I've had CFS about as long as you. I didn't know Marie Osmond had CFS, is that why you want to contact her? I know Cher dealt with it then denied she had it but had to cancel her recent tour. Celebrities don't seem to like to admit they have an illness. I think it hurts their careers and perhaps the insurance they have to carry for performance contracts.

Frankly I am giving up on writing checks to Solve CFS or any other research entity. They've accomplished nothing since I got sick so I doubt they will solve anything in my lifetime.

No, Marie doesn't have cfs. I just think she is an active, healthy benevolent person that if approached could respond with empathy and possibly create awareness, public education.
I FEEL SRONGLY THAT MEDIA ATTENTION WOULD SPEED UP THE PROCESS OF MAKING CFS AN UNDERSTOOD ILLNESS. This in turn, would create all kinds of ripple effect--- MORE DR.S BELIEVING IT, MORE POSITIVE DISABILITY CLAIMS,MORE LOCAL HEALTH SERVICES FOR CFS, MORE FAMILY MEMBERS BEING SUPPORTIVE, AND YES, slowly, more priority for research.
I truly believe this is THE FASTEST TRACK! We need celebrities to understand and embrace the illness; there are many who would support this if they receive personal stories of peoples suffering. If anyone has an inkling of how they could get the energy or have some help to write a short personal story of how cfs has affected their life - PLEASE CONTACT ME- upon agreement I will forward them to the most reliable contact place for a celebrity. Change has to start somewhere!

I've always said that if the President, or Oprah Winfrey got CFS, something would THEN be done for us. Until then, Big Pharma owns us. We give them lots of money with the cost of our meds and supplements and all the little diseases that tag along with CFS or that CFS causes. Everything from our gastric disturbances to UTI infections, etc, cause people to need more and more testing and more and more drugs. CFS is a cash cow for the government. It would not serve them at all to help cure us! .

It is well documented that Cher had CFS in the 80's. People weren't talking about this illness at that time either!! She had to take three years off and stay in bed. She has obviously learned how to handle performing while being mildly crashed!! Since standing up or sitting down singing, which are things that are second nature to her, is what is required of her, I'm sure that over the years, she has figured out how to pull it off. I give her a lot of credit.

It's wonderful that you are thinking along the lines of celebrity help and them being able to give us exposure. I'm sure it would help! I've often said on this forum, "Let's write to Oprah" because I seriously believe that if someone rich and famous REALLY knew about what's going on here, they would help in whatever way they could.

I know that the CDC and World Health Organization know all about CFS/ME. They have just swept us under the carpet as far as research goes, and as long as we are all this sick, and needing treatment.....why should they want to fix us??? No money in that!

How incredibly sad this is, right???

Thx for your support of my idea. If 2 people commit to me that they will write Oprah, then I'm in. All we need is a reliable address and I will collect email letters and print them.LETS DO THIS!!!

Hello Pouty,
There certainly isn't any harm in writing to Oprah. I believe she had
some thyroid problems at one time. Too bad she isn't on the air
any longer to reach a wider audience. Or maybe she's on the
Cable channels with Sunday morning spiritual program?
Which probably doesn't present these kind of topics.
Dr. Phil had some people on his show talking about Lyme
Disease. But some of these misunderstood topics can take some
strange turns. So I don't know that he would be the best one
either.
If someone like Oprah was a spokesperson, I'm
wondering what kind of a platform they'd have to speak out?
Maybe writing into 'the Doctor's' show would
educate the public.
Just sharing some ideas. I'm happy to write.
Just want it to go to an effective place. Let me know
what you think.

Yeah, I forgot Oprah 's show isn't on anymore. What is "The Doctors Show" ? Really appreciate your interest. My cfs pattern is to only spend time on something that seems worth it, so yes, I want to make sure it is handled well. I'm sort of new to this, although I knew lots of social/political activists in my pre-cfs life.I will keep your name handy and give myself 2 weeks to try and come up with a plan- so many people need/want to do this but are too ill.

If you want a little taste of encouragement, and don't we all need that now and then...here's something to brighten your day. Dr. Ian Lipkin, one of the world's most respected virologists, said recently that he feels that the chronic illnesses are the next big frontier in medical research.

All the recent work that's proved beyond doubt that we have a serious physical illness has helped enormously. Researchers all over the world are taking a new look at illnesses like ours, with a view toward using all these new research tools like gene expression research to ferret out the specific disease mechanisms going on inside us.

Once they find the specific mechanisms that are corrupting our neurology and cellular metabolism, they can possibly backtrack to find out what's driving these dysfunctional pathways.

