Report from the PRIME steering group meeting

 

on 27th April 2005

Thank you to GUS Charitable Trust for providing the venue and the refreshments for the day.

 

The following people were present:

 

Elisabeth Buggins, Sally Crowe, Jude Rogers, Doug Badenoch, Carol Edwards, Sophie Staniszewska, Jan Savage, PRIME project team.

 

Vivienne Parry, GUS Charitable Trust

 

Chris Clark, Action for ME

 

Diana Elbourne, London School of Hygiene and Tropical Medicine & the Social Science Research Unit

 

Elizabeth Mitchell, Medical Research Council

 

Esther Crawley, Royal United Hospital, Bath

 

Joe Marsh, Sussex & Kent ME/CFS Society/IMEGA e

 

Mary Jane Willows, AYME

 

Sarah Perkins, Medical Research Council

 

Trevor Wainwright, MERSC

 

Apologies from:

 

Catriona Courtier, Colin Barton, Jane Colby, Maria Shortis, Nicky Britten, Sylvia O’Brien.

1. Introduction

 

The chair of the steering group welcomed everyone and outlined the format of the meeting. After brief introductions, the group completed an exercise to capture what members have enjoyed so far about their involvement with the project and asked them to describe any challenges. These were captured on a flip chart:-

Enjoyed

 

• Enthusiasm, honesty and support

 

• The project puts ME at the front

 

• Depth of experience in ME/CFS community and literature

 

• Working together positively

 

• Overcoming antagonism

 

• Meeting technical challenges

 

• Engaging people to work with

 

• The potential of the project to re-shape the field

 

• Credibility and cohesion

 

• Independent approach

 

• Like minded people

Challenges

 

• Need to ‘walk first’ – pacing the project

 

• Large volume of data to deal with

 

• Time constraints

 

• Interview logistics

 

• Collating experience without losing the power

 

• Degree of scrutiny of research

 

• Research workshops

 

• Shape / size of cohort

 

• Engaging researchers

 

• E-community

The PRIME project team then presented on progress on the three parts of the project; project management; literature review and research interviews; and e community. Some background papers to this meeting are available on the Public Documents section of the PRIME website: www.prime-cfs.org

2. Overview of Project Management and Research Workshops from Sally Crowe

Members of the steering group have reported receiving unsolicited emails from the One Click organisation. A request to be removed from One Click's mailing list had been refused. The group was shown how to mark unsolicited emails as spam should they wish to do so.

One Click claimed their emails were to keep members 'up to date' with news. The administrator of the GUS Charitable Trust is also a high profile medical journalist, and has investigated the reporting of news items on their website. She and two colleagues from the national press checked the facts behind five 'news' items chosen at random from the One Click site, going back to source in all cases. All were distorted, four contained two or more significant errors of fact and two were defamatory. One Click could not therefore be considered a reliable source of news.

Also reported were discussions with a number of colleagues representing nine of Britain's national newspaper titles, all of whom said that they ignored any communication from One Click. They did this because 'their stories never check out'. They regarded One Click's claims with regard to the media as risible.

Meetings

 

When the first steering group meeting was held, the Project Team asked for feedback on how the meeting was run, in order to model ‘best practice’. The group reviewed the suggested changes (a document capturing these changes can be found on the website). The following actions were agreed:-

• It was suggested that the next meeting includes the option of teleconferencing for steering group members who are unable to attend, perhaps at short notice. It was also agreed that this could be an appropriate way for young people to take part in meetings. Crowe Associates will action organising this for future meetings.

• For a record of the meeting that is in the public domain, minutes should be anonymised. Having names against comments is not necessary.

• It was agreed to amend the minutes of the last meeting to incorporate a few comments that were missed.

• It was emphasised that meetings are to be a beacon and standard bearer – it is important to get the standard right.

Research Workshops

 

Background information to this agenda item is available on the PRIME website, click here to view: http://www.prime-cfs.org/?o=471

There are currently 2 dates and 2 venues arranged for the research workshops. These will span lunchtime and the aim is to keep ‘face to face time’ low.

The 3 objectives of the workshops are:-

1.                To explore and discuss different research methods and what makes them relevant and robust.

2.                To discuss and suggest how the format and presentation of the research data generated from PRIME can attract and interest both researchers/clinicians and others living with ME/CFS.

3.                How PRIME can best use this research data to support the formulation of clearly focused relevant research questions.

