Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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If there are tens of millions of people around the world with CFS, why is there almost no public awareness of it? And why is no one working to raise awareness?
I agree that there is definitely more public awareness today. I just think it should be just as much as HIV/AIDS got and my thoughts were describing why I thought that wasn't the case.No, we don't have the same equation. We're still looking, however it's odd that you feel there is little public awareness today. I have found just the opposite...more awareness, doctors have heard of it, all nurses it seems, neighbors, and I definitely send my family & friends short educating articles about the illness.
In my experience of this condition too much emphasis is put on the fatigue aspect. If someone for example had a bout of sickness and diarrhoea, yes they would be lying around at home. But they wouldn't describe their predicament primarily as one of tiredness. I feel every day bloated, nauseous, migraine, yes and tired.
Here's another 'darned if you do / darned if you don't,' and it stems from the general lack of understanding people have of ME/CFS:I have really struggled with this in the last few weeks. I hate the dependency this has put on me. I was such an independent person before all this, and now I feel like I have to be at others' mercy and can never have my own say.....This. Sucks. So. Badly. It's truly a no-win situation. Darned if you do, darned if you don't.
People close to me get it.
I wish I was able-bodied and able-minded enough to be out there helping this world to be a better place. It needs more people who care!!
Something I have mentioned on here before is this. In my experience of this condition too much emphasis is put on the fatigue aspect.