Jennifer Brea interviewed on Dr Oz Show December 18, 2017

I agree with the comments here.

It started with your regular sensational Dr.Oz intro, "too often this treatable condition can make you feel lost", constantly mentioning, "all in your head" and ask yourself these "four questions" to determine if you might have CFS.

I wish Jen would not mention her experience with doctors telling her it was 'all in the head".

Overall for the amount of time given I thought it was decent. I also appreciated Dr. Oz's battery/energy demonstration and mentioning that exercise has the opposite effect on us.

Dr.Azar gave a short explanation of PEM and OI.

 

I am not sure @Mij why you wish that? Can you please explain?
This is the reality of so many patients, a large part of our experiences in health care has been that doctors do not believe us, and doctors do not understand this disease. I think it is important that it is told.

Similarily patients with stomach ulcers were told it was due to a type A personality and were rushed into therapy just 3 decades ago.

 

@Milo

I understand what you are saying. My point was that I wish she would change her wording, so rather than saying "all in your head", she could explain that she was dismissed as having a physical illness.

 

It's possible that's true, but it could also have been a result of natural fluctuations, Jen learning to better manage her condition, etc. It's hard to be sure of anything when there are likely to be so many different sub-groups within 'CFS', but I'm wary of making such a strong claim about antiviral medications that don't have any good evidence of efficacy. I also think it can make it more difficult for patients to be critical of dodgy doctors promoting unfounded supposed treatments if we did it ourselves.

I'm just responding to that little excerpt though, and think Jen is often really good when speaking on other issues. It's just my annoying instinct to only comment on the bits I'm less keen on!

 

Jen said “I have been really lucky”. She didn’t say that off-label antivirals were scientifically proven to cure everyone with ME. And from Unrest, we can see how she was once very ill. And now we can see her in different interviews on tv, looking much improved. She usually answers the questions she is asked during the interview.

 

I understand that, and I might be missing context that provided even more caution, but it's just hard for anyone to know why it is that caused their health to fluctuate in a certain way. Whatever the cause, I'm really pleased Jen is feeling a bit better, but this may not be a result of any anti-virals she took as she improved (or it could be). Until there is good evidence, I think it's best to be cautious about claims in the media about any treatments which could have been useful, but may not have been.

Also, I don't meant this to sound like I'm being really critical of Jen - it's odd having her as a sort of media spokesperson, as well as just being an individual talking about her personal experiences. If someone has improved when doing something or other, it's natural to want to talk about that. It's just an area where I think that I'd prefer a slightly different presentation for patient advocacy reasons.

 

I see Jen primarily as a spokesperson for ME awareness. I think the treatments Jen takes should not be up for public scrutiny; these are decisions that were made between her and her doctor. We don’t own Jen, or own the rights to how she answers questions during a television interview.

 

All the same to me.
-Doctor thought it was all in my head,
-dr thought i was depressed,
-dr thought i was making my symptoms up
-dr dismissed my symptoms

This all leads to the same thought or behavior, making their opinion that there is nothing serious or important.

 

I feel like I must have been unclear about something if I gave the impression I wanted to control Jen's decisions about possible treatments or what she says... I certainly don't want to own Jen! [edit: or I may be wrongly assuming your post reflects a belief that I did want to control Jen? - it can be hard to be clear when writing short posts about complicated topics].

When discussing media coverage around Unrest I think it's also fair to talk about what parts might be potentially misleading or less useful for advocacy efforts. Concerns are often raised about seemingly unduly positive anecdotes in the media.

I didn't respond to this earlier:

I don't know much about Jen's health, but I got the impression from Unrest that it was often quite variable (although that could have been misleading), and that she is still seriously ill. Some people do just seem to naturally improve. Some people seem to just naturally recover. I can see that being questioned about ones health improvement in the mass media, when so much is uncertain, would be difficult to deal with and referring to off-label anti-virals could be a good simplified answer, but personally I'd prefer it if she did a bit more to emphasise the uncertainty about why some people seem to improve. That's just my view though!

 

I think this likely shows just what an impressive advocate Jen Brea really is. Prior to the interview she likely talked some of the issues through, and a face to face talk with her is probably vastly more convincing to doubters than pretty much anything else. If she can help convince the doubting media presenters, who do so much convincing of their own, then that is truly brilliant.

 

Unfortunately it's not complete.

I was waiting for 5 pm to come to watch it yesterday. As 5 pm approached I forgot! Thankfully remembered at 5:08.

Dr. Oz did an demonstration that I wanted to see again and possible have others watch this. Also, there was more conversation with him and Jen. I really was hoping to share parts of this (or all of it) with people who don't get it or to introduce people to some of what this is for me and millions of others. I hope the full episode is posted eventually.

