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Thanks to funding from the Brockhoff Foundation, the Link-up Project is now alive and well.

If you would like to participate, or need more information, please contact Judith Drake. Judith is at the Society on Wednesday afternoons.


Below is a report on this very successful project.

INTRODUCTION/BACKGROUND

CFS/ME all too often causes people severe isolation. They often have to withdraw from work and social activity; they are commonly misunderstood and criticised. Many are unable to attend support groups or meetings and therefore may not know others suffering the same illness.
The Link Up program addressed this isolation by bringing participants together on a facilitated teleconference line. 
“Link Up’ was an initiative of the CFS/ME Society of Victoria. It provided telephone contact for people living with Chronic Fatigue Syndrome, and their carers. A Link Up ran for 45 minutes (most people being too ill to cope with anything longer), with about 6 participants, and was managed by a suitably trained facilitator. 

The program was funded by grants by RE  Ross Trust, ANZ Trustrees and the Helen Schutt Trust. The generosity of these grants meant that members were able to take part in Link Ups at no cost to themselves, and that appropriate staff was employed. The great positive effect this program had on the lives of those who took part, is a tribute to the funding bodies’ consideration of the needs of people isolated by Chronic Fatigue Syndrome.

Jacinta Commins was coordinator of the program. She did the submissions for grants and then followed through with all the management tasks.

RESULTS/OUTCOMES TO BE ACHIEVED

The CFS/ME society wanted to offer the opportunity of taking part in a Link Up to all  members. It aimed to lessen isolation through this participation and facilitate further connections between participants for those who wished to exchange contact numbers.

METHODOLOGY AND OUTCOMES

Our first action was to develop a timetable of topics and group lists of people matched with the topic (eg members living in Gippsland, members aged 25 –40, members living alone…) for Link Ups. We found facilitators and back up staff.
Each week back up staff rang the members who matched the topics for the two Link Ups rostered. They explained the program and booked in people who wanted to participate.
At the beginning of each Link Up the teleconferencing company got all the participants on line and then handed over to the facilitator who introduced the session. Members then had the opportunity to introduce themselves and bring up topics for discussions. After 45 minutes the Link Up was wound up with opportunity given for feedback and exchange of telephone numbers and/or email addresses.
The facilitators, back up staff and Coordinator had quarterly evaluation meetings to discuss the program and deal with any issues.
The membership of the CFS/ME Society was asked for feedback and expressions of interest through questionnaires in our Magazine. This information was used for the next lot of topics and group lists and to check to see if adaptations needed to be made to the program.

CONCLUSIONS:

Link Ups:

•  Lessened isolation for people with Chronic Fatigue Syndrome
• Ran twice a week for over a year
• Well over 75% of the society’s membership were contacted and invited to participate in at least one Link Up relevant to their situation
• Provided a forum for Support Group Convenors and Support Line Workers to speak to each other about their issues and to swap experience and ideas.
• Participants exchanged information about treatment and management options (86%)
• Ideas were exchanged (90%)
• Participants felt supported and empowered (70%)
• Participants swapped phone numbers/email addresses (73%) and made contact after the Link Up (50%)
• Due to the social isolation and poor health of people with CFS/ME, Link Ups were the perfect vehicle to allow contact with others in similar circumstances
• Members strongly supported the project and would love it to continue

(percentages came from follow up questionnaires)

FUTURE

Because of the success of the program we would like to keep it going. We would adapt it to be less intensive, but to run continuously at least once a fortnight. We have applied for funding from the Department for Human Services to allow our members to be able to have continued opportunity to participate in Link Ups.
 

The Link Up Program Facilitator’s Report

What were the Link Ups all about? They varied according to who was on. Also, the focus of the Link Up varied, sometimes for different age groups, different geographical area, for people living alone, for carers and so on.

In the week before the Link Up, back up staff would ring through the list of Society members who fitted the criteria for the next Link Up to invite them to be part of it. As well as answering machines and no answers, there were people who might not have wished to take part in the Link Up, but took the opportunity to talk to the back up staff about their illness and to get support and information that they needed. Over the period of this program over 75% of the society’s membership was given the opportunity to take part in a Link Up.

We aimed to have six participants on the line. However it is the nature of our illness that some people were too ill, were confused, or simply forgot (brain fog!). Therefore, at times the number was fewer. The very time we would book in eight, expecting a couple to bow out, they all came on! 

The participants were in their own homes, lying down with the phone, or sitting comfortably (except one poor man who sat at his woodpile so the sound of renovations didn’t disturb the Link Up!). The facilitator explained the program and then people would briefly introduce themselves and bring up topics for discussion.

The discussion in the Link Ups did form a pattern, and the pattern gives a good reflection of the issues for people with CFS/ME. No matter which Link Up, the following areas were the core of the discussion:

1 Illness/Symptoms: These included how the illness began, symptoms changing or coming and going, cognitive difficulties, weight gain or loss. Also included were related illnesses and complications, particularly Fibromyalgia, Irritable Bowel Syndrome, chemical sensitivities, issues around food (especially allergies and intolerances) and sleep difficulties. There are over 50 symptoms of CFS/ME and most of these would have had a look in. Participants often began by asking “Does anyone else have …?”

