Dr. Lipkin on Dr. Oz show Thurs 5 March about ME/CFS

[oceiv]

Fair enough, @Aurator People's opinions are going to vary about any given medical treatment. As I said, this approach helped a friend of mine. The page you referenced says to me that this approach, much like integrative and holistic medicine, looks at how all systems work together to maintain chronic illnesses. As opposed to modern medicine, which focuses on one system at a time. I don't have an opinion on it and won't until I learn more. My post to you was to let you know that so-called "functional disorders" are not related to functional medicine.

I'm interested in what Lipkin has to say tomorrow and hope there is some useful info and a plug for his microbiome study.

 

[adreno]

Functional medicine has nothing to do with the psych definition of functional disorders.

An example of functional medicine in this context would be doing stool testing and trying to amend gut dysbiosis.

If Lipkin could get funded, this might actually be allopathic medicine by now.

 

[A.B.]

Functional medicine has nothing to do with the psych definition of functional disorders.

That would explain the discrepancy.

 

[Sean]

This appearance by Lipkin just makes me wish that Sanjay Gupta of CNN would get ahold of him. Gupta did terrific work on medical marijuana, even to the point of apologizing to patients for having bought into government lies about the issue.

Credit to Gupta for that.

 

[Sean]

I particularly like their attempt to make CBT a treatment immune to criticism by demanding that patients' expectations of it be "realistic":
"The patient’s expectations from therapy:
Unrealistic expectations can lead to treatment failure. Many patients expect to be cured. In the absence of cures if the patient’s expectations are realistic there is less danger that the results will be disappointing."

 

[Gamboa]

Functional medicine has nothing to do with the psych definition of functional disorders.

An example of functional medicine in this context would be doing stool testing and trying to amend gut dysbiosis.

If Lipkin could get funded, this might actually be allopathic medicine by now.

Exactly. Dr Lipkin's gut study is more along the lines of functional medicine which is not the same thing as functional disorder as previously noted.

Anyway.....this discussion is getting a bit side tracked. The great thing, I think, is that Dr. Oz is watched by millions of people in the US and Canada and this has the potential to make big strides in how people see our disease.

I just watched the 3 minute preview that is on the website and for the most part it is OK. There were some cringe worthy parts such as talking about this as it being a "new disease" as if it didn't exist before. Also calling it a disease that affects women. What about all the men?? The doctor talking with Dr. Oz, Dr. Jennifer Caudle , said the "D" in SEID stood for disorder. Am I wrong or does it not stand for disease? I know I keep seeing this mixed up, as well as the "E" being mixed up for exercise instead of exertion, so I could very well be confused.

They then went over the 5 diagnostic features ( or questions to ask yourself) to see if you have SEID.
1-profound, unexplained fatigue that has lasted at least 6 months
2-simple things like climbing a set of stairs exhausts you
3-you have unrefreshing sleep; Dr. Oz asked Dr. Caudle to explain this. She said that after 10 hours of sleep you feel as if you have had only 10 minutes of sleep
4-Brain fog, trouble thinking
5-worsening of symptoms with standing. Dr. Caudle explained that there is a lot of research to back this up.

I hope that in the show itself these things will be addressed by the other guests.

 

[Aurator]

Fair enough, @Aurator People's opinions are going to vary about any given medical treatment. As I said, this approach helped a friend of mine. The page you referenced says to me that this approach, much like integrative and holistic medicine, looks at how all systems work together to maintain chronic illnesses. As opposed to modern medicine, which focuses on one system at a time. I don't have an opinion on it and won't until I learn more.

I'm afraid that when I read things like this:
"Search for a dynamic balance among the internal and external body, mind, and spirit"
I'm simply unable to make the leap of faith necessary to make the "therapeutic partnership" work.

 

[acer2000]

We need VICE to do a show on CFS. They aren't the most mainstream, but they go deep on stuff and they aren't afraid to bring up uncomfortable angles. They just did a show on Cancer, so maybe they are looking more into health.

Frontline would be cool too, also not the most mainstream, but very good at what they do.

Say what you will about Dr. Oz, but he does have a large audience. So maybe it is smart that Dr. Lipkin is going on the show.. it will reach a lot of people. It all depends on what he says (or they let him say) and who gets final cut. Could be great, could be not so great.

From what I have seen, Dr Lipkin is a super smart guy who is very savvy. He doesn't suffer fools or mince words.

