interested in morgellons

[curiousaboutmorgellons]

Hello,

I'm a science radio producer in NYC. A fellow producer and I are working on a documentary radio piece about Morgellons. We're looking to gather the stories of people with Morgellons, and talk to some doctors/specialists who have treated people with the disease. We want to present real portraits of how terrifying it can feel to suffer Morgellons.

If anyone is in the NYC area and would be interested in sharing their story, we'd really appreciate it. Please message me by Friday 1/19/12 to get in touch.

Thanks,
Audrey Quinn

[Sunnyand7777]

Ms. Quinn,

Are you connected with Laura Mayer of Radio Lab at WNYC?

Gwen Simmons

[scabdraggr]

why 2 days after this request did we first get this message?

[tcmgpt13]

Some information about audrey quinn by audrey quinn. She works currently as a science reporter an NPR and has done one program called :

'a new gene for depression?'

Hmm...

audreylquinn.weebly.com/about.html

[Sunnyand7777]

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 sinister motives.

We have communicated with Ms. Mayer, 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

[tcmgpt13]

Thank you for your warning sunnyland. I have recently been worried about a poster called Msvigor in UK who gave a recent interview to what ??? media person in UK. I am waiting for that shoe to drop in the near future, although at the time it was hard to say that to her. Hopefully Jo in UK had vetted that media person before Msvigor did it but who knows? Even the best attempts to protect those with M have been foiled by the darker side of the media and medical world. The Will Storr fiasco which hit Cindy C for one. The Mayo clinic dermatology 'study' which took advantage of naive patients for another.

When I saw one of Audrey Quinn's programs was about a depression gene I had a huge 'uh oh' minute. It would not surprise me if the current slant at NPR (which pretty much follows the DC media and political slant) is pushing ahead to marginalize Morgellons in various programs by hinting that the right little colored pill for depression or anxiety will fix diseases such as Morgellons in no time at all and accomplish it all at budget prices. All of it enhanced of course by throwing in the suggestion that we were all born that way, having a 'special' gene...Just icing on that cake so to speak.

Medications for depression and anxiety are far cheaper to dispense en masse, thereby eliminating the necessity to diagnose and treat even some of the medically recognized infections many of us are known to have been diagnosed with. I would advise those who have health insurance to get diagnosed with what infections can be diagnosed now, before we are cut off from seeing specialists like infectious disease doctors to be tested for what infections can be diagnosed through testing (I have lyme and several reactivated herpes infections, not uncommon findings in those with M). Soon funding for this care will slow dramatically. As will the cost for the necessary medications begin to fall more heavily on those who are ill. All the signs of that are already previewed in the looming enormous cuts to be made to doctors and hospitals involved in the medicare and medicaid programs.

Those infections which can be detected are not the whole story for us I know or even close to all that is wrong with our health, but having more of us speak out with what has been found may slow the steam roller of misinformation which is out there in the media and in the medical community, the one which flattens us all with the 'crazy' label. The only thing which will stop the current trend in the media to distort information about Morgellons are real scientific facts to refute some of the trash 'news' stories and 'studies' being discussed in the media about those who have Morgellons. Speculation has never been a very good tool to fight media propaganda about Morgellons, propaganda which is apparently aided and abetted by some of the more venerable medical institutions. Politics at work I fear.

[scabdraggr]

Many think they can jump on our wagon and leave with a story to make them rich and famous.Small people that can't handle this as the story will be too big to ever get out in that manner.

[Sunnyand7777]

Thanks TCM for your great insight. As if we don't have enough to deal with, now we have to watch out for these sleeze-balls, as well. I do remember when the UK guy was hunting for people. I will be anxious to see his article and pray that it is not another hit on us.

Gwen/Sunny