and Atcham
David Marshall    Glasgow Shettleston
Michael Mates    East Hampshire
Bill Michie    Sheffield Heeley
Andrew Miller    Ellesmere Port and Neston
Kali Mountford    Come Valley
Paul Murphy    Torfaen
Chris Mullin    Sunderland South
Bill O'Brien    Normanton
Eddie O'Hara    Knowsley South
Bill Olner    Nuneaton
Diana Organ    Forest of Dean
Sandra Osborne    Ayr
Ian Pearson    Dudley South
Colin Pickthall    Lanacashire West
Peter Pike    Burnley
Kerry Pollard    St Albans
Gordon Prentice    Pendle
2
Syd Rapson    Portsmouth North
Andy Reed    Loughborough
Laurence Robertson    Tewkesbury
Terry Rooney    Bradford North
Ernie Ross    Dundee West
William Ross    East Londonderry
Ted Rowlands    Merthyr Tydfil and Rhymney
Bob Russell    Colchester
Christine Russell    City of Chester
Phil Sawford    Kettering
Jonathan Shaw    Chatham and Aylesford
Angela Smith    Basildon
Llew Smith    Blaenau Gwent
Martin Smyth (Vice-Chair)    Belfast South
Rachel Squire    Dunfermline West
Anthony Steen    Totnes
George Stevenson    Stoke-on-Trent South
Andrew Stunell    Hazel Grove
David Taylor    Leicestershire North West
Matthew Taylor    Truro and St Austehl
Mark Todd    South Derbyshire
Don Touhig    Islwyn
Dennis Turner    Wolverhampton South East
Des Turner    Brighton Kemptown
Derek Twigg    Halton
Rudi Vis    Finchley and Golders Green
Joan Walley    Stoke-on-Trent North
David Watts    St Helens North
Steve Webb    Northavon
Bowen Wells    Hertford and Stortford
Brian White    North East Milton Keynes
Malcolm Wicks    Croydon North
Betty Williams    Conwy
Phil Willis    Harrogate and Knaresborough
Audrey Wise    Preston
Mike Wood    Batley and Spen
Shaun Woodward    Witney
Tony Wright (Chair)    Great Yarmouth
Derek Wyatt    Sittingbourne and Sheppey

Peers - Lords 2

Lord Bragg
Lord Clement Jones

Mailing List Only (29)
Peter Ainsworth    Surrey East
Hugh Bayley    City of York (Minister DSS)
Julian Brazier    Canterbury
John Butterfill    Boumemouth West
Dennis Canavan    Falkirk West
Geoffrey Clifton-Brown    Cotswold
Yvette Cooper    Pontefract and Castleford (Minister DoH)
3
Roseanna Cunningham    Perth
Huw Edwards    Monmouth
Roger Gale    Thanet North
Edward Gamier    Harborough
Michael Jack    Fylde
Ann Keen    Brentford and Isleworth
Eleanor Laing    Epping Forest
Oliver Letwin    Dorset West
Elfyn Llwyd    Meinonnydd Nant Conwy
David Lock    Wyre Forest
Dan Norris    Wansdyke
Tom Pendry    Stalybridge and Hyde
David Rendel    Newbury
Marion Roe    Broxbourne
Chris Ruane    Vale of Clwyd
Adrian Sanders    Torbay
Caroline Spelman    Meriden
Paddy Tipping    Sherwood
Jon Trickett    Hemsworth
Nigel Waterson    Eastbourne
Alan Whitehead    Southampton Test
Ann Winterton    Congleton
*****************************************************************
All-Party Parliamentary Group on ME
17.00, Tuesday 23rd November
Committee Room 9, House of Commons


Present:    Tony Wright MP (Chair), Lord Clement Jones, Nigel Evans MP, Christopher
Gill MP, Ivan Henderson MP, David Lepper MP, Paul Marsden MP, John
McDonnell MP, Bill Michie MP, Peter Pike MP, Martin Smyth MP, Rachel
Squire MP, Betty Williams MP

Parliamentary Observers:    Jim Cousins MP, Hannah Welch (for Andy King MP), Christopher Jones (Commonwealth Parliamentary
Association)

Guest speakers:    Michael Henry (for Anita Roddam), Dr Betty Dowsett, Dr Derek Pheby

Administrating:    Anne Baughen (ME Association), Bradley Chase (Tony Wright MP), Louise Fish (Action for ME), Janine Navin (ME Association)

1.    Minutes of the previous meeting

It was noted that the minutes of the last meeting should have listed Andy King MP as

present, and Christopher Gill MP as having sent his apologies.
2.    Apologies for absence

Graham Brady MP, Peter Brand MP, Ian Bruce MP, Judith Church MP, David Drew MP.
Howard Flight MP, Barbara Follett MP, Cheryl Gillian MP, Mike Hancock MP, Stephen
Hesford MP, Simon Hughes MP, Andrew Hunter MP, Ieuan Wyn Jones MP, Peter Luff
MP, Tony McNulty MP, Fiona Mactaggart MP, Bill Olner MP. Andy Reed MP, Bob
Russell MP, Mike Wood MP

3.    Election of secretary

Tony Wright MP noted that Yvette Cooper MP is no longer able to continue as Secretary to the group, since her appointment as Minister for Public Health. It was agreed that election of Secretary should be an item on the agenda for the next meeting, and that Tony Wright will ask for volunteers in the meantime.

