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Feeling Old? Research Suggests You May Be: Newton on ME/CFS - Part I

Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jul 19, 2012.

  1. anniekim

    anniekim Senior Member

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    Yes, I wondered about this statement too. I have severe M.E (predominantly bedbound) and symptoms of POTS and my body is only happy lying flat (i just can't sustain sitting up for more than a couple of minutes without the overwhelming need to lie flat and if I stay sitting up for too long I crash badly) but I don't have fainting or blackouts....
     
  2. anniekim

    anniekim Senior Member

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    Couldn't agree with you more
     
  3. Cort

    Cort Phoenix Rising Founder

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    I still acutely remember the sensation of being outpaced by a series of elderly woman on my walks as I tried to increase my endurance levels. Not only were they faster than I was but I was astonished to watch them chat away - something I couldn't conceive in my depleted state - as they buzzed up the trails we were walking..

    I would find it hard to believe if researchers didn't find quite a few commonalities between CFS patients and the elderly ultimately and in retrospect its probably not surprising that a geriatrician somewhere wouldn't find ME/'CFS an interesting area of study.
     
  4. Morgaine

    Morgaine

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    That was my experience too, I was a fit and active 22 year old when I became ill and vividly remember the shock of suddenly being outperformed by my grandparents who were all in their mid-to late 70s.

    In fact, I was only able to start to outperform my grandmother when she began to experience health problems at the age of 93!
     
  5. Cort

    Cort Phoenix Rising Founder

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    In fact, I was only able to start to outperform my grandmother when she began to experience health problems at the age of 93![/quote]

    :eek: :eek: :eek:
     
  6. Liz

    Liz

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    Thank you again, Cort! Phoenix Rising and You provide hope where none exists. This research sounds so plausible. It totally resonates with me.
    Would this not also explain why some of us feel so bad 24 or even 48 hours after exersion? If the acids in the blood are building up, wouldn't that just make you feel lousy for an extended period of time, making a patient feel somewhat poisoned?
     
  7. Esther12

    Esther12 Senior Member

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    I feel young!

    ...but ill.

    Premature ageing sound less easily reversible than I was hoping for.
     
    justy likes this.
  8. Cort

    Cort Phoenix Rising Founder

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    I think it would...I imagine it could be that the acid buildup in the muscles during exertion takes a long time to go away..I don't really understand why it might be worse the next day - as it sometimes is for me..maybe the acids sitting there continue to bother the muscle cells or contribute to oxidative stress that gets worse as time goes on....

    The second article on Julia Newton's work " the Wolf in ME/CFS; Newton on a System Stuck in Overdrive...- is up.
     
  9. mellster

    mellster Marco

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    Hi Cort, this has been discussed before (but prob disappeared into the archives with the forum move) and a few people lucky to have a fitness/rehab center close by leasing one or more of those pods have access to it, incl. myself. Athletes use it when they cannot exercise anymore due to overtraining but still want to get an edge on their competitors. I don't use/need it anymore, but it was of great help when (over-)exercising would lead to PEM. It works very similar to the rebounder/trampoline effect but the altitude ascends/drops are much more extreme and much faster (you don't work your muscles though since you just sit still). You can read everything about it here:
    http://www.cvacsystems.com/
    cheers
     
  10. alex3619

    alex3619 Senior Member

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    This is what I recall of lactic acid issues, but its been a long time since I looked at this:

    Lactic acidosis is actually beneficial for energy initially. However, the altered pH changes enzyme activity. This means the cell will function less well and have lower energy over time. It is persistent lactic acid buiid-up that is bad, not lactic acid. If whole body lactic acid remains substantially elevated over several days it can induce a condition called lactic acidosis, which can be fatal. Diabetics and those on sustained ketosis diets are at increased risk of lactic acidosis.

    So elevated lactate would produce a delayed detrimental response.

