• Welcome to Phoenix Rising!

    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.

    To become a member, simply click the Register button at the top right.

Do You Know Campaign Starts

usedtobeperkytina

Senior Member
Messages
1,479
Location
Clay, Alabama
Well, I have started my little project to get CFS into the public consciousness, educate at least one person with little effort, no money and no need to create any organized plan with other people.

It is called "Do You Know".

I go to community message boards and pose a leader question. In the subject line, I put "Do you know"

And then in the message part, I put the leader question. I have quite a few I am using. Here they are:

  • What illness is more common than multiple sclerosis, Parkinson’s disease, lupus, ovarian cancer and lung cancer yet only 20 percent of sufferers have been diagnosed?
  • What illness has 77% of patients reporting negative experiences with their health care provider and 66% believing the treatment they received made them worse?
  • What illness do Cher, Director Blake Edwards, “Seabiscuit” author Laura Hillenbrand, Jazz pianist Keith Jarrett and famous soccer player Michelle Akers share?
  • What illness can be as disabling as AIDS, mitochondrial diseases, multiple sclerosis, cancer, lupus, rheumatoid arthritis, heart disease, end-stage renal disease, chronic obstructive pulmonary disease (COPD), yet many doctors in the US and about half in the UK do not believe it exists?
  • What recently-discovered virus (2006) has led Australia, New Zealand and Canada in the last month to ban people with a certain diagnosis from donating blood and caused a task force to be formed in the US looking into whether the blood supply in this country is contaminated?

Then I give them some time to answer. But not too much or it will be forgotten and it will end up so far down the list of threads no one will notice it.

After giving the answer, I say, "May 12 is CFS Awareness Day. If you would like answers to any of the following questions, I will check back and answer them. Just copy the question into your reply. What is CFS? How many people have CFS? I feel tired a lot, could I have CFS? What are the symptoms? What is the difference between depression and CFS? Why is CFS so controversial? What kind of doctor should I go to if I think I have CFS? What is level of disability if someone gets CFS? Can you die from CFS? Is there a cure for CFS? Does exercise help for CFS? What about diet and supplements? Do men and children get CFS? Is CFS contagious? What causes CFS? What is economic impact CFS? What can I do for my friend who has CFS?


Now, for the leader questions, I felt I needed to have reference for answer just in case someone smart comes on and challenges me or a reporter contacts me.

If any of you want to do this, feel free to use my questions. If you want to know the answers to the leader questions, PM me and I will send it to you, with references.

I have already posted on 20 different message boards. It was quick because it is actually one message board with 20 different sections for communities in our metropolitan area. And then I noticed other sections for communities in two other metropolitan areas of the state.

I am going to be busy next three days. But I figured I could do this quickly.

I already have one person who guessed on one of the questions. But they were wrong.

Not only is this easy, doesn't cost anything, but I am having fun.

Tina
 

starryeyes

Senior Member
Messages
1,558
Location
Bay Area, California
Great work Tina! :victory: I like the way you wrote that up. Keep us posted on what kind of responses you get. What did that one person end up guessing that was wrong?
 

usedtobeperkytina

Senior Member
Messages
1,479
Location
Clay, Alabama
What illness is more common than multiple sclerosis, Parkinson’s disease, lupus, ovarian cancer and lung cancer yet only 20 percent of sufferers have been diagnosed?


The answer given.... and you are going to love this..... was "I would guess depression."

So now I have to look up how often depression is undiagnosed or misdiagnosed. I don't want to say they are wrong, if the answer could be both depression and CFS.

Tina