CFS/XMRV on Good Morning America

[Finch]

Oh my! No wonder she understands. It's heartbreaking to hear of anyone that young getting CFS!

 

[Frickly]

Joy posted this on another thread and I thought it deserved a thread of its own.

http://abcnews.go.com/video/playerIndex?id=8864348

 

[caledonia]

Wow, this is a good one - a good simple explanation of the retrovirus and all of it's possible implications. She even says nobody can say it's all in your head anymore and the CDC needs to do more research.

 

[MEKoan]

FANTASTIC!

And, yes, I'm shouting!

 

[Andrew]

Wow!!!!!!!

 

[zoe.a.m.]

Wow is right!

Such a different demeanor from the doctor this time--in a good way! She seemed truly enthused and confident and that came across (I do hope) to every viewer.

I'm not sure who at ABC is responsible for this, but I am very grateful and they deserve many thank you's!

 

[hvs]

This was about as well as anyone could have done. She communicated very clearly. She conveyed the massive significance of the finding. Great job.

To nitpick--and it really is a nitpick because I defy anyone else to do as well in the hot seat--she relayed the fact that 67% of sufferers have the retrovirus, but didn't get across that almost no healthy people have/had it.

 

[dannybex]

Yes, thanks...

That doctor is SO articulate...amazing how she can convey so much information in such a relatively short interview.

I have a feeling that someone at ABC has a family member with CFS...they're the only network to do TWO decent segments on CFS lately, with the first coming even before the announcement.

I'm sure there will be more to come...no doubt they're getting emails of thanks.

 

[shiso]

I also thought she did a great job conveying the facts. She definitely has great media communicating skills.

The CAA website says the CAA has nominated Dr. Moore to be a member of the next CFSAC committee (along with Dr. Mikovits, Dr. Peterson, and others). According to the CAA's letter to DHHS with brief bios of the nominees, Dr. Moore's son was diagnosed with CFS 4 years ago (no mention of how he's doing today) - so she has a personal connection to the disease.

 

[KC22]

Wow!! That was a great interview. Very clear and precise.

I cannot believe we are all seeing and hearing this news. I think a lot of us thought this was it for us.... No, there is now hope!!!

 

[leelaplay]

"It's all in their heads." That arguement is OVER

Joy posted this on another thread and I thought it deserved a thread of its own.

http://abcnews.go.com/video/playerIndex?id=8864348

mornin' frickly. THe separate post was a GREAT idea! I plan to email the link to everyone I think cares - I'm sure they're still a bit overwhelmed by the first mass-mail-out onto which I had cut and pasted all the early studies.

I listened to it yet again, just for the thrill of it, but also to transcribe a part that I'm going to add to my pages of quotes - it's up there with the Dr Klimas one on preferring to have AIDS over ME/CFS! (btw still looking for the earlier quote that ME/CFS is more debilitating than cancer or AIDS except for the final 2 months).

Dr. Donnica Moore on ABC's GMA, referring to the WPI's xmrv study in Science, Oct '09

What we do know, what this study shows us first and foremost, most importantly, is that there is a biological basis for Chronic Fatigue Syndrome. So we don't want to hear any more about " oh they have depression" or "It's all in their heads." That arguement is over. This is yet another piece of evidence that it is biological. It's not the only piece of evidence, but it's the most alarming and attention getting, or what Dr Susan Vernon of the Chronic Fatigue and Immune Deficiency Syndrome calls "a game changer."

shiso - thanks for that great info

I also thought she did a great job conveying the facts. She definitely has great media communicating skills.

The CAA website says the CAA has nominated Dr. Moore to be a member of the next CFSAC committee (along with Dr. Mikovits, Dr. Peterson, and others). According to the CAA's letter to DHHS with brief bios of the nominees, Dr. Moore's son was diagnosed with CFS 4 years ago (no mention of how he's doing today) - so she has a personal connection to the disease.

Now who is the CAA? Being Canadian and new to the forum, I'm new to all these american acronyms.

 

[margib]

I missed the interview (OK, didn't want to cringe w/disappointment), so I am thrilled to hear y'all's reports (I could watch it, but don't have speakers on my dino-computer). islandfinn, I'm American and can. not. keep. up. with. the. acronyms, people! in my moms' online support group, they send out a list of our frequently-used acronyms that would be meaningless to others (nak = nursing at keyboard). sooo, if anyone can point me in the right directon, thanks!

 

[Jerry S]

Finn

CAA is the sometimes controversial CFIDS Association of America.

http://www.cfids.org/

Jerry

 

[leelaplay]

ah - thx Jerry - in being informed remember I did know that - brain has it filed as CFIDS, will have to refile as CAA.

aside -I seem to have primarily alphabetical retrieval, hence things like "I'm going to the lab to return my books" come out of my mouth

 

[DrDonnica]

CFS on Oprah

Wow! There is hope!!
I can't believe I am seeing this on mainstream media. She understands our symptoms.

I don't know if she has the many possible causes, but she was definitely impressive.

She also looked believable. We need to get her on the Oprah show where millions watch, and yes, Finch, on the panel.

KC22: tell you what--if you can get The Oprah Winfrey Show to do a segment on CFS, I will happily participate!

 

[DrDonnica]

My DVR normally records GMA every morning. For some reason it didn't this morning. Grrr.

