Category: CFS/ME Collaborative Conference

Invest in ME: Statement regarding Forward-ME

The Minutes of the last meeting of the Forward-ME group (a caucus group to the APPG on ME, convened and chaired by the Countess of Mar) held on Wednesday 8 July, at the House of Lords, can be read here on ME agenda or here on the website of Forward-ME.

Invest in ME, who are members of this group, have issued a statement in connection with Forward-ME and the last meeting of the group:

Invest in ME

[Forward-ME] Meeting 8th July 2009

IiME were not able to attend the meeting of this group on 8th July 2009 in London. As for every other meeting we submitted our comments to the Countess of Mar and all other members of this group in advance.

1 Attendance at Meetings and Visibility of Comments

We would like to return to our previous email (submitted in an email on 12th December 2008) where we stated the following –

We understand that, as we were unable to attend the last meeting, any decisions made at the meeting would not include our vote.

However, we see no reference in the minutes of either of the meetings to show that our views, as submitted in documentary form prior to each of the meetings, have been discussed or included in the discussions.

We would like to see that our comments have been entered into the discussions. Will the minutes reflect this?

We never received any response from our email of 23rd March.

2 GOSH medical meeting on ME/CFS in September to be discussed and the subject of Lightning Process

In the next meeting the subject of the GOSH at a day long medical meeting on ME/CFS in September is to be discussed and the subject of Lightning Process.

Mary-Jane from AYME has written “I share your concerns about this (LP) being included in the meeting”

We find this strange and hypocritical.

AYME have advertised LP for its members and freely allow discussion without seemingly making any critical comment on the lack of a research base, the numerous cases where people have been made worse and the fact that the practitioners of LP are generally not registered healthcare practitioners and take no responsibility for the results.

To state that there are concerns seems to us to be hypocrisy.

One should also remember that AYME and AfME are not in a position to criticise GOSH for including behavioural therapies/businesses as most of their recent joint conference in Milton Keynes included known advocates of the behavioural causality for ME and also included an insurance company representative.

3 Questions for Esther Crawley CNRCC Children’s Services

We have the following questions for Esther Crawley.

In your CV it states that you published research showing “children with CFS/ME don’t go to school because they are unwell not anxious”. However, isn’t it true that you believe there is a condition termed Pervasive Refusal Syndrome (PRS)?

If the answer to i) is yes then what proof do you have of this, what research is there to prove this really exists?

If the answer to i) is yes then how many children who were diagnosed with ME have you believed to have PRS?

What medical tests do you perform on patients who are suspected of having ME/have ME?

Do you test for acute and/or reactivated infections?

From the minutes of the meeting it appears none of our points were discussed. IiME were informed by CoM [Countess of Mar] that the questions to Esther Crawley were not asked as they were not appropriate to the discussion. The minutes of that meeting are available here

Ends

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Please note that ME agenda is unable to enter into correspondence around the Lightning Process.  Please direct any enquiries regarding the content of the Minutes of Forward-ME meetings to the Chair of Forward-ME.  Please direct any enquiries regarding the content of Invest in ME’s statement to Invest in ME.

Forward-ME: Minutes of meeting 8 July 2009

Would Dr Esther Crawley like to provide evidence to support this statement?

“Dr Crawley explained that the reputation the CFS/ME charities had for infighting was not particularly helpful and prevented research and clinical involvement.”

In February, this year, Dr Crawley, who had been a member of the NICE Guideline Development Group, was awarded £730,000 for research into “CFS/ME” and “Fatigue” in children:

http://www.bristol.ac.uk/ccah/news/2008/12.htmldresthercrawley

 

The Minutes of the last meeting of the Forward-ME group, held on Wednesday 8 July at the House of Lords, have now been posted on the group’s website:

This is a caucus group to the APPG on ME convened by the Countess of Mar, last October. Membership of the group is by invitation only; members of the public are not permitted to attend either as participants or observers.

The 25% ME Group had been a member of Forward-ME but has since withdrawn all involvement with the group. 

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http://www.forward-me.org.uk/8th%20July%202009.htm

FORWARD-ME

Minutes of the meeting held on Wednesday 8 July 2009 at the House of Lords

1. Present: Christine Harrison – BRAME

Bill and Janice Kent – ReMEmber

Jane Colby – TYMES Trust

Peter Spencer – AfME

Charles Shepherd – MEA

Mary-Jane Willows – AYME

Margaret Mar – Chairman

 

2. Apologies: Tanya Harrison – BRAME

Sue Waddle – MERUK

Kathleen McCall – Invest in ME

 

3. Minutes of the Meeting held on 21 April 2009:

The minutes of the meeting were agreed and signed by the Chairman.

4. Dr Esther Crawley, FRCPCH; PhD, Senior Lecturer at the University of  Bristol and a Consultant Paediatrician, Chair of the CFS/ME Clinical  Research Network Collaborative (CCRNC)

and

Dr Hazel O’Dowd, MSc, D Clin Psych, Consultant Clinical Psychologist, Clinical Champion for CFS/ME services for Avon, Gloucester, Wiltshire and Somerset:

The Chairman introduced Dr Crawley and Dr O’Dowd and thanked them for coming to address the Group.

Dr Crawley gave a PowerPoint presentation a copy of which she kindly agreed to send to us after the meeting (see Presentations )

http://www.forward-me.org.uk/Presentations.htm 

Click the link to open/save the file depending on your browser

CFS/ME Clinical and Research Network and Collaboration by Esther Crawley – PowerPoint Show file

http://www.forward-me.org.uk/Presentations/forwardME_no_photos.pps  (Ed: MS PowerPoint or compatible reader required)

She explained that there were historical issues that had resulted in mistakes being made over patient participation. She had fought for patient/carer involvement and, by the time of the next CCRNC executive there will be 8 patient/carer representatives (4 from charities) on the Executive committee.

The National Outcomes Dataset (NOD) is an essential tool for providing evidence for further research into causation and treatments.

There are many strengths upon which the CCRNC intends to build. Openness and their recognition of the importance of working together has already attracted MRC, NIHR and Welcome support. The list of current research studies currently being carried out by members of the CCRNC was extensive and covered many medical specialisms.

Provision of services was a serious weakness, especially where children were concerned. Most children did not even get a diagnosis; there was no domiciliary provision for them as, indeed, there was not for most adults who are seriously affected. There was, historically, a lack of patient involvement.

Opportunities for progress were opening up with the ability to do large-scale research on cohorts of 3,000 patients. There was no other comparable large scale cohort in the world.

An open approach which looked at both good and bad results was essential if improvements in care, data collection and sharing, and the ability to apply political pressure were to be achieved.

Dr Crawley explained that the reputation the CFS/ME charities had for infighting was not particularly helpful and prevented research and clinical involvement.

The meeting was opened to questions. Janice Kent asked whether the Genome Wide Association Studies were linked to the genetic research conducted by DR Jonathan Kerr. Dr Crawley explained that his work involved gene expression – how the genes function. This generated hypotheses for further investigations. The results could be altered by effects secondary to the illness – by alcohol, drugs or exercise, for example. Genome-wide association studies involved scanning the DNA of a large cohort of patients to find common genetic variations associated with illnesses which would enable researchers to detect, treat and prevent diseases.