 

[Iquitos]

I think Dr. Lipkin needs an advisor on politics in science. He seems naïve to me. I lost respect for him politically when he said the head honchos at NIH are his friends and that they are on board re: ME/CFS. That is not political reality and I don't see how Lipkin could not be aware of the 30+ years of negative, politically motivated "throw them under the bus" behaviors coming out of NIH, CDC, etc. How he rationalized this is beyond my understanding. Yeah, I know he has to keep the friendships he's got but he could keep his mouth shut about them instead of stating what is so obviously not true.

This is why I donate to OMI, Open Medicine Institute and not to Lipkin.

 

[adreno]

This doesn't sound good :

Do you feel tired even after a full night's sleep?

Are you forgetful or become exhausted after certain activities?

In the past, these symptoms have been contributed to Chronic Fatigue Syndrome.

However, some doctors refuse to recognize CFS, attributing tiredness to depression, anxiety, or even laziness.

In the hopes of helping those with chronic fatigue, the Institute of Medicine has proposed a change in the name and process of diagnosing the issue.

Dr. Jennifer Caudle, an assistant professor at Rowan University and board certified family physician, will make her sixth appearance on The Dr. Oz Show Thursday to discuss the "makeover" that has been proposed for what has been known as Chronic Fatigue Syndrome.

"Chronic Fatigue Syndrome has been a condition that has been difficult for patients to be diagnosed with properly," Caudle said. "It can be frustrating."

Many doctors don't feel CFS is a true condition.

"There has actually been a lot of controversy because some doctors don't think it's a real condition," she said. "They say it's all in the patient's head, they need more sleep, or say it's caused by anxiety or depression."

Caudle said the Institute has proposed the condition be called Systemic Exertion Intolerance Disease - a name that will, hopefully, more accurately capture the central characteristics of the illness.

Caudle said the new name will be accompanied with new criteria to determine what is actually happening with the patient.

"Treatment is a lot harder," Caudle said. "There is no one medication that can help, so we often talk about helping the whole patient - body, mind and soul."

Caudle said doctors will figure ways to deal with a patient's individual symptoms in order to help the overall condition.

"We will talk about ways to reduce stress, get better sleep, and deal with anxiety," she said. "It's stressful to not feel well."

Caudle said she feels this change in criteria for chronic fatigue could be important for those affected."

"It brings up important conversations," she said. "There are a lot of questions, but we're getting closer to the answers, and most importantly, there is hope."

Tune in Thursday at 1 p.m. on Fox television network to see Caudle discuss Systemic Exertion Intolerance Disease.

For more information about Caudle, visitwww.jennifercaudle.com.

http://www.nj.com/indulge/index.ssf/2015/03/rowan_university_doctor_to_appear_on_dr_oz_show.html

 

[Bob]

I think Dr. Lipkin needs an advisor on politics in science. He seems naïve to me. I lost respect for him politically when he said the head honchos at NIH are his friends and that they are on board re: ME/CFS. That is not political reality and I don't see how Lipkin could not be aware of the 30+ years of negative, politically motivated "throw them under the bus" behaviors coming out of NIH, CDC, etc. How he rationalized this is beyond my understanding. Yeah, I know he has to keep the friendships he's got but he could keep his mouth shut about them instead of stating what is so obviously not true.

This is why I donate to OMI, Open Medicine Institute and not to Lipkin.

I respect your views, but I don't think we can expect our researchers always to be the perfect politicians. If they carry out decent and honest research, with the right motivation, I don't think we can reasonably expect much more from them. It's likely that Lipkin will not always say the exact things that we want to hear. He works within the establishment and, as you say, it can be difficult to slag off colleagues, but he's in a good position to change the establishment from within. And I think we need that. If he can bend the ear of the top bureaucrats, then that can only work in our favour. Also, I think he may well be on a steep learning curve; He's relatively new to the field of ME/CFS, and from what he's said, the double-refusal of his grant came as a shock to him. I think he hadn't experienced that sort of treatment before, and he hadn't expected it: He'd expected that a good research proposal would attract funds, or at least that he would be given a sensible & legitimate reason why the funds were declined. He was visibly very annoyed by it. We can't expect him to be aware of the politics of ME for the past 40 years, but I think he may become acutely aware of it, the longer that he's involved in the field. So I think we should give him a chance to become more aware of the community. He's been interacting with the community almost on a continuous basis over the past year, since the crowdfund started, so hopefully he's getting to know us and our situation better all the time.

It will be interesting to see if he says anything about funding on Dr Oz.

I love what the OMI do as well. I think we need all these people on our side.

 

[Gamboa]

I have viewed the preview clip yet again and am now not liking it at all. ( I'm a slow learner, I guess).

