The last couple of weeks my social media has had a lot more traffic. Partly due to my own story in the media, but also because other people with (very) severe ME or infectious associated chronic illnesses (IACI) like Long-Covid have been telling their stories.
Stories about complete isolation, living in darkened rooms, unable to do anything really. Stories about severe neurological symptoms and becoming more ill after trivial exertions. Often stories about people similarly or a lot more ill than I am currently, but close to how I have been myself in the past. Stories about medical neglect and abuse, harmful treatments, about suicide and euthanasia as a result.
With all this attention comes the necessary comments and DMs to “help” patients, and a wave of disbelief or even bigotry about the disease.
Some people think you cannot be this ill because of (chronic) fatigue (syndrome), which unfortunately many people, including doctors, still think ME is. This is partly because information about what ME actually is, is not properly disseminated.
People that advise you have to try X treatments, see X doctor, and you will recover. Not uncommon because it worked for them. Often what is suggested is quackery of the highest order, not suitable for ME, or stuff that most people have already tried. We also know that misdiagnoses are very common in CFS, let alone in ME, in almost half of the patients, so of course you will hear a lot of recovery stories that probably have very little to do with ME.
And then there is the misguided and dated notion that ME and its symptoms must be psychological, behavioral, a false alarm of the brain and nervous system and that we can fix it accordingly. We know after decades of behavioral research that there is no scientific basis for this.
With Long Covid it is almost without exception the covid-19 vaccination instead of COVID-19 itself that is blamed. The thing is, we have seen for decades that a small proportion of people can develop ME after vaccination. This is not new, nor is it isolated to covid-19 vaccination. What the real cause is is unknown. It has not been researched properly, just like ME itself. We do know that infections are the main driver of developing ME and LC. The idea that LC is vax damage is unfounded BS and it is not helping anyone.
What I unfortunately barely see is actual outrage about the fact that this is how many people with ME have to live. How there is not enough care. How the tiny amount of funding allocated to biomedical research does not reflect the disease burden or its prevalence.
Outrage about how patients have been harmed and abused by the medical system for decades, including many young children, which has caused lifelong disability. Outrage that young people even feel the need to consider suicide and euthanasia because of a lack of interest in investing in biomedical research, proper care and giving them a real perspective. And outrage that even after a pandemic where the number of people with ME has, as predicted by many, increased by the millions, it still did not incentivize to really work for change.
The overall theme here is that people try to push away the reality of the situation so it does not affect them. Protective distancing. It is a sense of control. It makes the illness and its horrors belong to others, something that does not concern them or will not happen to themselves (anymore) because they were able to recover.
You know, I cannot really blame people because the information about ME is not out there. Before I became ill I had heard of chronic fatigue syndrome. As a hard working dancer I thought it sounded kind of nice. As if you rest and sleep a lot and that there were effective treatments like CBT to get over it. I had no idea how wrong and deceptive this name was and what an absolute hell ME was going to be, which frankly has nothing to do with fatigue.
I really feel that we are making progress on many levels regarding awareness, but we clearly still have so much work to do. We patients are still invisible to the medical world and the general public. People on the milder spectrum can maybe go out on good moments and days, so you may not see it on the outside, and those who are too severe to be part of society are hidden in darkened rooms, literally wasting away. The shock and cognitive dissonance when people with ME do become visible in the media is palpable.
It’s so demoralizing.
Of course people would love to get better, ideally tomorrow, but I wish people understood that this is not about the tragedy of the disease alone. There are so many horrible diseases, but not many are this neglected. This is about a systemic failure that has been an issue for decades.
Patients are not interested in your unsolicited advice on “treatments”, which most of them have already tried. Nor are any conspiracy theories going to help move things forward.
We need public outrage about how patients are treated. How this has been going on for decades. How the suffering of people with ME, Long Covid, or all other people IACI could have been avoided if those in charge had given an effing damn. Decades ago!!
ME and IACI are not rare diseases that cannot happen to you or your family members. They are very prevalent after often rather mild and common infections, and for many they cause lifelong illness. Every time you try to make it an issue of others, when you dismiss ME, you are also worsening the situation either for yourself or your loved one in the future.
Your outrage today may therefore shape your life or that of your loved ones tomorrow.
Do not only act accordingly when ME has become your personal tragedy.