Charles Shepherd asked whether, in the light of the widespread opposition to the NICE Guidelines, charities that were opposed to them would be invited to become members or associates of the CCRNC executive. Dr Crawley acknowledged that, whilst the NICE Guidelines were flawed, they were a start. There was a need for all to work together to produce evidence to effect a change in the guidelines. In order to join the collaborative, charities would be expected to sign up to the evidence based approach. It would be a matter for discussion.

Janice Kent asked about charities and groups that had been excluded from formal representations to the specialist clinics when they were being set up. She explained that they had a wealth of information and experience. Dr Crawley said that the CCRNC want to work with everyone concerned and ask Janice to write to her with the detail.

Christine Harrison asked about coverage by the CCRNC. She explained that the east of England had no specialist services at all. Dr Crawley agreed that provision for most areas was thin. The original budget had been for about £100,000 for each clinical team. To be assessed as cost effective, this would treat 100 patients. Some regions were dealing with 300 patients on this budget. There was a very real need for effective local services.

Christine asked about the grading of patient evidence as NICE had given the very large amount of evidence it received the lowest grading. Dr Crawley acknowledged that the method for grading was imperfect. Patient experience was valuable and should inform high quality research, opening the door to further research.

Jane Colby asked about the rationale of treatments offered for different aetiologies of CFS/ME. Dr Crawley explained that with an illness like CFS/ME which is a heterogeneous disorder there were differences between what was observed clinically and what was shown biologically. She cited schizophrenia and bipolar disorder, which were thought to be separate illnesses but are the same on genome wide association studies. There was a need for caution as not enough was known. In her clinics, patients were offered a variety of options which were individualised. If they made a wrong choice another option would be sought. There is currently no evidence of what will work for different subgroups. Jane asked about return to school. Dr Crawley said that she listened to her patients and helped them to achieve what they thought they could do, whether it was to improve their athletic performance, socialising or education, for example.

Peter Spencer commented on several of the points raised including analysis of data, measurements of effectiveness, benchmarking and people wanting to work with and learn from each other. There was a need to concentrate research resources. Greater patient involvement was key. There was no obligation on PCT’s to take the severely affected into account. The severely affected were particularly neglected; they had no voice and it was not surprising that they were particularly frustrated.

Charles Shepherd commented on the fact that those with the greatest need were given the lowest priority. Dr Crawley suggested a solution would be for them to use the NICE Guidelines which state that the severely affected have the right to have an immediate domiciliary visit and access to all services. If there were no specialists in their area they should ask for an out of area referral. These were costly and, if used enough, local services would be provided on cost grounds. It was not good practice to expect severely affected children and adults to travel long distances for consultations or for physicians to travel to make domiciliary visits. The situation was gradually improving, but effective outcomes were still a drop in the ocean compared with the unfulfilled need.

Dr O’Dowd spoke about training, for which she is responsible within the CCRNC. She accepted that it was not perfect. In 2003 she had to establish training for the first wave of teams with national training for the new clinicians. The DoH mandate was to improve diagnosis by GP’s. This was improving very slowly. Initially, when they set up training courses, only a few interested GP’s attended. It was difficult to attract those who were sceptical about CFS/ME. They then attached training to the end of other events that were more attractive to GPs. There were also local GP training schemes happening in a piecemeal way. They wanted to get CFS/ME on the core curriculum for medical, physiotherapy and occupational therapy training. This was difficult, but there were some successes. She acknowledged that there were regional variations. In some places there was a high staff turnover for specialist services. They were developing the workshops. Additionally, over the next 2 years they hoped to develop an on-line training package that would be easily accessible. Working with the CCRNC had been beneficial as the trainers could have access to a large body of training material from the regions which cut down their workload.

Speaking personally, she said that there was much less scepticism about CFS/ME amongst the people she worked with. She had seen a marked change in her day to day dealings with doctors and other health care professionals. She felt that it was essential that the GP, district nurse and other members of the primary care team should always be involved in home visits. The most successful encounters were those that occurred on a one-to-one basis.

Margaret Mar asked how Dr O’Dowd would address the charge of a lack of balance between the psychological and the biomedical models of the illness at the April meeting of the CCRNC. She said that, after her experience of working with patients with other chronic conditions such as cancer and arthritis, she had been surprised to find that this was an issue with CFS/ME. She had not had any personal problems with it – in fact she found that sufferers have broader minds that many with other illnesses, possibly because they had been so neglected and forced to fend for themselves. The April conference had been full of variety, with lots of biology, but she accepted that they did not get it right. There was a problem in that many invited speakers, whose contributions were valuable, would not attend or would not agree to their papers being made public because they were wary of criticism.

Charles Shepherd asked whether the CCRNC had a view about causation, particularly the roll of deconditioning and abnormal illness behaviour. Dr O’Dowd said there was no overall view as there was no defined causation and the processes were not yet understood. This should not stop people being helpful. Patients understood well what affected them and any fitness programmes were developed jointly with the patient. Very few could be described as deconditioned.

Mary-Jane Willows commented that there was ‘no one voice’. If everyone did the same there would be no learning. Models of service were one of the factors in terms of outcomes.

Janice Kent asked about adverse effects from participation in the PACE trial. She described what had happened to a particular patient from her group, she was advised to obtain the patient’s permission and to feed back to the PACE triallists. It was essential that they were aware of bad results as well as good ones. Dr Crawley pointed out that all treatments have some side effects and that it was important to find those that worked for individual patients.

Christine Harrison asked whether CCRNC had a website. She commented on the lack of any services in East Anglia and asked whether they used patients in their training sessions. She also asked whether CFS/ME should be included in neurology training. There was no dedicated CCRNC website. As CFS/ME was bigger than just neurology, it was not thought appropriate to confine it to ‘one box’. The lack of GP services meant no home visits. As a result, there was an unknown number of patients who had fallen off the radar of NHS care. Unfortunately, there were not enough resources to cover every contingency and it was impossible to train GPs who do not want to listen.

Peter Spencer echoed the need for training and commented on the variations in awareness of CFS/ME. *He understood that Dr Miller of Liverpool University had developed a training module on CFS/ME for the Royal College of physicians. The workshops at the April conference had involved professional workshops and good interaction. Assumptions about the agenda for the conference were, unfortunately, based on assumptions about where speakers came from rather than facts based on what they actually said. AfME was associated with PACE and had been pleased by the very low drop-out rates. He agreed that adverse effects should be reported. There was a need to reconcile evidence of NHS providers with patient surveys on outcomes and to question the differences. In so far as GET was concerned, there was a need to look at the detailed evidence with clinicians. For example, he asked whether it was proper GET. Were randomised control trials appropriate for long-term, chronic conditions such as CFS/ME? He agreed that evidence based principles were essential.

Charles Shepherd asked whether there were exclusion criteria as he had a case where a patient had been excluded on grounds of obesity. Dr Crawley said there was no central policy. She screened her patients because there were other causes of fatigue and she had found one child with undiagnosed leukaemia. She could not judge decisions made by other clinicians.