4.    The 45,000 installation - Michael Henry on behalf of Anita Roddam

Michael Henry gave a presentation on behalf of Anita Roddam, who is severely affected by ME and bedbound. Anita was keen to make clear to MPs that epidemiological research is about real people, and not statistics.

A copy ofAnita 's presentation is attached for information.
An epidemiological study into ME

Tony Wright MP noted that a petition had been received from Castleford Aid for ME of 1730 signatures asking for the APPG to allow ForT to make a presentation. It was noted that we had already planned to invite Dr Dowsett to the November meeting, due to her many years of experience.

5.    Dr Betty Dowsett

Dr Dowsett outlined the prevalence and geographical pattern of ME, noting that it affects cool and affluent areas, often follows epidemics of poliomyelitis, and is seasonal. She stated that there has been an enormous pandemic from 1980s onwards, and emphasised that we are likely to see pandemics every 20 years and epidemics every 10 years She made clear that enteroviral mediated illnesses in general follow this pattern.

Dr Dowsett also discussed the type of people who get ME. She stated that a majority are female, with a peak at puberty and on to the forties when incidence of the illness starts to tail off. She postulated that the hormone balance might interfere with the immune system during the childbearing years to make women more susceptible. Dr Dowsett stated that people who get ME are often teachers, medical staff, and anyone who enjoys watersports.

Dr Dowsett stated that there are also a number of people starting very early with the illness, in childhood, who often go on to become the most severely affected. She gave examples from a survey of 6 LEAs, where her research suggested that ME was the commonest cause of long term absence from school. She also stated that some schools seem to exhibit 'clusters' of pupils with ME.

Dr Dowsett outlined the need to:
o    Tackle ME and predict epidemics;
o    Redirect research towards the kind of people who typically get ME, in order to develop our understanding of how enteroviruses work.
She emphasised her desire to work with Dr Pheby to crack this illness - making clear her belief that we can ill afford to lose the type of socially and economically active people who become ill in this way, and her belief that we are causing them further harm by our mismanagement of their illness.
.

6.    Dr Derek Pheby

Dr Pheby emphasised that we are here to talk about people not statistics, as exemplified by Anita's presentation. He stated that little is known about the burden of illness due to ME in the UK population - with serious consequences for planning services and meeting needs. He stated that a three-pronged approach to the problem is needed:
o    Establishing an effective management programme, as the Chief Medical Officer's Working Group is doing;
o    Developing a knowledge of current service provision, as the NHS Taskforce has done;
o    Undertaking an epidemiological study in order to find the level of need.

Dr Pheby explained that an epidemiological study is not being done at present. He proposed that what is needed is a three year study. In the first year, a check list of diagnostic clinical features from existing clinical research definitions should be drawn up,


2
and around 50 GPs should be asked to provide information, using this checklist, on patients with chronic fatigue unexplained by other medical conditions. This information would be used to identify, by discrimination analysis, those clinical features that are most effective in identifying accurately patients with ME. This would provide the basis of the epidemiological case definition which would be used in years 2 and 3 of the study to estimate more accurately than before the incidence and prevalence of ME in the UK population, via a large scale study in general practice. Dr Pheby also emphasised the need to use both the large scale GP study and a sample of community based studies in order to determine the current level of need accurately.

Dr Pheby ended by drawing attention an independent report produced by the National Taskforce on NHS Services, which highlighted the disparity of NHS services for ME. compared to other conditions. The report concluded that the mismanagement of patients with ME results in "an overall cost to the community in the UK of around £1 ,000m per annum. He stated that by combining the work done by the NHS Taskforce and the CMO's Working Group with the results of an epidemiological study, we would be providing a better service to people with ME at a cheaper cost. However, he emphasised the need to start the epidemiological study now, not wait until the CMO's Working Group has reported, in order to establish the level of need as soon as possible.

Please mark the enclosed form appropriately and return it ifyou would like a copy of the papers that accompanied Dr Pheby 's presentation.

7.    Discussion & Questions

Q:    Lord Clement Jones stated that he agreed with both Dr Dowsett and Dr Pheby that proper research is the way forward. He expressed his horror that the Government response to date has been so far removed from this common sense approach, and urged that the APPG should be pressing for an epidemiological study prior to the report of the CMO's Working Group. He also expressed some concern about the lack of patient involvement to date in the CMO's Working Group.

A:    Dr Pheby stated that he had confidence in the work being done by the CMO's Working Group. He added that he is a member of the CMO's Working Group, and confirmed that action is being taken to bring together the key group and the reference group in order to harness both their abilities more effectively. He also stated that the group has commissioned a systematic review of management literature to date from the NI-IS, and that this review should be complete by July 2000. As a result of this review, it is likely that the CMOs Working Group will report towards the end of 2000.

