Introducing WAMES volunteers: Acting Secretary
How on earth did I get involved in ME?
Tony’s favourite photo of himself: driving a tram
Like several other major changes in my life, such as becoming a librarian and then a lecturer (the last thing I ever wanted to do then was to teach!), becoming a volunteer for WAMES was not planned but caused by circumstances beyond my control!
More than 35 years ago, my lovely, bubbly wife got ME, and became seriously ill and inevitably, in part, a different person. So I became Jan’s carer, reluctantly at first as it took some years before either of us could really come to terms with what this all meant.
Then Jan joined the Mid Wales ME Group, which was often held at our house, and I became tea boy, and later took part in the production of the newsletter. Jan’s involvement developed considerably, the previous Chairman retired from worsening health, and I suddenly found myself promoted from tea boy to Chairman of the Group.
Then came the inception of WAMES, and after a short time I found myself promoted again from Jan’s driver to Trustee and Publications Officer. I worked on the development of the Website, designed the logos for WAMES and other ME related groups, and attempted to give our publications a more ‘professional’ image. Jan later edited the WAMES Magazine, and I undertook its production, printing and distribution, in those days, by post. I also stood in for any post that became temporarily vacant and work as Jan’s computer sorter-outer!
I am immensely proud of what we have achieved through WAMES. Although progress has been two steps forward and one back, I do believe WAMES has made a difference. There is a greater awareness in the Medical Profession in Wales, and in Welsh Government. I am hopeful that the development of Long Covid and the greater acceptance of ME (and there is much in common between these 2 illnesses) will lead to improvements more quickly than in the past.
Although I have now, to my surprise, reached what could be described as my ‘mature’ years, I hope to be able to continue to support WAMES in whatever way I can. Those of us who have had to watch people we love struggle constantly with ME know how important it is that groups like WAMES continue to inform and fight for better support and conditions for those afflicted with this wretched illness.
Read other volunteers’ stories:
Over time, the long-haulers reported an overall reduction of most symptoms including unrefreshing sleep and post-exertional malaise, but an intensification of neurocognitive symptoms. When compared to ME/CFS, the COVID-19 sample was initially more symptomatic for the immune and orthostatic domains but over time, the long-haulers evidenced significantly less severe symptoms than those with ME/CFS, except in the orthostatic domain. Among the COVID-19 long haulers, several neurocognitive symptoms got worse over time, whereas improvements occurred in most other areas.
We describe three adolescent and young adult patients who had confirmed or probable COVID-19 infections early on during the pandemic and were referred for evaluation to the Chronic Fatigue Clinic at the Johns Hopkins Children’s Center. All patients reported orthostatic intolerance symptoms within the first 2 weeks of illness, and 10-min passive standing tests were consistent with postural tachycardia syndrome. After 6 months of illness, all three patients met criteria for ME/CFS.
People who are severely and very severely affected by Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS) experience profound suffering. This suffering comes from the myriad of losses these patients experience, the grief that comes from these losses, the ongoing stigma that is often experienced as a person with a poorly understood, controversial chronic illness, and the trauma that can result from how other people and the health care community respond to this illness.