5. **Lightning Process:

Charles Shepherd had been made aware of a meeting which was to take place at University College London in conjunction with Great Ormond Street Hospital which appeared to promote the Lightning Process for patients with CFS/ME. As Dr Crawley knew something about the subject, she was asked to remain and to contribute to the discussion. Of particular concern was the promotion of the programme to vulnerable clinicians who had just started to practice. After some discussion about the pros and cons of the programme, it was agreed that Mary-Jane Willows would talk to the organisers on behalf of Forward-ME highlighting our concerns.

6. APPG Inquiry:

As this had been discussed at the APPG meeting that took place immediately before the Forward-ME meeting, it was agreed that there was not much more to be said, though there were concerns about delays and the incomplete coverage of prospective witnesses with questionnaires.

7. MRC Project:

***Charles Shepherd reported that the latest information was in the MEA magazine and on their website.

8. Any Other Business:

Margaret Mar reported that she had had an interesting meeting with Dr Wendy Ewart, Director of Strategy for the MRC. She was interested to work with us and to meet the CCRNC team.

Following a letter from InvestinME [sic] in which the difficulties of working with charities and groups who were not of the same mind on particular matters, Margaret Mar had written to them asking whether they wished to continue with their membership of Forward-ME. This would be discussed further at the next meeting.

There being no further business, Margaret Mar thanked Dr Crawley and Dr O’Dowd for their very full presentations and for their candid responses to our questions. She hoped that they would both agree to continue to work with Forward-ME.

9 Date of Next Meeting:

To be advised.

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*Dr Alistair Miller was a presenter at the Royal Society of Medicine “Chronic Fatigue Syndrome” Conference on 28 April 2008:

Download Abstracts and Biographies [PDF 86k]
http://www.rsm.ac.uk/chronicfatigue08/abs.pdf

What drugs can I use? [PDF 243k]
Dr Alastair Miller, Royal Liverpool University Hospital

http://www.rsm.ac.uk/chronicfatigue08/moss_miller.pdf

What drugs can I use? Dr Alastair Miller
http://rsm.mediaondemand.net/player.aspx?EventID=1337

**Please note that ME agenda is unable to enter into correspondence around the Lightning Process.  Please direct any enquiries regarding the content of these Minutes to the Chair of Forward-ME.

***Refers to the MRC CFS/ME multi-disciplinary panel chaired by Prof Stephen Holgate.  Although the group has held several meetings, the group’s Terms of Reference have yet to be agreed and published (FOI Act).

RiME: NHS Services Inquiry 22 April 2009

Permission to Repost

Campaigning for Research into ME (RiME)

NHS Services Inquiry

Before the summary of last APPG meeting plus Press Release (below), a few comments:

Note that the inquiry is about ‘ME/CFS’. The services descriptions in many parts of the country (see RiME Website, Clinics folder) demonstrate a wide remit re. patient controls. Not surprising given they are the product of the CMO Report, which was affected by work to do with a loose definition of CFS (see my comments at meeting).

So, this is not about ME as described by G93.3 or Canadian Criteria.

RiME will submit evidence but says, ‘in the context of ME does the project have integrity or credibility?’

The Chair of the APPG seems to be the person currently leading the inquiry. The APPG recognises G93.3 but the Inquiry, it appears, will be on something different.

If the APPG did have integrity and credibility, would it not be fighting the corner of ME patients; and if it were, would it not be critical of the clinics and pushing for biomedical ME Research?

Instead, we have the Inquiry. Already, people are commenting on it within a wider political context. Three on the committee (see below) are members of the Labour Party. A common question appears to be, ‘will it try to concoct a favourable report and publish it in the run up to the next election?’

RiME Summary of APPG Meeting 1/4/09

1.20 pm Terms of Reference 2 handed out by Heather Walker (AfME).

1.30 Meeting starts. Minutes becoming too detailed – Des Turner MP (Chair). Transcript will be available for this meeting soon. Minutes agreed after a couple of corrections.

Turner: Website with Inquiry details will be online next week.

Alan Golds says name of illness is important: CFS is not ME and this is at heart of issue. Turner says that’s debatable.

Jane Colby said ME must be separate from CFS.

Doris Jones says NICE guidelines naming of illness are at odds with WHO.

Annette Barclay asked about reporting on adverse reactions to treatments like CBT and GET in the NHS. She asked if this was covered in the ToR. Yes, said the Chair.

Jo Dubriel asked about drop-outs re. services.

Kirsty Heyward (Royal College of Nursing) said a study paper was under review (she spoke about different methods for measuring outcomes in CFS research) and will be published on PRIME website.

Sue Waddle asks if will there be anonymity for those giving evidence to inquiry. Turner says yes.

Joy Birdsey said parents feared child services.

Paul Davis RiME said that ME patients are boycotting the clinics because they are not about ME. I offered to read out anecdotes from ME patients in Yorks but Turner declined. The clinics are a product of the CMO Report 2002 and there is a road map: CMO Report > York Review 1 > a certain school of psychiatry. The toothpaste is now out of the tube. If I remember correctly, Turner said something about going with what we have.

Later, I mentioned that Sue Pemberton (OT Leeds Clinic) has done a survey saying 90% of patients had been helped by the service. Comments from an ME patient (1) the majority of attendees probably didn’t have ME (2) the clinics are dumping grounds for GPs who have patients with unexplained symptoms (3) what does help mean; little more than a chat perhaps?

Heyward says timetable for inquiry is too short. Doris Jones agrees. So did I (Paul Davis). Turner says Inquiry will be announced in press.

Andrew Stunell MP says inquiry will have limitations and people should not get their hopes up.
Peter Luff MP says report must be ready by next election (Stunell indicates May 2010).
Dr Derek Pheby has reservations about timetable.
Jill Cooper mentions how unhappy she is about the Milton Keynes conference this month (A).
Heather Walker (AfME) says that NICE guidelines might become mandatory.
Birdsey says that she knows of GPs who feel the government is interfering with their work.
Pheby – NICE guidelines are a curate’s egg.
Jones says that 88% of groups she contacted were against the NICE Guidelines.
Cooper says diagnosis is too wide and as a result, the illness is not taken seriously.

Sue Waddle said, if I remember correctly, (1) the Gibson Report was good but went up in a puff of smoke (2) the CMO Report was good but hadn’t been acted on.

Turner said that written evidence for Inquiry will be taken from patients and providers.

Next meeting: 2pm, 24th June 2009 – Turner. 14.55 Meeting ends.

(A) A paper was sent in by West Midlands ME Groups Consortium raising concerns about another NHS CFS/ME training conference in Milton Keynes; it is about mental health issues and getting patients back to work. It urged the CNCC to consider more robust diagnostic criteria ie Canadian and G93.3.

Disclaimer: the above is based on scribbled notes and I cannot guarantee 100% accuracy. It is confined to matters pertaining to Services Inquiry and related issues.

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APPG Press Release 3/4/09: NHS Inquiry

Dr Des Turner MP, Chair of the APPG on ME, has today issued a press release, launching an inquiry into NHS service provision for people with ME/CFS in England.

The inquiry committee will consist of Dr Turner MP, Dr Ian Gibson MP, Tony Wright MP, Andrew Stunell MP, Peter Luff MP and the Countess of Mar.