 

It's also important to remember that the editors have had their way with whatever Jen was saying.
She has zero control over that.

The show needs to fit in the time slot and fulfill certain formulaic parameters, and I had the sense Jen mentioned a lot more about how/why she'd been lucky, and it was cut. IIRC (and I quite possibly do not!) Oz or someone actually talked over her at that point and interjected about the antivirals. If anyone watches again look for cuts in that segments and report back--I'm pretty sure they're there.

ETA: I didn't see the whole episode, just the two clips, so I might be talking out my arse.

 

Maybe you could help me with the logistics? How can I best give credit to your post, because it made me stop and think, but respond in such a way as to relay my thoughts (but not to aimed them at you)?

Okay, let me try again; hopefully this is better? I am a better verbal communicator, than a writer.

(I would quote your posts here, to give you credit)

Thanks @Esther12. You bring up some interesting points. I am bewildered that some PwME expect so much from a woman who identifies herself as moderate in the spectrum of ME. I don’t know that much about editing, on a televising show, but feel that a guest being interviewed has little control. Furthermore, I feel that we all have our own story to tell, my story is very different then Jen’s, as I assume yours is too. I felt that Jen, during the interview, answered the questions openly and honesty, and did so to the best of her ability. I would have a hard time, as I assume most of us would, fufilling the demanding obligations of promoting Unrest. There are very few people who are impacting the awareness of ME, in the way that Jen has done. Most PwME do very little to help spread ME awareness. There is a severe shortage of people who are helping out. If you were on the Dr Oz show, promoting your movie, and spreading ME awareness, I would respect your personal narrative. Personal narratives may include such topics as a treatment plan with ones doctor, strain on a relationship/marriage, loss of education, loss of employment, etc. I don’t understand what expectations you had regarding Jen’s appearance on the Dr Oz show? I sometimes get the impression from reading others criticism of Jen, that she is expected or obligated to do and say things that please others? I feel that it’s Jen’s movie which is a story about her life. My comments about Jen, have been overwhelming favorable. In the area where Jen had more control, in making Unrest, I wanted her to cover the topic about suffering alone with ME. But a few weeks later, after I posted my comment, I came to realize that Unrest was great, just the way it was.

I don’t want to come across as critical of you. I often feel that PwME could be making better use of their time and energy by taking action to make positive changes in research or advocacy. It’s easy to criticize others who are trying to make a difference. I am guilty of this too, and seek ways to be less critical and more accountable.

 

I'm always happy to be criticised! I find it hard to improve without criticism tbh. Also, I think that one reason why we've made more progress with things like PACE over the last few years is that patients have become more critical of one another's advocacy efforts. We're up against so much, and it's so easy to accidentally do more harm than good, that having other people who are on your side thinking critically about what you're doing can be really useful.

I recognise that it can be very hard to get this right when we're all sick and struggling to explain often complicated issues clearly. Well worth trying to give people the benefit of the doubt when uncertain on what they mean.

re respecting personal narrative: I'm not sure that I do. I think that I always want to have other people trying to pick apart the narratives I create for myself, as it's so easy to develop a simplified and misleading view of ones own life. The scepticism of others can be really helpful for reminding oneself of how little one really knows.

I don't know if you thought any of my posts were implying that I thought Jen has any responsibility to please me, but just to be clear, I don't. I just wanted to mention my concern about asserting a certain treatment helped when we're lacking good evidence that it did. I did also say that "I'm just responding to that little excerpt though, and think Jen is often really good when speaking on other issues".

PS: I do also agree that some people seem to think that other Jen should do more to reflect their personal experience, even though when so many of us have such different experiences it's inevitable that many people's will be missed out.

 

So I just went on his site again to see if the full one plays. No, still only two 4 minutes clips.

Anyways I did a search on his site with the words "full episodes" and had it sort by most recent. It looks like those of us who missed the whole episode or want to share it may have to wait awhile. The most recent full episode you can watch was date November 11th!

 

Bummer! That's what I found too. I could have watched it live, but I can barely tolerate Dr. Oz and wanted to be able to pause and holler at my TV when necessary. So now I've missed out until who knows when.

 

You can catch Monday's full episode on Dr. Oz's website:

http://www.doctoroz.com/episode/cau...when-extreme-exhaustion-takes-over-your-brain

 

Thanks so much, @TigerLilea! It looks as if there should be 5 segments to the Unrest discussion, but one of them plays the Ann Burrell segment. I wasn't able to get the full episode to play. They do have more up than they did yesterday, but it still seems incomplete to me. One segment that played yesterday doesn't play today. Not sure if there's an error in their upload or what.