-
Welcome to Phoenix Rising!
Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
To become a member, simply click the Register button at the top right.
Dr. Lipkin on Dr. Oz show Thurs 5 March about ME/CFS
- Thread starter waiting
- Start date
Nielk
Senior Member
- Messages
- 6,970
The IOM report/criteria does not recommend any tests nor any specialists. It is unknown at this time if insurance will cover any of this now in the US.
Last edited:
Gingergrrl
Senior Member
- Messages
- 16,171
I was wondering that too b/c I missed it. Is it on You Tube?
Wayne
Senior Member
- Messages
- 4,308
- Location
- Ashland, Oregon
Hi Ginger, here's a link: -
Dr. Oz - Chronic Fatigue Syndrome ME/CFS SEID
Regarding the segment... I thought Lipkin was great, and feel optimistic he will be a very effective advocate for us going forward. Perhaps politically speaking, I would hope in the future he will more accurately describe the severe debility and disability of those with ME/CFS.
I didn't think the patient came across particularly well, but I really felt for her. Being there seemed to be extremely stressful for her. Also, her family doesn't believe her -- how painful is that? -- I always take note of the eyes of someone who has CFS, as it's often a dead giveaway. She definitely had the eyes of someone with CFS (pain, stress, relentless trauma, emotional exhaustion, and much more)
adreno
PR activist
- Messages
- 4,841
Thanks, just watched it. It wasn't half bad, I think. Probably the best we could have hoped for on this kind of show. They really hammered in that this is a real disease, and that's good.
It wasn't good but I was expecting far worse. The female doctor actually talked about pacing and the NOT TO DO list. There was no suggestion people are suffering from false illness beliefs or need to start going to the gym. Oz talked about it being an infection and made a comparison with polio.
Yes, although the presentation was theatrical and they made a few gaffes, it was well intentioned.
Dr Lipkin ably performed an unenviable task, especially given the fact that he had the most to say but was given the least time in which to say it.
The patient wasn't the best choice for the cause, though I could see she was distressed and don't blame her in the least. What would have been nice would have been if they had interviewed a second patient via web-cam speaking from her (or his!) sick bed; it would have given a more complete picture of the way the illness can and does affect people.
Dr Lipkin ably performed an unenviable task, especially given the fact that he had the most to say but was given the least time in which to say it.
The patient wasn't the best choice for the cause, though I could see she was distressed and don't blame her in the least. What would have been nice would have been if they had interviewed a second patient via web-cam speaking from her (or his!) sick bed; it would have given a more complete picture of the way the illness can and does affect people.
Bob
Senior Member
- Messages
- 16,455
- Location
- England (south coast)
I thought the show was helpful, overall, remembering that it was aimed at the general public. I think it would be helpful for people who have ME/CFS but haven't been diagnosed. i.e. for general awareness raising. They didn't get everything right, but the general public don't absorb all the details from a show like that. The overall aim of the discussions matters most. As others have said, it was a brief but sincere discussion of a complex subject. The female doctor talked about pacing, and a not-to-do list, which is really helpful. No suggestions of laziness or that patients should exercise their way to recovery etc.
I don't have a problem with the patient saying that everyone was saying she was 'crazy' - she's telling it how it was for her - and she didn't come across as someone with psychosis, or a personality disorder. She came across as someone with a genuine but invisible illness for which she couldn't get recognition. And that's what we all have to deal with. She was saying that she was disbelieved, and that the new diagnostic criteria, and Dr Lipkin's study, have validated her experience. I thought that it was a helpful discussion. We don't all get called 'crazy', but more subtle language is usually used to indicate disbelief.
I thought Dr Lipkin was very forthright - and very helpful - He left absolutely no doubt that he believes that pathogens are involved in this illness. Whether that eventually proves to be correct or not, I think it's helpful for us to have one of the world's top scientist saying that he believes that pathogens have a central role to play in ME/CFS. It indicates that he believes it's a serious biomedical illness that deserves investigation by immunologists and other scientists.