Announcing the terms of reference, Dr Turner said:

“The committee will consider written evidence from patients and professionals before inviting individuals and organisations to make oral presentations.

“Written evidence will include the findings of questionnaires, for patients and NHS service providers, which are currently being drawn up.

“People with ME, carers and professionals are invited to submit suggestions for specific questions which should be asked in these surveys. Our deadline for receiving people’s ideas is 5 May 2009.

“The cut-off point for the submission of written evidence will be 30 June 2009. Oral hearings are likely to take place in the middle of July.”

A website is being set up for the inquiry, which will include the timetable of activities.

Until the website is activated, correspondence to: Dr Des Turner MP, 179 Preston Road, Brighton, BN1 6AG.

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Overview:

Meeting: It was a bit better in that several raised concerns about nomenclature and classification; too, there was some criticism of the NICE Guidelines.

I don’t think it helps if people publicly express support for the CMO and Gibson Reports (certainly not in the context of services):

The CMO Report 2002 was not about G93.3 ME. It associated ‘CFS/ME’ with (1) inactivity and activity avoidance to be combated via GET (Section 46) (2) faulty belief systems to be combated via CBT (48). These types of treatment are now being implemented via the clinics.

The Gibson Report 2006 said (A) that it was extremely pleased with the advent of these centres and we hope they will be maintained and rolled out (5.1.) (B) that they were to his (Wessely’s) model (3.2) (C) that it was impressed with the work of Trudie Chalder (4.3) saying this treatment (CBT) has a role to play in treating CFS/ME.

Press Release – Inquiry: First, one has to get comments in re. survey by May 5. I’m going to take a short rain check on this (and commenting on Terms of Reference 2). Enough for the moment. RiME will post again, shortly, and give some space to inquiry on website.

Paul Davis

22 April 2002

 rimexx@tiscali.co.uk    www.rime.me.uk

CFS/ME Clinical & Research Network & Collaborative (CCRNC) 2009 Conference

Note: The programme for last year’s Collaborative Conference was developed in collaboration with the UK ME/CFS charities AfME (Action for ME) and AYME (Association of Young People with ME). 

A copy of the 2007 programme is archived here: http://tinyurl.com/ccrnc2007

The 2007 Conference presenters had included Vincent Deary (formerly King’s College London CFS Unit), Trudie Chalder (Professor of Cognitive Behavioural Psychotherapy, Department of Psychological Medicine, King’s College London and colleague of Professor Simon Wessely) and Dr Mary Burgess (Chronic Fatigue Syndrome Research and Treatment Unit, KCL), author of Physiological Aspects of Chronic Fatigue Syndrome

This unreferenced article, based on the work of Dr Pauline Powell (MRC FINE Trial) concludes that the symptoms of “CFS” are caused and maintained by “deconditioning”, “faulty illness beliefs” and anxiety and that there is good evidence to show that the effects of these are “reversible by a programme of gradual physical rehabilitation”.

The 2007 Keynote speaker was Professor Gijs Bleijenberg, Clinical Psychologist and Head of the Nijmegen Expert Centre for Chronic Fatigue, Netherlands – another speaker from the “CBT for CFS” school.

Members of UK ME patient organisations, non members and the international ME community were outraged, in 2007, by the endorsement of this conference by our patient organisations AfME and AYME.

This year’s Keynote Speakers will be Professor Mansel Aylward, Director of Unum Centre for Psychosocial and Disability Research (CPDR), University of Cardiff on “Pathways to work (exact title tbc) and Professor Christine Heim, Department of Psychiatry and Behavioral Sciences, Emory University School of Medicine, USA who will address the conference on “Early Adverse Experience as a Risk factor for CFS: A Psychobiological Perspective”.

What is there to say, other than that Action for ME and AYME’s endorsement of these conferences is enough to make you weep.

2009 Collaboration Conference Programme Flyer

Action for ME  |  AYME   |  NHS

CFS/ME Clinical & Research Network & Collaborative (CCRNC) 2009 Conference

PDF Flyer 

AYME and Action for ME in collaboration with the CCRNC

Milton Keynes 23rd-24th April

This is the second national conference for specialist services and health professionals working with people with Chronic Fatigue Syndrome/ME.

The aims are fourfold:

i) to invite national and internationally renowned speakers to broaden the understanding of CFS/ME, both theoretically and practically

ii) to run workshops where relevant issues are discussed more informally

iii) to serve as a forum for national meetings and the AGM.

iv) to provide varied networking opportunities.

We have endeavoured to have a range of topics covered. These include the national research agenda, biological factors, ways of working with clients/patients, involving service users, work, diet, and looking at the measurement of fatigue in other health conditions. Presenters/workshop conveners include occupational therapists, psychologists, medics, neurologists and dieticians.

The inaugural conference in October 2007 was very well attended and well received. Our hope is that this year’s meeting is equally successful.

The AGM and Collaborative Executive meetings will be held first on the  Thursday.

After the opening address and Keynote Speaker, the workshops will run in parallel sessions in the afternoon. Each workshop will be run twice, allowing people to attend two workshops in the conference. You can choose your preferred workshops on the attached application form, or decide on the day (although some of the workshops may be filled by then). Friday is given over to the plenary and second Keynote Speaker, and time for viewing posters.

The conference dinner will be held on the Thursday night in Jurys Hotel.

You will find a registration form at the end of this document: please complete this, and return it before March the 6th 2009 for an “Early Bird” discount.

Registration Fees are:

  • Early registration £100 for one day, £150 for both
  • Late registration £125 for one day, £200 for both days
  • Conference Dinner: £30 plus wine

Accommodation is not included within these costs (see below for accommodation details).

CME approval is pending: attendance certificates will be supplied.

Poster Session

An invitation has been sent for posters for the conference. The deadline has, now passed but please contact Gabrielle Murphy for any further information.

(Gabrielle.Murphy@royalfree.nhs.uk ).

CRCCNRCRRC AGM and Executive Committee Meeting: Thursday

Please contact Esther Crawley (Esther.Crawley@Bristol.ac.uk) for more details.

 

Thursday: Keynote Speaker

Professor Mansel Aylward

Director of Unum Centre for Psychosocial and Disability Research (CPDR), University of Cardiff

Pathways to work (exact title tbc)

 

Workshops: Thursday Afternoon

Delegates can choose to attend two out of the following workshops:

 

A brief introduction to Motivational Interviewing

Jane Griffin

(Lead Commissioning Manager for Plymouth PCT)

 

The NOD (National Outcome Database) and evaluating services

Esther Crawley

(RNHRD CFS/ME Service for Children and Young People, Bath)

 

Helping people retain and return to work

Beverley Knops and Fiona Wright

(Frenchay CFS/ME Service, Bristol)

 

Lessons from my journey – feedback from collaborative projects between patients and professionals.

Sue Pemberton

Leeds & West Yorkshire CFS/ME Service

 

Talking about Sex: Missing Conversations in CFS/ME

Dr Amanda O’Donovan

Barts and the London NHS Trust

 

Dietary management of CFS/ME

Judith Harding and Sue Luscombe

NHS South West Essex Community Services

 

Friday: Keynote Speaker and Plenary Sessions

KEYNOTE SPEAKER:

Professor Christine Heim

Department of Psychiatry and Behavioral Sciences, Emory University School of Medicine, USA

“Early Adverse Experience as a Risk factor for CFS: A Psychobiological Perspective”

 

Dr Esther Crawley

RNHRD Paediatric CFS/ME Service, Bath.

