NPR segment about CFS

Discussion in 'Fibromyalgia Main Forum' started by Marta608, Sep 4, 2011.

  1. Marta608

    Marta608 Member

    I was pleased to hear a segment on NPR this morning about CFS. It was the old song about positive thinking and graded exercise which could apply to any illness, but at least it was mentioned as a real illness. As those of us with CFS know, we must be careful with exercise. The did talk about pacing and the hazard of the tendency to push-crash. - Morning Edition.

    There's also a segment there which was done on 9/2 on Science Friday about how researchers are finding that probiotics help anxiety in mice. Research is on-going.

    Help is coming! Enjoy today.


  2. Mikie

    Mikie Moderator

    Almost any public exposure is good as long as it's not negative, like it's all in our minds or just middle-aged women with depression. We've all heard that. It has taken forever for us even to be recognized and validated. It may take a lot longer but I think when the dam breaks, things will move quickly. All it took for validation for FMS is a medication for FMS advertized on TV. If it's on TV, it must be real, right?

    PBS has a whole program on TV about probiotics and how important they are. The woman who does the program says we need to take a much larger dose of them and need a lot more strains than previously thought. I've been taking them for more than 20 yrs. and think I'd be much sicker if I hadn't known about them years ago.

    Love, Mikie
  3. SherylS

    SherylS Member

    There are so many different brands of probiotics out there. Which one are you taking? I know there are new ones all the time, many with much higher doses now.
  4. sascha

    sascha Member

    it was a low-key presentation, but it did convey some things--mainly that cfs is a bona fide entity. that information is still inconclusive as to cause and treatment. did bring up PACE trials with the CBT and the GET- but did indicate it wasn't THE ANSWER. anyway i'm very glad it was on. hope it's a sign of more and more happening with cfs.

    ** on another note- so true about not overdoing. i overdid and haven't come back from it. Dr. Montoya warned me before i went and did it, but i did it anyway. i am so scared now i have lost ground permanently. EVERYONE BE CAREFUL! Sascha
  5. Marta608

    Marta608 Member

    Yes, there are many kinds of probiotics on the market, but I've been told that we should have a refrigerated one. I buy one at my health food store - yikes! - and see it's past its use-by date.

    Sasha, you will come back. It will take some time, but you will. Keep the faith and rest, then pace, like she said on the segment this morning.

    I'm so glad someone else here heard the program. It lifted my spirits and I wanted to get copies for my family and friends. :)

  6. simonedb

    simonedb Member

    probiotics that have really helped me are s. boulaardi, mutaflor (from germany) and seagest.

    I am glad you guys feel ok about the program as I was concerned about it when I read about it on other forums, some people are upset about the emphasis on exercise instead of talking more about the real illness part ( when they do a show on cancer or diabetes is it about treating it with exercise, sigh) and a friend of mine on facebook posted that she wished she wouldnt have heard it today as it soured her day, she can't exercise very much,I am just not going to listen in case it is offensive to me, but anyway glad to hear it wasnt all bad.....
  7. 1937marie

    1937marie New Member

    What antiviral are you on? I have been on Acyclovir (spelling?) and now my insurance company has taken me off of all Antivirals. As if they know anything about this illness. The told me they had a infectious desease doctor on their panal and I'v asked for his name 3 times. No responce! All this fighting with them has done me in. They ignored Dr. Montoy's letter and are giving him the run around when he calls to find someone to talk to about the illness and the recovery- 70% cognative-still can not spell.
  8. Marta608

    Marta608 Member

    SimonedB, I can understand why people are frustrated with the show but, as always, I'm just happy CFS is being talked about at all. They have things with which to treat cancer and diabetes but nothing more than pacing, rest, CBT and gentle exercise for us. Yet.

    Every other day I do some stretches, yoga and use my Pilates bench. It takes me MAYBE ten minutes total, so gentle are they. But I'm totally convinced that doing these things faithfully has helped me be able to manage my life as much as I do. I've also noted that if I skip the exercises, I have even less energy. The one doctor was talking about walking the dog! Oh boy!

    I did my best to use a non-judgmental ear. Without a cure or medical treatment, the things they mentioned are really all we can do right now. The first doctor (walk the dog) was not as comforting as the second one who objected to the exercise theory and talked more about the need to pace. Regardless, it was information on a legitimate illness on a legitimate program.

    That's a good decision on your part not to listen. We need to take care of us.

  9. simonedb

    simonedb Member

    ironically I am one of the lucky ones with m.e. who can exercise some, I have been able to take decent walks most of the time the last 20 years+ i have had this, but it has to be at the right time of day and if in flare up have to skip some days. I used to be able to walk many miles but the last few years its gone down, the distance, and this year something scary is going on with my breathing that I am getting checked out, but i am still walking, in last couple weeks not as much but sometimes I can go more than a mile still. I also love yoga and gentle stretching. So I don't disagree that for those that can, safely pacing is good, but I feel bad for the people who really cannot and crash really easy. When I have tried to ride a bike or do aerobic stuff I crash.

    Yep, its better not to trigger my anger and hopelessness by listening to ill informed docs, that doesnt help my health! when one has tried as hard as they can for many years to pace and exercise (I still miss jogging and weight lifting and dancing....used to live for that stuff) its a slap in the face to have any doc imply maybe some psych counseling could increase the amount I do that, I have tried everything to do more, baby steps etc they can rest assured that if I could I would do more because its like keeping food from a starving man, I love love love running and the good mood that used to come from it.
  10. Marta608

    Marta608 Member

    ...I've figured out what all the insistence about counseling is for. It came to me, not through counseling, but one of those AHA! moments we have.