There are "Breaking News" signs up which is good since the release of the IOM report and Dr Lipkin's report is all new but that isn't what they are referring to. They are referring to the "new disease" SEID as if it didn't exist before and has suddenly been discovered. WTF???!! Behind Dr Oz is a large sign with these words: The New Disease Doctors Say is Causing Your Exhaustion . This makes me furious. This, as we all know, is NOT a new disease!. How dare they act like they, the IOM etal have discovered something new. I hope someone on the show explains a bit of the history behind ME/CFS and mentions that this is not new at all.

I'm getting more and more concerned, with this new IOM report and name, that everyone and their dog is now going to claim they have ME/CFS or should I say SEID. Everyone watching this show will say they are tired after climbing a set of stairs, have been tired for months, wake up feeling tired and so and so on.

 

[Sasha]

I agree with @Bob's points but frankly, I don't care what a researcher thinks as long as they come up with good research! I care infinitely more about getting well than I do about a researcher's grasp of ME/CFS politics and I donate to what I think is the most promising research. I give to both Dr Lipkin's research and to OMI, as well as to other projects that I think are good.

But if you're giving at all, you're ahead of the game, @Iquitos!

 

[Gamboa]

"Caudle said the Institute has proposed the condition be called Systemic Exertion Intolerance Disease - a name that will, hopefully, more accurately capture the central characteristics of the illness." This is on her website.

Then on the show she calls it Systemic Exertion Intolerance Disorder. She does this twice in a row and Dr. Oz and the producers and writers don't notice.

 

[Bob]

This, as we all know, is NOT a new disease!. How dare they act like they, the IOM etal have discovered something new. I hope someone on the show explains a bit of the history behind ME/CFS and mentions that this is not new at all.

Let's see how it pans out. If they are saying that the IOM have decided that SEID is a distinct disease, and not simply normal tiredness, then that's exactly what we want them to say. It's impossible to know from the clip whether it's going to be a quality discussion or not.

 

[Mij]

This will become a common error that will be made by many physicians. Disease will be replaced with Disorder, and Exertion with be replaced with Exercise.

 

[Iquitos]

I respect your views, but I don't think we can expect our researchers always to be the perfect politicians. If they carry out decent and honest research, with the right motivation, I don't think we can reasonably expect much more from them. It's likely that Lipkin will not always say the exact things that we want to hear. He works within the establishment and, as you say, it can be difficult to slag off colleagues, but he's in a good position to change the establishment from within. And I think we need that. If he can bend the ear of the top bureaucrats, then that can only work in our favour. Also, I think he may well be on a steep learning curve; He's relatively new to the field of ME/CFS, and from what he's said, the double-refusal of his grant came as an shock to him. I think he hadn't experienced that sort of treatment before, and he hadn't expected it: He'd expected that a good research proposal would attract funds, or at least he would be given a sensible reason to be declined the funds. He was visibly very annoyed by it. We can't expect him to be aware of the politics of ME for the past 40 years, but I think he may become acutely aware of it, the longer that he's involved in the field. So I think we should give him a chance to become more aware of the community. He's been interacting with the community almost on a continuous basis over the past year, since the crowdfund started, so hopefully he's getting to know us and our situation better all the time. It will be interesting to see if he says anything about funding on Dr Oz.

I love what the OMI do as well. I think we need all these people on our side.

This is exactly why Lipkin needs political advice. Oz is all about show business. The last time he had his BS comments on MECFS I got emails from friends who know I have it, inviting me to view his green tea and other BS recommendations. The Oz show will cut and edit whatever Lipkin and the others have to say, not with the intention of helping patients, but with the intention of sensationalism -- Oz's stock in trade.

I don't doubt Lipkin's integrity. I doubt his ability to be discerning about where he spends his reputation. We may never know exactly what he said, due to the editing of the TV show's producers. What's he going to do if they totally distort his intended message? IMO it would be better for him to spend his reputation on sources that have some integrity of their own.

And if he could have bent the ear of top bureaucrats at the NIH, those ears would have been already bent. His shock at how he was treated in the funding process is just another indication of how politically naïve he is. Others have been experiencing this for decades and have spoken out about it. Check out the youtube video of Dr. Ken Freidman testifying to not only research proposals turned down but the actual harassment and black balling of researchers.

 

[acer2000]

@Iquitos you make some very good points. I also tend not to like Dr. Oz's show. I find it to be too showy and light on science. He has a wide audience and if it doesn't go well or if its focused on the wrong things it could be just as bad as it could be good.

