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Professor Julia Newton: Research Presentation: Transcript and Video: November 2012

Discussion in 'General ME/CFS News' started by Firestormm, Jan 15, 2013.

  1. SOC

    SOC Moderator and Senior Member

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    Metaphysics? :confused: Is that like praying, or somethin'? ;) Plasma volume increase through prayer? :p
    jimells likes this.
  2. lnester7

    lnester7 Seven

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    I have to strongly disagree here. I cannot exercise regularly but I have 2 things that get my CFS into remission. A cold and my period, How do you explain I can walk miles w/o having any PEM while I have my periods (specially day 2) and I am unable to go up a flight of stairs or even walking lets say when I am off my period, Same with a cold, I can do anything and I do not experience PEM nor after the cold/period is gone, nor do I pay for the activity during them.

    Also, I was bed ridden. I got florinef prescribed, and 3 days later I was walking more than one mile? Vs 3 days before I couldn't even brush my teeth???

    If it is deconditioning shouldn't it be that I cannot perform about the same amount of something from day one to day2???? And I am talking big difference like going from been unable to brush teeth to walking miles at the time (I have done up to 5miles when feeling well if I have a cold or period) and no PEM afterwards.
    sandgroper, Shell and Valentijn like this.
  3. Rooney

    Rooney

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    SOC,
    Thanks for the exercises. You gave a good recap without even reading the trancript.
    SOC likes this.
  4. Rooney

    Rooney

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    I'm having luck with Strattera which is calming my heart rate.
    Valentijn likes this.
  5. ukxmrv

    ukxmrv Senior Member

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    The probem with prescribing exercise for people with ME, even slow and gentle ones, is that the energy to perfom these exercises must come from somewhere and at the expense of something.

    Like the walk which was used for PACE trial results asking a PWME to concentrate on one exercise or activity gives an artifical impression that progress is being made.

    The energy used to do the exercises comes at a price. The price may be that the PWME can no longer use that energy or strength to brush their hair, bathe, pay a bill or talk on the phone.

    It has repercussions. It has costs and they must outway what is lost.

    The Spoons regime teaches us that we have only a limited number of energy units and we need to think on how to use them.

    I can't see any benefits for a PWME in doing 5 minutes of very slow exercises. It just means that they cannot spend that 5 minutes of strength doing something else that may be far more beneficial to them. Activities of daily living, hygeine, social contact are all far more important to me.
    peggy-sue, jimells, Shell and 2 others like this.
  6. SOC

    SOC Moderator and Senior Member

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    I don't disagree with your points in general. I am a huge fan of getting lots and lots and lots of rest with this illness. I wasn't exercising when I couldn't shower, brush my hair, etc. Staying alive took all the energy I had. Now I can spare 5 mins of energy in 1 min chunks in order to have some core body strength to help me be upright better. The exercises are very, very mild (check out the exercises at the link above) and 1 minute at a time it only uses anaerobic energy, of which I do have that tiny bit to spare. It's that aerobic energy that's the real problem.

    Yes, it's a trade-off. However, the amount of energy I use doing 5 mins of very mild supine exercise in 1 minute chunks is so tiny that there isn't much I'd be doing with it anyway. That one extra minute of standing isn't that valuable to me. I'd rather have some extra core strength. ;)
    Firestormm likes this.
  7. alex3619

    alex3619 Senior Member

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    One of the principle aims of conditioning is to reduce energy demand. By making key muscles stronger, the postural demand on other (weaker) muscles will be less. So there is some scope to do this, carefully, within a pacing paradigm and for appropriate patients. This is particularly true with leg muscles and OI as well. However there are clearly limits, and so far the science has not figured out the basis for those limits. This is not a simple issue, and I am glad to see research from exercise physiologists and not psychiatrists on this.
  8. Firestormm

    Firestormm Guest

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    In the Newton talk above, it was this anaerobic threshold that she was talking about in relation to planning an appropriate exercise regimen. I think Klimas was also (from memory) talking about the importance of establishing this personal threshold. Those exercises you linked to are more along the lines of what I do myself. It was useful for me to see what is prescribed for those with MS - thanks.

    I said before that when a general paper is interpreted as saying (or indeed says) that exercise is good for people with our condition and is the recommended treatment it is all to easy to feel this is inappropriate. But I think the details - the personalisation, the relevancy, flexibility and the clinical interpretation - are more important.

    As is the acknowledgement that exercise - even along the lines of those routines you have highlighted - are not appropriate for all people all of the time. As you said, I could (can) certainly not complete a routine or even the exercises themselves when experiencing a rough patch. And I certainly couldn't exercise when I was solely focused on remembering and then trying to e.g. brush my teeth.