Q:    Martin Smyth MP and Betty Williams MP enquired about the regional spread of ME in the UK.

A:    Dr Dowsett explained that the illness is common throughout England, Scotland, Wales and Northern Ireland. She stated that there are geographical differences in ME due to the fact that communities become immunised and the illness dies down for a while, and then returns once the immunisation wears off She stated that ME is especially common in new towns where there is a mixing of communities - particularly an urban/rural mix.

Q:    John McDonnell MP asked how we plan to move our campaign for an epidemiological study forward.


3
A:    Tony Wright MP suggested we should seek a meeting with a minister from the Department of Health to raise this issue.

It was AGREED that Tony Wright MP would seek a meeting with a Department of Health minister.

8.    Correspondence

Tony Wright MP noted that DeHavilland have written to ask whether we are prepared for an APPG membership list to be released for lobbying purposes. It was AGREED that members are happy for the list to be given out, as this is normal practice for APPGs.

9.    Any Other Business

Tony Wright MP stated that there are two spare places for a meeting between the APPG
and Under-Secretary of State for Social Security Hugh Bayley MP on 23rd December at
10.00    at Richmond House. It was agreed that Betty Williams MP and John McDonnell
MP would take these places.

10.    Date and time of next meeting

The next meeting of the All-Party Parliamentary Group on ME will take place on Tuesday 25 January 2000, at 16.00, Committee Room 18, to discuss the problems faced by people with ME dealing with health insurance companies.

********************************************************
November 23rd 1999
All Party Parliamentary Group on M E
House of Commons
45,000 Installation
Commentary by Anita Roddam    Reader Michael Henry


Good Afternoon.

Some of you may be aware of a rather controversial exhibit which received a lot of media attention recently nearby at the Tate Gallery.
The artist had spent one week confined to bed and felt compelled to communicate this experience to others (Image of My Bed' by Turner Prize candidate shown).

I'm going to take just ten minutes today to represent to you very much greater numbers of bedbound people who find themselves detained for years rather than days, and in some cases even decades

My name is Michael Henry and I'm here today to read the words of someone who is too severely affected by M E ever to attend events like this. Her name is Anita Roddam and she has been 100% bedbound for the latter six years of her illness (We have a photograph here.)

I have known Anita for ten years, since the day she requested my help, as a stranger. to climb a short flight of stairs I remember clearly the shock I felt that such a fit and healthy looking young person of about 30 years, should need someone's help at all, when quite elderly people were managing the same stairs with ease

I have since watched the struggle that living with M.E in our society brings For years Anita has been managing severe symptoms day en, day out. It requires a continuous juggling act ri order to eat, sleep and to keep her health stable The slightest extra or unexpected thng can tp the balance sometimes for days, and it takes tenacity and endurance just to survive let alone communicate these experiences to the wider world. I feel privileged as her friend, to read for such a creative and courageous person

Anita has co-ordinated a piece of work involving members of the M E community in representing the severity of their condition. It conveys the large numbers of people so affected, the wide variety of their ages and backgrounds and, where known, the duration of their illness.

The artwork is displayed behind me here and you are invited to view it shortly. Some elements are included in the information sheets for you to take away, and I will be happy to answer any questions - if I can

So, now, I'll read Anita's words

In September of 1998, after almost nineteen years of living with M E , I one day read about BRAME - The Blue Ribbon Campaign for Awareness of Myalgic Encephalomyelitis - and immediately felt very excited.

Getting a name for my condition and illness in 1987 after 8 years of undiagnosed M E had been a really momentous day at a very personal level. I had felt validated and believed after years of character assassination and hostility from most quarters. Now learning of an international awareness campaign felt just as significant - but on a global level
On the same day, I also heard the term 'severely affected' and learned of the 25% M E group for the first time. For years I had been unable to read much from the magazines of the main M E support groups because I was too ill What I did read made me feel even more isolated People thought we should be forming swimming and cycling groups and contemplating childbirth One person sent out booklets on carpentry They didn't seem to be talking about the M E. that I had But, in the 25% ME. group everyone was virtually housebound and/or bedbound. Many were 100% bedbound like myself. These were my people !

But what did they look like?
Based on a conservative estimate of one hundred and eighty thousand M.E sufferers in the U K., one quarter would mean forty five thousand severely affected sufferers

I pictured, each time I battle alone in my room with some egomaniacal bureaucrat who's denying me my civil and human rights, not just me justifying and explaining, but me with forty four thousand nine hundred and ninety nine others also in their beds behind me.