Feedback was asked for on the following points:

• PRIME feel that objective 1 is best achieved by considering research generically i.e. not focussing on ME/CFS research to begin with, but on other diseases or even using fictitious examples. The discussion should focus on robustness of methods rather than specific content at this stage of the day - is this approach appropriate for the ME audience?

• Would objective 2 be best achieved with some dummy PRIME data and using a LCD projection of the PRIME website as well as a discussion?

• Objective 3, this is more of a ‘long view’ issue, but one which will interest our PRIME stakeholders and we need to start thinking about it now. How can this discussion best be structured?


Feedback on objective 1

• One member advised that energy should not be wasted on non ME related topics, as it could result in not achieving objectives as people may be too tired and jaded. It is important not to overcrowd the agenda.

• It was suggested that as the research process is often not well understood it may be better to do something generic e.g. use a fictitious disease (e.g. suggested ‘green parrot disease’) to work through the research processes, including developing questions. People would be given information from different sources and then asked how they would go about researching the disease.

• How about we start the day with the questions and work backwards to methods? Which methods would help make sense of the questions? These could even be asked for in advance.

• To keep a focus, we could limit the discussion to questions relating to causes, and research methods appropriate to identify causes should be considered.

• Some felt that the agenda for the workshops is too crowded. It was suggested that the ‘engaging researchers’ part could be discussed in another forum. It is important to work through how research questions are developed and handled so this should stay. A suggested focus for discussion was the first 6-12 months of the onset of the illness, and to ask people to complete questionnaires prior to the workshop, to save time.

• The group agreed to focus the workshops only on Objective 1 and look at other ways of achieving the other objectives.

• It was emphasised that it is vital not to ‘switch off’ researchers at a workshop – the events need to appeal to everyone who attends.

• It was suggested that it may help if none or some of the researchers are CFS/ME researchers.

• Some agreed that this is a tough area for researchers; there is experience in the group of colleagues who will not research into ME/CFS due to vitriolic attacks and threats, and that it will be hard to get researchers along

• There needs to be clarity about the objectives and content of the workshops.

• The group suggested that it would be better to run workshops more regionally, and offers were made for the South West and North West. This would also address any concerns as to the apparent London bias to workshops.


• It was also agreed that if workshops are at 2 central locations they will attract the same voices. It was agreed to pilot 4 workshops in regions (and have smaller groups in each) and they could be used to attract other people, who have not being involved before.

• GUS Charitable Trust would like the workshop materials to be made available to generic researchers and ME patients / carers via the Web, a ‘toolkit’ for people to take the lead locally in developing research

questions.

• There will be a facility for something like this could be put on the PRIME website.

• The group wondered if there could be a combination of 2 approaches, firstly a basic piece on how research works, followed by presentation of preliminary PRIME data. Sally confirmed that at each meeting we would hope to have one of the three PRIME researchers, but that the interview data wouldn’t be ready to present at the workshops.

• It was felt by some that if people with ME are coming along it would be better to get researchers to respond to their concerns, rather than researchers driving it.

• The chair cautioned the group about how decisions would be made about where to hold them and was concerned over cost implications

Next steps

It was agreed to:

 

1.                Run several smaller pilot research workshops, earlier than July, hosted by steering group members and piloting the different ideas. By the end of the process there will be an approach that works for the ME community and a toolkit for others to run similar workshops if they wish.

2.                Send an email list of groups involved who may be interested.

3.                Amend the website with details of the new arrangements.

3. Update from Sophie Staniszewska from the RCN research team

Literature Review

 

The research team are currently reviewing key papers, including, for example, those that address quality of life issues within ME. Each paper is being reviewed with a data extraction sheet, looking at themes across the literature. There is potential to put this data on the website, although this would be challenging as it has not been done in this way before. Themes from the analysis of the papers would be grouped.

Grey literature/informal literature

 

The team are reviewing grey/informal literature i.e. reports that are not necessarily easily accessible, such as poetry, school essays, magazine articles, letters to newspapers, databases.

Terminology

 

There was a query from the group as to whether the research team were searching for other terms, e.g. post viral fatigue, unexplained over exertion, Icelandic disease etc. A suggestion was to use the existing terms that NICE have used for guidelines development.

Next steps

1.                Group to send research team their lists of search terms, to ensure that they are not missing any. The search terms will be put on the PRIME site for others to use.

2.                The team requested access to other literature that people may know of.

3.                AYME has a good deal of material written by young people, which they can share as part of the grey literature review. Sussex and AYME have some material from people who have recovered which, again, can be shared.