I don't have a problem with the patient saying that everyone was saying she was 'crazy' - she's telling it how it was for her - and she didn't come across as someone with psychosis, or a personality disorder. She came across as someone with a genuine but invisible illness for which she couldn't get recognition. And that's what we all have to deal with. She was saying that she was disbelieved, and that the new diagnostic criteria, and Dr Lipkin's study, have validated her experience. I thought that it was a helpful discussion. We don't all get called 'crazy', but more subtle language is usually used to indicate disbelief.
I thought Dr Lipkin was very forthright - and very helpful - He left absolutely no doubt that he believes that pathogens are involved in this illness. Whether that eventually proves to be correct or not, I think it's helpful for us to have one of the world's top scientist saying that he believes that pathogens have a central role to play in ME/CFS. It indicates that he believes it's a serious biomedical illness that deserves investigation by immunologists and other scientists.
The more I think about this the more thrilled I am about the fact that a scientist of Dr.Lipkin's calibur and prestige has actually gone on an American popular TV show to claim that we, ME/CFS patients, have a real disease, and one that he thinks is of an infectious origin. How amazing is that? This is all very encouraging.
Nielk
Senior Member
- Messages
- 6,970
Many thanks to Mary Schweitzer for her transcripts of the Dr. Oz Show. So helpful for those of us who have a hard time listening. Permission to share.
Teaser:
A loud, sportscaster-type male voice:
You think it’s chronic fatigue syndrome, but it’s not.
OZ: There’s breaking news about this mysterious illness.
VOICE: The new disease really causing your exhaustion.
DR. JENNIFER CAUDLE: This condition is real. It is not fake, it is not made up
VOICE: The five questions every woman should ask herself.
VOICE: Plus, how to master your mood swings. Coming up next on Dr. Oz.
The Segment:
OZ: Chronic Fatigue Syndrome. Doctors have been skeptical. Some even doubted its existence, despite the exhaustion felt by millions of women. But now, there’s breaking news about this mysterious illness. For the first time, the government is saying millions of women have been right. This is a real physical illness and they are redefining the entire disease.
Dr. Jennifer Caudle is joining us. She says that for her patients, and the countless women who suffer, this is a game changer.
Welcome to the show.
DR JC: Thank you so much.
OZ: Why is this so significant? What’s so special about this breakthrough?
DR JC: This is so important. This condition is real. It is not fake. It is not made up. And now science is backing that up. The Institute of Medicine has now proposed a new name called Systemic Exertion Intolerance Disorder [my comment: yes, she said Disorder not Disease].
OZ: Rolls off the tongue, doesn’t it?
DR JC: (Giggles) Just a little bit … It’s called Systemic Exertion Intolerance Disorder [yes she said Disorder a second time].
This is really important because this better reflects what's actually happening. Patients complain of being fatigued, they can’t do the activities of their daily life. And this is good for doctors, too, because now we have criteria for diagnosing it.
And as you said, many doctors have been skeptical. I mean, I have to say, I have been skeptical myself in the past. This is really going to help patients, it is really going to help doctors, and this is a big deal.
OZ: Ok. So let’s help you by giving the symptoms that we think you will be feeling.
There are already two million people that already have been diagnosed; there are many more that we believe have been missed. This could be the real cause of many people’s exhaustion - could it be the cause of your exhaustion?
There are new criteria for the diagnosis. This is important
Five questions need to be answered. Everyone’s gonna answer these.
[On the Board:
1.1. Do you have profound unexplained fatigue (for 6 months)?
2.2. Do simple tasks like climbing a flight of stairs exhaust you?
3.3. Do you have unrefreshing sleep?
4.4. Do you have a hard time focusing or feel brain fog?
5.5. Does standing for a short period of time make you feel even more tired?]
OZ: The first question: Do you have a profound unexplained fatigue for six months or longer? If you don’t mind, explain for us the difference between profound fatigue and tiredness.
DR JC: Imagine being wiped out, absolutely floored wiped out, exhausted. And the activities that you do take much more energy than you know they should. That’s really what extreme fatigue is.
OZ: All right. Second, do simple things, easy things like climbing a flight of stairs, exhaust you? Third, do you have unrefreshing sleep? Let’s think about that. What is unrefreshing sleep? Please define the difference between being a little bit tired and unrefreshing sleep.