    It must be relevant but I don't think we are going to see the exercise recommendations removed as treatments for our condition. At the present time when there is little else to recommend for this condition perhaps - exercise can all to often appear to be the only thing recommended.

    It gives an all too apparent impression that we are being told to exercise our way out of ME. Newton did talk about other treatments for autonomic dysfunction - some available now and some that she hopes her research will create and then trial. We aren't solely prescribed exercise even now as the only remedy for our condition but largely any treatment is symptomatic.

    It might feel that we have been left in a holding pattern, endlessly circling the airfield and being buffeted by turbulence. But many if not all of us are receiving other treatments in addition to personal advice. Unless we are able to 'recover' or experience some period of relief allowing a greater participation in 'normal life' for reasons we don't yet understand; this absence of a specific treatment for what we regard as the condition itself (and not help with the symptoms) leaves me feeling very poorly served.

    I just felt though that Newton's wee talk was another glimmer of light in the darkness. And given that the MRC have pumped guarded funding her and her colleagues way - to the extent that they have - I am more inclined to think (and hope) that this research could lead to more appropriate treatment one day.
    SOC likes this.
  9. Firestormm

    Firestormm Guest

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    Cheers matey. That was the link I worked from. Thought I had the link on the pdf. Oh well. Appreciate the additional information.

    Afraid you got me there with this 'metaphysics' too! Am only an 'umble country bumpkin. Perhaps you could enlighten this old duffer at some point? :)
  10. Valentijn

    Valentijn Activity Level: 3

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    I think it's a matter of preference. Yeah, my weak abdominal muscles bug me sometimes, but they're weak because I don't use them. Hence I'm not interested in building up a muscle I'm never using, if it comes at the expense of being able to cook dinner or brush my teeth.

    But for someone at a higher level of functionality, the trade off doesn't have such a big impact on your life as it might on mine. It all comes down to where our symptoms are :p
  11. Valentijn

    Valentijn Activity Level: 3

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    Klimas' recent focus on exercise might be even more useful than attacking the traditional GET model head on. Instead of fighting it, she might be attempting to hijack it and turn it into something else. Thus the apparent support for exercise (GET) in ME could be seen as support for her very different form of exercise in ME. Sort of the same way psychs get support for their form of CBT-for-ME from doctors that don't know what it really is, and actually has nothing in common with the CBT used for other chronic physiological illnesses.

    Based on how Unger clearly seems to feel about ME/CFS, some perceived stipulation regarding treatment might have been essential for Klimas to continue receiving government support for her research.
  12. ukxmrv

    ukxmrv Senior Member

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    I've been at the point that I could spare 5 minutes to exercise and found that it didn't improve my functioning on the days/weeks/month when I could not exercise. Twice I've been on exercise programs and both times I ended up worse afterwards. More than once I've started a small program at home and tried gentle things from small starts. Never lasts.

    Even after nearly 30 years of ME if I feel better physically I try to be more active. It's just natural.

    Having stronger muscles though from the programs didn't stop the infections, the months in bed with viral symptoms, the POTs and all associated ME symptoms. It didn't make it any easier to stand up or move around.

    It appears that whatever it is that exercise does produce isn't valuable enough to help me the rest of the time. Either that or because we don't have the fuel to drive the muscles it's like spending our money on a Lamborghini but finding we couldn't afford the petrol and there it is sitting in the garage doing nothing. Exercise always acts as a negative drain in the end for me.

    That's not going to be the same for all of us. I'd love to hear from people when they have completed a year or more (or had to give up) her regime. Maybe it will help people who are recovering and not subject to relapses now?

    SOC, hope you can let us know how you get on, if your muscles do recover and what it does to help?
    Valentijn likes this.
  13. Simon

    Simon

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    Ah, yes, that was the third sentence of your presentation, I'm afraid attention to detail has never been my strong point.

    Metaphysics is a branch philosophy trying to understand the fundamental nature of the world, but in medeaevil times could involve some less-than-scientific approaches (in my mind is associated with Dr Faustus, he of the Faustian pact with the Devil) but I have to admit I'm a little hazy on philosohy so don't take my word for it.
    Firestormm likes this.
  14. Shell

    Shell Senior Member

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    I am one of those who just finds getting through a day a great struggle. I have no choice but to keep going as I have children to take care of. That's about all I can manage. My oldest dd has taken on most of the cooking these days, although I do cook when I can and my oldest son does the washing most of the time.
    Even with those jobs taken off me I still crash badly every day!
    Just getting dressed and walking upstairs can knacker me.
    ukxmrv is right. Just the ADL can take so much from us that adding in some pointless exercise seems, well, pointless. I did GET and I'm now far sicker than I was. I'm never falling for the rhetoric again. I think Dr Klimas should be extremely cautious about being caught up in this. I know the Medicare budget has been slashed and faces further cuts. She needs to be aware of the politics around GET/CBT.