“Current research in paediatrics and early intervention in schools”

 

Dr Jeremy Hobart

Peninsula Medical School, Plymouth, UK.

The challenge of measuring fatigue (exact title tbc)

 

Dr Mary Welford

Compassionate Mind Foundation

“Compassion Focused Therapy and Engagement”

 

Professor Stephen Holgate

MRC Research Professor of Immunopharmacology, Southampton University

“Setting a new research agenda for CFS/ME”

 

Accommodation

Accommodation is available in Jurys Hotel itself. Please book on line and book early for the best rates. Prices start from £75 per night.

www.jurysinn.com

There is a link to more accommodation details on the registration form.

RiME Summary of APPG Meeting 22/1/08

RiME Summary of APPG Meeting 22/1/08

The meeting took place in Committee Room 17, and started at 4.00pm. Five MPs – Ian Gibson, Tony Wright, Andrew Stunell, Ann Keen + Kerry McCarthy – and the Countess of Mar – attended.

Minutes: I Paul Davis RiME said that what I said July 12 ’07 was not reported, or even reflected accurately, in the minutes. I read out the comments of 5 Group leaders which condemend the services in their respective areas. Two of the five (Kent + Birmingham) were not mentioned at all, the other three were not accurately reported. My statement, corroborated by three attendees, has been sent to the Chair + Secretariat; will the minutes be amended accordingly. They will.

If I remember correctly, the Chair of Sussex Group and Charles Shepherd MEA cut in, commending the work of Dr Mitchell. This had nothing to do with what I said at the last meeting. I simply read out a letter from the Chair of the Norfolk Group which raised concerns about the current services in Norfolk (Mitchell retired there Sept. ’06, according to Norfolk Group). Details and concerns re. the Norfolk Services can be found at www.erythos.com/RiME  clinics folder.

At this point Angela Kennedy drew people’s attention to her and Ian Mclachlan’s Petition; signed by over 500 it raised concerns about the nature of current ‘CFS/ME’ Services, that is the psycho-social approach. The Chair asked for a vote to have the statement included in the minutes. Why? The vote was 14/0 in favor.

Getting back to the minutes, I said this is not the first time that RiME’s comments have not been accurately reported or reflected eg July 2006: RiME’s comments re. services were reduced and diluted; important details omitted, altogether. Many appear to be of the view that the minutes are being manipulated and that MPs are being misled on issues such as services.

I also pointed out that the minutes say, ‘The Chair noted that the views of Mr Davis and those quoted in the letter did not seem to reflect those of the majority’, but that four people at the meeting do not recall this being said (this matter was not resolved at this point in time and I referred back to it at 5.00pm, asking that the statement be retracted. It was decided by a show of hands that it wouldn’t. I said in that case the matter will be referred to the Parliamentary Commissioner).

If I remember correctly, again, Tony Wright MP cut in at this point; he seemed annoyed at the points I had raised re. the minutes, people ‘harping on’, and said that Des Turner was sick and tired of the way he was treated at APPG meetings.

At this point, the Countess of Mar said something about, ‘I’m not listening to this’ and walked out.

Annette Barclay said she thought Paul Davis (RiME) was badly treated at the last meeting; she registered her disapproval of the heckling that he received and said at that moment the meeting broke down. Doris Jones 25% Group also said she felt Paul Davis hadn’t been well treated, and said that controversial subjects are not always mentioned in the minutes.

DWP: Barbara Robinson spoke about her discussions with the DWP and ATOS. She has approached them and hopes to meet them with ideas on how knowledge and training can be improved.

Shepherd said that without any DWP data to go on, following the introduction of the new guidance July 2007 all one has is anecdotes; more info. is required before asking a DWP Minister to return to the APPG; he suggested, meanwhile, a meeting with the DWP to discuss continuing concerns.

Gibson asked Charles Shepherd MEA if he would like an EDM on services. Shepherd says yes.

NHS Plus: Shepherd said the final version has not been seen. Dr Maddon was making some changes. Peter Spencer AfME was asked why Chris Clarke had signed them; he said Dr Maddon had not been able to prove this (which she had earlier claimed).

AfME Collaborative Conference: Peter Spencer AfME said he started the Conference by saying (1) proper debate must be carried out (2) there must be a commitment to learning from best practice (3) an over-dependence on some research data was destabilising research. Mary Jane Willows AYME said some were disappointed that certain people had not been invited; this was because some of her speakers had not been heard and this was more important.

Jane Colby TYMES said that David Salmon? had had a paper accepted by a medical journal; the paper questioned the data in another paper published by Peter White. White had claimed in a publication that PWCFS who had co-morbid or previous psychiatric history were more likely not to recover. Spencer reacted angrily to this saying ‘how can you do this to a professional… ‘

Ann Keen turned up just after 5.05pm. MP for Brentford and Isleworth since 1997 she had spent 25 years in nursing and worked with people with long term disabling conditions; she had seen ME first-hand and said she was aware of the problems patients faced (1) the need for early diagnosis (2) unsympathetic GPs (3) the lack of medical education (4) research or the lack of it – including epidemiology.

Point 4 – Good. I will drop Ms Keen a line thanking her for her interest but ask exactly what she is doing to affect this.

On the question of nomenclature, Ms Keen was comfortable with describing ME as neurological. And there was no objection to the term from the neurologist who was with her.

Willows made some points re. existing services as did Christine Harrison (BRAME). There were also comments on the proposed new service in Kirklees West Yorks. Colin Barton Sussex said most services are OK but need expanding; Joy Birdsey replied, ‘what planet are you on’? (Ed. we don’t get good reports on services in Sussex. Far from it). There was talk of setting up a meeting with Lord Darzi, Under Secretary of State at the DoH re. services.

 

Disclaimer: The above is compiled from mine and others’ scribbled notes. I cannot guarantee 100% accuracy.

Overview

Exchanges at recent meetings reflect divisions within the British ME Community. As ever, a few say, ‘sort it out and unite’. Unfortunately, it’s not that easy. There is a lot of history…

One of the tragedies of ME in the UK is that those organisations originally set up to represent people with ME have never been up to the task. Instead of doing just that, those who run them appear to be primarily motivated by (1) self-interest and (2) in a related way – often working on flawed projects with public officials and the Government which funds them. But it goes deeper than this; they have let us down so badly. Unwisely, the aforementioned have colluded with the Government in projects which were never about G93.3 ME but loosely defined CFS. The results in terms of diagnosis, treatment, research and welfare for ME patients are clear to see. Take the CMO process/Report; this was not about G93.3, and ME patients are now suffering its results in terms of services. Time and again, ME people contact me and say, ‘but this is not about ME’. Please note that a number of ME parties, notably the 25% Group, would not sign; the latter’s reasons were to do with the fact that it didn’t recognise G93.3 and recommended psychiatric models of treatment ie GE/CBT.