    The only way to live comfortably with CFS/FM/ME...whatever, is acceptance. I quickly assure you this is not instead of hoping/praying for a cure or better days, but, for me, to STOP comparing what I can do with what others my age can do - or older. It's like any budget. We must live within our financial means and we MUST live within our physical means. Not as we were, but as we are.

    When I take it day by day, accepting that I may never be as I was (OH, that's hard!), I do better. I still hope, I still try (gently), but I spend more time sitting, watching clouds, smelling flowers these days. I ask myself "If I do that today, can I do that tomorrow?"

    My house isn't nearly as clean as it used to be. My cooking skills have been exchanged for Right Eating, for a Candida diet right now. My friends now are mostly online. My family is somewhat tolerant, sometimes. It's hard, especially when you live alone. Almost anything that gets done must be done by us. That takes almost all I have, and more than some have right now.

    So I accept. Someday I hope to be more able but right now I am what I am. And that's not all bad.

  11. simonedb

    simonedb Member

    I like how you think and your apparent serenity
    I agree, I have been considering counseling again for that reason, it doesnt help me to be angry about injustices
    I wonder how people like Martin Luther King or Joan of Arc etc people that faced so much adversity kept their sanity
    have a good day
  12. Marta608

    Marta608 Member

    Serenity. Hmmm, I like the sound of that. It's far better than depression. :)

  13. Marta608

    Marta608 Member

    I suspect I could take more.

  14. sascha

    sascha Member

    what's 1937? my birthdate year is 1942.

    i am on acyclovir also, 800 mg 3X/day. i started with valcyte for 3 months i think it was. maybe 5 mos- i forget. then was on valtrex, but it was too expensive so Dr. Montoya switched me to acyclovir. i guess i'll be on that forever.

    wow-ins. co is jerking you around about it? that's not right at all. even when doctors confirm you should be on it???!!! not right. hope this comes through for you. i did get help from anti-viral medications. cognitive function improved, for a time i did bounce back better after rest---then---i way overdid and am still trying to dig myself out. i have 2 1/2 yr old twin grandchildren and enjoy them mightily- take care of them within limits as i can, but i went for too long a stretch and got powerfully ill flat out on the couch for two weeks. i know and should have known how careful i need to be at all times. i am very vulnerable to that after-crash. and you can't guide by how you feel in the moment. it can take a day or more afterwards to get the slam-down. then it takes quite a while to come back and there's always the fear that i might not come back.

    phew- difficult road we're on. so good to be able to communicate on here. we must take care of us!! good luck, all- best, sascha
  15. Mikie

    Mikie Moderator

    They have excellent probiotics. I especially like the Jarro-Dophilus. You can take more than one if you want more strains of bacteria.

    Love, Mikie
  16. quanked

    quanked Member

    I take Lee Swanon's Ultimate Probiotic Formula--66 billion organisms per veggie cap. I take 2 in the a.m. althought I have taken 3.

    This is what is on the bottle:

    Bifidobacterium lactis BI-04 20 billion viable organisms *

    Lactobacillus acidophilus La-14 20 billion viable organisms *

    Bifidobacterium longum Bl-05 6 billion viable organisms *

    Bifidobacterium bifidum Bb-02 5 billion viable organisms *

    Lactobacillus casei Lc-11 5 billion viable organisms *

    Lactobacillus plantarum Lp-115 5 billion viable organisms *

    Kyo-Dophilus® (blend of L. gasseri, B. bifidum and B. longum)
    1 billion viable organisms *

    Lactobacillus salivarius La-23 1 billion viable organisms *

    Lactobacillus rhamnosus Lr-32 1 billion viable organisms *

    Lactobacillus bulgaricus Lb-64 1 billion viable organisms *

    Lactospore® Lactobacillus sporogenes 1 billion viable organisms *

    NutraFlora® scFOS® (short-chain fructooligosaccharides) (providing minimum 95% total fructooligosaccharides) 100 mg *

    I do not refrigerate although maybe I should. I do wonder if there is something better or something I should add.

  17. Marta608

    Marta608 Member

    Have they helped?

  18. joanierav

    joanierav Member

    hi, the thing about probiotics and refrigeration is this: you must buy them already refrigerated, in the refrigerated section, and they are shipped this way. they are usually twice the price of the other ones. most gastros recommend the refrigerated ones.

    a few come to mind. healthy trinity, vsl #3. im sure there are more, but those are the ones ive used, and they are good.

    if you cannot afford the refrigerated ones (and few of us can) then by all means buy the others, at least take something. i liked colon health by phillips also. and that is not refrigerated and much cheaper.

    love, joanie
  19. Marta608

    Marta608 Member

    Joanie, thanks for making that clear. I do buy the refrigerated ones and keep them in the refrig. That's why I don't buy them from ProHealth.

    I've recently read that "we" are taking far too many probiotics and not giving our own gut a chance. What do you think? Darned if we do and darned if we don't?

  20. Marta608

    Marta608 Member

    The program was on NPR and can probably still be viewed by going to and the date. They have videos there regarding many of their programs. I suggest using the energy in a different way, though, because it will only make you want to smack him when he gets to walking the dog. I was more fascinated with the one on anxiety and probiotics.

    I'm like you are, in that the tasks of daily living take most of what I have. I can't imagine being a parent on top of that! Well, I am a parent but of (supposedly) grown kids.

    Don't you think that we get hung up over the word "exercise"? The very thought exhausts us! But by the time we get through shopping and putting away groceries, that's exercise, right there. Maybe we stretch really well when we wake up and before we go to sleep. Exercise! We can rotate our shoulders when we're on the computer. Exercise! Sit in a bathtub in very warm water and reach down to our toes. Exercise! If, when we mindfully walk from one end of the house to the other, up the stairs and down, to the grocery store from the parking lot. More exercise!

    We do more than we know because we call it something else. Right now I'm exercising my fingers, not posting. :)