Oprah to Do ME/CFS Piece By End of the Month

[Cort]

I don't know if what venue but I do know that an Oprah reporter is doing a piece on ME/CFS and it should be up - where I don't know - by the end of the month. She's contacted me several times (I missed some earlier emails (lol). It appears that she's really been beating the bushes. I know that she's talked to quite a ME/CFS experts.

That means it could be a major piece! . I imagine, although, I don't know, that it's for the journal.

I gotta think this is all coming out of the IOM report.

I wonder when the last time Oprah or someone connected with her did a piece on ME/CFS??? Anybody know?

 

[GracieJ]

From what I have read, Oprah and company have stayed away from the topic. It just doesn't convert to a cozy sound bite and warm fuzzy wrap-up. I could be wrong.

If she gets on board with it, that would be wonderful.

 

[Cort]

May be this is another sign things are changing...

From what I have read, Oprah and company have stayed away from the topic. It just doesn't convert to a cozy sound bite and warm fuzzy wrap-up. I could be wrong.

If she gets on board with it, that would be wonderful.

 

[Who Me?]

I remember a show with Teitlebaum but I don't know if it was her or Dr. Oz. I know Oz did.

I do remember years ago she did a show a about weird medical things. She had a woman on who had gotten extremely ill from Cipro, ended up in skilled nursing faculty for awhile.

Please keep us posted. This is big.

http://www.prnewswire.com/news-rele...nt-have-to-live-with-that-agony-58728792.html

 

[Who Me?]

@Cort Found this on Google. Old Prohealth thread. Geocities is gone so the link us useless.

http://forums.prohealth.com/forums/...ah-had-a-discussion-on-me-cfs-in-1998.191228/


I am not sure if this was already posted at some point, but I came across this transcript:

http://www.geocities.com/hotsprings/spa/4225/oprah.html


CFIDS ON OPRAH SHOW JULY 29, 1998

On today's Oprah Winfrey show, Wednesday July 29, 1998, there was a segment on CFIDS. While we as patients are usually not satisfied with what is reported on television, this segment was much better than what we usually see. It wasn't comprehensive and there was an uninformed reference by Oprah to depression. However, this segment will have the effect of educating the public. And by means of Oprah's status as a trusted media "person" we should see increased legitimacy. We believe that this show was informative and another important step in our battle. What follows is a partial transcript. The show was called "Illnesses that may go undetected for years because the symptoms are so subtle."

Oprah - Cher came to find out that her exhaustion was Chronic Fatigue Immune Dysfunction Syndrome. Wilhelmina Jenkins can relate to Cher because she was working as a physicist when she began feeling the same things, tired and confused. When was this?

Wilhelmina - This was 1983. I was working as a physicist at a lab outside of Washington DC, I was finishing my doctorate in physics at Howard University, I was teaching classes, I had 2 great children and everything was going very well. I was very happy teaching. All at once it all fell apart. I became completely exhausted. The major problem for me was with the exhaustion was the cognitive problems. I could not understand the research that I myself wrote several months earlier. I got to the point where I couldn't even read a comic strip. By the time I got to the third pannel I couldn't remember the first. When I now talk to someone on the telephone I write down my own address and telephone number because I can't remember. I developed terrible pains that would reduce me to tears. |

I tried to continue to work. I would get lost on my way to work and had to pull over into a parking lot and ended up crying my eyes out. I went to doctors who tried very hard but couldn't figure out what was wrong. I had all kinds of tests and they couldn't find anything wrong. In 1987, I was completely disabled and unable to work when a fortunate thing happened. I developed a major depression. It was fortunate because my physciatrist treated the depression, noticed that when the depression was treated, everything else was left. The mental confusion, the pain, the sleep disorders, the total fatigue then he said have you heard of Chronic Fatigue Syndrome. I thought I had been losing my mind. I lost my ability to think. It broke my heart.

Oprah - But you're speaking so well and thinking so cognitively here.

Wilhelmina - If I had a slight interruption I might lose it all together. I can keep it running for a while.

Oprah - Kamilah is Wilhelmina's daughter was just 14 when those symptoms struck you.

