BACME Conference and AGM (UK)

[Dx Revision Watch]

The MEA issued this notice, today, in relation to the presentation of data from the PACE Trial by Peter Denton White at the BACME Conference for professionals in October. I am following this with some notes on BACME and the provisional Conference programme:

ME Association statement: PACE Trial results in October (UK)

3 September 2010

It is being reported today in Link magazine (issue 39, September 2010) that:

Data collected for the one year follow up of the PACE trial is currently being analysed in preparation for publication of the findings.

Professor Peter White of St Bartholomew’s Hospital, London will report on the most up-to-date progress and baseline data from the PACE trial to delegates at the British Association of CFS/ME (BACME) October conference.

The release of this PACE trial information may well have an effect on a decision by NICE as to when they commence a review of the 2007 Guideline on ME/CFS.

A statement and more information on the NICE Guideline review can be found in the September news section on the MEA website.

Information supplied by ME Association: http://www.meassociation.org.uk

ENDS

----------------------

Ed: The British Association of CFS/ME (BACME) appears to have taken over some of the functions of the CFS/ME Clinical and Research Network and Collaborative (CCRNC). There is no website for BACME and very little information available about the role and operation of this organisation.

BACME is chaired by consultant paediatrician, Dr Esther Crawley (lead researcher, Lightning Process pilot study in children). Assistant Chair is Alison Wearden PhD, CPsychol (lead researcher, FINE Trial).

Related information from the News section of the ME Association website (which includes extracts from BACME’s Constitution for which I do not have access to a full copy):

Questions raised over training role of new body for ME/CFS professionals

‘Parliamentarians should examine role of new NHS training forum for ME/CFS’


This BACME conference and AGM is being held in Milton Keynes on 13 and 14 October and is faciliated by AYME who had collaborated in earlier CCRNC conferences.

Download PDFs for BACME Provisional Programme and Registration Form from ME agenda site here:

BACME 2010 Conference Programme

BACME CFS ME CCRNC conference 2010 Registration Form



BACME 2010 Conference Programme

Provisional Programme

British Association of CFS/ME (BACME)
2010 Conference

Draft Program – please note there may be changes before final program

Milton Keynes 13-14 October
Wednesday 13 October

9.30 -10.30 Registration and coffee

10.30-11.00 Opening Address:

Prof Stephen Holgate MRC (Medical Research Council) Clinical Professor of Immunopharmacology.

“The time has at last arrived to strengthen research into CFS and ME”

11.00 – 12.00 Keynote Speaker: Professor Daniel J. Clauw MD Division of Rheumatology University Michigan

“Advances in Our Understanding of CFS and Overlapping Conditions”

12.00 – 1.30 Lunch Hot and Cold Buffett (preference to be booked)

1.30 -2.15 Dr Alison Wearden Reader in Psychology: FINE Trial

“Pragmatic rehabilitation for Chronic Fatigue Syndrome/ME”

2.15 – 3.00 Judith Harding:
The Role of Diet Management in CFS/ME

3.00 – 3.30 Comfort Break

3.30 – 5.00 Uni – professional Networking Groups.
To be facilitated please contact maryjane@ayme.org.uk asp if you would like to request a specific group e.g physiotherapists, nurses, paediatricians

5.00 – 6.00 BACME AGM Chairperson: Gill Walsh
(for existing and new members)

7.30 Conference Dinner (to be pre-booked separately)


Thursday 14 October

9.00 Registration & Coffee

9.30 – 10.45 Workshop 1

10.45 – 11.15 Coffee & Comfort Break

11.15 – 12.30 Workshop 2

12.30 – 1.45 Lunch Hot and Cold Buffett (preference to be booked)

1.45 – 2.15 Poster Presentations – Organiser Gabrielle Murphy
Posters will be on display for the whole 2 days

2.15 – 2.45 Coffee & Comfort Break

2.45 – 3.30 Diane Cox & Heather Garry
Video Conferencing for delivery of CFS/ME Interventions at Home (Tele-rehabilitation)

3.30 – 4.30 Professor Peter White
St Bartholomew’s Hospital London

“PACE trial: so near yet so far”

(If outcome results are not yet published, Peter White will present the design, progress and baseline data from the trial)

4.30 – 5pm Closing Address – To be announced

WORKSHOPS

1. Working with the Severely Affected – Leeds Service

2. Mindfullness and ME –The Mindfull Approach to Chronic Illnesses Steve Johnson, Director of the Breathworks Foundation

3. Review of Literature and Clinical Implications on Sleep (please note this is not a workshop) Gabrielle Murphy & Alex Westcombe

4. To Be Announced

5. Research workshop – How to do research successfully when you are a busy clinician – Professor Peter White

6. Group work – Michelle Selby and Helen Chub

[Ends]

-------------

Additional information:

Breathworks
http://breathworks-mindfulness.org.uk/the-breathworks-foundation.html

Gabrielle Murphy
A physician working in the Fatigue Service at the Royal Free Hospital and Clinical Lead. She also works in the Department of HIV medicine. Her interests include medically unexplained symptoms MUS). Also involved in local and national organisations promoting access to CFS/ME services and ongoing research.

Coping Better With Chronic Fatigue Syndrome/Myalgic Encephalomyelitis: Cognitive Behaviour Therapy for CFS/ME
http://www.karnacbooks.com/Author.asp?AID=13770

Alex Westcombe
North Bristol NHS Clinical Psychologist
http://www.nbt.nhs.uk/services/criticalcare/painmanagement/who_is_who.htm

Michelle Selby, OT lead, Dorset CFS Service (formerly The Wareham Clinic); Clinical Co-ordinator, Southampton 'CFS/ME' Clinic
http://www.meactionuk.org.uk/RiME_CFSME_Centres_Condemned.html

Dr Helen Chubb, Senior Registrar, Whitchurch Hospital:
Chronic Fatigue Syndrome - personality and attributional style of patients in comparison to healthy controls and depressed individuals
Authors: Helen. L. Chubb; Irene Jones; Janice Hillier; Christopher Moyle; Stephanie Sadler; Tanya Cole; Kate Redman; Anne Farmer
DOI: 10.1080/09638239917274
Publication Frequency: 6 issues per year
Published in: Journal of Mental Health, Volume 8, Issue 4 August 1999 , pages 351 - 359
http://www.informaworld.com/index/T32L42TTQ9N74DN3.pdf

 

[Esther12]

Thanks Suzy.

Do you know who gets to attend this? Will we get to know the details of what was discussed?

 

[Dx Revision Watch]

Thanks Suzy.

Do you know who gets to attend this? Will we get to know the details of what was discussed?

Hi Esther,

In previous years, when these conferences were held under the CCRNC banner, I think I am right in saying that some years, both AfME and AYME have been involved in their facilitation.

They have been intended for professionals. (I have the programme for at least one previous conference on my ME agenda site.)

To the best of my knowledge, no note or summary of previous meetings was published.

I'll ETA with the URL for previous conferences.

Suzy

 

[Dx Revision Watch]

Hi again, Esther.

Can't find a record of a conference for 2008 but the 2007 conference programme is archived on ME agenda here:

http://meagenda.wordpress.com/2007/07/07/collaborative-conference-on-cfsme-4-5-october-2007/

or

http://tinyurl.com/ccrnc2007


At this URL are the details for the CFS/ME Clinical & Research Network & Collaborative (CCRNC) 2009 Conference

http://meagenda.wordpress.com/2009/...-network-collaborative-ccrnc-2009-conference/

February 21, 2009

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).


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

http://www.bartscfsme.org/Documents/Invitation Booklet CFSMECCRNC conference 2009.pdf

(Ed: If this PDF is no longer available online, it's likely I have a copy on file.)