DR JC: Sure. I think this has happened to a lot of us at some point in our lives. But imagine sleeping for ten hours one night but waking up and feeling like you’ve only slept for ten minutes. That’s the feeling of unrefreshing sleep – you are just not rested.
OZ: Those are the three key questions. There’s two more: Do you often have a hard time focusing where you feel like you’ve got a little bit of brain fog going on? And does standing for a short period of time make you feel even more tired?
Dr. JC: Actually, researchers have started really putting a lot of the pieces together. They’ve looked at all the different studies and the symptoms that a lot of these patients have.
They’ve found that a lot of people have worsening symptoms when they stand up. And that’s really what we’re talking about here. They might be a little bit better when they lie down, but standing seems to make symptoms a little bit worse.
OZ: All right. So five criteria – how does a doctor like you figure out if it’s this new version, this purely defined version of chronic fatigue?
DR JC: I would say to a patient, if you answered yes to four of these five questions, I’m talking to you.
OZ: So I want you all to meet Rose, who has been diagnosed with this disease, along with Dr. Ian Lipkin, who is making huge inroads in finding the cause.
Thank you for being here Rose, and Dr Lipkin. So when you first went to a doctor with the symptoms that ultimately were diagnosed as this problem, what happened?
ROSE: Most of the time, nobody believed me. They thought I was crazy, they put me on lots of different medications, told me maybe I needed a little bit more sleep, maybe go to the gym, work out, but in the end, the biggest part was, I’m a woman, I felt like I was just crazy. Most of them said, you’re a woman and you just need anti-anxiety medicine. That’s pretty much what ended up happening.
OZ: Anti-anxiety medication? Did you see more than one doctor?
ROSE: I went everywhere. I went to my general doctor, I went to a chiropractor, I went to an arthritis specialist, a rheumatoid arthritis specialist, I’ve done blood work, I’ve tried everything.
OZ: What does this diagnosis mean for you? The fact that it’s there now.
ROSE: Validated – it’s real. No one believes me. I wake up in the morning, I feel horrible. I don’t get any sleep.Even my family doesn’t believe me and they‘re out there in the audience. Okay? Its real, and I thought I was crazy. I really thought I was crazy.
OZ: I want your family to believe you, but I want all the other families who are disbelieving as well to be able to trust their doctors.
Dr. Lipkin, you’re made huge amount of advances in this area. What have you discovered?
LIPKIN: Well, we’ve been looking at this disorder since 1997, and what Rose has said is common. Most people who have these sorts of problems are not diagnosed for several years. One of the reasons that this is the case is there are no good diagnostic tests. You look for all these criterion, you try to find some way of saying this is a common theme, and it’s likely, you exclude everything else, and therefore they must have this disorder.
So what we have been trying to do is to develop biomarkers. These are, this is a term that means some sort of a finding in blood, or someplace else, which isunequivocal. Any doctor can look at this and say this is a patient who has chronic fatigue syndrome/myalgicencephalomyelitis. This is a long new acronym that we now have.
So our work is really focused on trying to, first of all, come up with some sort of biomarkers that allow us to really diagnose somebody like you so that you don’t have to go through months and years of work ups.
And secondly, to get insights into why people become ill. We think this is likely to be an infectious disorder,something that triggers an abnormality in the immune system which then results in all these problems that you‘re describing.
ROSE: Great!
OZ: So what does that mean in terms of being able to diagnose and then treat this problem?
LIPKIN: As anyone here who has had flu or any other sort of infectious disease will tell you, when you have all these chemicals running around in your blood stream called cytokines, you don’t feel well. And what happens with people with Chronic Fatigue Syndrome is that they feel like they’re ill, they feel like they’re chronically ill. They have low energy, they have the unrefreshing sleep, all the other things. So what we are trying to do is to find out what might trigger this disorder, and the way to do that is to look in the blood, in the mouth, in the lower gastrointestinal tract, for bacteria and viruses that might in fact result in these abnormalities in the immune system which would then make you feel like you feel -
Rose: Crappy.
Lipkin: Crappy.
