If you had 10 minutes to tell someone about your experience with ME/CFS, what message would you focus on? Your listener would be an average person, not anyone who is likely to work in healthcare or have any contact with ME/CFS, but who is maybe interested in broadening their horizons.
Thanks, for me that makes a difference, it’s not my personal experience but the most important thing people need to know about ME/CFS is that like other illnesses there are different severity levels and you can be severely or very severely affected.
I would mention the wide range of diseases that can cause ME/CFS - starting with EBV/glandular fever, because many people know people who took a long time to recover after glandular fever, mentioning Ebola, Ross River fever, Q fever, and Covid-19.nI would note that there is no evidence that any sort of personality type or psychological history increases the risk of having ME/CFS. I would note that many people recover in the first few years, and that can lead them and other to thinking that there are cures, when actually it is just what they were trying when they recovered naturally. I would mention the different levels of severity, and how it can be a living death, people can be fully bed bound, requiring 24/7 care. And I'd talk about the scientific recipe that can "prove" almost anything helps - subjective outcomes coupled with unblinded treatments that discourage people from thinking and saying that they are ill. And that that recipe has been applied to all sorts of suggested cures for ME/CFS, but nothing has been credibly proven to cure ME/CFS. I'd mention that there are now many more researchers working to understand the biological cause of the disease, mostly as a result of so many people getting it after Covid-19 and the dawning recognition that the disease has a substantial economic impact. That's a pretty long message of course, and there are lots of other things that could be said.
I quite often have to do this. I usually tell them I have a painful chronic illness that means it takes a day or two to recover from everything I do, and that's why I can never say yes to things happening on consecutive days. I can't go much further in general conversation, and I only tell them the name if they ask. Most don't, usually out of politeness; it's thought intrusive to ask for medical information that isn't volunteered. I'll happily tell them more if they ask, though.
Mine is a sad story about senseless suffering and abandonment. A bad problem made much worse by human flaws in everyone involved. Things could have gone so much better if people had been able to listen and accept reality. I can understand why a person would want to put a positive spin on their story and am trying to avoid that. Can you tell a good story without positive spin or narcissistic exagerations of one's agency and strength?
I want to tell people I have a long term chronic illness that makes me feel ill all the time and limits my ability to do things, and that it's a very strange illness that the more you do any sort of exercise, including ordinary things like walking, the sicker you get, so any sort of attempts at rehabilitation are likely to fail, leaving the person sicker. The cause is unknown, but it's often triggered by an infection that can be mild. It's been shown not to be psychosomatic, but there is a problem that some doctors still believe that discredited theory. Severity levels .... Recovery in the first few months to a couple of years is quite common, as a temporary post viral illness. There's no effective treatment, so pwME are left to manage their lives by pacing their activities to stay below the threshold that triggers PEM, with explanation of delay, uncertain duration, etc
I would want to talk about how easy it can be to worsen a mild case into a severe one with intense exercise and hard work. How you can destroy your functioning without realising it because it sort of slowly ebbs away and then all collapses at once. I would want a focus on how GET can cause a permanent worsening. That the people who get sickest with ME are often the people who trust their doctors and try their hardest to recover through hard work and exercise. And that they are then completely disbelieved and fall through the cracks of society. I would want to tell a version of my story to illustrate this. But it could be someone elses. It is important we stress this stuff. Too often advocates are too polite to do more than gesture towards the immense iatrogenic harm that is being perpetuated against pwME. Perhaps this isn't strategically the best approach but this is what I want people to know about my disease and what I've gone through.
I'm going to tell an anti Garner story. One of humility and human fallibility in the face of great uncertainy and despair.
I think we can. I tell people my truth as I know it, which is that it's hard to live with and puts big limitations on what I can do. At some point I might add the bit I left out, which is that there's no treatment either. I don't say much more because I'm usually with other people to do something I like, so I want to enjoy it if I can. I'll be spending at least eight times as long afterwards thinking about ME. Everyone's different, though. Their truth is coloured by age, experiences, relationships, living situation, length of illness, etc. I'm quite old and have had ME for so long that I can't really remember not having it. It's just a fact, a stain on life that I can't wash out, like poverty and racism. It makes me angry enough to want to fight, but I have another truth too: there's only so much time left before I'll be even more incapacitated by old age. I used to be a permanently furious young activist who could never have imagined feeling like this, but I need to save some of my energy for the good bits. They're only on loan and I don't know how long for.
I think I’d probably start with how much I got wrong when first ill and how little I knew. About how so many of my assumptions and to be honest skepticism of some of the stories I began to hear about ME, how it affected people and how they were treated by healthcare systems, was wrong. I think a lot of people start of like this and also acknowledging the difficulties in accepting the reality of how ME is misunderstood and mishandled could help people with some of their doubts and caution in accepting what we tell them.
Just realised I misunderstood the point of the thread—I'm really sorry! I thought it was about talking to another individual about ME. I have a virus at the moment, so my brain fog's even worse than usual. Ignore all the stuff about what I say to people I meet, it's not relevant at all to public messaging.
Yes that's roughly the angle I want to approach it from. And to also explain how little everyone else involved knew and how wrong they were. One could accuse society, families and medicine of horrible neglect, disbelief, abuse of me patients but that behavior is in large part a result of incomprehension. It is better to acknowledge that the circumstances make it hard to understand and do the right thing. In my case, no one did anything right because the situation was too stressful to think clearly, with too much uncertainty to understand what was happening or in what direction to go. PEM is also very unintuitive and the illness fluctuates and that makes things hard.
I’d agree that’s a really good approach. It nicely opens the door to showing how good quality research and education is a solution too.
