CFS/ME patients have an oxygen consumption of 36%-76% less

Discussion in 'Fibromyalgia Main Forum' started by stschn, Jun 19, 2008.

  1. stschn

    stschn New Member

    A study was publish in the 2003 issue of Medicine and Science in Sports and Exercise. This information came to me in the outline of the Activity Management for CFS/ME sent after contacting the Pacific Fatique Lab at Doctor Montoyas' sugestion. I have filled out the paper work and sent it in to them. They are on summer break but I was told that they would contact me after the first of the month. The program they set up is resonable but because of the distance we will have to spend the night which runs up the cost to say nothing of the cost of the gasoline. I trust Dr.M. like I've never trusted a doctor in regard to this illness so I'll follow through with it. There is some information that I found in the content area of the search bar for Pacific Fatique Lab but I've not found any thing where someone has gone through their program. I will say that in my phone call I felt that this was one of the few times that I was dealing with a person who knew about this illness. If any one who has gone through this program could give me some info on your experience I would greatly appreciate it.
    [This Message was Edited on 06/19/2008]
  2. stschn

    stschn New Member

    Bumping in hopes of some responce.
  3. Lichu3

    Lichu3 New Member

    but Pacific Fatigue Lab assisted with the Valcyte trial and has many years experience with CFS, including, as I understand, working with Dr. Peterson.

    I've had contact with them for other purposes and the staff is professional and kind. Someone from their lab has sat on the federal CFS advisory committee for several years.

    Ask them about University of Pacific-related hotel discounts -- they'll send you info. I didn't use it ultimately but it might help you.

  4. tansy

    tansy New Member

    so I look forward to reading how you get on. It's reassuring to speak to researchers and medical professionals who clearly understand these DDs rather than have to put up with the usual trivialisation of the Sx we report as if we are just exaggerating what's normal.

    The recent two day exercise test confirmed that we do not utilise oxygen in the same way; this is important info when claiming for disability or being told we need to exercise because we are jnust deconditioned.


    tc, Tansy
  5. stschn

    stschn New Member

    Someone here always comes up with helpful information.

    lichu thank you for all of your imput especially about the hotel discount. I asked about that at Stanford but never got an answer.

    tansy thanks to you I now have more information. When I was reading the presentation from Doctor Cheney on this it was way over my head as most of this is.

    spacee I'll be sure to post what my experience is with the Pacific Fatigue Lab. I understand that the people in the trial were told of this program so I had hoped someone would have followed through. They are on a summer break now but will get back to me after July 1.

    I think that the body deconditioning is a bigger issue for me because of my age and the number of years I've been so inactive.
    [This Message was Edited on 06/22/2008]
  6. mezombie

    mezombie Member

    Hi Stschn,

    I saw your response on the OFFER conference thread, and was wondering if you might be willing to give us some more details about this program. What kind of exercise does it involve? How often? Can one do this at home? And how are you doing so far with this program?


  7. Catseye

    Catseye Member

    I found the low oxygen problem to be the red blood cells sticking together. And I found that oxygenated water helps by restoring the negative charge to the blood cells so they repel each other. The amount of oxygen they transport depends on their surface area, and if they're all stuck together on their flat sides, there's not much surface available for absorbing oxygen. The term for this sticking together is Rouleaux formation.

    I did my own experiment looking at my blood with a microscope after drinking some oxygenated water and found the cells to be much less stuck together. I did a thread about it called "oxygenated water and juicing for low oxygen levels, PEM etc."


  8. acer2000

    acer2000 New Member

    You mean like penta water?
  9. Catseye

    Catseye Member

    I'm not familiar with penta water, I just happened to have a friend who was in the oxygenated water business in Europe years ago. He was into bodybuilding and all his athlete friends were drinking it. He has his machine with him near where I live so I get the water from him. I really don't know enough about other waters, but oxygenated water is supposed to come in glass bottles and you can't put anything fizzy in it like powders.

    Since it's relatively cheap it's worth a try if you think you have a low oxygen problem, like if you are breathing normally but sometimes it's like you just can't get a deep enough breath. Also, PEM can be caused by low oxygen - if the body does not have enough oxygen to make ATP aerobically, it will revert to anaerobic energy production which is very inefficient - it does this not only because of low oxygen, but when it is trying to protect itself from the byproducts of energy production like certain free radicals. For more info about the mitochondria, PEM and the free radicals, see my thread "Mitochondria's role in PEM (crash) and how you can reduce it". There are several supplements you can take for it.

    I used to sit around feeling like I was drowning just a little bit, it got so bad. But this water made me feel like I was getting more air and relieved some of the heaviness in my chest in just a few minutes after drinking it. Cheap and instant results - those are the best remedies, I wish all the things I've tried were like that!

  10. dannybex

    dannybex Member

    ...but I have heard this theory that because we're often either so stressed out, or fatigued, or in pain, that we end up taking very short, shallow breaths, instead of nice, long, deep breaths...and that could possibly explain in SOME cases why some CFS patients have this low oxygen level.

    I found this report online:

    "Breathing oxygenates every cell of your body, from your brain to your vital organs. Without sufficient oxygen, your body becomes more susceptible to health problems.