    Bye, Alex
     
  11. ukxmrv

    ukxmrv Senior Member

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    Sing,

    There must be different sorts of PEM as floor exercises as you described, massage and any extra stimulation make mine much worse. Stretching in particular is like more exercise for me on top and adds to the PEM.

    Would be great if we understood more about the different types of PEM and ways to help it. Sounds like we are all different.
     
    justy likes this.
  12. Jenny

    Jenny Senior Member

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    Is this at all similar to the neuromuscular electrical stimulation that Terry Wahls does?

    http://forums.phoenixrising.me/index.php?threads/dr-terry-wahls-ms-recovery-plan.13579/

    Even if it isn't its interesting that some form of stimulation, in the absence of physical exercise, may help.

    Jenny
     
  13. Sing

    Sing Senior Member

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    Cort and Morgaine, responding to your posts about being outpaced by elderly people, I have the experience of parking to go into a building, and someone who arrives on the street after me or parks farther away, gets to the door first. This could be a mother with a stroller, or a very elderly person, or someone in a wheelchair. They go right past me, getting to the library or grocery store door first.
     
  14. mellster

    mellster Marco

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    I believe it is more different than similar. The altitudes that pod can simulate go up to 25000 feet. Of course a beginner likely start with ascends to 5-10k feet and less sharp drops. The changes in air pressure and oxygen availability will force the cells in your body to constantly adapt and you have to equalize the pressure in your ears with some maneuvers which come eventually naturally and you don't think about them anymore. It stimulates red blood cell production and more effective oxygen intake as well as certain hormones (testosterone for example). You should commit to at least 40 minutes (one session is 20 minutes) twice a week (after the initial ramp-up) and though you don't exercise yourself it is very tiring. The hypoxia and detox you experience might give you headaches and make you feel very tired, but eventually you will feel increased energy and exercise tolerance, starting already after a couple of sessions. It also increases your pain threshold so that chronic pain is alleviated.
     
  15. Jenny

    Jenny Senior Member

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    Thanks mellster. I understand. Could what you describe account for my feeling better at high altitudes though (even without gradual adaptation), for example when skiing when I was only mildly affected.

    Bet you'll say this is quite different too!

    Jenny
     
  16. mellster

    mellster Marco

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    Maybe ;) There are lot of factors at high altitudes / mountains. The air is much cleaner and mostly free of allergens - that my itself can already make a huge difference. Next you get more UVA and more importantly UVB radiation (if you are outside) from the sun which likely increases your vitamin D levels (that is, if you have your face exposed and ideally other parts of the body as well if it is warm enough). Regarding the lower levels of oxygen, humans usually make up for that by producing more hemoglobin which is not always desired, but people used to higher altitudes develop a more efficient use of the oxygen that is available and their hemoglobin is actually lower which can reduce cardiac risk quite a bit (thinner blood). It could also be explained that some patients show some oxygen toxicity, so a lower oxygen concentration and more efficient usage might help lessen oxidative stress and symptoms. Lastly your BP tends to be higher at high altitudes which might be better for folks who suffer form low BP. Maybe you should go and try it for 6-12 months and report back :)
     
  17. Jenny

    Jenny Senior Member

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    Thanks mellster :D
     
  18. GracieJ

    GracieJ Senior Member

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    Responding to the comments about having less energy than the elderly -- I spent a good deal of time helping elderly friends with household chores and grocery shopping ten years ago, thinking maybe I could be a live-in caregiver and cover several areas at once. That idea didn't last very long. My friends in their 80s had more energy than I did. Getting them into my car, then loading their walker or wheelchair, doing the errands, getting them home, settled, then hearing, Oh, could you do one more thing? and asking for a room to be vacuumed or something -- wow, I was exhausted. Of course at 40 years younger, they expected me to have all kinds of energy and help them "catch up." I would just go home and go to bed for a day or two! These patterns had not been identified yet as symptoms of anything, but I did wonder just how this could be. So odd. Had to give up on the home care idea really fast.
     