The APPG then, primarily a vehicle for promoting Govt policy, had ready-made allies at its inception 1999. The influence which the MEA and AfME have within the Group is totally disproportionate to the size of their memberships, which have plummeted in recent years (they probably wouldn’t represent 5% of ME patients currently).

RiME is about G93.3 ME. A person said to me recently ‘can’t you find middle ground with the likes of AfME… ‘. I tried to explain that this was not possible. In order to do that, RiME would have to shift away from the G93.3 classification and the Canadian Criteria which describes a neuro-immune-endocrine-vascular illness. I’m not prepared to do that and say to such people, ‘don’t ask RiME to be less than what it is’.

One difference between us and the likes of AfME, MEA, AYME… is our view of ‘CFS/ME’ services. We believe that the large majority with G93.3 ME don’t want them; they say vica-versa. There is a difference, though; our position is backed up with no fewer than 20+ pages of evidence (see website – clinics + letters); where is theirs? I made this point at the July ’07 meeting; needless to say, it was omitted from the minutes. I wrote to AfME + MEA again on this Oct. 2007 (clinics folder – letters to MEA, AfME); they haven’t replied.

Meantime, what about research? It has barely featured at recent meetings. Are MPs being misled into thinking that ME patients are getting effective treatment via the clinics and, therefore, it is not urgent? This is what they might think reading the manipulated APPG minutes? Shortly, RiME will be launching the RiME Referendum: a letter will go to each of the 646 MPs asking whether or not they think the Government should be funding research into the aetiology and pathogenesis of ME. I hope (health permitting) to report the results at an APPG meeting, and ask what the APPG is doing in this area.

Paul Davis

Email RiME

Campaigning for Research into ME (RiME)

We welcome unused postage stamps.

Revised version of APPG meeting, January 22 – a personal summary, C Shepherd

Issued by Dr Charles Shepherd

28 January 2008

NB: This revised version contains an addition to the list of MPs and national patient group representatives who were present as well as an item that came under AOB. Apologies to those whose names were omitted first time round. CS

MAY BE REPOSTED

This is a short personal summary/sketch of key points to emerge from the All Party Parliamentary Group (APPG) meeting held on Tuesday 22 January 2008

A more detailed account – in the form of the official minutes being prepared by The ME Association – will follow later.

VENUE

Committee Room 17, House of Commons

ATTENDANCE

Parliamentary:

Ian Gibson MP
Kerry McCarthy MP
Andrew Stunell MP
Tony Wright MP
Countess of Mar

There were numerous apologies from MPs as other important meetings were taking place, including a debate in the House of Commons chamber on the Energy Bill.

Secretariat:

AfME: Sir Peter Spencer and Heather Walker
MEA: Tony Britton and Dr Charles Shepherd

National ME charity and ME organisation representatives:

25% Group: Doris Jones
AYME: Mary Jane Willows
BRAME: Christine Harrison
MERUK: Sue Waddle
RIME: Paul Davis
Tymes Trust: Jane Colby

There were also around 20 others present: parliamentary assistants; local group representatives; people with ME and carers. A full list of those attending will appear in the minutes.

In the absence of Des Turner, who was taking part in the Energy Bill debate, the meeting was chaired by Ian Gibson with his usual good humour and tolerance.

MINUTES OF PREVIOUS MEETING

The meeting opened with a prolonged and at times quite heated discussion relating to disagreements with the previous APPG minutes that had been raised in letters from Paul Davis and Angela Kennedy – both of whom spoke.

MATTERS ARISING AND ROUTINE BUSINESS

Having been notified that Ann Keen, Parliamentary Under Secretary at the Department of Health, would be late the secretariat provided a brief update on current ‘hot topics’. A background briefing paper on these ‘hot topics’, prepared by the MEA, was circulated to those present.

Adjournment debate: CS reported that John Bercow MP had not been successful in achieving a slot through the December ballot. John Bercow is going to keep trying as the opportunity arises.

DWP medical guidance on ME/CFS: CS reported that without any DWP statistics to go by following the introduction of this new guidance in July 2007 all we have are continuing anecdotal reports, and that more information on benefit problems is really required before asking a DWP minister to return to the APPG. As an alternative, it was decided to consider the possibility of arranging a meeting with the DWP to discuss our continuing concerns over benefit problems.

NHS Plus leaflets on Occupational Health: CS reported that Dr Ira Madan had written back to the MEA on January 11 to say that she was considering the points made in the joint charity response submitted by the MEA and that revised versions of the three leaflets were now being prepared. PS was hopeful that the amendments would meet the concerns and objections that have been expressed.

NHS Collaborative Conference: PS and MJW gave a positive report on this conference about which concerns had been expressed at the last APPG meeting.

PREPARATION FOR PRESENTATION BY THE MINISTER

With no sign of the Minister, Ian Gibson felt that we should move on and agree a small number of key points that should be raised in the limited amount of time we were likely to have with the Minister and what we should ask for at the end in order to keep the momentum going – otherwise we were going to miss a marvellous opportunity to contribute to government policy making..

It was decided to concentrate on the issue of NHS services – in particular problems with existing services (ie financial cutbacks and closures following the end of the £8.5 million ring fenced funding from the DoH) and new services that are being introduced or proposed following the NICE guideline (ie early indications that PCTs may be opting for services that are not physician led, offer no diagnostic service, and concentrate on CBT and GET). And as Lord Darzi would be completing his work on the long term neurological conditions chapter of his NHS review fairly shortly, we should be seeking an urgent meeting with him to discuss ME services.

Ian Gibson suggested that it may be useful to prepare another Early Day Motion (EDM) – this time concentrating on services.

Ian Gibson also suggested that the time may have come for the government to appoint an ‘ME Tsar’ who can deal with all the various issues relating to ME – in the same way that high profile diseases such as cancer and heart disease now have their own government health tsars.

MINISTERIAL PRESENTATION FROM ANN KEEN MP

[NB: Ann Keen entered parliament in May 1997 as member for Brentford and Isleworth]

Ann Keen and her entourage arrived shortly after 5pm.

Accompanying her was Dr Chris Clough – a consultant neurologist from King’s College Hospital, London – who is also a member of the External Reference Group for the National Service Framework in long term neurological conditions.

Ann Keen started off by explaining that she had spent 25 years in nursing – much of this in the community working with people who have long term disabling conditions.

She clearly understood and sympathised with many of the well known problems facing people with ME:

a Unsympathetic doctors
b Lack of medical education and training on ME
c The need for early diagnosis
d Good quality management that covers all aspects of the illness
e Research, or lack of it, including the need for better epidemiological data so that health providers know the full extent and severity of the problem

I doubt if anyone would disagree with the aspirations that Ann Keen expressed when it comes to improving the situation for people with ME.

Whether the Minister can actually deliver any of these changes remains to be seen. And while accepting that local decisions about the funding of service provision could create problems, there was no indication that the DoH was going to make any further special case for ME or be more proactive in telling PCTs what to do.

On the question of classification, Ann Keen was quite happy to use the term ‘neurological’ as the best way of describing ME – which she did on several occasions . And there was no objection to the term neurological from the neurologist who was present. Could this actually signal the end of the road for the dreadful term ‘biopsychosocial illness, so favoured by the psychiatrists and NICE?

