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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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http://m.pghcitypaper.com/pittsburgh/despite-the-number-of-americans-living-with-me-cfs-little-is-known-about-the-debilitating-illness/Content?oid=19682
"the good news . . . the bad news, these people don't die" ?
This disease definitely will kill you, directly or indirectly.
It may take 35 years for the damage to accumulate so badly, but It Will.
Or it may take only 10 years. We are all genetically different.
In the severe form, if one's genes won't allow the long fight, that time may go down dramatically.
Thank God for Ron Davis; blessings to you and family.
That comment on it wont or will kill us is the classic joke that has been going around for decades. I don't know how old it is, possibly from the 80s. I actually cited this joke on these forums a few days ago.
I have to say I have a lot of concerns about that article. Presuming he was not misquoted I find it really hard to understand some of the things Ron Davis is saying. His 'won't kill you' quote is in direct contrast to other things he has said especially in relation to his own son. I just don't get it. He makes it sound like if you do nothing about it, you won't die, but you might live miserably. I have no doubt that his son Whitney has had major interventions including a feeding tube, without which he would surely not survive.
Also anyone who thinks that people with severe ME look 'absolutely normal' really needs their eyes tested. Does his son look normal? Absolutely not. Neither do many of the people I know with this illness.
This is further exacerbated by the feelgood stories where somebody with disability has overcome some limits and is reported on as a success. The opposite stories, lets call them downer stories (from the media perspective), almost never get published. The issue that everyone has to put in serious effort just to cope is overlooked. The issue that some find their situation worsening despite doing everything they can ... also gets overlooked. Many disabled achieve things much greater than the average person could imagine just by surviving. Its a Herculean effort sometimes.One can see it as being like a colander, people only see that piece of spaghetti that escapes and think that it's experience is typical of spaghetti.
That comment on it wont or will kill us is the classic joke that has been going around for decades. I don't know how old it is, possibly from the 80s. I actually cited this joke on these forums a few days ago.