Good Morning America Gets It Right!

September 25, 2009

Posted by Cort Johnson

Its nice to see chronic fatigue syndrome (ME/CFS) well represented on the national stage. Dr. Donnica Moore was comfortable and poised on Good Morning America as she clearly enunciated many of the major aspects of ME/CFS.  Early on she focused on post-exertional malaise – something we really need to get across. The inevitable depression question didn’t come until the end and she handled it well.

She’s been on  the national stage before on CNN, Tyra Banks and others. The best thing, though, is that she’s  been nominated for the federal advisory panel on CFS (CFSAC) by the CFID’s Association of America. Having this sharp and articulate women on the panel could only help. Having “Dr. Dannica” on the panel  should boost the panel’s visibility  substantially. I sincerely hope she makes it.

http://abcnews.go.com/Video/playerIndex?id=8664151
21 comments

{ 20 comments… read them below or add one }

Keith... September 25, 2009 at 7:21 pm

Agree she did a great job describing CFS in a very limited amount of time. My one critisicm would be that she did not get across that there are severe cases where people cannot even get out of bed or are comletely housebound. She described more of the moderate remitting and relapsing level of CFS without touching on the pehaps 25% that can’t really function at all. She seems very well educated and thoughtful however and had to go with the questions at hand.

Reply

cort September 26, 2009 at 6:58 am

Yes that’s an essential aspect of ME/CFS that people on the outside really need to get – to deeply get. That’s the only way they’re going to get past the name and recognize how serious this disorder is. Maybe the CDC with their new focus on ‘unwellness’ should see this video!

That aside she’s a great spokesman for us – articulate, completely unrattled and already pretty well known. I’m glad the CFIDS Association nominated her to CFSAC panel and I hope she gets through. With her visibility she’d be a big boost for them. I wonder what connection she has with chronic fatigue syndrome?

Reply

Sharon September 26, 2009 at 7:01 am

I agree it was nice to see her talking about how this was a “real” illness. But I think it came across as something of an inconvenience not the life destroying illness that it is for many of us. We don’t have to rest up for a business meeting. Our careers are gone and if we can get up and get dressed, it is a major accomplishment.

Reply

Cort for Melissa September 26, 2009 at 11:35 am

Melissa e-mailed me this comment – thought I’d pass it along

http://abcnews.go.com/Video/playerIndex?id=8664151

**Very very good explainer. For a 6 minute segment, I am quite impressed!

Reply

Melissa September 26, 2009 at 2:37 pm

I agree with everyone on the fact that she didn’t get into the nitty gritty of how life altering and debilitating ME/CFS is for many people. But let me just say, I have been a news producer for 15 years (part of that with GMA) and most stories are 1 1/2 to 2 minutes. This topic got 6 minutes and the info that Dr. Donnica fit into that time was amazing. Yes, basic but very very good. I plan to pitch her as a guest to all of my television friends after seeing this segment. She is a great spokesperson to have on our side and given a longer forum, I’m sure she would really make people listen.

Reply

Tom Kindlon September 26, 2009 at 3:44 pm

Very good.
One quibble: it’d be good if she could be told that what she describes isn’t the CBT for CFS that is normally described in the literature, the so-called “evidence based treatment”, which is basically a graded activity/exercise programme. What she describes is pacing and pre-emptive rest.

Reply

Dr. Donnica September 27, 2009 at 2:56 pm

Thanks for all of your comments.. .especially to Melissa who understands what goes into putting these segments together! I do not have CFS, but I have lived with it in various stages for more than 10 years. My husband was acutely striken over 10 years ago after a flu-like illness with a moderate case of CFS and my son developed a severe, overwhelming form of CFS more than 5 years ago at the age of 11.5. Yes, I know how debilitating it can be–my son was virtually bedridden for a year. He didn’t have the “energy” to lift a water bottle or walk to the bathroom. His comment is that “CFS doesn’t kill you, but it takes your life.” And yes, I have a broken spirit and a broken heart as a result. But the purpose of this segment wasn’t to tell my story or my son’s, but to give an overview of CFS in general, for the purpose of educating the general public as well as healthcare professionals who are also viewers.

Reply

cort September 27, 2009 at 3:17 pm

Thanks Doctor! I thought you did a wonderful job. This can be a tough group, that’s for sure – but I think everybody was impressed by your steadiness ‘under fire’ and your ability to articulate so clearly the many different facets of ME/CFS. The Good Morning America segment was the best quick exposition of ME/CFS before a national audience that I’ve seen. I don’t know how you got on GMA – but thanks for getting on there – and I hope you continue to find more opportunities like that. Good luck with your husband and son.

Reply

Mio September 28, 2009 at 12:20 am

Thank you Dr Donnica!
Your voice reached out to Europe aswell! thanks to this blog! Love it! It´s a huge relief when you can listen to a professional MD stating the real deal about this devastating illness. We need people like you! Your son´s comment is very strikening, CFS really takes your life. I have tried to raise 2 kids and beeing severly ill at the same time. I don´t know how I have managed. It´s been a journey in hell sometimes. Finally, after 18 years I got financial support to get all the expensive testingpanels and now I know my immunesystem, NK-cells a a t, is totally exhausted. It´s tough.

