Community Story: Pocklington Chronic Fatigue Community

Understanding and Supporting Chronic Fatigue in Pocklington 

Introduction:

Pocklington Chronic Fatigue Community (PCFC) is a volunteer-led group providing support for individuals with chronic fatigue conditions. Originally founded in 2015 as the Pocklington ME/CFS Support Group, it has since expanded to include Fibromyalgia sufferers, evolving into the Pocklington ME/CFS/Fibro Support Group and eventually the Pocklington Chronic Fatigue Community in 2019. The group meets monthly in Pocklington, offering a friendly atmosphere for members to connect over a cuppa and conversation. PCFC moved to the Feathers Hotel a while ago to offer better accessibility for all members. With plans to enhance support through social gatherings and online resources, PCFC is committed to aiding fellow sufferers. They are currently offering specially designed yoga classes in addition to social activities, informative Zoom presentations as well as arts and crafts.

Challenges Faced by Members:

Living with Chronic Fatigue presents numerous challenges for individuals, including fatigue, pain, stiffness, anxiety, stress, nausea, and weakness. These symptoms can significantly impact daily life, making even simple tasks seem overwhelming. All members of the PCFC have experienced these challenges first-hand and understand the isolation and confusion that often accompany the condition.

Providing Supportive Programmes:

PCFC facilitates various programmes and activities to support its members in managing their condition. Some such programmes are Restorative Yoga, Informative Zoom sessions with a trained nutritionist, creative arts and crafts classes which aim to improve individual flexibility, reduce pain, provide social support and enhance mental well-being. Members of the group have reported positive changes, including better range of movement, decreased lower back pain, and improved energy levels, highlighting the effectiveness of the programmes in supporting their overall health.

Testimonials from Beneficiaries:

Paula Morrison and Jennifer Zarek, two beneficiaries of PCFC, have shared their experiences with the group's programmes. Paula emphasises the importance of peer support and the positive impact of restorative yoga on her mental and physical well-being. Jennifer, who has been living with ME for over 50 years, praises the supportive atmosphere of PCFC and the value of specialised yoga sessions tailored to individuals with Chronic Fatigue.

In her own words, Paula Morrison said;

“I was suffering from Fatigue, pain, stiffness, anxiety, stress, nausea, and weakness. I attend Pocklington Chronic Fatigue restorative yoga where they provide mats, bolsters, pillows, blankets, chair, bean filled eye pillow etc. I started seeing improvement in my health such as better range of movement, less lower back pain, improved energy levels after the class and this really helps my mental health.

We have a lovely yoga teacher and group members, sharing my difficulties with people who understand it helps me immensely. I don’t know what I would do without the group, it really supports my mental health and body. We are never rushed, and Margaret always supports us in any way she can. We are very lucky to have such a lovely group.

I would advise anyone with similar challenge as mine to try the restorative yoga group for your condition if possible. At first, I found it so difficult I didn’t think I could carry on. I am so glad I persevered and do what I can on that day. It gives me a focus and meeting others with the same challenges is great which I never do.”

Jennifer Zarek has this to say about her experience;

“I attend the Restorative Yoga sessions regularly (most weeks); sometimes the monthly social meeting and sometimes the occasional Zoom meetings. I found the group through an advertisement; I think in Sainsbury’s.

My problem was that I have mild to moderate, very long standing, ME (symptoms for 50 years, diagnosed and enforced early retirement 20 years ago, aged 54). Primary symptoms very low physical and mental energy. I can walk reasonable distances - but could not run to save my life - and drive myself to the meetings. I am usually well enough to attend but might occasionally miss a meeting if I am particularly tired.

The resources provided at the yoga sessions are a good selection of mats, bolsters and rugs, suitable for the activity of the session. Other yoga classes that I have tried to attend required one to provide one's own mat and do not employ any other supports; the support equipment was very helpful. Above all, a specialist teacher with experience and understanding of people with ME / CFS.

The value of the sessions for me is the support in maintaining flexibility and mobility as I get older. In ME many forms of exercise are impossible and / or unwise; but without activity joints become stiffer, muscle mass reduces and the fascia around the muscles stiffens, creating a downward spiral in mobility, independence and general health. I have tried other "gentle" yoga classes, including one provided by the U3A for ... mature ... ladies, but they have been far more than I can cope with. The sessions provide the passive mobilisation that is important for me as I get older, as well as deep relaxation that is very helpful for those of us who sometimes struggle with those aspects of life.

It is also helpful to have supportive and social contact with others in similar circumstances and facing similar difficulties; we can feel very isolated at times.

As for advice, I would always say, look for support from others – an in-person or online group, the national organisations, the very few specialist doctors, books. The medical profession is generally at best ignorant of, and at worst hostile to, the diagnosis of ME; The “treatments” that have been advocated (by NICE and other aspects of the NHS) have been detrimental. There is minimal or no support from the NHS. When I was diagnosed, I was told “So we are discharging you because there is nothing we can do” So, we must help ourselves, and anything that assists with that is helpful.”

Another beneficiary, Mel shared her experience;

“Since my husband was diagnosed last year, we have both learnt a lot from the group and are very grateful that we have something like this on our doorstep. They are so welcoming and have given us a lot of advice. It is so nice to speak to people who also suffer as they totally understand what my husband is going through.”

Grant Support:

To further enhance the great work of the group, the Community Action Grant, a grant managed by HEY Smile Foundation, was applied for and approved to assist the members and residents with the cost-of-living challenges.

Since the Grant is aimed at addressing residents' cost-of-living challenges, it has enabled the organisation to continue providing essential resources and support to individuals living with Chronic Fatigue in the Pocklington area, further strengthening the community's resilience and well-being.

Thanks to the remarkable efforts of PCFC, they also successfully secured another grant from The National Lottery Community Fund. This grant will be utilised for various purposes including covering yoga and studio fees, zoom expenses, transportation costs for some members to attend yoga sessions, and professional presentations for the social group. The support from The National Lottery Community Fund underscores the significant impact PCFC is making in improving the lives and well-being of individuals affected by chronic fatigue conditions in the community. The National Lottery's commitment to funding projects that empower communities aligns perfectly with PCFC's mission to provide vital support and resources for those in need.

Conclusion:

Pocklington Chronic Fatigue Community plays a vital role in supporting individuals living with Chronic Fatigue in the Pocklington and surrounding areas. Through its programmes, resources, and supportive community, PCFC strives to empower individuals to better manage their condition and lead fulfilling lives despite the challenges posed by Chronic Fatigue. With continued support from grants and the dedication of its members, PCFC remains committed to making a positive difference in the lives of those affected by Chronic Fatigue in the local community.