Oz: The reason that I feel so passionate about this topic – and it comes up here periodically - this is probably the best example that I can think of -
Women often are ignored with legitimate problems that we can’t put our finger on. This should give hope not just for chronic fatigue, but for many other ailments out there we haven’t figured out. And the fact is we are now able to get top virus hunters to be able to focus in on the fact this is probably an infection …
Imagine polio – go back fifty years – now when polio was out there and we are petrified from it, you’re playing life differently, like so many of you are, Rose. And now all of a sudden they can give you a shot and polio is no longer there, and we don’t think about it day in and day out.
This is emblematic of how we are advancing medicine, which is why this discussion today is so important.
Dr. Caudle, if someone is suffering from chronic fatigue,aside from feeling validated and not insane, and stopping their anti-anxiety medicine, what could they do if they are suffering?
DR JC: I think there’s a lot of different ways to approach the issue. Being hopeful is one of the best things we can do. But … I … Every doctor is very different.
I like to approach and really deal with the stress and anxiety that comes along with this condition. It can be very stressful and very anxiety provoking. One thing I think is really important is to pace yourself. And that’s a really big thing. In fact, I have a prescription for everyone out there who think they who might be dealing with this.
It’s called the “NOT-TO-DO” list.
We have our to-do list but really this is a not-to-do list.
Display: Not-To-Do List
[Highlighted]:
Grocery shop
Change oil in car
Make dentist apt.
[Regular type]:
Order birthday cake
Finish work project
Pick up dry cleaning
Clean kitchen
Help kids with homework
Pay credit card bill
Write thank you cards
Take out garbage.
It’s really a prescription to slow things down, to take it down a notch, to back up and do things at your own pace. So instead of having a whole to-do list, you’ve got your not-to-do list, which has got your three top things that you really want to get done in one day, and really working on those things at your own pace, so that you can get them done, feel good about what you’re doing, and also manage the symptoms.
ROSE: Good advice.
[My comment: She said the 3 highlighted items (Grocery shop, change oil in car, make dentist apt.) should get done that day, and the patient can put the other 8 items that are not highlighted on the not-to-do list off to another day. So it is still a to-do list for the top three items.]
OZ: What would it mean for you if Dr. Lipkin and colleagues were able to really find a cure, a treatment?
ROSE: Oh, I would feel like finally I’m validated. It’s real! Nobody believes me. My family doesn’t believe me – they’re here. I almost didn’t believe myself. I thought maybe I’m crazy
OZ: And if you were treated and felt better, what would you do differently?
ROSE: Back to the tennis court. Skiing. I haven’t done anything in ten years. I can’t ride my bike any more.
OZ: Ten years?
ROSE: Ten years I have been struggling. … Just …[incoherent] everything. You’re stressed. Too much to do. Stop working. Rest. Doesn’t work.
OZ: Thank you. [On to next subject after commercial break.]
VOICE: How do you naturally and holistically combat fatigue?
Display of Facebook post: Michelle K.
“I take a walk! It sounds counterintuitive, but as soon as I feel drowsy, I get up and walk. It gets my muscles and mind pumping.”
VOICE: Share your remedies on Facebook.com/droz
Teaser:
A loud, sportscaster-type male voice:
You think it’s chronic fatigue syndrome, but it’s not.
OZ: There’s breaking news about this mysterious illness.
VOICE: The new disease really causing your exhaustion.
DR. JENNIFER CAUDLE: This condition is real. It is not fake, it is not made up
VOICE: The five questions every woman should ask herself.
VOICE: Plus, how to master your mood swings. Coming up next on Dr. Oz.
The Segment:
OZ: Chronic Fatigue Syndrome. Doctors have been skeptical. Some even doubted its existence, despite the exhaustion felt by millions of women. But now, there’s breaking news about this mysterious illness. For the first time, the government is saying millions of women have been right. This is a real physical illness and they are redefining the entire disease.
Dr. Jennifer Caudle is joining us. She says that for her patients, and the countless women who suffer, this is a game changer.
Welcome to the show.
DR JC: Thank you so much.
OZ: Why is this so significant? What’s so special about this breakthrough?
