How local support groups can change lives
Reflections from decades of mutual support in Oxfordshire
Today’s post is from David Polgreen and Patricia Wells. David and Patricia have both had ME for many years and are members of OMEGA (Oxfordshire ME Group for Action) — the patient support and campaigning group in Oxfordshire. They have had various roles on the committee including the Chair.
How do you set up a social club for people often too ill to go out? It was even trickier before WhatsApp, Facebook and the internet. Yet, in the 1990s, ME support groups thrived. There was a huge pent-up need for contact with people who understood that the world had abandoned us. People who understood how there was no treatment, your GP had no answers and was even dismissive. Those who understood how the hospital consultant had ruled out other conditions and said there was nothing wrong with you, and that your career, social life, hopes and dreams had ended.
Joining OMEGA
When I (David) joined OMEGA around 1991, I had been ill for three years and had just taken part in a trial of cognitive behavioural therapy (CBT) in which I was told to ignore my body and use willpower to ‘forget’ my ‘chronic fatigue’. It wasn’t my fatigue that was stopping me returning to work, that was the tip of the iceberg. I felt dreadful, ill, my brain felt like it was bursting. My glands were swollen and my whole body ached.
Oxford is one of the homes of the (now discredited) biopsychosocial model of ME. Everything the psychologist researchers said felt wrong to me; they told me not to join a support group (apparently it would reinforce my erroneous thoughts and illness beliefs), so that’s the first thing I did. They were using research showing an association between being ill for longer and being a member of a group. Of course, it is equally likely that being ill for a long time with no recognition or treatment meant that those with ME inevitably turned to patient groups. This is a basic error in understanding research: correlation is not causation. In the 1990s, we tried to engage with the researchers, with little tangible progress.
From lifelong friends to the digital era
At OMEGA, I (David) have met lifelong friends, received brilliant advice, helped other people and above all met my partner. For me (Patricia), it has allowed me to make wonderful, supportive new friends, to feel useful and learn new skills. We made good use of our limited energy resources and shared the work writing newsletters (we still publish a quarterly one) or holding meetings with speakers. One thing we noticed was that people with ME never seem depressed. Yes, fed-up and sad at the loss of a previous life, but desperate for social contact. People would prioritise getting to meetings even when they were very ill. At events you could never get people to leave. Everyone would pay for it for days, due to post-exertional malaise (PEM), but it felt worthwhile to feel some life and connection.
We also thought about those who were too ill to go out. They or their relatives would still get in touch and receive our newsletters. We had ‘listening ear’ volunteers and a ‘telephone tree’ listing so that people too ill to leave their homes could phone others in the same situation. We visited people if they could tolerate company. It was never enough but the internet has helped enormously. Message boards gave way to Facebook sites and then Zoom meetings. These resources create less need for in-person meet-ups, although for some they remain very valuable.
Expanding OMEGA’s ambitions
The goals of OMEGA have always been to support one another and provide information about the illness from reliable sources. We offer such information to our members, to the wider public (often through local media) and to local healthcare practitioners (including GPs). By the mid-1990s, we had expanded our ambitions to explore how OMEGA could contribute to better services for people with ME in our area.
We needed a mobile community healthcare service that could treat people near to or at home if necessary. With some brilliant and stubborn members (including Oxford academics and experienced campaigners) leading the way, we decided to work with the NHS to develop such a service. We conducted surveys of patients and GPs and lobbied MPs. Most importantly, we learned about NHS bureaucracy (who decided where the money went), the language it used and how to provide ‘evidence of need’.
We researched and wrote proposals for a multi-disciplinary community service with detailed budgets. Although initially turned down due to a lack of funds, in 2002, the Report of the Working Party on CFS/ME to the Chief Medical Officer led to a funding pot of £8.5m for local services. Local areas had to bid for it, so we wrote the bid with Oxfordshire NHS and the money was allocated for the community service. A form of this clinic survives and now also helps Long Covid sufferers. This might be the greatest achievement of our self-help group.
We were concerned about children with ME and in 2014 sent evidence-based information about their needs to secondary schools and colleges in Oxfordshire, the School Nurse Service and the Hospital School. In 2018 we published our survey research on the experience of children and their families, which was used as evidence in 2021 when NICE revised its guideline for ME/CFS.
The main committee has also looked at wider ways to support our members. We ran a poetry competition and published a book ‘Poetry from the Bed’ (2012). We started a meditation group that still meets on Zoom. People report how good it is ‘to be in a group where all you have to do is breathe’, valuing mindfulness and contact with other people.
Oxfordshire is a large county, so we set up and encourage local social groups. We also share resources with other organisations such as the ME Association, the Tymes Trust, the 25% M.E. Group and Healthwatch. Through OCVA (Oxfordshire Community and Voluntary Action) we have help with the newsletter, finances and website (set up in 2010 and now undergoing a redesign) from wonderful volunteers.
Supporting biomedical research
We have always called for more biomedical research. Professor Norman Booth, a member of OMEGA and theoretical physicist, wanted to understand the biology of ME on behalf of family members with the illness. He met Dr Karl Morten, a researcher in mitochondria and their role in energy production, at a conference and encouraged him to broaden his research to include ME/CFS. Karl spoke at our 25th Anniversary meeting in 2014. Norman is sadly no longer with us, but we still champion Karl’s work. He collaborates with researchers from all over the globe and runs a team at Oxford’s John Radcliffe Hospital. We recently had our second conference hearing about the research, including energy metabolism, cold therapy, blood factors and environmental impacts on the immune system, and hope this will be a regular event.
Local groups are a lifeline
Throughout the decades, we have never ceased to be amazed by what groups of patients and their relatives can achieve. We would recommend, if you have ME or care for a loved one who does, that you find your local group. If you don’t have a group, why not create one (if you have any energy left over at the end of the day)?
Our experience has been that it can change lives. It has without question changed ours.
Such an encouraging piece. Thank you for sharing.