Morgellons Support Network
Compassionate Networking for Morgellons Syndrome and Skin Parasite Sufferers
Use Caution When Dealing with Any Media Requests!
Hello Everyone,
I am posting a email communication that was just sent to radio reporter, Laura Mayer, with WNYC in New York. The CEHF is contacted frequently by news media for people to interview. It is necessary to determine the focus of any media story before we assist in any connections. Many of you may recall the Will Storr reporter from the UK and Sara Bione, "medical Student". Both of these individuals extended offers of help to our plight, when indeed, they were snakes in disguise with sinistrer motives.
We have communicated with Ms. Mayers, however, received no response when asked the details/focus of her radio program. Instead, a notice, seemingly, has been placed on Morgellons forums by yet another reporter, Audrey Quinn. When doing a quick Google search, it seems these two reporters are connected.
I, personally, caution anyone when considering doing media with these reporters or any other. Many times their motives are less than professional and certainly not to help us. Remember the Mayo article from May, 2011? Please know that I am here as well as the entire Charles E. Holman Foundation, if anyone needs assistance in dealing with media. Just use caution!!
Sincerely,
Gwen "Sunny" Simmons ---------------
Jan 22, 2012
Laura,
Do you happen to know an Audrey Quinn? Did you happen to put her up to this?
You have obviously misunderstood Morgellons Disease and have exhibited no desire to enhance your understanding of the physiological manifestations.
I strongly urge both of you to read the peer reviewed publications in Medical journals on the Morgellons topic ASAP.
I've seen some solicitation of unsuspecting Morgellons patients on forums that sounds very suspicious. Not sure what the plan is with you as you were unable to describe any plans for a REAL program on Morgellons.
It appears that you learned little from our previous correspondence and are lacking in your knowledge of the subject. If your intent Is to prey on these very ill and desperate individuals then I'm concerned that your brain may be working against you.
Unless you can somehow explain your intent, a message of caution will be necessary to protect these patients in the Morgellons community.
Morgellons is very real and very debilitating. It is NOT of psychiatric origin, but rather a serious medical condition that over long term can cause some behavioral and psychiatric issues.
I hope I am wrong but this does not set well. Morgellons patients have suffered enough. People who have Morgellons are very sick but I can assure you that we are not stupid.
Accurate portrayal and sincerity will be key in reporting on this subject. You might have been better off had you taken my advice on the necessity of accuracy in reporting.
A message will be widely distributed describing in detail your sinister intent.
Get Real,
Cindy (Casey)
Views: 76
Replies to This Discussion
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Permalink Reply by Lucie E. on -
Hi Gwen,
Thank you for the notification. I don't think that we know enough or at least have enough research done to know our own illness that well anyways. There really wouldn't be much to say to these "Media folks" except for conjecture and wild hypothesis as to what this is in any case. I do think your right and it's a fine idea to refer these people to the published research results that are out there or to the few people in the medical community who are looking into this rather than to launch into rants about what it may be. Many of these journalists are really sensationalists interested in tabloïd style material and probably don't care what they have to do or who it hurts as long as they get their cabage leaf published and noticed. Frankly I don't even understand what good it would do for us sufferers to try to speak with the media. Most of us couldn't explain it as well as a scientist or doctor could and at this point even they don't know what it is exactly. Most of the attention we risk getting from these people is negative attention. I think it comes down to patience. We are all desperate for a solution and wan't something to be done so we think that calling attention upon this illness will make that happen sooner. It may not have that affect at all for all we know. Most of the time were getting attention from the wrong people and discrediting ourselves in the eyes of people who could have helped, if they could only have taken us seriously. Sadly, alot of what I see out there in the forums is conjecture and finger pointing about things that we don't even know. At times I read things that sufferers wrote and even I (a sufferer myself) find it borderline paranoïd. It's that sort of thing that attracts these vultures in the media world. Not everyone working in the media are bad, far from it, but our own behaviour is part of the reason we attract the trashy tabloïd types in the first place, we feed them what they crave! I know it's hard not having answers, I live it every day and I'm the type of person that needs to understand things to feel at peace, but right now I don't know much and I have to live with that. We all have our opinion about what this is and I'm no exception, but until I'm sure and I have some proof I'm not going to go finger pointing such or such industry, company, product, government or Group for causing this illness. Stuff happens! It may be no ones fault. At least if we call for attention we should be talking to the right people, not just anyone that comes along.
Thanks,
L.
