All Party Parliamentary Group on ME (UK)

[Guest guest]

http://www.afme.org.uk/res/img/resources/APPG%20minutes%2022-02-07.pdf

All Party Parliamentary Group on M.E.

Chair: Dr Des MP

Vice-Chairs: Stunell MP

Tony MP

Secretary: Dr Ian Gibson MP

Treasurer: Amess MP

Minute of the Meeting of the APPG on M.E.

held 1.30pm, Thursday 22 February 2007,

Committee Room 17, House of Commons

PRESENT

Dr Des MP (Chair)

Stunell MP (Vice Chairman)

Luff MP

Tony MP

Vero, office of Dr Ian Gibson MP

Falconer, office of Sir MP

Professor Littlejohns, NICE

Dr Esther Crawley, NICE Guideline Development Group

Fiona Cairns, Action for M.E

, Action for M.E

, Action for M.E.

Dr Shepherd, ME Association

Tony Britton, ME Association

Ward, NICE

Colette Marshall, NICE

Sarita Tomber, NICE

, RiME

Crossick, North London ME Group

Hazel Griffiths North London ME Group

Ciaran Farrell, Person with ME

on, BRAME

Criona , mother of the late Sophia Mirza

Doris , 25% Group

Di Newman, borough ME and CFS Group and Cambs Neuro

Alliance

Clive Page, Father of person with ME

Augustine , Person with ME

Hubert Berger

Jo Dubiel, Person with ME

Jill Pigott, Worcestershire ME Group

APOLOGIES

Baron MP, Betty , MP, Kelvin Hopkins MP, Dr n

MP, Willott MP, Bill Olner MP, Clive Efford MP, Nadine

Dorries MP, Dr Berry MP, Steve McCabe MP, Jim Hood MP,

Ann Widdecombe MP, McDonnell MP, Joan Humble MP,

Lepper MP, Mark Todd MP, Plaskitt MP, Mullin MP, Tim

Boswell MP, Lembit Opik MP, Ben Wallace MP, MP,

Lady Sylvia Hermon MP, Thurso MP, Bottomley MP,

Cheryl Gillan MP, Hywel MP, Tom Brake MP, Mike Hancock

MP, Fraser Kemp MP, Lord Clement-, Tim Farron MP, Celia

Barlow MP, Tony MP, Ann McKechin MP, Eddie O'Hara MP,

Gidley MP, Sir MP

1. WELCOME

Dr welcomed people to the meeting. He explained that as

Professor Rawlins, chairman of the National Institute for

Health and Clinical Excellence (NICE), was unable to attend the

meeting to discuss the draft clinical guideline for CFS/ME, NICE was

being represented by Professor Littlejohns, Clinical and Public

Health Director of NICE and Dr Esther Crawley, Consultant

Paediatrian and Guideline Development Group member.

Professor Littlejohns thanked the Group for inviting NICE to

attend. He explained that he had been responsible for clinical

guidelines at NICE since their inception. All NICE guidelines were

produced on the basis of best available evidence and on a process

based on transparency, active consultation and review. He added

that guidance however robust is not set in stone; medical advances

can happen very quickly and NICE aims to make guidance as up to

date as possible. A total of 118 guidelines, including 51 of clinical

guidance, have been produced over the past 18 months. NICE was

the biggest guideline production unit in the world. Any organization

affected by a guideline should be part of the development of that

guideline.

Dr Crawley explained that as well as being on the Guideline

Development Group, she is a paediatrician who sees 150-200

children with CFS/M.E. every year. She said she had been very

struck by the consultation, both the initial questionnaire and the

feedback on the draft guideline.

Dr said that the guideline on CFS/M.E. was unique compared

to guidelines on other illnesses, in that M.E. is a spectrum of

illnesses.

Dr Crawley said that although this had been a cause of controversy

and had made the guidelines difficult to draft, the aim of the

Development Group had been to encourage clinicians to consider a

diagnosis of M.E. at an earlier stage.

Professor Littlejohns said each new guideline has its own

challenges. The initial scoping exercise helped people to focus and

identify limitations on what was possible in the timescale available.

