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Pittsburgh City Paper article on M.E/CFS. Ron Davis is interviewed
- Thread starter anniekim
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5150
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alex3619
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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.
Forbin
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That dark "joke" is cited on p. 71 of Osler's Web (1996) as something that goes back to the Lake Tahoe outbreak [1984-].
JoanDublin
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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.
Many people DO die from ME and secondary illnesses relating to it. Leaving aside the handful of people whose death certs list ME as the primary cause of death, many others die from related cardiac problems or cancer, etc One would expect someone like Ron Davis to have an understanding of that. It's worrying.
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.
Many people DO die from ME and secondary illnesses relating to it. Leaving aside the handful of people whose death certs list ME as the primary cause of death, many others die from related cardiac problems or cancer, etc One would expect someone like Ron Davis to have an understanding of that. It's worrying.
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.
meadowlark
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If it makes you feel better, I was a journalist/editor for thirty years, and I always presume there are misquotes in a piece, or quotes out of context. They always happen, even to the best reporters. Usually they're benign, and sometimes not, but they're always there, if only at the eyelash level. It's easy, for instance, for a source to tell a reporter that someone with ME/CFS "may" look normal, or "can" look normal. The reporter, writing notes at lightning speed, is going to write something like "patient = normal" or "look normal." Later, she slightly misremembers what that phrase was meant to represent. Or, if she tapes her interviews, she may miss a little word while transcribing, or the word got lost in some background noise. In yet another scenario, Davis may have talked about patients looking normal in the context of patients who are in the less affected, more active sector, but the context is missing in the piece. (Not always the reporter's fault, incidentally ... it may be because the editor cut a paragraph, etc.)
As for his statement that ME/CFS won't kill you ... it's a black joke, and jokes aren't subtle. It reminds me of something a friend said to me, during a laughing/crying session: "Too bad it won't kill you," meaning that ME/CFS is not widely known as a killer, and so it is hard to trigger public concern and get your friends and family into the streets in the style of ACT-UP activists.
To me, the article is pretty great. We may quarrel with details, but it has power.
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JoanDublin
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@meadowlark I think we might have to differ. I know many things can got lost in translation and to check this out I did ask Janet Dafoe on Twitter (when she tweeted it was a great article) to ask if Ron was maybe misquoted re the 'normal' comment and got no reply - which is unusual
Riley
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That's a great piece. It's very thorough. Anyone know what type of publication this is?
Mary
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I liked the article - like @Riley, I thought it was quite thorough. Yes, Ron's comment about too bad it doesn't kill us may have sounded insensitive but I don't care - it's black humor, which I think we need to survive this awful illness and if anyone's entitled to say that, he is. And he's very eloquent the rest of the article.
I have severe ME/CFS, and on a good day I look very healthy - probably because I eat so well, no junk food, people have told me I look like I take care of myself. Yeah ... just trying to survive. Though when I'm crashed, I look totally different, like I have the flu, and people who know me can tell just by looking at me. Though I don't see very many people on a daily or even weekly basis anyways. And only see doctors when I'm up to going to see them. None of them see me at my worst as I would not be able to get out of the house. So I think Ron's comment that we look well is probably true for many of us much of the time. No, not for everyone of course, but that is part of the problem - looking well.
I have severe ME/CFS, and on a good day I look very healthy - probably because I eat so well, no junk food, people have told me I look like I take care of myself. Yeah ... just trying to survive. Though when I'm crashed, I look totally different, like I have the flu, and people who know me can tell just by looking at me. Though I don't see very many people on a daily or even weekly basis anyways. And only see doctors when I'm up to going to see them. None of them see me at my worst as I would not be able to get out of the house. So I think Ron's comment that we look well is probably true for many of us much of the time. No, not for everyone of course, but that is part of the problem - looking well.
alex3619
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Those of us who can get out and about by ourselves usually look well. They are the public face. Those collapsed in a bed on oxygen and with a feeding tube are invisible even to most doctors. Most doctors are also unaware that ME kills.
@alex3619 that is the problem with disability all along the line. If you are excluded from work and life by poorly designed infrastructure or the severity of your illness the people out there working or living their lives will not know about it.
