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
Vivienne Parry, GUS Charitable Trust
Chris Clark, Action for ME
Diana Elbourne, London School
of Hygiene and Tropical Medicine & the Social Science
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
Catriona Courtier, Colin Barton, Jane Colby, Maria Shortis,
Nicky Britten, Sylvia O’Brien.
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:-
• 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
• 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
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.
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.
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:-
To explore and discuss different
research methods and what makes them relevant and robust.
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.
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
• 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
• 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
It was agreed to:
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.
Send an email list of groups involved
who may be interested.
Amend the website with details
of the new arrangements.
3. Update from Sophie Staniszewska from the RCN research
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.
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.
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.
The team requested access to other
literature that people may know of.
AYME has a good deal of material
written by young people, which they can share as part of the grey literature
and AYME have some material from people who have recovered which, again,
can be shared.
Interviews: update from Carol Edwards from the RCN research
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
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
• 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
• 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.
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.
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.
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
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.