Anyway, I too thought she did a great job. If there's one thing I would have liked to see her mention is that there are varying degrees of ME/CFS, and that some people can become homebound and bedbound for years, not just months. But I think she could be a great spokesperson for us. She certainly comes across as very credible.

Wayne

Wayne: Sorry you missed the segment! It was on GMA Health, not the "regular" GMA. To view this segment, click here: (http://abcnews.go.com/video/playerIndex?id=8864348). To view her previous segment on Good Morning America Health discussing what CFS is, click here: http://abcnews.go.com/Video/playerIndex?id=8664151. To read Dr. Donnicas 5-part series on CFS, click here http://www.drdonnica.com/display.asp?article=12261). Good Morning America Health airs weekdays at 2:00 pm EST & 5:30 pm EST on ABC News NOW, the ABC News' digital cable network, available on cable, broadband and mobile. I generally do a medical segment for this show once/week, usually on Thursdays.

 

[DrDonnica]

"Type 1 vs. Type 2"

That was a good interview.

The one thing that intrigued me was she said, one day there will be a Type I and a Type II. I wonder what she meant by that, other than the obvious - child onset and adult onset. Like what would that mean in terms of what is going on the body?

For example, there are two different metabolic processes going on which cause Type I and II diabetes, but they are both diabetes.

I often try to compare CFS to diabetes since it's a serious disease that a lot of people understand. Simply: in diabetes, people don't make enough insulin; in CFS, people don't make enough energy units (ATP). Using the type 1 & type 2 examples, I am referring to an age distinction (children & teens with both tend to have a much more acute onset: 100% well one day, 100% sick the next) and well as an onset distinction (acute vs slower onset) and the extent to which one is disabled/overwhelmed. While people with type 2 diabetes can be just as badly affected, they generally respond "better" to lifestyle & behavioral changes than type 1 patients who "MUST" have medication. The problem is that while we can give insulin shots (or other meds) to diabetics, we don't have a replacement solution for PWC.

I also try to compare CFS patients to cars. When you have a car with a full tank of gas, it drives well. When it runs out of gas, it won't go. No warning (other than the red light when you have "low gas"). No matter what. BUT--it "looks" the same. When you put more gas in, it will run again. The problem is that we don't have a "gas" to give to PWC.

I am all ears for any other metaphors that you like that I can use to illustrate this. I am also trying to think of any other illness that has a name that is totally confused with a symptom (eg. Chronic Fatigue Syndrome vs chronic fatigue).

 

[DrDonnica]

That was certainly the best interview regarding CFS that I guess one could expect on a national morning news show (that are of course sponsored big time by drug ads).

My only complaints echo Wayne's: I was sorry that she didn't stress how serious this can become (no talk of some patients becoming bedridden for years, for example)...and that there was no mention of the possibility of mold or other environmental/heavy metal/toxic chemical issues that may play a large role in developing CFS. Just viral...

It's a great start however. A six-minute interview about CFS on national tv...that's amazing in itself.

Thanks for posting this Cort!

d.

Yes, I am aware of those short-comings. . .but thanks for recognizing that the time limitations were a factor! Plus I was trying to talk so fast! I also try to walk a fine balance between providing enough info for people to understand CFS but not too much info to overwhelm them & lose the audience.

 

[DrDonnica]

It's amazing that CFS got coverage on a show like GMA, and it was a good interview overall. She was clear, credible, presented well, and was accurate in what she said; I bet she would make a great advocate.

I know we should be grateful for any kind of mainstream media coverage (and she only had 5 minutes!), but maybe because I've been feeling wistful about an imminent separation from my job in a career that I worked so hard to build and loved (my one year leave of absence expires soon), I came away with the impression that her presentation was a bit sugar-coated for the mainstream audience. If I had watched this a year ago before I got sick, I wouldn't have thought this was a serious disease.

While she described the symptoms very competently (and if you were listening especially carefully you could work out that, for example, if a game of soccer caused you a 3 day crash you were probably too sick to maintain a full time job), I thought her statements described the more mildly affected and didn't get across, for example, the high rates of work disability among those who are more seriously affected. How I WISH I had an important business meeting I had to go to tomorrow!

Sorry--just had to get that off my chest! Thanks for posting the interview.

Sorry about that--I made sure to correct that in the second segment & will try to emphasize that in the Dr. Oz segment. I didn't "out" myself about living with a husband and a son with CFS, and the examples I drew upon were from their experiences. With the soccer example, I was not only thinking of my son, but of former US world cup soccer champion Michelle Akers, who had CFS & still competed in the world cup! (getting IV transfusions at half time). What I find that people have a really hard time understanding is how PWC can be bedridden for over a year (as my son was. . .and is now again bedridden for the past week), but still have some "good days" here & there. And while there are WAY too many people who are completely disabled as a result of CFS, there are many PWC who are still able to work, travel, socialize much of the time (but not most or all) & I need to give them support & "cover" as well (while we build awareness, we have to be careful not to engender discrimination from employers, schools, etc). I am very sensitive to concerns about the "pariah" issues and social isolation ("why invite her to the party? She won't be able to come. . .").

 

[DrDonnica]

GMA Health segment

Here's a comment I got from Melissa, who has ME/CFS and has worked heavily in the broadcast field

Thanks for chiming in Melissa & thanks to Cort for posting that!