I still couldn't grasp it, but it was getting very exciting indeed

My friend said that 45,000 people was enough to fill the Stadium of Light at Sunderland I'd never stood in a football stadium full of people - so I still couldn't visualise such a number But I had been to the Theatre Royal in Newcastle upon Tyne. I rang them up Their seating capacity was one thousand two hundred and fifty. That would mean 37 Theatre Royals full of people with M F. like me We could completely fill London's Shaftesbury Avenue. Wow'

I decided to make an installation - a piece of visual art which could be installed in any number of venues - to portray these new-found kinspeople. I thought first of drawing a circle to represent each person - but thought that some joker might say that we amounted to 45 000 big fat zeroes (In the 1980's people with M E. were referred to, by so called experts as B-class people with A-class aspirations who just couldn't hack it .).

So instead I chose the image of a ribbon to symbolise each of the 45 000 individuals in the U K who are housebound or bedbound with M E

Because of the nature of this illness because we're housebound and bedbound, we never meet other severely affected sufferers. You can wait for a very long time, but, unlike the No 49 bus two of us well rarely come along together. Where you'll never see us is in a G.P's waiting room. Consequently, individuals think that they're the only person guilty of failing to recover People living with ME. ( and people who don't have the condition) are told that after two years of pacing we all regain our former levels of activity I know of one family which has actually ringed the calendar and is counting off the days towards the promised recovery Each of my fellow sufferers who has been ill for between ten and thirty five years, has been told, "You are unique. No one else has become as disabled as you, and you cannot expect research to be carried out on people like you

My great worry and concern is that we may be missed out of the research, and hence the treatment, because we can't get to a doctor's surgery to be included in the surveys.

I am therefore, so grateful for this opportunity to represent to you today the unmet needs of this large and otherwise invisible patient group - one quarter of the M.E. community.
In conclusion:

The 45000 Installation has travelled to over a dozen towns and cities in the U K. so far. Its aims being to break the isolation and exclusion experienced by those living with severe M E and to raise awareness and provide information for those who do not have the illness

In May of this year, as part of World M.E. Awareness Day, it was presented at a conference before 200 healthcare professionals and people living with ME. and is currently on a tour of city libraries and galleries in the North of England.

Mostly, it is viewed spread over people's beds and on the floor of their homes. Individuals have selected a sheet and signed it like a visitors bock. Some have put comments as in an art gallery or 'book of remembering', and others eloquently describe their experiences.

This is a 'living' piece of artwork which grows and changes every time it is viewed, and you are invited to include your own opinions or messages of support on the slips provided

All of this has taken well over a year to achieve. During that time I have learned so much more that I wanted to convey to you today, but the toll that this is taking on my health prevents me from being as effective as I would wish. I feel that it is time to hand on the baton

Please will someone enable this doctor to implement the very practical and long overdue research of which he is certainly more than capable, whilst I, and people like myself. concentrate our scant energies upon living within the unfeasible limitations and demands placed upon us by this devastating illness.

What I really want to ask for, is that the Department of Health fund research into the aetiology - the organic causes - of M E and that an expert panel of neurologists, immunologists. pathologists and endocrenologists be convened immediately to support and co-ordinate existing projects.

In the absence of any realistic medical support or guidance, I have personally explored over 70 avenues en an attempt to stabilise my health, and I have to report : 'No change' In fact I continue to see only deterioration

Meanwhile, for the past four years it has not even been possible to find a GP who will make domiciliary visits.

I feel sad, because I am ageing, and my life is getting away from me, and my society does not see fit even to begin to look for the causes of this illness.

This is the second formation of the APPG on M.E. since I became bedbound and whilst I'm sure sympathy and good wishes are well-meant, I need and hope for more

For myself 20 years has been too long to wait merely to be counted.

I do hope you will feel able to give Dr. Pheby's research proposals your most generous support, and I thank you for listening.

All Party Parliamentary Group on ME
16.00, 25th January 2000
Committee Room IS, House of Commons


Present    Tony Wright MP (Chair), Roy Beggs MP, Michael Connarty MP, Clive Efford MP, Ernie Ross MP, Martin Smyth MP, Rachel Squire MP,

Guest speakers~ Monica Dale (CASH), Alison Whitby

Administrating:    Anne Baughen (ME Association), Bradley Brady (Tony Wright MP), Louise Fish (Action for ME)

Observers:    Doreen Buckland, Peter Buckland, Andrew Dale, James Millar-Craig, Vivienne De Swarte, Cohn Pugh, John Sharp, Gerlinde Tinbergen,

1.    Minutes of the previous meeting

The minutes of the previous meeting were agreed

2.    Apologies for absence

lan Bruce MP, Dennis Canavan MP, Judith Church MP, Janet Dean MP. Howard Flight MP, Barbara Follett MP, Roger Gale MP, Ian Gibson MP, Christopher Gill MP. Fiona NIacTaggart MP, Peter Pike MP, Andy Reed MP, David Rendel MP, Marion Roe MP, Rudi Vis MP, Alan Whitehead MP, Mike Wood MP

3.    Election of secretary

Tony Wright MP noted that the group is still in need of a secretary due to Yvette Cooper's appointment as Minister for Public Health. It was agreed that election of Secretary should remain on the agenda for the next meeting. and that Tony Wright MP will ask for volunteers in the meantime

4.    Presentation and Discussion: "Private Health Insurance"

Tony Wright MP noted that an adjournment debate on Private Health Insurance (PHI) instigated by Clive Efford MP had taken place on 21st December, and that subsequently he had received a large amount of post about this issue. As the issue was of special interest to a number of people in dispute with insurance companies, it was agreed by Group Officers that a small number of observers would be admitted.

a)    Speaker: Clive Efford MP

Clive Efford MP began by thanking Tony Wright MP for the invitation to speak at the meeting He stated that the issue raised relates to people who are insured under group policies for loss of income under PHI.