Key points relating to existing services and new services were put by MJW (as PS had to leave and catch a train to Edinburgh), CS and Christine Harrison (BRAME).

Ann Keen said she was happy to stay on and answer a few questions – which she did. Question time included some comments on the proposed new service in Kirklees, West Yorkshire – where the impetus has come from a rise in the number of neurological referrals.

The meeting concluded by thanking Ann Keen for coming and offering to try and set up a meeting with Lord Darzi, Parliamentary Under Secretary of State at the DoH, to discuss the whole issue of NHS service provision for people with ME. More information on this proposed meeting. and the EDM, will appear on the MEA website as it becomes available.

ANY OTHER BUSINESS

Jane Colby presented a paper, through the Chair Ian Gibson, that contains a critical evaluation of some of the research input that comes from psychiatry. A copy of the paper was given to the Minister.

CLOSE OF MEETING

The meeting closed shortly before 6pm.

The topic and date of the next meeting has still to be arranged.

Ann Keen website

Personal comment: 

[Ed: The text of this section has been omitted at the discretion of the publisher, ME agenda.  Please refer to notes at top of posting  APPG meeting, January 22 – a personal summary by Dr Charles Shepherd ]

Dr Charles Shepherd
Hon Medical Adviser, The ME Association
25 January 2008

APPG meeting, January 22 – a personal summary by Dr Charles Shepherd

ME agenda notes:

1] Please note that the following summary of the January APPG meeting has been published and circulated as a “personal summary” by Dr Charles Shepherd, although it  has been  signed in  Dr Shepherd’s capacity as Hon Medical Adviser, The ME Association.  The official Minutes of the meeting which took place on 22 January will be published later.

2]  At the end of this “personal summary” Dr Shepherd has included a section headed “Personal comment”.  The text of this section has been omitted from the copy below at the discretion of the publisher, ME agenda.  The owner of this site is not prepared to give a platform to Dr Shepherd for publishing comment of an inflammatory nature.  The summary of this APPG meeting is signed by Dr Shepherd in his capacity as Hon Medical Adviser, The ME Association and is published as such on the ME Association’s website.  If Dr Shepherd wishes to publish personal opinion and comment of any nature it is considered that he should do so separately and on a purely personal basis and not as part of a summary published in the name of The ME Association.  To do otherwise is considered an abuse of Dr Shepherd’s position as Hon Medical Adviser to the ME Association and member of the Board of Trustees.

3] The organisation MERUK were represented at the meeting by Mrs Sue Waddle.

 

APPG meeting, January 22 – a personal summary

by Dr Charles Shepherd
Hon Medical Adviser, The ME Association
25 January 2008

This is a short personal summary/sketch of key points to emerge from the All Party Parliamentary Group (APPG) meeting held on Tuesday 22 January 2008

A more detailed account – in the form of the official minutes being prepared by The ME Association – will follow later.

VENUE

Committee Room 17, House of Commons

ATTENDANCE

Parliamentary:

Ian Gibson MP
Tony Wright MP
Andrew Stunell MP
Kerry McCarthy MP
Countess of Mar

There were numerous apologies from MPs as other important meetings were taking place, including a debate in the House of Commons chamber on the Energy Bill.

Secretariat:

AfME: Sir Peter Spencer and Heather Walker
MEA: Tony Britton and Dr Charles Shepherd

National ME charity and ME organisation representatives:

25% Group: Doris Jones
AYME: Mary Jane Willows
BRAME: Christine Harrison
RIME: Paul Davis
Tymes Trust: Jane Colby

There were also around 20 others present: parliamentary assistants; local group representatives; people with ME and carers. A full list of those attending will appear in the minutes.

In the absence of Des Turner, who was taking part in the Energy Bill debate, the meeting was chaired by Ian Gibson with his usual good humour and tolerance.

MINUTES OF PREVIOUS MEETING

The meeting opened with a prolonged and at times quite heated discussion relating to disagreements with the previous APPG minutes that had been raised in letters from Paul Davies and Angela Kennedy – both of whom spoke.

MATTERS ARISING AND ROUTINE BUSINESS

Having been notified that Ann Keen, Parliamentary Under Secretary at the Department of Health, would be late the secretariat provided a brief update on current ‘hot topics’. A background briefing paper on these ‘hot topics’, prepared by the MEA, was circulated to those present.

Adjournment debate: CS reported that John Bercow MP had not been successful in achieving a slot through the December ballot. John Bercow is going to keep trying as the opportunity arises.

DWP medical guidance on ME/CFS: CS reported that without any DWP statistics to go by following the introduction of this new guidance in July 2007 all we have are continuing anecdotal reports, and that more information on benefit problems is really required before asking a DWP minister to return to the APPG. As an alternative, it was decided to consider the possibility of arranging a meeting with the DWP to discuss our continuing concerns over benefit problems.

NHS Plus leaflets on Occupational Health: CS reported that Dr Ira Madan had written back to the MEA on January 11 to say that she was considering the points made in the joint charity response submitted by the MEA and that revised versions of the three leaflets were now being prepared. PS was hopeful that the amendments would meet the concerns and objections that have been expressed.

NHS Collaborative Conference: PS and MJW gave a positive report on this conference about which concerns had been expressed at the last APPG meeting.

PREPARATION FOR PRESENTATION BY THE MINISTER

With no sign of the minister, Ian Gibson felt that we should move on and agree a small number of key points that should be raised in the limited amount of time we were likely to have with the minister and what we should ask for at the end in order to keep the momentum going – otherwise we were going to miss a marvellous opportunity to contribute to government policy-making.

It was decided to concentrate on the issue of NHS services – in particular problems with existing services (ie financial cutbacks and closures following the end of the ring fenced funding from the DoH) and new services that are being introduced or proposed following the NICE guideline (ie early indications that PCTs may be opting for services that are not physician-led, offer no diagnostic service, and concentrate on CBT and GET). And? as Lord Darzi would be completing his work on the long term neurological conditions chapter of his NHS review shortly, we should be seeking an urgent meeting with him to discuss ME services.

Ian Gibson suggested that it may be useful to prepare another Early Day Motion (EDM) – this time concentrating on services.

Ian Gibson also suggested that the time may have come for the government to appoint an ‘ME Tsar’ who can deal with all the various issues relating to ME – in the same way that high profile diseases such as cancer and heart disease now have their own government health tsars.

MINISTERIAL PRESENTATION FROM ANN KEEN MP

[Ann Keen entered parliament in May 1997 as member for Brentford and Isleworth]

Ann Keen and her entourage arrived shortly after 5pm. Accompanying her was Dr Chris Clough – a consultant neurologist from King’s College Hospital, London who is also a member of the External Reference Group for the National Service Framework in long term neurological conditions.

Ann Keen started off by explaining that she had spent 25 years in nursing – much of this in the community working with people who have long term disabling conditions.

She clearly understood and sympathised with many of the well known problems facing people with ME:

a Unsympathetic doctors
b Lack of medical education on ME
c The need for early diagnosis
d Good quality management that covers all aspects of the illness
e Research, or lack of it, including the need for better epidemiological data so that health providers know the full extent and severity of the problem

I doubt if anyone would disagree with the aspirations that Ann Keen expressed when it comes to improving the situation for people with ME.

