I was recently asked to submit some comments about my experiences of using the Internet as somebody with an energy-limiting chronic illness. As I was one of many people who were contacted for this article, “Spoonies: who we are and how to be an ally” https://chronicfeminist.uk/2022/09/17/spoonies-who-we-are-and-how-to-be-an-ally/ not all my comments were used so I thought I would share them in this mini blog. This of course is not a comprehensive exposition of the topic.
I have been severely affected (housebound with dozens of debilitating symptoms) with Myalgic Encephalomyelitis (sometimes known as Chronic Fatigue Syndrome, or ME/CFS) since all the way back to 1994. In 1995, I joined my first online forum in 1995 (CFS-L/alt.med.cfs) and ever since I’ve been a regular contributor to online ME/CFS and chronic illness forums and more recently social media.
My energy-limiting chronic illness/spoonie condition means I’ve never actually attended an in-person support group in all those years so it’s been great to have access to all the online discussions.
One of the things I’m most proud of is highlighting how graded activity/exercise programmes may not just help but can sometimes cause harm in ME/CFS. I wish someone had warned me of this as it might have prevented much of my disability. I initially became ill in 1989 as a sports-mad 16-year-old after contracting a viral infection; I wasn’t diagnosed until age 22: I blame the late diagnosis and the advice to exercise as causing my illness to deteriorate drastically as for the first few years I was only mildly affected and in full-time education.
Unlike pharmaceuticals, non-pharmacological interventions like exercise programs are not highly regulated. The harm many of us had suffered from exercise programs was not being picked up. I and others were able to use online media to warn others including in recent years those with similar symptoms following Covid (i.e. a subgroup of those with Long Covid). I would like to think this has prevented some people’s health deteriorating.
I was so frustrated by the medical profession ignoring the fact that graded activity programs for ME/CFS very often didn’t work and sometimes caused harm that I eventually devoted a lot of my free time and energy writing to peer-reviewed journals (see: https://www.researchgate.net/profile/Tom-Kindlon/research ). I teamed up with others I met online on many occasions. In recent years, national guidance in the field from bodies like NICE and the CDC has changed with graded exercise programs no longer being recommended and I believe what I and others I worked with online helped bring about these changes.
Both the internet and myself have changed over the years. Initially I was in some groups for young people who were ill but passing 50 last month, I can no longer be seen as young by any definition. Saying that, I’m still dependent on my parents who do all the chores for me in the family home, freeing me to use my limited energy in ways I find most meaningful. Apart from family life and some limited contact with old friends, most of my contact with the outside world is online. The internet has been a godsend in enabling me to connect with others with similar experiences and challenges in a way that doesn’t drain my energy stores too much. Also, now photos and videos can be shared enhancing the experience in comparison to the 1990s when everything was in text form. Throughout history, some have claimed the latest technologies would cause major harm in weird and wonderful ways we would now consider ridiculous and I think that’s how people should consider claims that it is somehow harmful for people with energy-limiting chronic illnesses to use the internet to discuss their challenges and reach out to others in similar circumstances.