ETA: Yes the PDF is still available.

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.

 

[Dx Revision Watch]

The PDF programme for 2009 stated:

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

Since I have the 2007 conference archived, it was likely the case that no conference was held in 2008.

 

[Dx Revision Watch]

I had to smile (well not really) at this byline for Prof Stephen Holgate who is scheduled to give the keynote address at the forthcoming conference:


10.30-11.00 Opening Address:

Prof Stephen Holgate MRC (Medical Research Council) Clinical Professor of Immunopharmacology.

“The time has at last arrived to strengthen research into CFS and ME”


I thought "the time had come" in 2003 when the MRC launched the research consultation.

I thought "the time had come" in 2006 (?) when the MRC placed a "priority" notice on CFS/ME research.

I thought "the time had come" in 2008 when Prof Holgate convened the MRC CFS/ME Expert Group.

I thought "the time had come" in 2009 when the MRC held the Research Workshop.

How many more years before the MRC actually funds some worthwhile research?

 

[Esther12]

Thanks for all that. I didn't mean to put you out.

I thought "the time had come" in 2003 when the MRC launched the research consultation.

I thought "the time had come" in 2006 (?) when the MRC placed a "priority" notice on CFS/ME research.

I thought "the time had come" in 2008 when Prof Holgate convened the MRC CFS/ME Expert Group.

I thought "the time had come" in 2009 when the MRC held the Research Workshop.

How many more years before the MRC actually funds some worthwhile research?

But this time they really mean it!!


I was wondering about asking some people I know (psychologist, OT, etc) about attending, but they don't really know much about CFS and it looks like it would cost 200 or so, so it's probably not worth it.

They'd just end up committed to challenging my illness beliefs anyway!

 

[Francelle]

Why has the time come to strengthen research into M.E.? What is the magical timeline about the present, that hasn't existed for the past 25 years? Have they been shamed into this by the retroviral studies being published?

Also Gabrielle Murphy's interests including medically unexplained symptoms (MUS) made me smile. Maybe not much longer will MUS and M.E. be connected!

 

[Min]

The doctors attending this travesty of a conference are entrenched in their abnormal illness belief- i.e. they erroneously believe that the neuroimmune illness myalgic encephalomyelitis is somehow a somatoform disorder. They reinforce their beliefs by deliberately doing research only on people who don't have ME but are a just bit tired.


I know that giving to IiME, MERUK and the WPI will eventually show them to be self serving liars responsible for decades of suffering and fro premature deaths, but is there anything we can do to protest about the conference (I'm housebound)?

 

[Dx Revision Watch]

[I've already posted this in a previous thread, several months ago.]


Holgate: AYME LINK, Issue 32 June 2009

AYME (Association of Young People with ME)

LINK, Issue 32 June 2009


A plea to the ME/CFS community to come together

The CFS/ME community must come together or risk fragmented research, a lack of national resources and little progress.

The warning was made by the Medical Research Council (MRC) Strategy Board Member, Professor Stephen Holgate, at a recent two-day conference attended by 150 of the UK's top CFS/ME experts. He added that the hostile approach by some patient advocates has discouraged researchers from entering the field.

Prof Holgate pointed out that the divisions currently in the CFS/ME field are not dissimilar to those affecting the respiratory community five years ago. However, following a determined effort to move forward as one voice, respiratory research has made huge progress.

Prof Holgate said CFS/ME could have more funding for research, more researchers interested in the field and an increased awareness if there was a national joined-up collaborative approach.

"The most important driver will be a national joined-up collaborative research approach involving patients, NHS, charities and the research councils", said Prof Holgate.

A two day workshop planned for autumn this year and organised by the MRS Interdisciplinary CFS/ME Advisory Group, which includes leading CFS/ME paediatrics, psychopharmacology, microbiology, immunology and patients organisation representatives, could be a major step towards positive progress for CFS/ME research.