  19. Calathea

    Calathea Darkness therapy

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    I'm guessing that this is about definitions and subsets. There is probably a very high misdiagnosis rate with ME, going both ways, and also huge overlap with other conditions. One of those conditions is POTS, which Prof Newton also specialises in, and this statement makes a lot of sense for POTS. So there could be various factors here. It could be about the subset of ME patients which she is researching, due to her own criteria: she may believe that the others have a different medical condition, for instance. Or it could be that the people who experience a lot of problems with fainting/blackouts while their ME is mild have POTS as well as, or instead of, ME. Let's face it, none of us is 100% sure what we do and do not have, because diagnosis is still patchy beyond belief, and so many of us end up with a medical condition list as long as our arms. It's entirely possible that what we call ME is actually a group of medical conditions instead. I wouldn't give up on her just because of this, I'd be inclined to find out more. She seems to have a good reputation, and she seems to be talking sense overall.

    After a horrible collapse yesterday, which the GP diagnosed vaguely as a "vasovagal attack" (from my description of it; the nurses at the hospital where the collapse occurred seemed to think that a two-hour collapse which included hypothermia and convulsive jerking was not worthy of calling a doctor to check on, and I was in no fit state to insist), I've been talking to STARS, who strongly recommended that I look into POTS. Meanwhile, POTS UK have recommended Prof Newton, who it seems is my nearest decent specialist. A local friend with ME recently told me about a friend's daughter with ME, who finally got to Prof Newton after three years of fighting for appropriate referrals and treatment, was diagnosed with POTS, and has done very well on treatment for it.

    There are two problems that I can see. One is how to get to her via the healthcare system, considering that I cannot for the life of me get a doctor to be interested in my problems with low blood pressure, collapsing, icy extremities, shaking fits and so forth, so I've not been referred to specialists for anything at all of that nature. I tell you, the next medical professional to tell me chirpily, "Well, aren't you lucky not to have high blood pressure, you're much less likely to have a stroke!" will be bitten.

    Problem 2 would be how to get to her physically, considering that I conked out yesterday after a simple outpatient's appointment just around the corner. (Although in fairness, I was a noodle and overdid it this week, particularly the night before.) I hear that tilt table testing is particularly gruelling, too. It turns out that Newcastle is 90 min away on the train, the stations are relatively close both ends, so I suppose my partner and I could possibly manage to sort out a few days there. It would be exhausting, but if she's really that good, and POTS treatment is actually worth a damn, it may be worth it. I wouldn't be willing to take the risk for someone sketchy, though. Thoughts, anyone?
     
  20. Sasha

    Sasha Fine, thank you

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    Hi Calathea - sorry you are having this trouble.

    Could you do the "poor man's tilt test" if you think you could manage it (find instructions by googling), which you can do at home (supervised in case you drop!), give the results to your doctor with a research paper (search PR for references - I started some threads on this a couple of years or longer ago and there are others - Dr Peter Rowe is a good name to look for), also one or more of Prof Newton's papers on OI and ME, tell him she's a specialist at Newcastle and ask to be referred. Hand him a list of points that show evidence that you have POTS that he can use in his letter, including mention of the vasovagal attack.

    Maybe the PMTT isn't necessary - if you have enough symptoms of OI already, and can show him them on an academic paper, maybe that will be enough. I'm a bit worried about your safety doing the PMTT.

    Regarding the travel: the only way I can do a long distance journey is lying in the back of a car and breaking the journey overnight at a hotel, if necessary. Can someone drive you? If not, and the train journey is borderline OK, could you choose a quiet time to travel so that you'd have a chance of laying across two seats or sitting with your back to the window so your feet are up on the adjacent seat, knees drawn up? You and your partner could maybe book adjacent seats and he could then sit somewhere else to make sure you get a double seat.

    If you're ending up in A&E with this, you need a chance of treatment, I think.
     

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