Hi
@Sevv -- Thank you for your kind post and words. I share our assessment on how ME/CFS compares to tinnitus. Of note is that there is actually a lot of crossover between the two conditions, and many with ME/CFS have serious cases of tinnitus and/or hyperacusis. Many people with tinnitus have discovered that staying busy, doing workouts, and other things helps them cope with their tinnitus. Because of the serious lack of energy and functionality to do much of anything (many with ME/CFS are bedbound), that's not an option for them.
Not only that, but for many years any medical researcher who even expressed an interest in researching it could count on it being held against them by the medical community. For decades, the prevailing attitudes in the medical profession claimed it was mostly depression. Anyone that challenged that assessment, or speculated that it was some kind of organic illness, could count on that having a devastating impact on their career. -- In the public at large, it was often derided and made fun of by being called the "yuppie flu". There's a hope in the ME/CFS community that the spotlight on long-haulers will lead to research that will benefit both them and those with CFS.
BTW, many who develop ME/CFS report it happened after a viral infection, thus it has many similarities with post-viral syndrome. What is noteworthy, is that many also report developing it after a vaccination. As I recall, the most common vaccination that leads to ME/CFS is the hepatitis C vaccine. Another real bad one is the HPV vaccine. It's heartbreaking to me to see how many young adolescent girls go from having a totally normal childhood, to one of being unable to function in a meaningful way. They can no longer go to school, have a hard time thinking, and many are mostly bedbound. -- Because of the devastating kind of brain and spinal cord injuries that can result from taking this vaccine, the risk/reward ratio on HPV vaccinations is
absolutely horrible.
For anybody interested, here's a moving account of one person's experience with ME/CFS...
Losing touch with Self
Before I became ill I was quite creative in the literary and artistic sense, ambitious, took initiative in the world and started projects, constantly contemplated deeper philosophical ideas and made interesting and unusual connections in my mind.
I am a very spiritual and self-aware person by nature, but these days I feel as if I only have awareness of my own belly button. When I'm tired (which is 95 percent of the time lately) I lack the energy to keep my mind from going in loops about the most mundane and insipid of things. I've lost the inspiration that used to make me passionate about living, where every day held new and promising horizons full of possible adventures. Once upon a time I deeply yearned to change this world (and I don't mean in the petty New Age way, I promise); now I don't even know if I can change myself.
I sorely miss the connection I used to have to the deeper aspects of myself; I guess I still do feel that sometimes, but rarely. The clarity, lucidity, knowing, confidence. The unshakeable conviction and belief in myself and my purpose. These days I feel like undefinable goo, some kind of larva indefinitely suspended in time just watching the world go past in a blur...
My intention in posting this isn't to complain or receive pity, but rather to chronicle my journey and share what I'm going through with those who might resonate.