Prof Holgate told medical professionals at the CFS/ME Clinical and Research Network & Collaborative (CCRNC) Conference in Milton Keynes, that CFS/ME research needs several ingredients to move it forward. These include:

. Increasing the quality of the science
. Multidisciplinary approach
. International collaboration
. More young phD [sic] students coming into this field
. A concentrated effort on sub-phenotyping in adults and children
. Establishment of biobanks (e.g. brain, blood etc)
. Establishment of disease prevalence (epidemiology) and burden
. Continued support, communication and involvement of the unique clinical CFS/ME networks in the UK


-------------

So you see, it's all our fault...but now the "time has come"...

ZZZZZZzzzzzzzzzzzzzzzzzzzzzz

Suzy

 

[Dx Revision Watch]

"He added that the hostile approach by some patient advocates has discouraged researchers from entering the field."

If the money is there the researchers will follow it.

We are being scapegoated.

 

[Dx Revision Watch]

Here's Prof Holgate again, from January, this year:


http://www.timesonline.co.uk/tol/life_and_style/health/features/article6998742.ece

From The Times
January 25, 2010

Doctors, school, friends thought I was faking chronic fatigue syndrome

As the trial of Kay Gilderdale puts ME back in the spotlight, we ask why more is not being done to help sufferers

Penny Wark

[...]

Stephen Holgate, professor of immunopharmacology at the University of Southampton, chairs the Medical Research Councils expert group on CFS/ME. As a clinician who sees patients with this group of diseases I recognise theres a real thing here, its not all psychiatric or psychological, he says. Unquestionably in some of these patients there are abnormalities and biochemical changes in the brain, the central nervous system, the spinal cord or the muscles. My personal view is that were not dealing with a single condition.

In 2008-09 the MRC spent 728,000 on ME/CFS out of a total research budget of 704.2 million. The MRC is ready to commission more research on ME, he says, but the stigma and scepticism associated with the condition do not make it an attractive option for top quality scientists.

The debate is so polarised that scientists are frightened to get involved, says Holgate. My aim is to get everyone round the table, so that instead of people throwing bricks at each other we can agree on the priorities, get some quality proposals written up and build confidence in the research community. The need for more research is urgent because whats happening now is unacceptable for patients and its costing the Government a lot of money.

[...]


---------------

The debate is so polarised that scientists are frightened to get involved...

And who has been repeating this mantra for years, now?

Wessely, the Guardian's Sarah Bosely, Peter D White (at the AfME/MRC Joint Research Summit), AfME's Sir Peter Spence (in the Minutes of a Forward-ME meeting), Vivienne Parry (Science Media Centre and Patron to ME Solutions), Dr Charles Shepherd and more recently Holgate and McClure...

 

[Dx Revision Watch]

I posted the following comment on Dr Timothy Luckett's blog, in December:

http://www.forward-me.org.uk/24th November 2009.htm

(Forward-ME is a caucus group to the APPG on ME convened by the Countess of Mar, in 2008, in order to hammer out areas where [the national ME and CFS patient organisations] shared common ground. Membership of Forward-ME is by invitation of Lady Mar, who chairs the meetings. Members of the public are not permitted to attend meetings, either as participants or as observers. Forward-ME meetings are attended by reps from Action for M.E., the ME Association, AYME, The Young ME Sufferers Trust, BRAME, reMEmber (The Chronic Fatigue Society) and Mrs Sue Waddle, on behalf of ME Research UK. The 25% ME Group had been a member of Forward-ME but withdrew from the group. Invest in ME are also members of the group but have been dithering for sometime now over whether to also withdraw their support.)

Extract: Forward-ME Minutes of meeting 24 November 09

"[...] Peter Spencer [CEO Action for M.E.] said that remarks had been made about the aggressive nature of some of the correspondence together with the number of freedom of information requests from a few members of the ME/CFS community was taking up to 80% of one person's time at the MRC.