Whether the minister can actually deliver any of these changes remains to be seen. And while accepting that local decisions about the funding of service provision could create problems there was no indication that the DoH was going to make any further special case for ME or be more proactive in telling PCTs what to do.

On the question of classification, Ann Keen was quite happy to use the term ‘neurological’ as the best way of describing ME – which she did on several occasions . And there was no objection to the term neurological from the neurologist who was present. Could this actually signal the end of the road for the dreadful term ‘biopsychosocial illness, so favoured by the psychiatrists and NICE?

Key points relating to existing services and new services were put by MJW (as PS had to leave and catch a train to Edinburgh), CS and Christine Harrison (BRAME).

Ann Keen said she was happy to stay on and answer a few questions – which she did. Question time included some comments on the proposed new service in Kirklees, West Yorkshire – where the impetus has come from a rise in the number of neurological referrals.

The meeting concluded by thanking Ann Keen for coming and offering to try and set up a meeting with Lord Darzi, Parliamentary Under Secretary of State at the DoH, to discuss the whole issue of NHS service provision for people with ME. More information on this proposed meeting will appear on the MEA website as it becomes available.

CLOSE OF MEETING

The meeting closed shortly before 6pm.

The topic and date of the next meeting has still to be arranged.

Ann Keen website

Personal comment:  [Ed: The text of this section has been omitted at the discretion of the publisher, ME agenda.  Please refer to note at top of posting.]

Dr Charles Shepherd
Hon Medical Adviser, The ME Association
25 January 2008

APPG on ME: Agenda for meeting 22 January 2008

Agenda APPG on ME meeting

Tuesday 22 January 2008
4.00pm-5.30pm
Committee Room 17, House of Commons

AGENDA

1. Welcome by the Chair, Dr Des Turner MP

2. Minutes of the last meeting

  • letter from Paul Davis, RiME
  • letter from Angela Kennedy/Ian McLachlan

3. Main speaker: Ann Keen MP, Parliamentary Under Secretary of State for Health Services

4. Matters arising

  • NHS services
  • NICE guideline
  • Adjournment debate and revised Early Day Motion
  • DWP guideline
  • Occupational Health Guideline
  • NHS Collaborative Conference 

6. Any Other Business

7. Date of Next Meeting

Issued on behalf of Des Turner MP, Constituency office: 179 Preston Road , Brighton BN1 6AG Tel: 01273-330610.

E-mail: turnerd@parliament.uk

Tony Britton
Publicity Manager, The ME Association

Home-based: 60 Broadgate, Weston, Spalding, PE12 6HY
Tel: 01406 370293 Mob: 07880 502927 Email tbritton02@yahoo.com
ME Association

Action for ME (AfME): Statement: NHS Collaborative Conference

ME agenda note: Action for ME have been highly selective in their choice of speakers to include in this statement. Conference speakers also scheduled to give presentations include: Professor Trudie Chalder (Kings College London), Dr Mary Burgess (Kings College London) and Vincent Deary (formerly of Kings College London CFS Unit).


Statement from Action for ME (AfME) regarding the NHS Collaborative Conference

NHS Collaborative Conference
01 August 2007

Action for ME and AYME, the Association of Young People with M.E., are supporting the National Network for CFS/M.E. Therapists and National NHS Collaborative Conference, which will be held in Milton Keynes, 4-5 October 2007. The event, which is being coordinated by the North Bristol NHS Trust, is primarily for health care professionals from the National Network for CFS/M.E. Therapists, Clinical Network Champions and representatives from Coordinating Centres.

It will incorporate the National Network’s AGM, a CFS/M.E. Champions and Coordinators meeting and the inaugural meeting of the Royal College of Paediatrics and Child Health Paediatric CFS/M.E. Special Interest Group.Conference speakers will include Professor Gijs Bleijenberg, Dr Brian Marien, Professor George Davey-Smith, Dr Manny Bagary and Dr Julia Newton.

Sir Peter Spencer, Chief Executive, Action for M.E. said:

“Action for M.E. played a major part in bringing NHS specialist services into being following its work in support of the Chief Medical Officer’s report on M.E./CFS in 2002.

“This conference offers M.E./CFS service providers from across England the opportunity to exchange views on what they have learnt about best practice in treating people with M.E.

“The event will provide Action for M.E. with an ideal opportunity to monitor developments and to actively represent the views and experiences of our members on the basis of previous surveys and recent correspondence.

“We will also be able to increase our understanding of the financial sustainability of these services in different areas – a major cause of concern since ring-fenced funding ceased.

“Although we do not support all of the views that will be expressed, we do encourage professional discussion, confident that in this multidisciplinary environment there will be a strong element of constructive debate by all parties and specialisations.”

Sir Peter will be making the opening presentation at the beginning of the conference and describes the role of Action for M.E. at this event as that of a “critical friend – and in some respects highly critical.” The aim of the Trustees is to work with the NHS to develop treatments that provide the greatest benefit for the greatest number of people with M.E. and especially the severely affected. Another key aim is to campaign vigorously for more research into the causes, prevention and cure of this dreadful illness.

Further information about the event is available here or in a previous posting on ME agenda here

APPG on ME: Minutes of 12 July 07 meeting

Minutes, APPG on ME, 12 July 2007

Minutes of the meeting of the All Party Parliamentary Group on M.E. held at 1.30pm, Thursday 12th July 2007 Committee Room 17, House of Commons

PRESENT

Dr Des Turner MP (Chair)
Dr Ian Gibson MP (Secretary)
David Amess MP (Treasurer)
Celia Barlow MP
John Bercow MP

Koyes Ahmed (Office of Dr Des Turner MP)

Sir Peter Spencer, Action for M.E.
Heather Walker, Action for M.E.
Neil Riley, The ME Association
Dr Charles Shepherd, The ME Association
Tony Britton, The ME Association

Doris Jones, 25% Group
Tanya Harrison, BRAME
Christine Harrison, BRAME
Barbara Robinson, Suffolk Youth & Parent Support Group, member of EAME
Rosemary Page, Cambridge M.E. Support Group
Richard Crossich, North London ME Network
Hazel Griffiths, North London ME Network
Di Newman, Peterborough ME and CFS Support Group
Paul Davis, RIME
Joy Birdsey, RIME
Bill Kent, ReMEmber
Janice Kent, ReMEmber
Colin Barton, Sussex and Kent ME/CFS Society
Jill Piggott, Worcester ME Support Group
Dr Terry Mitchell, Great Yarmouth and Waveney PCT
Barbara Boyden, Peterborough Team Nurse
Dr Anne Gerken, Norfolk & Suffolk M.E. service
Doug Fraser (?), Hammersmith Group
Brook Hoadley, parent of teenager with M.E.
Annette Barclay, person with M.E.
Christine Russo, person with M.E.
Augustine Ryan, person with M.E.
Criona Wilson, mother of the late Sophia Mirza

1. Welcome

Dr Des Turner thanked everyone for attending and welcomed them to the meeting, particularly the main speaker – Dr Terry Mitchell, the regional NHS clinical champion for M.E./CFS in East Anglia. Continue reading “APPG on ME: Minutes of 12 July 07 meeting”