Jenny Horner is another stalwart advocate in the myalgic encephalomyelitis (ME) community who inspires us to dig deeper and reach higher.
She first got involved with #MEAction UK in an effort to protect children from the effects of being pushed to exercise, which has shown to cause harm in people with ME. Most recently, she has been part of the team of #MEAction UK volunteers working to ensure that the National Institute for Health and Care Excellence (NICE) updates its guidelines for ME based on the international scientific consensus and biological realities of ME.
Get to know Jenny in her own words in our interview with her below. She is a true source of inspiration and wisdom, and we are so grateful to everything that she brings to our global community. Read more of her work on her blog, Tips for ME.
What made you want to get involved with #MEAction advocacy?
In 2016 I was involved in starting up #stopGET, which then became an #MEAction UK campaign. I was motivated to do this by the MAGENTA children’s graded exercise therapy (GET) trial at the University of Bristol. Many people in our community have substantial, long term relapses after GET. It seemed horrifying to me that they were rolling it out for children, instead of investigating the discrepancy between clinical trials and patient survey results in adults first. I also live in Bristol and have a University of Bristol degree so it felt like I had a personal responsibility to challenge questionable ethics processes at the university.
Tell us a little about the experience of this advocacy work. What have been the highs and lows?
An obstacle we face as a majority people with ME organisation is that successful advocacy is a lot about stamina: small wins and setbacks which over time add up to substantial positive change if you keep at it. It is rarely about particular big wins and losses. Unfortunately, stamina is exactly what we don’t have and lows for me have been when I’ve attempted to take on too much, beyond my energy envelope.
Setting up the #stopGET campaign involved preparation work before we launched a website and a couple of petitions but by the time we launched I was crashing too badly to publicise it as I’d intended. There’s something intrinsically off kilter about campaigning against GET in a way which causes post-exertional malaise (PEM)! It’s something I’ve learned the hard way. Having more volunteers, and working groups with well allies, definitely improves this issue. We can collectively pool together stamina and support each other to pace effectively.
A high for me was watching the parliamentary debate earlier this year. It was encouraging to hear my MP read out my email and more importantly to sense the general cross-party support for people with ME. This felt like a significant change from previous misperceptions and ambivalence. Also I was involved in coordinating our 2017 response to NICE when they were inclined to avoid a clinical guideline review. We definitely felt like ME advocates had achieved something specific when NICE changed their mind.
What is your story with ME? What was life like before you got sick?
My first encounter with ME was when a close relative got severely ill in 1994, as a teenager I found this scary and confusing. Experiencing ME in that order I’d say that the emotional impact on relatives can, in a way, be worse, I haven’t felt as scared for myself.
I had glandular fever in 1998 as a student and never fully recovered. For the first three years I boom and busted my way through studying and working. Then an ear infection tipped me into being too ill to work or study. Through my twenties, I built up from that point to being able to work full-time and lead a normal life of almost-remission, just through simple pacing, symptom based prescriptions and probably an element of luck.
While able to work, I built up project management style experience in the disability charity sector. The pay was bad but I picked up diverse skills working for small charities. Recently, I’ve also worked very part-time as a researcher with the Centre for Welfare Reform on the Chronic Illness Inclusion Project.
Anyway, going into my thirties I had a couple of steps down ME wise, triggered by infections. By 34, I was bedbound in a dramatic relapse, after an unusually busy week and a mild virus. I lost the ability to read, lines of text were no longer straight, and even following TV became difficult. It had been probably the happiest phase of my life. We had bought a house that needed doing up and we had the cutest puppy in the world (no bias!), but the positive circumstances enticed me to do too much. One day I was out walking my dog, I suddenly felt really ill, by the next day it was difficult to sit up in bed. This was challenging to process emotionally because I had built my life back up and a normal lifestyle had been stripped away overnight.
I did get out of the mostly-bedbound level after a few months (perhaps from nutritional intervention), but I’ve remained at an almost entirely housebound level for 6 years. I use a wheelchair if I do go out and this year we’ve had to install a stairlift. My legs stop working after a few metres and I get episodic paralysis. Most 80 year olds would struggle to adjust to such a limited lifestyle – it isn’t how I imagined my life would be at 40.
What gives you hope?
I think a lot of the difficulties we face as people with ME are attitudinal. I don’t mean just blatant prejudice, but down to how research money is allocated and who is worthy of welfare benefits. What gives me hope is that attitudinal change can be quick, dramatic and society wide.
I’m married to a woman and I’ve witnessed this change happen over attitudes to LGBTQ issues within my adult life. We have won the right to be boring smug-marrieds like everyone else, and where I live it’s now unusual for anyone to question this. This gives me a firm foundation to believe that substantial, attitudinal change is achievable, though it is perhaps worth noting that LGBTQ change has also been more incremental than news headlines make out.
If the main problems we face boil down to attitudes around ME and chronic illness, then what we need to be about is persuading the public and people in power to change their perspective. This isn’t as simple as regurgitating facts. A tweet about underfunding is compelling only if you already think it is important to fund biomedical research into ME. We need to step back and proofread everything we communicate to the public with fresh eyes and questions like, “If I didn’t already care about this, would I be convinced?”
A couple of years ago I read an interesting paper about persuasion in legal advocacy and I’ve condensed content from that paper down to a simple structure, which I’ve used in different formats including as short as tweets.
The persuasion savvy structure I use is:
- Shared values – start with something intended audience and pwME both think are important
- The system is broken – institution/s are failing to deliver our shared values
- The problem could happen to anyone/lots of people – it’s a big problem that affects the reader
- This is how you can help fix it – include a call to action, don’t leave the recipient feeling impotent
- Never be the 1st to mention opposing arguments – if they don’t already know about misperceptions of ME, don’t tell them unless you can structure it as part of the system being broken argument
People want to alleviate suffering, but when a problem is complex, their opinion can shift to blaming others for bringing problems on themselves. I believe this has happened in ME. We have a complex, multi-systemic condition which has baffled even researchers. Rather than confronting their perceived lack of power to help, and the difficult emotions that come with that, people have often blamed us. The emotionally safer option is to believe we are burned out from perfectionist tendencies, fearful of activity, deluded about symptoms, malingering or scroungers, even though these ideas are logically inconsistent with each other and don’t match the evidence.
We can aim to overcome this instinctive reaction to complexity by:
a) Avoiding reference to complexity or vague symptoms (‘multi-systemic’ is probably OK)
b) Avoiding phrases that makes it sound like so little research has been done that nothing is known about ME (this is tricky because very little research has been done, which we want to highlight as a system breakdown issue)
c) Emphasis recent advances – biomarker test in sight, biomedical significant results
We can overcome futility by giving a very clear call to action as a conclusion: donate to research here/ sign this petition/ write this to your MP. They have to feel that change is possible (it is!), and that they can do something to make that change happen.
If you want to try this way of framing ME out yourself you can apply it to any format: letters, newspaper articles, tweets, Facebook posts. Please send me a link if you try it out: @TweetTipsforME or [email protected]