It was felt that this was unhelpful as the time could better used for constructive purposes. There was a danger that the hostility to the MRC would be used as ammunition against proposals for research for ME/CFS in what was an extremely competitive field. This was the best opportunity for research support for 10 years and the CFS/ME community should not let it slip through their hands..."

It isn't clear whose opinions are being expressed here. Sir Peter Spencer's? Lady Mar's? Dr Shepherd's? Or is this the opinion of a member of the MRC's CFS/ME Expert Panel, for example, Prof Stephen Holgate? Or MRC officials?

Do these apparent concerns refer to recent correspondence received through the MRC's Legal Compliance Office in relation to the lack of information around the (then) forthcoming MRC Workshop or to the deliberations of the Expert Panel or to the number of requests for information, in general, around MRC research funding?

If these remarks had not come from Holgate, who has made these comments? There is little point in having comment and opinion minuted if the minute taker fails to record these distinctions - otherwise it's reporting hearsay.

And it infantilises.

We are not permitted to know who has been doing the grumbling or who holds these opinions - only that it is felt in some quarter(s) that we have been "naughty".

/Continued in next comment

December 29, 2009 4:05 AM

Suzy Chapman said...

Ian McLachlan has been taking his unfulfilled requests for information relating to rejected research applications through the FOI Appeals procedure and then to Tribunal, over a period of several years, which will have cost the MRC time and money - the MRC Legal Compliance Office may still be smarting over that.

Prof Holgate chairs the MRC's CFS/ME Expert Panel. If it is the case that it is Holgate who holds the opinion that MRC funding committee decisions to approve applications for grants for the type of research studies that have been consistently rejected in the past might be dependent upon the ME and CFS patient community's quiescence and docility - then that is a pretty dodgy opinion.

Given the lack of recorded objection in the minutes, this might be assumed to be an opinion supported by at least some of the patient org reps who make up the members of Forward-ME group, and possibly by Lady Mar, herself.

In the past, we have seen quite legitimate expressions of concern to various bodies around various issues translated by patient org reps and their satellites, and by individuals such as Vivienne Parry (Sense About Science), Prof Peter White, the Gibson Inquiry Report, Wikipedia editors and Admins and others, in terms of acts of "hostility" or "attack" or "vexatious". There were seven references to "hostility" in the "Gibson Report", alone.

(See: http://twentysixsoldiersoflead.word...ughts-on-the-gibson-report-by-angela-kennedy/ )

White also promulgates the view that "as well as lack of funding, the hostile approach of some patient advocates can discourage potential researchers from becoming involved."

(Report of the AfME/MRC Joint 2006 Research Summit)

Alleged "hostility" hasn't led to KCL, Manchester and Liverpool researchers taking their snouts out of the trough...

White is a member of the MRC's CFS/ME Expert Panel, as are Sir Peter and Dr Charles Shepherd.

If the CFS/ME Expert Panel, under the chairmanship of Holgate, fails to fulfil its stated objectives in encouraging quality applications and their approval (and the MRC has been talking about funding quality research since 2003, but has yet to put any money where its mouth is) - will the MRC, AfME, the MEA, parliamentarians, Prof White et al once again collude in scapegoating the ME and CFS patient community for the MRC's continued reluctance to fund?

 

[Mithriel]

So he is looking for everyone to get together and reach a compromise. The Earth is no longer round or flat just somewhat bent .......

After the Chief Medical Officer's thing (? memory) it was agreed that a neutral committee would be set up at the MRC, I think and the patients were happy enough with that if it got something done. The first thing they did was have someone who published with SW chair it - who got very annoyed when this was pointed out. :Retro smile:

It is the psyches who refuse to compromise or look at the evidence. For decades I have been able to place people in the correct camp by this simple method. Anyone who acknowledged that there were two viewpoints - though some people may experience depression it is not always present - was on the side of the patients.

The other side have all the power, they should be the ones making it easier for us, but those with power never willingly crelinguish it.