Clive Efford MP became involved with the issue due to a constituent forced to give up work due to illness, who was covered by a group policy. Her insurers refused to correspond with her directly, and stated that they would only correspond with her former employer. As a result she was denied the right to arbitration. However, he stated that he has heard of a recent discretionary case where the Personal Investment Authority Ombudsman agreed to hear the case and take up the complaint- which could offer more hope for the future.
He stated that some insurance companies - particularly UNUM - are holding conferences to persuade medical professionals that certain chronic illnesses should not entitle individuals to benefits It is left up to individuals who are at their lowest physical ebb to challenge these decisions on an individual basis insurance companies also use medical reports written by doctors who have never met the individual concerned.

Clive Efford MP stated there is a serious lack of regulation in this area The Financial Services and Markets Bill is currently before Parliament, and although it is not explicit in the Bill he has been led to understand that regulation of PHI will be given to the Financial Services Authority, who will have powers to regulate this area in future. He stated that the framework needed is access to independent arbitration under set criteria that people can understand, and that access to the ombudsman should be given to the individual rather than to their employer. He also raised the possibility of using a ~pane1 of experts' to write medical reports rather than Harley Street experts paid by the insurance company. He ended by stating that he and his colleagues will continue to campaign until they are satisfied that PHI is more tightly regulated.

b)    Alison Whitby - Copy of speech enclosed

Alison Whitby is an ME sufferer who won her case against UNUM

c)    Monica Dale - Copy of speech enclosed

Monica Dale runs an organisation called CASH, who offer advice and support for people with ME applying for pensions.

d)    Update on UNUM -

Tony Wright MP stated that he received a letter from the Managing Director of UNUM that morning, in response to issues raised in December's Adjournment Debate. He and Clive Efford MP agreed that they will respond to the letter, and that the letter should be circulated to members of the APPG.

e)    Discussion

John Sharp stated that he has been campaigning on the issue of PHI for some years, and has been in contact with the Consumer Association and OFT who both recognise the problems but have been unable to address them. He stated that he hopes that members taking the issue up will have more success.

Alison Whitby stated that UNUM are advising the Benefits Agencies' doctors on dealing with chronically ill claimants, which leads to further problems for individuals trying to access benefits.

Clive Efford MP stated that members recognise that there is a wrong, and that they want to campaign to achieve real change.

5.    Correspondence

Tony Wright MP noted that he had received a large postbag as a result of the PHI debate His office aims to respond to all letters within a month, but there may be some delay due to the Christmas holiday.

6.    Any Other Business

None

7.    Date and time of next meeting

The next meeting of the All Party Parliamentary Group on ME will be the group's AGM It will take place on Wednesday 22nd March at I .3Opm, Committee Room 16


I was fortunate to have the Banking and Finance Union funding my case but I ask you to keep in mind the other less fortunate claimants who have been or will be turned down by their Insurers on spurious grounds 'while you hear the following.

Although UNUM had medical reports from three eminent medical consultants it made absolutely no difference. One of the consultants appointed by my employers, recommended in June 1996 that I retire on health grounds. The second was from a senior Consultant Neurologist in May 1997 and the third from Dr E.G. Dowsett in August 1997. Dr Dowsett stated in her report that using her scoring chart "where 150 might be attained in any chronic illness, Miss Whitby has a high score of 383".

It was in October 1997 that I had a people carrier with tinted windows parked on the private grounds of my borne. This vehicle then followed my carer's car as we travelled to a local solicitor's office to coincidentally arrange for UNUM's visit by a clinical psychologist to be carded out and witnessed at the office as opposed to my home as I did not trust UNUM. Absolutely shaken and distressed I called the Police who when they visited me told me to call them immediately should this happen again. I have never felt so low during this illness as that day. Again the following morning the same vehicle was parked on the road, the tinted windows faring my borne. The Police were called and the driver identified himself as a private investigator working for an insurance firm. I learned later in the private investigator's report to UNUM exposed in papers exchanged with my solicitors, that he had attempted to call at my home with an ulterior motive but there was no answer.

In February 1998 the meeting took place with UNUM's clinical psychologist at the local solicitors office. The fact that this meeting was audio taped and a written transcript made was the difference between me winning or losing my case. The clinical psychologist opened by suggesting be was on the side of the patient and not to worry. He ended the meeting by asking if I would be prepared to accept a lump sum from UNUM.