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.
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.
alex3619
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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.
Reading this gave me hope :
'“I think we can cure this disease,” Davis says. “I think we’re getting close enough to understanding the mechanism and I think it’s a matter of figuring how to change the switch, and then you’ll be able to cure it. Treating it would be OK, but I want to cure it.”
@Rose49
'“I think we can cure this disease,” Davis says. “I think we’re getting close enough to understanding the mechanism and I think it’s a matter of figuring how to change the switch, and then you’ll be able to cure it. Treating it would be OK, but I want to cure it.”
@Rose49
Tom Kindlon
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Tom Kindlon
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Tom Kindlon
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Tom Kindlon
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5150
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Hi Alex, I've heard statements recently saying, "Ron Davis isn't going to be finding anything. Such diseases are not driven by genetics, but act more like cancers."
With this thought in mind, don't we need a cancer-background, super-hero in our camp?
It isn't my own conclusion, but it does seem logical to have a cancer specialist , and place him/her in charge of looking for the markers left in the wake... or any other ways of studying to unmask the culprit(s) we are fighting, because I don't believe we have yet heard those words spoken: what (pathogens) are we fighting against? what is the main one? etc
So far , "It's an array of pathogens that cause an even greater array of pathogens, due to how the immune system becomes so attacked it can not keep pace with all the work that it must do". Is this a layman's definition that is correct, in your mind?
Always appreciate your viewpoints Alex; and thanks for all that you do for PR.
alex3619
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Thank you @5150 .
We need all the experts we can get until cured patients are walking out of doctor's practices all over the world. We do not know, in advance, where the breakthroughs will come from. Having said that I am unsure that cancer specialist/researcher might be especially useful, though I would be interested in seeing research from researchers looking at post cancer problems.
I have been wanting to say something about the state of the ME and CFS community, so this is a good opportunity. I think that, as a community, we are finally maturing into something that is really effective. We have been needing this for a long time. Just recently I was about to do something, or write something, a bunch of times, only to find someone else had just done it. This is not a source of chagrin for me, its a source of pride.
No matter how much any one of us can do, there is still more to do. If we have people stepping up and doing that, or doing even a small bit for the more severe patients like signing a petition, then we can make a change. We ARE making a change. If I cannot do something, and there is a lot I can not do at the moment, then others can and are doing it.
When I started in advocacy, which was primarily science advocacy, it was a case of "what, there are CFS activists out there?". Eight years ago I put the estimate at the number of global advocates at about two thousand. I wouldn't want to say what it is now, except that it is much much higher than two thousand. Every person who reads and likes an article, or signs a petition, or reposts a relevant article, is helping our entire community. Yet we are doing far more than that as well.
I think we can all be proud of our community, and not just here on PR. I would like to thank everyone who is helping make that happen, even if all you can do is click on a button from time to time.
We need all the experts we can get until cured patients are walking out of doctor's practices all over the world. We do not know, in advance, where the breakthroughs will come from. Having said that I am unsure that cancer specialist/researcher might be especially useful, though I would be interested in seeing research from researchers looking at post cancer problems.
I have been wanting to say something about the state of the ME and CFS community, so this is a good opportunity. I think that, as a community, we are finally maturing into something that is really effective. We have been needing this for a long time. Just recently I was about to do something, or write something, a bunch of times, only to find someone else had just done it. This is not a source of chagrin for me, its a source of pride.
No matter how much any one of us can do, there is still more to do. If we have people stepping up and doing that, or doing even a small bit for the more severe patients like signing a petition, then we can make a change. We ARE making a change. If I cannot do something, and there is a lot I can not do at the moment, then others can and are doing it.
When I started in advocacy, which was primarily science advocacy, it was a case of "what, there are CFS activists out there?". Eight years ago I put the estimate at the number of global advocates at about two thousand. I wouldn't want to say what it is now, except that it is much much higher than two thousand. Every person who reads and likes an article, or signs a petition, or reposts a relevant article, is helping our entire community. Yet we are doing far more than that as well.
I think we can all be proud of our community, and not just here on PR. I would like to thank everyone who is helping make that happen, even if all you can do is click on a button from time to time.