Interviews: update from Carol Edwards from the RCN research team

 

There are between 57 and 65 people who have expressed interest in being interviewed. Of these, 38 have been contacted so far in writing. 18 reply slips have been received – Jan (who has joined the team to conduct the interviews) is working through them. It is hoped to recruit more underrepresented groups e.g. men, young people, all those over 60, the recovered and severely affected.

Some discussion took place around the interview process:

• The team were asked whether others could do interviews to make the process more regional and less exhausting.

 

• It was also suggested that recovered members of some support groups could conduct interviews to the project guidelines.

• The AYME AGM in August is a potential interview opportunity as 80 sufferers and 20 parents/carers will be together for a weekend.


• Carol advised that the number of interviews to be conducted (between 40 and 50) is actually quite large for this sort of study (following a discussion about the robustness of the study).

• The group were reminded that the interviews will form the preliminary data then the website will be publicised and opened up so that many more people can contribute their experiences. The process is new and potentially powerful and should be a beacon for other research groups.

• The team emphasised that practicalities, ethics and money need to be considered in implementing these ideas. Patient / public involvement good practices need to be followed. There are also constraints on the process outlined in the application for ethical approval and changing this would mean reformulating our application – a time consuming process. It therefore means that bringing in other interviewers e.g. those who have recovered from ME is not really feasible at this stage – although it may be very worthwhile to think about this in any future development.

• Questions were asked about the need to ensure any interviewers are objective and not subjective, the team responded.

• Questions were asked whether interviews are being done confidentially. It was confirmed that this is the case. Also, all information will be checked with individuals before it goes on the website

• It was emphasised that the PRIME website ensures privacy, at a level chosen by the interviewees.

• The team were asked whether, as interviewers, they had a process in place where they will have support if they find themselves being treated as therapists. Jan said that she will be able to de-brief if necessary with Carol and Sophie after interviews.

• It was suggested that giving out Dictaphones for people to record their feelings before interviews may be helpful for those that will have a very limited capacity for the interview. The information collected could be included in the interviews.

• The team asked for advice on how to deal with disappointment. It will not be possible to interview everyone who has volunteered as this part of the project is oversubscribed. There will, however, be opportunities on the website for people to contribute their narratives at a later date.

• Again the project was reminded that some groups or individuals have no internet access. The team agreed to return to this at the next meeting


Next Steps

• Carol will contact AYME about interviewing young people.

 

• Sally will do a piece for the AYME newsletter.

• Sally will organise Dictaphones

4. ecommunity: update from Doug Badenoch

Everyone was thanked for their feedback on the website. The site was then shown on screen including how to reset passwords so that they are more memorable for individuals, how to upload photographs to the site etc. All logons have been set up so that there is a private forum in the e community just for steering group discussions. ‘My space’ will be where people will enter their experiences in the future. Positive feedback was shared from absent steering group members. There was then a brief discussion around the rules of using the site. The following comments were captured:

• Concerns about the security on the site.

It is as secure as possible; however, someone could theoretically guess someone else’s password, but it was unlikely.

• Although technology is great, how would it advance research?

The e community is a road to where we want to go. There is also the literature review and the interview data to inform the development of important research questions in ME. It was commented that the web site will play an important role in the dissemination of qualitative research data, informing the research agenda, and in gathering new data, this is new.

• Group members queried the short term and long term use of the website

Feedback from researchers about the site will be needed and is essential. The chair suggested getting a subgroup together to discuss what they would like to get out of the site. The project funder emphasised that input from researchers is needed, as well as people with ME/CFS to help develop how we do things.

Next Steps

1.                Sally and Doug to develop a short questionnaire that can be e mailed to researchers to help build the PRIME website, this would be to ensure that the data is as ‘researcher friendly’ as it can be.

2.                The group offered to use their researcher networks to distribute this. It was felt that if the project offers researchers some tools they can use, they may well come on board.

Web site content


Feedback was sought as to whether or not the PRIME website should have definitions of CFS/ME. After a discussion the strong consensus was that there were no advantages in having such definitions. It was felt that any definitions could and would be argued with and it could put people off the PRIME project. It was agreed that it is not an information site about ME/CFS.

5. Meeting Summary

• The minutes from the meeting will be circulated within the next 2 weeks. The chair encouraged people to review the minutes and feedback any comments or amendments.

• The chair was concerned about people missing from the meeting today – it was agreed that they will be contacted on an individual basis by people who have attended the meeting so that they can be kept up to date with what took place today.

• The next steering group meeting will take place at GUS on Monday 4th July 2005.

• The chair thanked everyone for attending the meeting and thanked GUS Charitable Trust for hosting the meeting once again.