A copy of UNUM's Chronic Fatigue Syndrome Management Program dated April 4, 1995 has been given to each of you, I quote just three extracts from this paper:-

1.    Diagnosis - Neurosis with a new banner.

2.    UNUM stands to lose millions if we do not move quickly to address this increasing problem.

3.    Attending Physicians - work with UNUM rehabilitation services or an outside vendor in an
effort to return the patient/claimant back to maximum functionality with or without symptoms.

In March, 1999 1 saw Professor L J Findley, Consultant Neurologist who stated in his report "her general practitioner referred her to Dr Dowsett, an acknowledged expert on the subject of ME, who assessed her and made a very definite diagnosis. In practical terms she should be considered permanently disabled and offered medical retirement on health grounds."

My illness became minor by comparison to the denial and harrassment subjected by UNUM. This nightmare lasted three years and I frequently wonder if I would have improved instead of deteriorated had UNUM acted in an ethical manner. It is not only patients who suffer at the hands of these Insurers but employers trusting the Insurer, until they find themselves in court with huge legal fees to meet, also doctors and consultants spending vast amounts of time and funds diagnosing patients whose expertise is questioned by them.




Alison L. Whitby



CASH
Campaign. Advice. Support. & Help.
For ME/CFS and FM Sufferers. applying for a pension

SPRINGHILL FARM, MILLFIELD AVENUE, EAST COWES, I W P032 6AS.
'Phone/Fax 01983 299033. e-mail- monica@funfarm demon co uk

MEETING OF ALL PARTY PARLIAMENTARY GROUP ON ME 25TH JANUARY 2000

When a person becomes ill with ME, obtaining their pension or insurance money is not a foregone conclusion.
Living on incapacity benefit, struggling to be believed, and trying to prove they are permanently incapable of doing their job, IS.

In terms of pension or insurance payments, Is ME a Permanent illness?
The answer differs greatly.
Whilst organisations like the NHS are happy to say yes, and use criteria which indicate good or poor prognosis as a framework for making their decision; many other organisations like the DfEE state:-'many ME sufferers recover within 4years, with appropriate and adequate treatment'.
Just what this appropriate and adequate treatment is- they do not say.

In 1996 The Royal College Joint Working Group on CFS stated,:
'no one should be regarded as permanently impaired until they have had the opportunity of participating in all sensible efforts at rehabilitation'.
The report suggests cognitive behavioral therapy could be they way forward. The Royal Colleges Report, has been seized upon by some doctors.
However CBT is not a cure.
Why, then, do organisations persist in requesting ill health or insurance applicants to undergo consultation with psychiatrists or psychologists? Maybe the answer is that the report says that CBT is,'a cost effective treatment'. The word treatment could suggest cure.

IT CAN TAKE A VERY LONG TIME TO PROVE PERMANENT INCAPAC1TY

Because establishing whether ME is going to be permanent or not, it's generally felt that a period of two years, will have elapsed since the onset of symptoms, before a conclusion of permanence can be reached. Statistics from Action for ME say:-
'clinical observation suggests that approximately 20% recover in two years, usually those who received an early diagnosis and were able to take sufficient rest.

Immediately there is a problem, because often people are 'off sick' for a year, and are advised to retire on the grounds of ill health. When the pension is subsequently turned down they are told that they are not permanently incapacitated.
After a year 'off sick', the applicant finds this hard to believe.

In the absence of a diagnostic test or further research into the prognosis of the illness, people are going to have to wait and see what happens with their illness; whether it is going to improve within two years, or if it is going to be a lifelong problem.
During this time however, organisations do not take financial responsibility and the sick person, m most cases, will only have state benefits, to live on.
Incapacity benefit and DLA are both subject to periodic review by the DSS, & quite often these benefits are refused.
The applicant then has to appeal against the decision. M.t.Alexander Baird Keachie's case highlights this:-A college lecturer for 17 years, he became ill in 1998. In June 1999 a
diagnosis of ME was given by two consultants. He was advised to apply for pension, was told at the time of application that this would probably be refused. He has now learnt that the Scottish Occupational Pension office have turned down his application.
Further he now has to appeal for DLA, this also having been turned down. He has written to raise an objection regarding the DLA examining doctors report, as this was apparently full of inaccuracies.
As is often the case.
Currently his application for DLA is being re-assessed. [copy of letters to MP's included in documentation.]

It appears that insurance companies, subject people to such humiliations as Video surveillance, camp outside their homes, and follow them.
As I understand it this information is inadmissible in court, so why do they persist in causing a great deal of stress and anxiety whilst surely violating a persons basic human right to privacy?
Insurance companies do not disclose the information they have, including medical reports, saying as they paid for these reports they are their property.
Without sight of this personal information, challenging their findings is extremely difficult.
Currently the Personal Investment Authority Ombudsman is telling claimants that there is a delay in looking at cases due to the HIGH number of complaints received.