2 Health Management/Treatment: Including treatments by CFS/ME specialists, naturopaths, various therapists, massage, vitamins and supplements and what were cynically called ‘miracle cures’. This also included discussion of tests for CFS/ME and related illnesses, from a wide variety of blood tests, sleep clinics, brain scans, liver function tests, etc.
For many participants the Link Up was a hoped for opportunity to find ‘the cure’ but in fact the Link Ups demonstrated that there are many approaches and none of them a proven cure for the illness. Six Link Ups were specifically Medical Discussion.

3 Coping Strategies: Participants discussed managing their lives so that symptoms were not exacerbated. “Keeping within my limits”, “learning to say No”, and coping with the change from being healthy and vital to chronically ill. 
Sometimes it was the lack of coping that was the issue. In the People Living Alone Link Up the impossibility of looking after yourself, making meals, etc. was discussed. In other Link Ups people discussed the difficulties of being ill and having to look after other family members (a dying parent, children, an ill husband).

The following issues were often raised, and discussed in depth:

4 Social Support/Friends: Commonly social support was described as “non existent”. Most participants were isolated socially. The way friends disappear, or the need to educate friends, was also a common experience. On a more positive note, good support, when it did exist, was greatly appreciated. 

5 Doctors/Specialists: Discussion of particular doctors and their treatments was a common theme, notably in country areas where medical support is rare, and, in Melbourne, of doctors and specialists known for their work with CFS/ME. The difficulty of getting a diagnosis, lack of faith in doctors and the ignorance of the medical profession itself were much discussed. Again, good support, when it did exist, was greatly appreciated.

6 Work and Study: This mainly involved decision making issues around work and study. Many participants had left jobs and schooling and were coping with the change. Others were trying to juggle their life so that they could keep going with them. For others still the issues were around whether to leave work or study, or to try to begin again. (Similar issues were raised around managing holidays and visits, and doing things like moving house). 

7 Family: Discussion of family ranged from the extremes of having wonderful support from partners and family, to the difficulties of lack of belief and support from those they had most depended on. Many sufferers had moved back to their parents’ home so that they could be cared for. 

8 Emotional Issues: Participants talked of a wide range of emotions, most often loneliness and loss. Frustration, boredom, guilt, lack of self esteem, grief and anger at not being believed, not being allowed to “be grumpy” and coping with lack of support were all raised. Positive emotions were less often raised, and these came from people who felt they had made positive changes through coming to terms with their illness. Depression was also a major emotion, but I have dealt with it separately because of the issues around its medical treatment.

9 Depression/Antidepressants: This issue also had extremes of opinion with some people coping with depression and discussing with interest the qualities of different antidepressants (hoping there might be one that would work better than theirs). Others had anti depressants that had been prescribed for other reasons than depression. 
Many participants were angry that antidepressants are so commonly given as treatment for CFS/ME and that they have had to fight to refuse antidepressants and/or to be recognised as having a physical illness rather than a mental one. 

10 Spiritual Issues: These were often discussed in terms of a ‘spiritual journey’ dealing with the illness. Sometimes also with a questioning of previous faith as when a church community showed lack of support, or when one woman asked: “As a Christian, how can I find meaning or purpose in these years of illness?”

Others
There were specific Link Ups for Carers and sometimes they participated in other Link Ups. Their issues were an important part of the program. Notably, many Carers were too busy and exhausted to take up the opportunity of being on a Link Up.

The isolation of living in the country was raised in geographical links. This was not only social isolation, but isolation from medical care and other services that help with CFS/ME.

Poverty was an issue. At the very time when people need the help that requires greater funds, their incomes diminish, and with little hope of things changing.

Practical information about Disability Support Pension, Taxi Passes, Home Help and Schooling, Support Groups, Doctors and Specialists was discussed. The facilitators would let participants know of the Society’s other programs, particularly the Support Line, Support Groups and the Medical Practitioners lists, as needed. Sometimes follow up was needed for people with particular needs.

FEEDBACK

At the end of each session participants are invited to give feedback about the session.
The most common response was feedback that the session lessened isolation. Comments were made that “I’m not so alone”, of the relief of talking to people with similar problems, speaking to people “you can relate to”. One participant noted “You blame yourself and think you are stupid otherwise”. For some it was the first time they had spoken to others with CFS/ME.
The next most common response was to say that the program was enjoyable and helpful. One participant called the program ‘a lifeline’, and another explained that her life had improved as a result of Link Ups.
Thanks were given to the other participants, to the facilitators, to the organisers, and appreciation of the CFS/ME Society magazine Emerge was highlighted.
Few criticisms were given: one was that the session was too short, one because the participant had expected to be on with people more local, and that the time did not suit her, and another that the session just finished would have been better with more sharing of personal experience. 
Often telephone numbers or email addresses were exchanged at the end of the session. Some people were too ill to want telephone calls. Email was much appreciated by those who had access to the internet, but this was quite uncommon. 
A number of people asked about how they could help the society ensure that Link Ups would continue. The finishing of the program was bemoaned.

Joy Stevenson 

Last Updated 23/10/2005