Hugh Berger, father of a person with M.E., asked the NICE

representatives if they agree with the WHO definition of M.E. as a

neurological condition.

Professor Littlejohns and Dr Crawley were unable to answer directly.

Dr Crawley said the issue had come up in the consultation but that it

wasn't part of the scope of the guideline to discuss definitions. Hugh

Berger asked if they considered M.E. a psychiatric condition.

Professor Littlejohns said that although NICE considered definitions,

NICE was not in a position to define conditions. Dr Crawley said she

believed in the biopsychosocial model of the illness, that it can be

genetically inherited but that body and mind are linked. Hugh Berger

said this model is offensive to people with M.E., a physical illness.

Di Newman added the draft guideline is already turning back time for

those GPs who have accepted that M.E. is a physical illness and

that terms like biopsychosocial " are used by insurance companies

which do not want to make payouts to people with M.E.

Dr Shepherd highlighted that people with M.E. suffered

financially, by losing benefits, when the psychosocial model was

used. NICE had to accept the WHO classification of M.E. as a

neurological illness.

Professor Littlejohns said the guidance would be listed on the

neurological section of the NICE website. He said that he was not

qualified and did not feel the APPG was the place for him to discuss

definitions.

said the terminology of the draft guideline was skewed

and based in misinformation. In his opinion the document was

irrelevant and potentially dangerous in that it recommended graded

exercise therapy (GET) and said lack of exercise prolongs the

illness. This is offensive to people with M.E.

Ciaran Farrell later echoed this, saying a guideline which

recommends cognitive behaviour therapy (CBT) and GET as

treatments of first choice was at odds with definitions of and criteria

for M.E., which indicate that exercise makes people with M.E. feel

worse. He also felt that by regarding relapses as set-backs, the draft

guideline implied that the illness was psychological and that people

were choosing not to recover.

Professor Littlejohns said that the guide was a draft and that while

he could not predict the results of the consultation process, he

believed a number of concerns raised had been heard by the

Guideline Development Group.

Dr Crawley said the guideline emphasised that there should be a

choice of treatments and that programmes should be individually

tailored. No-one would be forced into CBT or GET.

Dr Shepherd challenged this: the guideline described CBT and GET

as therapies of first choice. A number of charities had signed a joint

statement which drew on feedback from patients: GET can be

harmful and CBT does not benefit everyone.

Dr Crawley said that the guideline could have been worded better,

adding that the Group had listened to consultees and been informed

by the consultation. Professor Littlejohns confirmed that NICE was

keen to listen to patients as well as clinicians and others involved.

on BRAME read out a statement, raising the specific

problems of the severely affected and their carers and pointing out

that specialist NHS services are under threat due to funding. She

asked who would take responsibility if health professionals follow the

NICE guidelines promoting CBT and GET and patients are

mismanaged, misdiagnosed or experience a serious deterioration in

their health, or even die?

Under the current system, the severely affected are sometimes

taken into care against their will, and forcibly removed from their

home, despite their families protests.

Criona described the tragic circumstances of her late

daughter, Sophia Mirza, who was treated as mentally ill by doctors

and sectioned before her death. It took an autopsy to prove that her

spinal chord was inflamed. on and Di Newman

confirmed that Sophia was not a solitary case. had been in

contact with a number of parents whose children with M.E. have

been sectioned or lost their children completely in their 20s or 30s.

Dr said that if the NICE guidelines are going to be any use,

they should give some protection to families and individuals affected

by M.E.

Tony MP said that the importance of the NICE guideline was

clear when children and young people were being sectioned and

adults were not getting benefits to which they were entitled. He said

it was wrong that people may be seen either by doctors who do or

do not accept the WHO classification of M.E. as a neurological

illness. He believed that NICE has a duty to protect people from

doctors who do not accept the evidence of families who say their

loved one has a physical condition.

Professor Littlejohns said that changes to the guideline would be

documented. The guideline would form part of national clinical

standards and doctors would be assessed on whether they meet

these standards.

was disappointed that the guideline had made no

recommendation for further biomedical research.