An all too common theme is expressed in the letter from Thelma Brothwell, a community nursing sister.
"As with many ME sufferers I seem to have to continually prove I am ill and then still be disbelieved by parties such as Norwich Union. I consider the additional stress created by having to fight for my pension rights and insurance benefit has exacerbated my health problems."
[copy of letter enclosed in documentation.]

With both, insurance companies and pension funds, it appears that the small print omits to say' that an applicant will have to prove they are permanently incapacitated.
The company ask an applicant to show they are permanently incapacitated, [the best way a claimant can do this is by providing medical reports from experts on ME,] and then the company do their best to ignore or disprove the supportive evidence submitted.
-~ Organisations use the power and might of standard, impersonal communications.
-    Loose your documentation! records.
-    Ignore requests for information.
-~ Use doctors! or unsuitable personnel, who have no idea what ME actually is.
And generally pass you from department to department in the hope that y~o u will give up the fight.

Best sellers have been written using these story lines.

Teachers, for example, find that when they apply for their pension they are often turned down. In order not to loose out on their enhancement an appeal has to be placed within six months. However chances are they still will have not been ill for long enough; as it appears that the DfEE are taking 4years, from the onset of the illness, as the length of time in which permanency can be established.
This could leave the teacher without funds for at least four years. Neil Scott is a teacher and a Canada Life insurance policy holder. He became ill in January 1998, in August of that year he had to give up working as a teacher. In July 1999 he was advised to take ill health retirement. His application was refused. He was told in a "cold, blunt, & obviously standard letter". The letter went on to state "that many sufferers recover within four years with appropriate and adequate treatment." In a bid to try to help himself he wrote to the DfEE to ask, what treatment they' would like him to undergo. It took two letters and three phone calls and a wait of seven weeks to be told, that it was not the DfEE policy to tell people what treatment they should have, and to seek advice from his GP. He is still pursuing his pension and is undergoing CBT from a private practitioner which costs £35.00. for just 20minutes.
CanadaLife is still taking monthly premiums from Mr.Scott but the policy has not paid out because of the 'permanency debate'. A request for a detailed explanation of evidence that showed he did not meet the criteria ~ as referred back, to the policy document. He too is now considering asking the PIA ombudsman to look at his case. [copy of letter in documentation.]

The fact is:- 60% learn to manage their illness, which is not the same as recovery, but rather like a newly diagnosed diabetic, he/she learns to manage his/her insulin, diet and activity, but the diabetes never goes away.

The remaining 20% never regain their pre-illness capacity for work, and some go on to become severely disabled.

When someone has been 'off sick' for some time, the employer, has discussions with the employee, and suggests if they are not fit enough to return to work, they should take ill health retirement.
Instead of this being an end to the matter, it can be the beginning of a nightmare. The fact that a pension may not be awarded on first application is not generally known by employees.
Nor do employees know that the organisation, who advises ill health retirement, actually have no sway over the decision of the pension department as to whether an award should be given or not. Organisations do not offer any financial assistance to their employees, after they have terminated their contract. Even though in the majority of cases these employees have given in the region of 20 years service to the organisation.

People who took responsibility for themselves, took out insurance policies and/or paid into pension funds, find themselves with out the funds they understood would be available to them, should they ever become too ill to work.

The problems of loosing a good income through ill health leads to a whole host of personal and financial problems.

The main difficulties I deal with are that:-

** People can not believe they are not going to receive any funds for possibly, quite a long time.

* * Doctors do not have a specific set of criteria, to use as a framework for making decisions on ill health retirement, for people with ME.

* * People get confused and angry at doctors/ insurance companies/pension organisations, who suggest or refer them for psychiatric opinion and /or treatment.

Based upon my own experiences and that of the people I try to support, I think that:-
** Companies could be encouraged to be responsible for the welfare of their sick employees, even after the employees contract has been terminated and whilst they await pension award. [length of time for payment would depend on the time their medical advisors say it takes to prove, that someone with ME, is permanently incapacitated.] The company could perhaps pay the employee, at say, a monthly pensionable rate.
This may en courage a more positive attitude towards helping the employee, and if appropriate, offer suitable, acceptable, alternative work options, thus encouraging implementation of the Disability Discrimination Act

Insurance companies can pay out for varying periods on their permanent insurance policies only to withdraw, [sometimes with no explanation] the funds, and subject the claimant to inappropriate medical examination, concluding that the claimant is now fully/almost recovered and no longer qualifies for payment.

The example of Mrs Isabel Howe, who became ill in May 1996 demonstrates this; she is now registered disabled and totally unable to work. She had an insurance policy with Royal & Sun Alliance and after difficulty and legal intervention the payments on the policy commenced. In 1998 she was seen and examined by a doctor for the insurance company. He told her that she had ME, could not work, and that he would recommend a review in 12 months. Mrs.Howe was not given sight of his report. Six months later the insurance company said that Mrs Howe was 'not totally unable to work' and therefore payment ceased.
This was after a period of just 2Omonths. The case is now being investigated. [copy of letter to MP's in documentation.]