DR JC: This is so important. This condition is real. It is not fake. It is not made up. And now science is backing that up. The Institute of Medicine has now proposed a new name called Systemic Exertion Intolerance Disorder [my comment: yes, she said Disorder not Disease].
OZ: Rolls off the tongue, doesn’t it?
DR JC: (Giggles) Just a little bit … It’s called Systemic Exertion Intolerance Disorder [yes she said Disorder a second time].
This is really important because this better reflects what's actually happening. Patients complain of being fatigued, they can’t do the activities of their daily life. And this is good for doctors, too, because now we have criteria for diagnosing it.
And as you said, many doctors have been skeptical. I mean, I have to say, I have been skeptical myself in the past. This is really going to help patients, it is really going to help doctors, and this is a big deal.
OZ: Ok. So let’s help you by giving the symptoms that we think you will be feeling.
There are already two million people that already have been diagnosed; there are many more that we believe have been missed. This could be the real cause of many people’s exhaustion - could it be the cause of your exhaustion?
There are new criteria for the diagnosis. This is important
Five questions need to be answered. Everyone’s gonna answer these.
[On the Board:
1.1. Do you have profound unexplained fatigue (for 6 months)?
2.2. Do simple tasks like climbing a flight of stairs exhaust you?
3.3. Do you have unrefreshing sleep?
4.4. Do you have a hard time focusing or feel brain fog?
5.5. Does standing for a short period of time make you feel even more tired?]
OZ: The first question: Do you have a profound unexplained fatigue for six months or longer? If you don’t mind, explain for us the difference between profound fatigue and tiredness.
DR JC: Imagine being wiped out, absolutely floored wiped out, exhausted. And the activities that you do take much more energy than you know they should. That’s really what extreme fatigue is.
OZ: All right. Second, do simple things, easy things like climbing a flight of stairs, exhaust you? Third, do you have unrefreshing sleep? Let’s think about that. What is unrefreshing sleep? Please define the difference between being a little bit tired and unrefreshing sleep.
DR JC: Sure. I think this has happened to a lot of us at some point in our lives. But imagine sleeping for ten hours one night but waking up and feeling like you’ve only slept for ten minutes. That’s the feeling of unrefreshing sleep – you are just not rested.
OZ: Those are the three key questions. There’s two more: Do you often have a hard time focusing where you feel like you’ve got a little bit of brain fog going on? And does standing for a short period of time make you feel even more tired?
Dr. JC: Actually, researchers have started really putting a lot of the pieces together. They’ve looked at all the different studies and the symptoms that a lot of these patients have.
They’ve found that a lot of people have worsening symptoms when they stand up. And that’s really what we’re talking about here. They might be a little bit better when they lie down, but standing seems to make symptoms a little bit worse.
OZ: All right. So five criteria – how does a doctor like you figure out if it’s this new version, this purely defined version of chronic fatigue?
DR JC: I would say to a patient, if you answered yes to four of these five questions, I’m talking to you.
OZ: So I want you all to meet Rose, who has been diagnosed with this disease, along with Dr. Ian Lipkin, who is making huge inroads in finding the cause.
Thank you for being here Rose, and Dr Lipkin. So when you first went to a doctor with the symptoms that ultimately were diagnosed as this problem, what happened?
ROSE: Most of the time, nobody believed me. They thought I was crazy, they put me on lots of different medications, told me maybe I needed a little bit more sleep, maybe go to the gym, work out, but in the end, the biggest part was, I’m a woman, I felt like I was just crazy. Most of them said, you’re a woman and you just need anti-anxiety medicine. That’s pretty much what ended up happening.
OZ: Anti-anxiety medication? Did you see more than one doctor?
ROSE: I went everywhere. I went to my general doctor, I went to a chiropractor, I went to an arthritis specialist, a rheumatoid arthritis specialist, I’ve done blood work, I’ve tried everything.
OZ: What does this diagnosis mean for you? The fact that it’s there now.
ROSE: Validated – it’s real. No one believes me. I wake up in the morning, I feel horrible. I don’t get any sleep.Even my family doesn’t believe me and they‘re out there in the audience. Okay? Its real, and I thought I was crazy. I really thought I was crazy.