Dr Crawley said that she was passionate about biomedical research

and that the guideline group had been struck by the lack of

epidemiological and other evidence.

pointed out the difficulties people had experienced with the

consultation process, in terms of accessibility and transparency. For

example, the guideline was too long, there had been problems with

electronic distribution, the information needed to be tailored for

specific audiences and the timeframe for responses was limited for

people with severe fatigue.

Professor Littlejohns said he took these points on board.

Doris echoed earlier points made about the potential dangers

of CBT and GET, quoted evidence for the physicality of the illness

and pointed out that suicide is the third most common cause of

death among people with CFS/M.E. after cancer and heart attack.

CBT/GET cannot resolve serious physical illness, she added.

Dr Shepherd asked whether the guideline would still be implemented

after publication in August if it still did not have the confidence of

patients. Professor Littlejohns said that guidelines were not always

carried forward if they were not seen to be useful to the NHS.

Fiona Cairns asked if the phrase about CBT/GET being the first

treatment of choice would be removed.

While Professor Littlejohns and Dr Crawley could not predict what

the guideline would say, Dr Crawley admitted that the phrase did not

reflect the meaning intended by the guideline group and said she felt

that the comments made by consultees would be taken on board.

Professor Littlejohns was asked whether NICE would consider a

second phase of consultation. He replied, " We have a process

which we try to keep to. Occasionally we do move away from that

process. "

The Chair suggested that NICE might wish to take some more time

to consider how best to address some of the issues that had been

raised.

Professor Littlejohns said he would report the point back to the NICE

Executive Committee, as he was not empowered to make that

decision.

2. MINUTES OF THE LAST MEETING / MATTERS ARISING/OTHER

BUSINESS

i. As time was short, Dr suggested that the following items be

carried over to the next meeting:

a. Mental Health Bill

b. APPG Code of Practice

This was agreed.

ii. Cairan Farell asked if Mr Hutton had written to Dr with

details of any contractual penalties to which Atos Origin were

subject. Dr said he would follow up on this and report back to

the next meeting.

iii. Dr Shepherd asked if Dr Ian Gibson had made progress on the

wording of an Early Day Motion (EDM). Dr Gibson's assistant,

Vero, circulated a draft (attached). Dr said the EDM would

probably be tabled after Easter.

v. on reported that on 15 February, the DWP had

responded to the charities' joint statement on version 9 of DWP

guidance, saying: " we are considering the final version of the

ME/CFS guidance and will look at the level of detail contained

therein. We expect to provide you with a fuller response by the end

of April 2007. "

vi. Vero said that the Gibson Inquiry Group were interested in

seeing if they could get the Standards Agency to look at conflict of

interest eg. on occasions where advisers are representatives from

insurance companies, psychiatrists etc. She asked people to

contact her if they had already looked into this.

vii. asked if Dr could comment on a letter sent by

the leader of the Kent Group. Dr said he would follow up on

this and respond in due course.

viii. Doris asked how best to ensure that representatives from

the MRC, NICE etc would respond positively to invitations to

meetings. Sara Vero suggested that invitations could be made

through the APPG.

3. DATE OF NEXT MEETING

To be confirmed.

The meeting closed shortly after 2.45pm.

Appendix

Dr Ian Gibson's draft EDM

This House recognises Myalgic Encephalomyelitis (ME) as a

serious, long term, debilitating illness, that affects more people in the

UK than HIV/AIDS; welcomes the Group on Scientific Research into

ME's Report 'Inquiry into the status of CFS/M.E. and research into

causes and treatment'; notes the Department of Health classification

of ME as a neurological condition; calls on all government

departments to accept this definition; calls for the implementation of

nationally recognised clinical and research criteria which reflect the

Dept of Health classification, similar to the guidelines used in

Canada; calls for the collation of national epidemiological data of ME

Patients based on this criteria; calls for an independent panel of

medical experts to review the existing international and UK

biomedical evidence relating to ME to identify areas for further

research; calls for massive further research into potential aetiology

and treatments of ME.