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Permalink Reply by Gwen "Sunny" Simmons on -
Lucie,
You have warmed my heart with your words of wisdom! We are all so desperate that questioning someone's motives just doesn't even come to mind sometimes. I have found that most reporters do have a geniune desire to report the facts. Many, after getting involve, are horrified at the reality of our disease and how we have been treated. However, lately, it seems that the "less than kind" and "anything for a story" types are popping up. We're on to them! Perhaps, some of these might really have good intentions are are miscatigorized, but ...I would rather be cautious than sorry later. The forums are viewed as "easy pickin's" by these sinister types. Most of the legimite reporters contact one of the organizations, first, since they want real science and the current research facts. Too much garbage, theory and junk on the internet. That's why I put up this warning. Anyone wishing to respond to any reporter type should have them checked out or risk being humilated, which will certainly hurt them, plus have far reaching effects.
Thanks so much for being a rock and sharing your wisdom. As the reporter was told by Cindy, "...People who have Morgellons are very sick but I can assure you that we are not stupid."
Gwen/Sunny
Lucie E. said:Hi Gwen,
Thank you for the notification. I don't think that we know enough or at least have enough research done to know our own illness that well anyways. There really wouldn't be much to say to these "Media folks" except for conjecture and wild hypothesis as to what this is in any case. I do think your right and it's a fine idea to refer these people to the published research results that are out there or to the few people in the medical community who are looking into this rather than to launch into rants about what it may be. Many of these journalists are really sensationalists interested in tabloïd style material and probably don't care what they have to do or who it hurts as long as they get their cabage leaf published and noticed. Frankly I don't even understand what good it would do for us sufferers to try to speak with the media. Most of us couldn't explain it as well as a scientist or doctor could and at this point even they don't know what it is exactly. Most of the attention we risk getting from these people is negative attention. I think it comes down to patience. We are all desperate for a solution and wan't something to be done so we think that calling attention upon this illness will make that happen sooner. It may not have that affect at all for all we know. Most of the time were getting attention from the wrong people and discrediting ourselves in the eyes of people who could have helped, if they could only have taken us seriously. Sadly, alot of what I see out there in the forums is conjecture and finger pointing about things that we don't even know. At times I read things that sufferers wrote and even I (a sufferer myself) find it borderline paranoïd. It's that sort of thing that attracts these vultures in the media world. Not everyone working in the media are bad, far from it, but our own behaviour is part of the reason we attract the trashy tabloïd types in the first place, we feed them what they crave! I know it's hard not having answers, I live it every day and I'm the type of person that needs to understand things to feel at peace, but right now I don't know much and I have to live with that. We all have our opinion about what this is and I'm no exception, but until I'm sure and I have some proof I'm not going to go finger pointing such or such industry, company, product, government or Group for causing this illness. Stuff happens! It may be no ones fault. At least if we call for attention we should be talking to the right people, not just anyone that comes along.
Thanks,
L.
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Permalink Reply by Sherry Taylor on -
good points
Lucie E. said:Hi Gwen,
Thank you for the notification. I don't think that we know enough or at least have enough research done to know our own illness that well anyways. There really wouldn't be much to say to these "Media folks" except for conjecture and wild hypothesis as to what this is in any case. I do think your right and it's a fine idea to refer these people to the published research results that are out there or to the few people in the medical community who are looking into this rather than to launch into rants about what it may be. Many of these journalists are really sensationalists interested in tabloïd style material and probably don't care what they have to do or who it hurts as long as they get their cabage leaf published and noticed. Frankly I don't even understand what good it would do for us sufferers to try to speak with the media. Most of us couldn't explain it as well as a scientist or doctor could and at this point even they don't know what it is exactly. Most of the attention we risk getting from these people is negative attention. I think it comes down to patience. We are all desperate for a solution and wan't something to be done so we think that calling attention upon this illness will make that happen sooner. It may not have that affect at all for all we know. Most of the time were getting attention from the wrong people and discrediting ourselves in the eyes of people who could have helped, if they could only have taken us seriously. Sadly, alot of what I see out there in the forums is conjecture and finger pointing about things that we don't even know. At times I read things that sufferers wrote and even I (a sufferer myself) find it borderline paranoïd. It's that sort of thing that attracts these vultures in the media world. Not everyone working in the media are bad, far from it, but our own behaviour is part of the reason we attract the trashy tabloïd types in the first place, we feed them what they crave! I know it's hard not having answers, I live it every day and I'm the type of person that needs to understand things to feel at peace, but right now I don't know much and I have to live with that. We all have our opinion about what this is and I'm no exception, but until I'm sure and I have some proof I'm not going to go finger pointing such or such industry, company, product, government or Group for causing this illness. Stuff happens! It may be no ones fault. At least if we call for attention we should be talking to the right people, not just anyone that comes along.
Thanks,
L.
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Permalink Reply by Sherry Taylor on
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yes! thank you!
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