OZ: I want your family to believe you, but I want all the other families who are disbelieving as well to be able to trust their doctors.
Dr. Lipkin, you’re made huge amount of advances in this area. What have you discovered?
LIPKIN: Well, we’ve been looking at this disorder since 1997, and what Rose has said is common. Most people who have these sorts of problems are not diagnosed for several years. One of the reasons that this is the case is there are no good diagnostic tests. You look for all these criterion, you try to find some way of saying this is a common theme, and it’s likely, you exclude everything else, and therefore they must have this disorder.
So what we have been trying to do is to develop biomarkers. These are, this is a term that means some sort of a finding in blood, or someplace else, which isunequivocal. Any doctor can look at this and say this is a patient who has chronic fatigue syndrome/myalgicencephalomyelitis. This is a long new acronym that we now have.
So our work is really focused on trying to, first of all, come up with some sort of biomarkers that allow us to really diagnose somebody like you so that you don’t have to go through months and years of work ups.
And secondly, to get insights into why people become ill. We think this is likely to be an infectious disorder,something that triggers an abnormality in the immune system which then results in all these problems that you‘re describing.
ROSE: Great!
OZ: So what does that mean in terms of being able to diagnose and then treat this problem?
LIPKIN: As anyone here who has had flu or any other sort of infectious disease will tell you, when you have all these chemicals running around in your blood stream called cytokines, you don’t feel well. And what happens with people with Chronic Fatigue Syndrome is that they feel like they’re ill, they feel like they’re chronically ill. They have low energy, they have the unrefreshing sleep, all the other things. So what we are trying to do is to find out what might trigger this disorder, and the way to do that is to look in the blood, in the mouth, in the lower gastrointestinal tract, for bacteria and viruses that might in fact result in these abnormalities in the immune system which would then make you feel like you feel -
Rose: Crappy.
Lipkin: Crappy.
Oz: The reason that I feel so passionate about this topic – and it comes up here periodically - this is probably the best example that I can think of -
Women often are ignored with legitimate problems that we can’t put our finger on. This should give hope not just for chronic fatigue, but for many other ailments out there we haven’t figured out. And the fact is we are now able to get top virus hunters to be able to focus in on the fact this is probably an infection …
Imagine polio – go back fifty years – now when polio was out there and we are petrified from it, you’re playing life differently, like so many of you are, Rose. And now all of a sudden they can give you a shot and polio is no longer there, and we don’t think about it day in and day out.
This is emblematic of how we are advancing medicine, which is why this discussion today is so important.
Dr. Caudle, if someone is suffering from chronic fatigue,aside from feeling validated and not insane, and stopping their anti-anxiety medicine, what could they do if they are suffering?
DR JC: I think there’s a lot of different ways to approach the issue. Being hopeful is one of the best things we can do. But … I … Every doctor is very different.
I like to approach and really deal with the stress and anxiety that comes along with this condition. It can be very stressful and very anxiety provoking. One thing I think is really important is to pace yourself. And that’s a really big thing. In fact, I have a prescription for everyone out there who think they who might be dealing with this.
It’s called the “NOT-TO-DO” list.
We have our to-do list but really this is a not-to-do list.
Display: Not-To-Do List
[Highlighted]:
Grocery shop
Change oil in car
Make dentist apt.
[Regular type]:
Order birthday cake
Finish work project
Pick up dry cleaning
Clean kitchen
Help kids with homework
Pay credit card bill
Write thank you cards
Take out garbage.
It’s really a prescription to slow things down, to take it down a notch, to back up and do things at your own pace. So instead of having a whole to-do list, you’ve got your not-to-do list, which has got your three top things that you really want to get done in one day, and really working on those things at your own pace, so that you can get them done, feel good about what you’re doing, and also manage the symptoms.
ROSE: Good advice.
[My comment: She said the 3 highlighted items (Grocery shop, change oil in car, make dentist apt.) should get done that day, and the patient can put the other 8 items that are not highlighted on the not-to-do list off to another day. So it is still a to-do list for the top three items.]
OZ: What would it mean for you if Dr. Lipkin and colleagues were able to really find a cure, a treatment?
