This extract from Piers Morgan’s book ‘Wake Up’ is the inspiration for this blog. It got me thinking about how our online patient community is perceived by those outside our ‘bubble’. It’s something that needs to be considered as it is those very people that we need to engage with our cause.
‘ If there is one thing guaranteed to drive people into the arms of a populist, it’s the shrieking woke brigade telling them all day long what to think, say, eat, drink and laugh at. Yet those doing all the shrieking are actually a small minority. Twenty percent of adults in the UK and USA use Twitter, and a recent survey in America found that, of those, 10 percent post 80 percent of the tweets. They tend to be the loudest and most aggressive, and therefore make the most noise and grab the most attention. They also tend to be very politically aware and skew liberal.
This has created a weird two-worlds planet – those who are on Twitter and those who aren’t. The former, especially the woke element of the 10 percent doing 80 percent of the tweeting, work themselves and like-minded tweeters into a relentless frenzy of self-righteousness that seeks to tell everyone how to live their lives, and shame, abuse and cancel them if they don’t follow the exact rules laid down by the PC police.’
This is the toxic Twitter environment that we find our advocacy and awareness-raising in, we are in there with ‘Covid deniers’ and anti-vaxxers. I have chosen these two groups as they also claim to be ‘science-driven’ and post a wide range of ‘research’ to prove their claims. In my view, people outside of our bubble do not necessarily see any difference between the messaging from our community and these two groups. We know there is a huge difference between ‘us’ and ‘them’ but by looking at us through the eyes of others and it is clear that there is a problem. As this article states –
In addition to that, the ME/CFS community is actually very engaged and interested in research that’s being done about the condition. They are interested in knowing what we’re doing here at the JAX CRC, and because they’re literate in science, they often have good ideas about things that we could look at that we hadn’t even thought of.
Imagine how ‘outsiders’ view our comments about the PACE trial or any of THOSE psychologists. Do we appear ‘woke’ (as Piers Morgan describes it) and part of ‘cancel culture’? Our community fully understands the trauma and harm that has been caused to our community, but I think we need to be careful in how we inform others of our historic, and current, gaslighting and harm. Any time I talk about PACE or those psychologists, I always feel I should include a caveat of ‘this sounds like a conspiracy theory but….’ because I know it sounds too ludicrous to be true. Unfortunately, we know all too well that this happened in real life.
The M.E community is like any other community in both the real and online world. We are a diverse bunch with a wide range of viewpoints and personalities. As with any community, there is a very small minority (0.001%) who cross over the line of what is acceptable on social media. No one in our community is ‘in charge’ and it is no one person’s responsibility to call out or monitor abusive comments, I personally would not feel comfortable ‘telling someone off’ for something they had posted. Everyone has their own opinion and we all have freedom of speech. The overwhelming majority of posts and comments that I see on social media are questioning statements politely or engaging in robust debate. In over 6 years of being an advocate, I have never seen ANY severe breaches of social media ‘etiquette’ and certainly never seen any death threats to any of the people who have harmed our community. I think we are very good at self-regulating when it would be all too easy to be very angry and abusive online. I notice the point when I need a ‘digital detox’ – it’s always after noticing that I’ve posted a tweet and felt the need to delete it a few minutes later. I’m not an argumentative person in any aspect of my life, arguments make me very stressed so I do my best to avoid riling people or starting arguments on Twitter. It’s much easier to ‘walk away’ – my M.E doesn’t thank me when my symptoms flare due to stress.
On the whole, our community are very supportive of each other and other chronically sick patient communities on Twitter. This has been particularly evident since Long Covid began last year. We want to share our lived experience to prevent others having to learn from our mistakes – particularly in terms of exercise. The pandemic has been a testing time for both communities but solidarity has been achieved. We have many more similarities than differences and we are stronger together.
Members of our community have repeatedly been falsely called ‘online trolls’ and have been accused of issuing death threats. As I say, I have never personally seen any evidence of this and I’m a very regular user of Twitter. Personally, I believe the people referred to above are deliberately linking our community to Covid deniers and anti-vaxxers in order to discredit us. Painting us as people who do not know what we are talking about and/or being anti-science which is in actuality the complete opposite to the truth. We believe in GOOD science and call out the BAD (such as the PACE trial), our views have been supported by M.E scientists and researchers worldwide. These psychologists have singled us out and I would suggest they are the ‘online trolls’ with regular abuse posted online (alongside press articles featuring them) targeting M.E patients.
PLEASE NOTE – The NICE review is being finalised in April, we have been anticipating this behaviour from the psychologists and friends/family since the first draft was published in November. I would encourage our community to not react. Stress is not good for us, save your energy. Nothing you say will make any difference to their viewpoint. There will be many more newspaper articles, TV segments, and online posts recommending exercise or criticising our community between now the final NICE guidance publication. There are official channels for complaints and I have been using those appropriately recently, not to get them ‘cancelled’ but simply to draw attention to unprofessional behaviour – First do no harm. People outside of our community need to know that harmful recommendations to exercise could potentially cause an M.E patient to become house or bedbound. These recommendations could have serious consequences. It’s not simply a case of having a difference of opinion or being the ‘PC police’ (as in the Piers Morgan quote).
To people outside of our community, I would say this. We are not part of ‘cancel culture’, we want to engage with others to spread awareness of our cause. We have online conversations with researchers and scientists to try to bring about progress for our community. Yet, there are a small group of researchers and psychologists who do not like their methods being challenged by patients. Their viewpoints and research findings are being debunked in a wide-range of places around the world and yet they will not even contemplate that they could be wrong. We do not want to ‘cancel’ them, we want them to admit their mistakes so we can all move on. Unfortunately, it would seem that not only will they not admit past and current mistakes, they are also now attaching themselves to Long Covid.
How long will it be before Long Covid patients are also tarnished with the ‘online trolls’ reputation?
Love Sally
and Foggy (obviously)
xxxx
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