Duncan Gray, has a PHI with Permanent Insurance Company. In 1996 he had a relapse [following initial ME diagnosed in 1991] and in 1997 took ill health retirement from the Police Force. His insurance paid out on his policy' from September 1996 until October 1999.
There had been intermittent reviews of his ill health but in May 1999 the insurance company asked him to write and tell them how he was at that time. He explained that in general his condition had worsened since an operation in December 1998.
The insurance company have, as I understand it, used video surveillance. Further in a bid to 'better understand' his condition he was sent to a physiotherapist for examination. Concerns were raised as to the suitability of this persons expertise in ME. The examination took three hours and a request for a short break was denied. This caused extreme exhaustion and the insurance company was told this by Mr.Gray.
The report was full of inaccuracies, and not surprisingly the decision was given to terminate benefit in March 2000 and until that time benefit would be paid at a much reduced rate.
This decision is being challenged by Mr.Gray. [letter to MP's in documentation.]

There is a need to clearly state the difficulties which might be faced by a person, when claiming their money back, should they suffer from one of the following illness:- e.g. ME. etc.

** No one should be subjected to inappropriate treatments, or invasions of privacy in order to try to prove they are not malingering, depressed, stressed or mentally unstable.

** Legislation should be put in place to ensure that medical reports be the property of both, the person they concern, and the commissioning company. Also ensuring a clause, which states that second, 'for the company only' reports, be illegal.

** All insurance and pension companies should have one set of criteria for use in decisions on permanency of ME.

The NHS implemented the findings of the DSS Expert Group on Chronic
Fatigue Syndrome.
These findings can be found in a document entitled:-'Chronic Fatigue Syndrome Prognosis and Chronicity'.
[DSS October 1996.]

The system works well and perhaps it could be used as a good working model, for all other industry and insurance companies.
After a great deal of pressure from us, the NHS recognised the real need to have a set of criteria which could be used in decision making.

I hope that this snapshot view of the problems encountered by thousands of people, has inspired you and will fire you all, into taking action to change this injustice.

Thank you,
Monica Dale. SRN. Dip Couns.

*******************************************************************

ANNUAL GENERAL MEETING

All Party Parliamentary Group on ME
13.30, 22nd March2000
Committee Room 14, House of Commons


Present:    Tony Wright MP (Chair), Tom Clarke MP, Steve McCabe MP, Peter Pike MP, Martin Smyth MP, Rachel Squire MP, Des Turner MP,

Guest speakers:    Meghan-Morgan Shannon


1.    Minutes of the previous meeting

The minutes of the previous meeting were agreed

2.    Apologies for absence

Bob Blizzard MP, Ian Bruce MP, Lord Clement Jones, Michael Connarty MP, Janet Dean
MP, Barbara Follett MP, Christopher Gill MP, Win Griffitbs MP, Dr Evan Harris MP,
Stephen Hesford MP, Andrew Hunter MP, Dr Brian lddon MP, David Lepper MP, Ivan
Lewis MP, Paul Marsden MP, Anne Mcintosh MP, Lord Puttnam, Andy Reed MP, Bob
Russell MP, Christine Russell MP, Dennis Turner MP, Mike Wood MP

3.    Election of officers

The APPG's officers for the previous year were as follows:
o Chair: Tony Wright MP
o    Two Vice-Chairs: Paul Burstow MP and Martin Smyth MP
o    Secretary vacant
o    Treasurer: Christopher Gill MP'.

Tom Clark proposed that the officers be re-elected en-block, with the addition of Steve
McCabe as secretary. Des Turner seconded the proposal. The proposal was AGREED
UNANIMOUSLY.

4.    Chair's remarks

Tony Wright MP stated that this has been a good first year for the group, with significant progress made. He stated that particularly good progress has been made with regard to benefits and the All Work Test, and that the APPG will continue to keep a watching brief on this area He also updated the group on progress with regard to Private Health Insurance, stating that he and Clive Efford \4P will be going to meet with UNUM during April for further discussions.
However, Tony raised concerns about the expected delay in the report of the Chief Medical Officer's Working Group. He stated that with the group's agreement he would take this up with the Chief Medical Officer, and invite him to a future meeting of the group. It was AGREED to invite the CMO to a future meeting to express the groups concerns.

5.    Speaker: Megan Shannon, "An international perspective on ME"


6.    Questions and discussion

Doris Jones raised a number of points with regard to UNUM's position in the UK. Tony Wright MP agreed to bear these points in mind when meeting with UNUM in April.

7.    Correspondence

Tony Wright MP' stated that he has received a letter from Tanya and Christine Harrison of BRAME. The letter thanked the group for all their support and understanding over the past year. It went on to outline hopes that ME would be acknowledged fully as an illness, and that breakthroughs would be made in its treatment. It was AGREED that those present share these sentiments, and will continue working to this end.

8.    Any Other Business

There were no items of any other business.

9.    Date and time of next meeting

The next meeting of the All Party Parliamentary Group on ME will take place during ME Awareness Week, on 9"' May 2000. Details to follow.