ROSE: Oh, I would feel like finally I’m validated. It’s real! Nobody believes me. My family doesn’t believe me – they’re here. I almost didn’t believe myself. I thought maybe I’m crazy
OZ: And if you were treated and felt better, what would you do differently?
ROSE: Back to the tennis court. Skiing. I haven’t done anything in ten years. I can’t ride my bike any more.
OZ: Ten years?
ROSE: Ten years I have been struggling. … Just …[incoherent] everything. You’re stressed. Too much to do. Stop working. Rest. Doesn’t work.
OZ: Thank you. [On to next subject after commercial break.]
VOICE: How do you naturally and holistically combat fatigue?
Display of Facebook post: Michelle K.
“I take a walk! It sounds counterintuitive, but as soon as I feel drowsy, I get up and walk. It gets my muscles and mind pumping.”
VOICE: Share your remedies on Facebook.com/droz
@Nielk Thanks for posting this.
EDIT. WARNING! RANT ALERT. RANT ALERT!
That's it? That's the whole thing?
What about feeling like you are running a fever of 106 degrees? Standing up and your legs are like jelly, heart slamming, breaking out into a cold sweat and feeling like you're going to faint and/or puke your guts while someone's sucking out your bone marrow?
How about an interview with someone who's at least housebound if not bedbound?The segment seems to be talking about tiredness or sleepiness not me/cfs/seids.
I know everyone's a critic and it's easy to say such and such in hindsight but IMHO, Lipkin was the only saving grace. But then what can we expect with a show of this calibar that features drive by length segments about subjects.
We need some serious PR time as many have suggested above. More of a news type of show like NPR? Credible science/medical shows?
A not to do list but really a to do list of three items*?
Walking?
No men?
Seriously?
Barb
* Unless the not to do but really a to do list consists of mini tasks such as open eyes, take pain meds then walk to the bathroom, followed by resting two hours.
ETA1 Deleted some of the rant.
ETA2 Breath in, breath out.
EDIT. WARNING! RANT ALERT. RANT ALERT!
That's it? That's the whole thing?
What about feeling like you are running a fever of 106 degrees? Standing up and your legs are like jelly, heart slamming, breaking out into a cold sweat and feeling like you're going to faint and/or puke your guts while someone's sucking out your bone marrow?
How about an interview with someone who's at least housebound if not bedbound?The segment seems to be talking about tiredness or sleepiness not me/cfs/seids.
I know everyone's a critic and it's easy to say such and such in hindsight but IMHO, Lipkin was the only saving grace. But then what can we expect with a show of this calibar that features drive by length segments about subjects.
We need some serious PR time as many have suggested above. More of a news type of show like NPR? Credible science/medical shows?
A not to do list but really a to do list of three items*?
Walking?
No men?
Seriously?
Barb
* Unless the not to do but really a to do list consists of mini tasks such as open eyes, take pain meds then walk to the bathroom, followed by resting two hours.
ETA1 Deleted some of the rant.
ETA2 Breath in, breath out.
Last edited:
alex3619
Senior Member
- Messages
- 13,810
- Location
- Logan, Queensland, Australia
I have had some limited feedback that some members of the general public started to get a glimmering of understanding from this segment. Its not perfect, but its not a negative thing that happened. Its just not as big a positive as we hope for.
alex3619
Senior Member
- Messages
- 13,810
- Location
- Logan, Queensland, Australia
If I could do even ONE of the things on the truncated todo list, it would be a miraculous day. I have spent the last umpteen years without dental care. I can't even drive a car, not well enough for that, so the oil is irrelevant. Grocery shopping ... most days I cannot make it to the local shops to buy a bottle of water. Too far, too hard. Now I might be able to do some of these things if I really push myself, but that would involve major exacerbation, a crash, and being able to do even less for at least some days if not longer.
alex3619
Senior Member
- Messages
- 13,810
- Location
- Logan, Queensland, Australia
Actually this is one of the issues I have received a little feedback on. Its not a women's disorder. Even categorizing it that way is a potential put down to women, and part of the discrimination. Its also discriminatory to men - huge numbers of guys have this disorder. Its a medical disorder that is more common in women, but is not restricted to any gender, race, age or social group.