Here's a link to a good article by the founder of Phoenix Rising...

http://www.prohealth.com/ME-CFS/library/showArticle.cfm?libid=19388&B1=EM120314C&utm_source=EM120314C&utm_medium=em&utm_campaign=MECFS&slvor=12187.1174856.0.1.0.514480

Celebrity endorsements are good, I agree. I'm thinking especially of Michael J. Fox and Parkinson's, but there are many others. Anyone remember Lou Gehrig? But we haven't had that gift of a big splash in the news, and I don't think you can create those without the right combo of circumstances.

Read the article, maybe it will cheer you up. I know it did make me feel better...a little anyway.

Just an observation...celebrity buzz can be good, but it only takes one slam by somebody like Rush Limbaugh to accuse us of being part of a plot to steal taxpayer money through phony Social Security disability claims...and we're back into bad press once again. And as we all know, smear campaigns are highly effective. Heartfelt pleas are not going to get the same buzz as a negative comment by a big cheese like Limbaugh.

By the way, he's been losing stations lately...lots of them. So there's always hope.

Ok. To answer Pouty's question, what is "The doctor's Show".?
It comes on daily in my time zone PST at 3pm. It's on
My Network TV here and airs in US Canada, Mexico, Australia etc.
It's a panel of 4 doctors who answer questions mainly that
people are too afraid to ask their doctors. So. Actually that's
probably not the best format Do you have a tv? There's another
show called "Dr. Oz" which has become popular. Have you seen
that one? It comes on daily I believe on ABC and check your
local listings for time. He talks about everything under the sun and to me he's more educational. Things like liposuction nightmares, the real deal on B-12 shots. I haven't searched to see if he's covered chronic fatigue. Maybe someone on here knows.
That would be a better show to have it on. Though he's not 'a celebrity' in the sense of Oprah or
Cher or Michael Fox.
Thanks for this post Richie. It was encouraging to see what kind of research has been done. I agree sometimes circumstances come together around these health causes. But there are always people reaching out to raise awareness too is my impression.
I know I'm rambling a bit here. But did anyone see
"Dallas Buyer's Club".? That was quite a commentary on what went on in the HIV/gay community before they got a lot of recognition.

p.s. when I asked if you owned a tv, I wasn't implying that you
should or shouldn't have one, just wondering if you'd have a
chance to see what you thought of some of these shows.
Dr. Oz seems to stress prevention so I"m more drawn to
the people he brings on though I haven't watched it
for4-6 months.

A list of celebrities diagnosed with Chronic Fatigue Syndrome can be found in the following article:

http://www.medhelp.org/posts/Fibromyalgia/Celebrities-Diagnosed-With-CFIDS-ME/show/13558

Here is the correct web address for the list (sorry for the mistake):

http://www.medhelp.org/posts/Fibromyalgia/Celebrities-Diagnosed-With-CFIDS-ME/show/713558

What about Ellen Degeneres? She is a very caring person and puts lots of dollars and support out there. My dear friend who is a Hurricane Katrina survivor and has had CFIDS twice as long as I have,
might just have some pull with her. Can't promise anything. You know Ellen is fromNew Orleans.

Reply #12 - 12/06/14 9:01pm
What about Ellen Degeneres? She is a very caring person and puts lots of dollars and support out there. My dear friend who is a Hurricane Katrina survivor and has had CFIDS twice as long as I have,
might just have some pull with her. Can't promise anything. You know Ellen is fromNew Orleans.



I like the Ellen idea or reaching out to doctors or both. If your friend could give us some guidance on how to make contact we could get started. -TammyDiane

Did you read Avril Lavigne has a "mystery illness".....maybe it's CFS/FM?

My gut tells me there ARE celebrities that suffer from CFS but are likely advised not to admit it publicly. Or maybe they haven't been properly diagnosed or don't want to admit it themselves. But I personally feel that it would need to be someone who has it or has someone close to them that has it. Just because a lot of people are only invested in things they understand.
I love Oprah. I watch her OWN network a lot. I've learned a lot about it. And I believe she very dedicated to helping people become their best selves. The first time I heard Dr. Oz say the word Fibromyalgia on her show many years ago, I about jumped out of my chair. Even though it only lasted a few minutes, I wrote to her to thank her. I shared my story and asked if they would consider doing a full show on it. I did not get a reply.
Did anyone else see the media about Glen Beck recently? He went public about his ongoing health issues...including adrenal fatigue. I watched videos of him sharing his story (you can watch on youtube) and felt he was very genuine. His tears felt very sincere to me. But he has been slammed by the media. He's received a lot of nasty hate. His politics aside, he is a person. No wonder celebrities don't want to share.
I commend you and would be happy to write. Let me know...