    For example, in a study published in The Lancet, cardiac patients who took 12 to 14 shallow breaths per minute (six breaths per minute is considered optimal) were more likely to have low levels of blood oxygen, which "may impair skeletal muscle and metabolic function, and lead to muscle atrophy and exercise intolerance."

    In contrast, deep breathing raises levels of blood oxygen, promoting health in many ways — from stimulating the digestive process to improving fitness and mental performance.

    Even alternative health icon Dr. Andrew Weil says: "If I had to limit my advice on healthier living to just one tip, it would be simply to learn how to breathe correctly."

    I don't know about you, but I catch myself tensing up and holding my breath all the time...


  11. acer2000

    acer2000 New Member

    Its my understanding that CFS (whatever that is) patients don't usually have low 02sat. Mine is 99%. They have low oxygen utilization. This is usually tested with an exercise stress test, so I doubt they are taking short shallow breaths during the test.

    It appears that in CFS, despite the fact that there is oxygen in the blood, its not getting burned by the metabolism. Thus CFS patients typically have low v.02 max, which is a measure of how much oxygen gets used. They also have a low anaerobic threshold. Anaerobic thresold is a measure of when your body switches from burning oxygen to a non-oxygen based metabolsim, which is way less efficient. So it would appear that in CFS, the mitos, which are responsible for this, aren't running at their normal capacity, for whatever reason...
  12. Catseye

    Catseye Member

    That's right, I had a 99% saturation or whatever with my little finger tip gadget, too. But I looked at how that machine measures oxygen. I don't remember exactly, you can look it up, it's something to do with a laser going through the hemoglobin and coming up with a measure of oxygen. But I found the explanation to be irrelevant when it comes to how efficiently the red blood cells are moving the oxygen around. Not only do they have to absorb it on their total surface area, they have to move around freely and then they transfer it from their total surface area. This constant exchange of oxygen on the RBCs surface area can't happen when the RBCs are stuck together.

    When they're stuck together, in Rouleaux formation as it's called, they are stuck together on their flat sides. They may already by full of oxygen, so the laser on the finger gadget will measure them as being totally saturated with oxygen, but when they are stuck together like this, those sides are up against the flat sides of other RBCS. So they are unable to release and absorb oxygen properly. And since they're stuck together in long chains, they don't move around as freely as they normally would.

    This is why I have gone to the ER several times, with a complaint of shortness of breath, only for them to tell me that their finger gadget is showing 99% oxygen saturation and that must mean I'm getting enough air. So this gadget may be good for some things, but not for a true indication of what's happening with oxygen in our bodies. The RBCs can be stuck together and be full of oxygen, like the gadget says, but all that oxygen is stuck there with the RBCs and we don't get it where we need it. That's when we resort to anaerobic energy production, which is so much less efficient than aerobic, and we are short of breath and have no energy.

    I used to sit around feeling like I was drowning just a little bit. It was so weird, I would take a deep breath, but just didn't feel like I was getting enough air. It was 4 years later that I figured out oxygenated water could help with this. My friend makes his own and I tried it and got results in minutes. I believe it works by restoring the negative charge to the RBCs so they repel each other, NOT by giving you the oxygen in the water because there really isn't that much in a bottle of oxygenated water.

    So you can breath perfectly and have a saturation of 99%, but if the RBCs are stuck together, the air just doesn't flow through your body. You are starved for air and this causes PEM among other things. I did a thread about the oxygenated water, just search for "oxygenated water" in the title. I confirmed it worked by looking at my blood under a microscope, even though I could already feel it.
  13. stschn

    stschn New Member

    I haven't been on much so I missed your question. The program started with my buying a basic polar heart rate monitor (on line 56$.) and loging my heart rate for a week. I was surprised to find that after all the years liveing with the DD my body was so deconditioned that my heart rate would spike just walking into my kitchen from the liveing room and even more when I was standing for any length of time. When I climbed the stairs to the bedroom it shot us to 130 she said that was like the heart rate of a normal person who had run for 10 minutes and all I did was climb I set of stairs. What an eye opener. She then suggested that I sit halfway up the stairs and do some deep breathing the in the nose and out the mouth kind that does reduce my heartrate and that I consider a powerchair to keep my heart from over working. I did the power chair and a stair chair and a shower chair and got a handicap parking plack. Before this I had thought that walking was good for me well clearly it isn't if my heart is working to hard because I will crash and end up back in bed. The third part of the program is what all the rest was working up to and is the anarobic exercise program which she custom designs for the person she works with. She over did my first progame and we had to cut back so I'll be starting it most likely tomorrow. All the exercise is done lying down and is only starting with a few leg and arm exercises which will increase as I get stronger. What is interesting to me is that I've already noticed that my heart rate is not jumping as high as it was when I started all of this. I have posted elsewhere that they only work with people sent to them by Dr.Montoya, and 3 others. I can't remember who else right now. All this is done at home and contact with them has been by phone or email. I am told that they work with people all over the country and that the program is sucessful with 80% of the people.
    [This Message was Edited on 09/23/2008]