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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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ME/CFS Awareness Campaign Please Join!

usedtobeperkytina

Senior Member
Messages
1,479
Location
Clay, Alabama
Hope, you bring up very good points.

We have seen clearly that we do need one main message.

But some personal circumstances have hindered the e-mail opinion exchange. The model we are working on is that a few come up with best ideas and then present to patients on the cause page for their vote.

So, those of us that still have some energy, while others take care of personal stuff, are fund raising and getting members.

Although some of the points you raised need to be worked, other issues have been figured out.

One, when color is used in logo, blue is preferred. Also, seems majority prefer name to have ME first, such as ME/CFS. But in text of ad, "chronic fatigue syndrome, also known as myalgic encephalomyelitis" should be used.

One idea presented was that if we did an ad that has a strong image, like a photo of an XMRV positive CFS patient, we would use a man in the publications that are mostly read by men. The national newspapers that focus on government-type news, might would be best with a man. But in other ads, we might use a woman or a teenager. Idea is to have them laying down in bed, looking straight at the reader with a soulful look. It will convey the subconscious message "It could happen to you"

But, we also have some lobbying for an open letter format without any graphics. There are advantages and disadvantages to each style.

Thanks for info on that other paper. I will check into it.


Just a little note, a charity ad is 40% off from an advocacy ad in one newspaper we talked to. With a carefully crafted message, we hope that we can get the message across but get the charity rate.

Tina