Kamilah - I was a freshman in high school, very active, I was very happy, very active. I was on the drill team and hung out with friends. Then I just crashed. I slept all the time. I was in a lot of pain. My legs hurt all the time. I could hardly make it up the stairs to my next classes. I have an awful short term memory so my teachers helped me by allowing me to take home work.

Oprah - (To Dr. Nancy Snyderman) So what is this?

Dr. Snyderman - This is the Chronic Fatigue Immune Deficiency Syndrome. It used to be called chronic fatigue. This has gone from the kissing disease to mono to now where we finally understand that it is it's own entity. We have recognized that pockets of this illness have popped up all over the country. We think that it may be caused by a virus. It may be more than one virus. Women get it more often. African-American women get it even more often. People almost always think they are going crazy and that they are going to lose their minds. It starts with self doubt. And you look good from the outside.

Oprah - Do you ever get over it?

Dr. Snyderman - It's something you live with forver, there is no cure. So you learn how to adapt to it. That really means changing your lifestyle significantly. Sometime medications but that depends who you are and how severe your symptoms are. This disease has really earned it's spot because of all the national attention it has received.

Wilhelmina - I ceratinly hope that this show will wake people up that this illness can strike anyone of any age, any ethnic group, both genders, anyone can get this illness. What helps a lot of people is the support of family and friends. They understand that we would have not chosen this life. If there was anything we could do to get back to our life we would.

Oprah - I'm sure people don't know, they think you got lazy or you're not trying as hard.

Dr. Snyderman - It's usually people who are teachers, researchers and doctors. People who have no secondary gain.

 

[JennyJenny]

I sent a couple of emails over the last couple of years for her to do an ME/CFS segment on her OWN network. I think I e-mailed a link to Dr. Montoya's fMRI scans. I may have sent the SEID information because I sent that to lots of media outlets too. I also may have included links of CIACM from youtube and can't remember sending anything on Forgotten Plague but I will be sending tweets when it is released to all that I did with "Invisible Illness". I also tweeted her the "Invisible Illness Palo Alto" youtube link to her and OWN. (I tweeted it about 320 times.) I don't know if I ever sent anything to O Magazine.

I remember an e-mail from them at one point saying they cover many important topics, blah, blah. Whether they said anything about covering ME/CFS before I can't remember.

I sent "Invisible Illness" out to EVERYONE and May 12th Day to EVERYONE. FP is up next. I do my advocacy my way because I just feel that when I tweet or e-mail them (Celebrities, news media (tv news stations local and national, talk shows; HBO, John Oliver, Colbert, The View, Rosie O'; Cher, Kathy Griffin, Howard Bloom, Howard Stern, Today Show, The Whitehouse, POTUS, The Queen, NIH, NHS, CDC, Insurance Companies, Researchers working on ME/CFS in case they missed it, newspaper after newspaper and radio after radio station, Universities and Hospitals around the world, Ireland and Australia Health organizations, medical journal after medical journal, CNN, Dr. Nancy Snyderman, Dr. Gupta and Zakari, Al Jazeera America, Mark Zuckerberg through FB; Bill Gates, Warren Buffet, Bloomberg, Donald Trump, Hillary Clinton, Joe Biden's wife, on Twitter, Governors, Senators and on and on, no one can ever say... "We didn't know." Of course they have people that look at this stuff for them but I try to reach them with the most moving or interesting information like the "Invisible Illness" mini-doc, SEID IOM link and the Docs.

Looking forward to tweeting and e-mailing and FBooking "Forgotten Plagues" release information.

This link should show you mostly the "Invisible Illness" mini-doc, I think it is set to public but I stink with settings. It took me a while but I got it out there. I will use all the same twitter accounts to send to again for FP.
https://twitter.com/Janet22345/with_replies

 

[fdotx]

My sis in law picked up an O Magazine for her flight and there was an article in it about a gal who saw Dr. Montoya and although not cured is doing much better.

 

[Who Me?]

There's an Oprah magazine app. Maybe it's there. I don't have enough room on my phone.

 

[Who Me?]

It's the December issue.