Frankly, I hope they don't spend the whole segment talking about a name change because I'm not particularly fond of the name. The actual info in the IOM report and the Columbia research is worthwhile though. I guess we'll have to see.

 

[Mij]

So I just watched the show, it was less than 8 minutes. Dr.Caudle is clueless- she really needs to shut it. Dr.Lipkin talked about the infectious aspect and "biomarkers". The women guest with CFS says everyone thinks she's crazy. So basically, if I didn't know anything about this illness I would come away with- it's a women's disorder, possibly with an underlying infectious cause. Oh, and dont' stand too long or you will feel worse. The following segment was about mood and anxiety disorders.

 

[meadowlark]

I just saw it in Canada. Here are my notes:

Dr. Oz introduces the topic by saying that for years doctors have been skeptical of patients who thought they had CFS, and some even doubted it existed. But breaking news shows that millions of women have been right. (What, no men?) Now science is redefining the disease.

He brings on Dr. Laudie, who says that she was one of the doctors who doubted that CFS existed but now she is a believer. She says the new name for it is Systemic Exertional Intolerance DISORDER. (!!!!!!) It's not in my notes but I think she mentioned the IOM here. She says that the criteria is: (1) profound fatigue for six months or longer--in other words, you are absolutely floored and exhausted. Daily activities take much more energy than they used to, and simple tasks like climbing the stairs exhaust you. (2) Unrefreshing sleep. Imagine sleeping for ten hours and waking up only to feel that you've slept for only ten minutes. (3) You're having a hard time focusing, or have brain fog. (4) Standing up for a short time makes you feel even more tired, and your symptoms worsen.

At this point Dr. Oz said that women's problems are ignored too much, so this should give us hope, not only about CFS but other diseases we haven't figured out yet. (Horrible that he's defining this as a women's illness.) He goes on to say that people used to be petrified of polio. Dr. Laudie, tell us what someone should do if they have this illness.

Dr. Laudie: Being hopeful is always good! You have to alleviate the stress and anxiety that comes with this condition. Pace yourself. Create a "not-to-do" list. She says that doctors who want to reach a diagnosis should look for four out of five of the symptoms (I may have taken bad notes, but I think she only mentioned four in the first place.)

Dr. Oz and Laudie sit down with a CFS patient named Rose, and Dr. Lipkin. Dr. Oz asks the patient what her doctors had told her over the past few years. Rose says she was told she was crazy. She took anti-anxiety medications. Doctors told her to get more sleep and go to the gym. I went to a general doctor, to a chiropractor, to a rheumatoid arthritis specialist, and had blood work done. There were no results

Dr. Oz asks Rose what it means to her that this can finally be diagnosed. Rose says she feels validated. Even her family didn't believe her, and they're sitting in the audience right now.

Oz advises families not to disbelieve family members.

He finally asks Lipkin about his work. Lipkin says "we" have been looking at this since 1997, and what Rose said is common. Most patients are not diagnosed for several years. There were no diagnostic tests, and all doctors could do was exclude other causes. So we've been developing biomarkers, a finding in the blood or elsewhere that is unequivocal. He refers to the illness as CFS, myalgic encephalomyelitis or "the new acronym we have now." Researchers also have to get insights into why this illness occurs. It is likely to be infectious, something must trigger abnormalities in the immune system. He says that, as in the flu, when you have chemicals called cykotines in your bloodstream you don't feel well. People with CFS feel this way all the time, so we have to find the trigger. We are looking in the blood, in the mouth or in the lower gastrointestinal tract for bacteria or viruses that might cause this, make people feel this way.

Rose pipes up that she feels "crappy." (Very loud and firm.)

Dr. Oz asks her how she feels about Lipkin's study. She says she feels "validated." He asks what she would do different if she were well. Rose says that she would play tennis, ski, and ride her bike. She hasn't been able to do these things for ten years.

Dr. Oz thanks everyone and tells people to go to Facebook to tell us your remedies for getting tired. There was some kind of graphic of a comment (possibly on FB) saying "when I get tired I get up and walk and my energy returns!"

There is then a plug for the show the next day: What is angels exist? How does science explain divine intervention?
- - - - -
The over-all feel was pure Dr. Oz. Quacky and too general to be of any help. Lipkin was good but the entire segment was under ten minutes long. He spoke in one persuasive paragraph but had to make very sweeping generalizations. Obviously, it wasn't a medical setting.

I'd love to see him with Dr. Sanjay Gupta, or Charlie Rose.