Discussion in 'Phoenix Rising Articles' started by Phoenix Rising Team, Jul 19, 2012.
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Very encouraging report about Dr. Newton's work. Especially exciting to see that this research is going on at Newcastle University. I'd like to know more about Julia Newton. Thanks, Cort.
I love the idea that she's developed a technique for exercising the cells instead of the patient. Got a little mental picture of cells doing calisthenics in a petri dish. WTG Dr. Julia.
Very interesting and timely for me. I went to Ithaca for the two day cardiopulmonary exercise testing done by Dr. Betsy Keller and found that I go into anaerobic metabolism earlier than I should ( my AT-anaerobic threshold- is low). There is something wrong with my aerobic metabolism but what exactly and how to study it further is a problem. Muscle biopsies are not easy to have done. Hopefully this study by Dr. Newton will cement what many of us with ME/CFS already know: aerobic exercise is a problem for us.
Very interesting. This statement, though, I think needs further exploration:
I think many patients who are not at the severe end of the spectrum have significant problems with blood pressure regulation, OI, etc. This was, perhaps, the first symptom I noted and it came a long time before "fatigue" symptoms.
Sounds very interesting and perhaps promising, but I'll remain guarded until we hear some actual details about these "treatments." Russian and other sports physiology experts have studies muscle exertion, recovery, etc. for decades. If there were something to remove LA and fatigue and induce faster recovery times, I'm sure we would have heard about it by now. But who knows, sometimes things slip through the cracks. If she has something new and this isn't just some bait and reel in type of maneuver that we see so much of in the ME/CFS treatment community, I definitely think we should hear about it sooner rather than later! Let's hope she's really onto something.
Just to point out that as well as Action for ME, ME Research UK, the ME Association and the Irish ME Trust have funded Julia Newton's research.
Interesting Sushi....I imagine that we can come to it in all sorts of ways...I imagine the problem, once they really dig into it...will be found to be significant in those who are not as ill such as myself. My orthostatic intolerance problems are not overtly so bad but when I stress my system - by overexercising - or going up and down alot - they show up pretty quickly; I think blood flow/muscle problems are key problem for me. This area of research really resonates for me...
Congratulations to them...These guys are doing some great work! Love to see this good research coming out of the UK.
If anyone knows how to get hold of her please let me know...I'd love to do an interview with her.
Agreed, sports physiology is a big industry now.....time will tell what she's experimenting with and indeed if it can be used by humans...(Might she be using drugs on the muscle cells that can
t be used right now - but will the point the way to the right drugs?)
So exercise according to her should one wait for recovery of muscles or we are unable to recover from the latic acid build up w/o this meds? How long before we recover, how to know when you are recovered?
Just questions if you have the chance to interview her please.
Professor Julia Newton
Associate Dean for Clinical Developments and Clinical Professor of Ageing and Medicine
Julia Newton, and her colleagues, have been awarded two grants from the MRC (the Medical Research Council, the main government-funding body in the UK), as part of a round of funding specifically for biomedical research into CFS/ME:
Understanding the pathogenesis of autonomic dysfunction in chronic fatigue syndrome and its relationship with cognitive impairment.
PI: Professor Julia Newton, Newcastle University.
Identifying the biological fingerprints of fatigue.
PI: Dr Wan Ng, Newcastle University.
Here are further details:
http://www.meassociation.org.uk/wp-...04/Information-for-portfolio_FINAL-2-copy.pdf (See the second and third studies listed in this PDF file. One of them is headed by Dr Wan Ng.)
Im with what Sushi said .. in my case I dont think Prof Julia Newtons comment fits properly
If I think about this.. I wonder if Prof Newton is confusing peoples lack of doing much at all.. with "fatigue". I often do get some fatigue (right now.. I arent feeling any at all.. yet I do have severe autonomic BP issues and do get fainting and blackouts at times) .. but compared to many mild ME/CFS cases, I dont get much fatigue at all.. it's the other symptoms which kick in and stop me doing stuff.
I think there is many issues with definitions of different things be it fatigue or whatever.. and others may judge (esp those who arent experiencing how one is feeling themselves eg doctors may judge) ..one not able to do much at all as having severe fatigue.
Unless she by fatigue she was refering to cognitive fatigue??? The severe BP issues I get do give me some severe cognitive fatigue when they are affecting me badly due to blood not getting to my brain. (I was left completely unable to understand language at the supermarket checkout a couple of weeks ago... not sure if I'd say that was cognitive fatigue or not thou when suddenly English is sounding like a completely foreign langauge to me).
But from my experience with things, I just dont believe one can judge the severity of a ME/CFS persons autonomic issue to the level of "fatigue" they have. Im sure Im less "fatigued" then some with ME/CFS who dont have as bad autonomic issues as I do. I feel energy thou I cant act out on it much or I get ill.
If you can do light exercise and want to exercise your cells a rebounder (trampoline) is great. Also exercising the cells without the patient is basically what CVAC does. You still should should do light muscle exercises though.
As others' have noted it's possible to be very debilitated with multiple symptoms with ME yet fatigue could be the least problematic of those. In earlier decades the fatigue was less challenging for me, and even now with very marked fatigue (without fainting or blackouts) it remains the symptom which concerns me the least. The numerous neurological symptoms, including neuropathic pain and really very profound sensory overload, are much more debilitating and limiting in terms of my ability to take part in normal life . JN's work is interesting indeed, but I feel she is looking at fatigue simplistically, or at least only through the lens of her own speciality. If fainting and blackouts are pre-requisites for classifying a pwme as having severe fatigue then she's missing a whole tranche of severe patients who do not express those two symptoms.
Thanks Marco.....what is CVAC?
A help in recovering from exercise or the aching, etc. of PEM is floor stretching and rolling or lying on a rounded wooden or hard foam roller. These two things, the stretching and pressure point massage work, help clear out the lactic acid and move the lymph along where it should go. When I am too tired even to walk around much, the floor stretching and massage work helps my body feel, and be, better.
Cort, when I read your title, "Feeling Old...You May Be", I related in many ways--physical capacities, cognitive functioning--but was hoping that the article would be about research on actual longevity of PWME. There was some little study years back, out of the UK?, which said that PWME lived about 25 years less than average. But it qualified this result by saying that the higher rate of suicide among us altered this statistic. (Yeah, that makes it better--?)
I have felt older than my age, of course, ever since falling into a disabled condition. I used to work with elders and also do hospice care, and measured my own condition against theirs. I have had good friends one, two, three decades plus older than myself, and seen how they functioned better than I did in key respects--in terms of cognitive abilities, energy, capacity for exercise or exertions, ability to be upright, ability to eat and drink normally, etc--I also had a close friend with AIDS and saw him in different stages of this disease. Here again, he did better than me in many respects. We all know this, but the discrepancy between the condition we find ourselves in and that of others who are legitimately allowed to be limited, sick or disabled--but who may not be nearly as badly off--strikes me with such irony. I have friends now with cancer, going through the stages of it, and yet until nearly the end, they function better than I do. Yes they are dying and facing the ultimate loss, but my life and those of us here have encountered a procession of losses and limitations which have nearly all been unacknowledged and denied, socially and medically.
And then I have to balance these recognitions, and myself, with appreciation for what I do have and go forward with what life is offering me today. This is amazing work. It is, actually, the hard work of old age--facing and dealing with losses until one can emerge on the other side, positively and consciously--not healed but whole, at least in feeling...This is how we are old, like the old, as your title and this little slice of a study do suggest.
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