    It takes everything I have to ensure my kids get what they need.
    I sometimes get the impression that these doctors/reserchers think we are sitting on the bloody sofa doing sweet FA all day. Sorry if this sounds bitter. Feeling rough these days.
    ukxmrv likes this.
  15. lansbergen

    lansbergen Senior Member

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    They better investigate what causes the mucle strength fluctation.

    In my case it can go from no strength to perfect strength from one minute to the other.

    I still remember a striking event. I was trying to lift an object to move it but all my attempts failed. When I was going to give up, suddenly the muscle strenght was there. Then I could easely lift it and move it. Regrettably it only lasted a couple of hours.
    ukxmrv and Valentijn like this.
  16. alex3619

    alex3619 Senior Member

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    The best explanation for that we have currently would be something neurological - either central or peripheral, but neurological. Biochemical changes are not typically that fast, though if you were talking five or ten minutes then they might be.

    I get the opposite: I am ok to do stuff, like pick up a kettle with hot water, and then very quickly its a major struggle and if I try I will drop it.
    sandgroper likes this.
  17. akrasia

    akrasia Senior Member

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    Klimas has been pursuing some sort of heart rate and self report determined exercise/rest program for several years. It has only begun to break the surface of internet awareness recently. According to what I understand, it is offered as an option and is not used as a monotherapy, as it is for the bps gang. It doesn't derive from a psychological model that proposes hypervigilance, catastrophizing, or disturbed interoception as cognitions requiring "correcting." And most importantly, it acknowledges that in the overwhelming majority using these methods might result in better quality of life but in no way will resolve the problem presented by a perpetually overactivated immune system.

    The appearance of Klimas and her physical therapist on the CDC call in show has understandably stirred the hornet's nest and the time limitations imposed by the format contributed to this. It was too short a presentation, didn't allow for a comprehensive interrogation of what this protocol represents, how effective it is, and most acutely the politics of exercise in this illness. Mentioning "deconditioning" in this context, without patients being able to talk about the oppressive, specious and false use of this word in the politics of m.e. was a huge mistake, opening the way to the assimilation of what she was saying to the bps school. Klimas means something entirely different in my opinion. But of course how could this be addressed adequately when you're speaking in a CDC venue? She tried, in her introduction, but it was too muted.

    I agree with Valentijn that Klimas represents a subversion of the Reeves and Jones model of disturbed interoception. I see it as part of the CDC's backing away from its previous views.

    Institutions change very slowly, seldom if ever acknowledging their past mistakes and the damage inflicted by them, unless they are forced to.

    Daniel Moricoli has some good presentations on how the protocol works and there are some good pages written by Cort on this aspect of Klimas's work. Sorry, I don't have the links to hand.
    SOC, Sasha and Valentijn like this.
  18. lansbergen

    lansbergen Senior Member

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    I had that too and still have sometimes but the other way around is more intriguing.

    I dropped not only heavy stuff but also light things like a piece of paper.

    I am pretty sure it is central and periphere and my main problem is a7 nAchR malfunction.

    Now the muscarine dogma is challanged and a lot of research is done on nicotine a whole new world opened for me.

    Now l know why I need nicotine and levamisole.
  19. SOC

    SOC Moderator and Senior Member

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    I'll certainly keep you posted, but I don't expect any major recovery through exercise, just a better ability to be upright longer. :)

    As I recall, and I may not be getting this exactly right, the Klimas/Rey/Sol group believe (based on exercise testing) that our aerobic energy production capabilities are seriously impaired. However, our anaerobic capability seems intact. The idea is that if we can improve our anaerobic range we can compensate for a part of our aerobic impairment. While this cures nothing -- our aerobic dysfunction still exists -- it can allow us to improve our quality of life to some degree.

    I did not hear any suggestion that this kind of exercise cures anything. What I understood was that it is a way to gain some more functionality by using a functioning system (anaerobic metabolism) to compensate for some of the loss due to the poorly functioning system (aerobic metabolism). It's another coping mechanism, like pacing.
    Morgaine, Valentijn and alex3619 like this.
  20. alex3619

    alex3619 Senior Member

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    Hi SOC, my reading of the science is not just that our anaerobic is intact, its actually enhanced, probably as a compensatory mechanism. However there are other aspects of glucose metabolism that are damaged, so this is not completely effective. I suspect that not just blood flow but oxygen dumping based on the oxygen dissociation curve (pH alters oxgyen release from oxyhaemoglobin) are important, but there is still some doubt about this as it would require local pH changes in the microcirculation, and I do not know if this occurs. Bye, Alex
    SOC likes this.

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