Reply

Melissa September 28, 2009 at 9:05 am

I think Dr. Donnica’s explanation of pacing and pre-emptive rest was right on the money. After 5 years, I found a specialist (Dr. Charles Lapp) who taught me about this and it literally saved my life and my career. I just couldn’t accept filing for disability before I was 40 and under his care and advice, I have gotten my life back. I still struggle every single day but have accepted my limits and know how to work within them. I feel terrible for those with CFS too advanced to do that.

Reply

Keith... September 28, 2009 at 6:54 pm

Not to sound ungrateful Dr. Donnica for the exposure or help because God knows we need and appreciate it but I really feel any overview of CFS should include a description of severe CFS so people understand how crippling it can be. Doctors need to recognize this also and many do not. Maybe your personal experience would have a lot to offer if you fealt comfortable or thought it appropriate to talk about on television. Anyway you did do a great job in 6 minutes. Thank You. A CFS sufferer of 22 years who once could not get out of bed.

Reply

Michelle Roy September 29, 2009 at 11:56 pm

I am very glad that she made the distinction that ME/CFS is not depression. When I became ill 3.5 years ago, I was not even close to being depressed. If I had a quarter every time I went to see a new doctor/specialist that told me I was depressed and needed psychiatric care, I might be a rich woman by now.

Reply

Erik Johnson September 30, 2009 at 8:50 am

Good Morning America gets a bit closer to getting it right.

Reply

Michelle Roy September 30, 2009 at 10:47 pm

Hope I didn’t offend anyone with my comments about Dr. Donnica and her making a clear distinction that we that we are not a depressed lot.
I was really impressed at how much information she squeezed into six minutes.

Reply

Mike Dessin October 1, 2009 at 5:20 pm

It was good but not good enough. If I had 6 minutes…I would have described it much differently. Not just a translation of the CDC’S bogus definition, as was presented.

Sorry for going against the grain on this one, but unless someone goes against the grain, things won’t change.

Thanks Donnica, maybe next time having an actual ME/ CFS patient on there describing their illness, might pack a little more umph.

In kind spirits

Mike

Reply

Susan October 6, 2009 at 12:24 pm

Just weighing in on GMA clip on ME/CFS……..for the time limit, I strongly agree that Dr. Donnica did give an accurate view, generally speaking. As we who live with its limitations, daily, of course less than 10 minutes does not give an overall vision of its complexities and seriousness. Having worked in medicine for two decades prior to my 12 yrs, plus state, I know that hearing any precise info from a ‘doctor’ catches one’s attention and ability to believe what is said. It brings to light, again, how many are living with its challenges and how much effort remains in research and treatments, Sue C.

Reply

Keith... October 6, 2009 at 5:49 pm

Susan
I just don’tbelieve thwt anyone with severe bedbound CFS. I mean the CFS wear you can’t lift you head of a pillow and must be shut up all day in a nonstimulating dark room would agree that what Dpctor Donnica explained was representative of there illness. Just like Autism is a spectrum disorder so is CFS. You would not go on tv and just talk about aspergers syndrome or PDD-NOS if the topic at habd was Autism. You would need to talk about the whole range of illness from classic low functioning autism to Aspergers. The same should have been done in her descriptiion. She chose to talk about only one end of the spectrum of CFS. This does a disservise tothose locked away in there rooms unable to even get out of bed. These people need advocates the most and she did not mention them at all.

Reply

Mike Dessin October 8, 2009 at 5:09 pm

Keith Amen!!

Anyone in the national spotlight gonna step up and say what you have just said? I’m fed up with all the excuses.

Folks are suffering immensly and dying in many cases of co-morbid conditions such as cancer, heart failure, pancreatitis.e.t.c. Not too mention a suicide rate double that of MS.

Simply relaying a CDC definition of sore throats and fatigue not relieved by rest, does absolutely no justice for ME/CFS patients.

Great comments Keith!

Mike

Reply

Keith October 11, 2009 at 7:40 am

Thanks Mike. I guess we’ve both experienced CFS at it’s worst. It is much more than the life inconvenience that Doctor Donnica explained it to be. She should have explained it at it’s worst and worked herself up from there. What she explained just didn’t get across how bad it can be. Hope your doing well. I have recovered to about 50-80% percent given on the day you ask me. Thanks for sharing your story!

Reply

Mike Dessin October 11, 2009 at 7:21 pm

Keith, I am soo happy to hear of recoveries from this horrible illness. Please keep up your progress!

I think the biggest barrier to mainstream acceptance and understanding of this condition, mainly has to do with the definition.

Does not matter if the headlines come out with huge discoveries as there have been lately. These breakthroughs become old news quickly.

Reason being, these articles describe the illness in such a gentle manner, fatigue, aching limbs, some memory loss for the most part. Which makes these discoveries of very little interest to the mainstream medical community, thus very little if any funding toward ME.

If the definition of ME/CFS changes in the CDC description, a Neuro-Immune disorder with extreme Immune dysfunction, similar to AIDS. With Cognitive difficulties so incapacitating, that many sever ME sufferers cannot read, write or even think. Then progress is more apt to take place.

That is the reality, and that is what needs to be said with any mention of discoveries!

This will get the medical community’s attention, this will get our friends and families attention.

Then maybe the neglect and abuse will end.

Take Care
Mike

Mike

Reply

Leave a Comment

Previous post:

Next post: