Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Relatively high functioning adults with CFS in Auckland New Zealand

Discussion in 'Active Clinical Studies' started by Cara Blanchard, Jul 6, 2016.

  1. Cara Blanchard

    Cara Blanchard

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    My name is Cara Blanchard. This year I am undertaking a Master of Science in Clinic Exercise Physiology (MSc CEP) with the Department of Exercise Sciences at the University of Auckland. For my research project I am comparing different aerobic exercise methods to determine how well they are tolerated in those with CFS.

    I am looking for participants with diagnosed Chronic Fatigue Syndrome who are between the ages of 18 and 60 and who are currently able to engage in regular small amount of physical activity e.g. walking for 15 minutes 2-3 times per week.

    You will be asked to attend three sessions, each a week apart, during which you will complete small amounts of exercise and before, during and immediately after all three of these sessions your fatigue levels and heart rate will be monitored to assess how you respond to these different types of exercise.

    The sessions will take place at the University of Auckland Health and Performance Clinic located at 71 Merton Road, Glen Innes (free parking available).

    If you or someone you know is interested in taking part in this study or you have any questions please feel free to email cbla718@aucklanduni.ac.nz.
     

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  2. Richard7

    Richard7 Senior Member

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    Hi,

    I'm no longer high functioning and on the wrong side of the Tasman but have you looked at the workwell foundation's take on exercise and CFS/ME/SEID?

    http://www.workwellfoundation.org/research-and-latest-news/

    They have done a fair amount of research on this and have clinical experience too, and on that basis they do not recommend aerobic exercise (as exercise) but recommend limited, functionally relevant, resistance exercise only which they advise people to do horizontally.

    They also recommend heart rate monitoring during normal day to day activities to ensure that people stay below their anaerobic threshold and (hopefully) thereby avoid PEM.

    And they work with the same people you are probably looking at: the upper quartile or thereabouts.
     
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  3. Hutan

    Hutan Senior Member

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    Welcome to the forum @Cara Blanchard

    How much do you know about CFS?

    Have you spoken with Ros Vallings about your research? (She is the most experienced ME/CFS doctor in NZ and is based in Auckland).

    What criteria will you be requiring patients to have been diagnosed under?

    People with ME/CFS experience Post Exertional Malaise - that is we experience a worsening of symptoms after exercise. While there may be some immediate symptoms (related to orthostatic intolerance?), we typically feel the main effects of exertion the next day or so and these effects may last for a few days or, if the exertion is significant enough, for much longer. So your current evaluation plan will only tell a small part of the story of the impacts of the different types of exercise.

    Please also be aware, if you are not already, that ME/CFS is much more than fatigue. Symptoms that may appear or be exacerbated after exertion include tender neck glands, sore throat, brain fog, muscle weakness and pain, muscle twitches, gastrointestinal problems .... If you are just measuring self-assessed fatigue, you will again only get a small part of the story of the impact of exercise.
     
    Last edited: Jul 7, 2016
  4. aaron_c

    aaron_c Senior Member

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  5. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    @Cara Blanchard, you're probably going to get a lot of advice on study design here, so I'm going to add my bit. Some studies have shown that ME/CFS patients who add exercise to their activities tend to eliminate other activities (housework, hygiene, cooking, etc.) in order to conserve energy.

    The only way to see if this is happening is for the subjects to wear accelerometers throughout the study. One needs to obtain a baseline accelerometer reading for one entire week preceding the exercise intervention, and then compare it to readings obtained for the weeks when the subject is exercising.

    Will your study take this into account or will you just be looking at short-term effects?

    How do you plan on monitoring the subjects' "fatigue levels?" I've not heard of any objective way of measuring fatigue.
     
  6. Richard7

    Richard7 Senior Member

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    @CFS_for_19_years One has to be a bit careful about the accelerometers/actimeters too.

    In the linked video at about 33 minutes Leonard Jason talks about a study in which the authors only looked at the total amount of activity, as measured by actimeters, which was the same in CFS and controls. They failed to note that the pattern was different.

    The healthy people had a diurnal pattern the CFS people were as active at night as they were during the day.

    http://forums.phoenixrising.me/inde...e-cfs-myths-versus-reality.44214/#post-718753
     
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  7. ukxmrv

    ukxmrv Senior Member

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    Hi Cara,

    If you recruit adults who can perform exercise for 15 minutes 2-3 times a week with no ill effect on their health then this group may tell you nothing about the majority of people with ME and CFS as they will be unusual.

    It would be like asking for diabetics who can eat cakes

    I am very concerned about your research project, the value of it and how it could be used to damage the rest of us.

    Fatigue is only one small reaction that a PWCFS could have to exercise and the fact that you singled this out raises my alarm as well.

    Please re-consider and analyse why you are doing this.

    When Dr Ramsay described his ME patients he spoke about a group that was harmed by trivial amounts of exertion.

    Your approach is flawed sadly. You may find a group of patients who can travel to your clinic , then fill in your questionnaire and exercise for you but what you are not factoring in is what they need to sacrifice to so this. They may need to drop their energy expenditure elsewhere. You are not going to see this or factor it in.
     
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  8. Kati

    Kati Patient in training

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    This proposal does not seem to take into account how many days afterwards the person crashes or feels sicker if you are measuring the effects of your intervention only on the day of the exercise, and not the symptoms on the days and weeks following.

    I really really wish scientists would look at the science behind ME, the pathology, which would lead to biomarkers and therapeutics, instead of simply trying to fix us with exercise and behavior interventions.

    This is who I was before I got sick. Exercise will not fix me. I wish it did but it won't.

    image.jpeg
     
    Last edited: Jul 8, 2016
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  9. panckage

    panckage Senior Member

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    @Cara Blanchard I've got to agree with @ukxmrv. I can do some exercise but this does not look like a valid study. It looks like the outcome has already been chosen

    According to the flyer:
    This can't be serious can it? Recruiting PWME who can do exercise will provide you with a group that results in minimum short term fatigue. This needs to explained. It is a biased design


    Mild CFS people like me don't have too much trouble walking 15 min 2-3 times a week. In fact about a third of us(?) work at least part time. The group you are asking for is most likely already doing more exercise than the study entails

    What group is the results of this study supposed to apply to?
     
    Last edited: Jul 8, 2016
  10. Snow Leopard

    Snow Leopard Hibernating

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    Excellent analogy...

    Seems to be strange wisdom in trying to do a study that in principle, won't help a majority of people with this illness.
     
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  11. Comet

    Comet I'm Not Imaginary

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    If exercise was mostly helpful to us instead of mostly harmful, this forum wouldn't exist. :ill: Best to you, @Cara Blanchard, I hope you will reconsider. :)
     
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  12. Cara Blanchard

    Cara Blanchard

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    Hi all,
    Thanks for all your interest and comments, it has given me lots to consider.

    Sorry, I wasn’t very clear in the wee description but I have had CFS myself about two years ago and still find I have to manage my energy levels and diet very carefully otherwise I find the fatigue starts creeping in again.

    On this note, yes I know Dr Ros Vallings, she was extremely helpful to me when I was sick myself and I have seen her and discussed with her this study and worked through some issues with her help.

    I used to be a semi-competitive athlete...as I began to recover about 18 months ago and became interested in training again (definitely was not interested while I was at my worst!) I found that performing shorts spurts of exercise with breaks in between left me feeling noticeably less fatigued than if I had performed continuous exercise (i.e. walking/jogging 2min on 2min off compared to jogging for say 15 minutes straight).

    I decided to do a small trial to see if this way of interval training may benefit those looking to get back into exercise as they recover. I am in no way saying that this could cure CFS or will even benefit everyone with CFS, just that for those people who perhaps have been physically active prior to their diagnosis and are wanting (and are able) to get back into exercise this MAY enable them to exercise with less PE malaise. Again, in no way am I suggesting this, or in fact exercise in general, is a cure for CFS.

    I can understand your scepticism, I’m relatively new to the CFS community (about 2 years) but I gather that there is a rather large history of some debateable studies and trainers making claims about exercise and curing CFS?

    The measures do take into account the day following the exercise sessions, and no – fatigue scales are very much subjective to the participant which is why heart rate has been included as a substitute for an objective measure – raised heart rate is often a signal of an acute bout of fatigue. In terms of control groups etc. I am writing up the final dissertation as multiple case studies, describing each case in detail (hence the need for subjective measures) rather than the more conventional method of averaging the data and comparing so no need for a control group.

    Hope I’ve address some of your queries - I particularly like the cake analogy btw :lol:. Obviously this will only apply to a very small group of individuals but as described above, it's a Master's dissertation not a funded clinical trial so there are many, many limitations that I am very much aware of :thumbsup:

    Cheers,
    Cara
     
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  13. daisybell

    daisybell Senior Member

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    I find it interesting that you can jog at all. I could walk slowly on the flat for 15 minutes on a good day, but any kind of more aerobic exercise is a big mistake for me - leads to PEM without fail, no matter how short the interval. Having said that, earlier in my illness I could probably have jogged for a couple of minutes - no way could I do that now. I very definitely feel that this change is not one of deconditioning but of changes in the way my energy production works. Stress any muscle group now and I get immediate cramps/spasms in the muscle, which then takes days or weeks to recover.
     
  14. Kati

    Kati Patient in training

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    My interval 'exercise' is sitting or standing for a couple minutes for a task, and go back and lay down for 2-10 times as long to recover.

    This said @Cara Blanchard made sure to mention she was looking for high functioning CFS patients. It may mean patients at the early stages of the illness that is progressive, or patients who have a stable, mild illness. The worry would be for those who belong in the first group but don't know it yet.

    Early on in my illness I actually tried to get myself back into shape by running up a 20 minutes hill and then feeling so deconditioned I had to run-walk- and I didn't understood what was happening because i could easily run for an hour. And I felt so sick the next day and still could not understand what was happening! It took many more months to understand what 'post-exertional malaise' meant.

    Wishing you best, with your master's thesis @Cara Blanchard, but remember 'first, do no harm'.
     
  15. Webdog

    Webdog Up to 91% remain undiagnosed

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    Also potentially include those with relapse/remitting ME/CFS during a remission.

    Right now, doing the interval exercise described could leave me bedbound for days. In fact, attempting graded exercise significantly worsened my current relapse.

    But during remission years, I could likely perform some interval exercise with just mild PEM. Light exercise overall feels good and beneficial during remission.
     
    Last edited: Jul 9, 2016
  16. Richard7

    Richard7 Senior Member

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    I can see how this might work with the dy by science approach. Doing exercise targetted at increasing numbers of mitochondria. I know that there was someone trying this on the forum and a thread on it somewhere.

    I tried it myself in 2013 when I had a bit of a remission, I do not know if it helped or hindered the remission. But I get why Myhill was interested, and I tried the version on her site.

    @Kati I did much the same thing but with walking rather than running. Indeed I did it, made things worse, was forced to take it easy for a while, got a bit better and did it again and again and ...

    The idea that exercise will make things better is so ingrained. Indeed I talked to my physio about the workwell foundation stuff and while she seemed to get it and said she got it she still concluded the conversation with talking about needing to maintain a certain level of aerobic activity to stop all sorts of deconditioning stuff from goin on.
     
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  17. Richard7

    Richard7 Senior Member

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    I can see how this might work with the body by science approach. Doing exercise targetted at increasing numbers of mitochondria. This could be either resistance or HIIT. I know that there was someone trying this on the forum and a thread on it somewhere.

    I tried it myself in 2013 when I had a bit of a remission, I do not know if it helped or hindered the remission. But I get why Myhill was interested, and I tried the version on her site.

    I would think that the resistance would be safer as it is targetted at the anerobic system rather than the aerobic the evidence is that the aerobic is really broken.

    Indeed @Cara Blanchard If you were running for two minutes would it not be creatine for about 10 seconds, then anaerobic for about 2 minutes and then you stop before the aerobic kicks in.

    So this would be anaerobic exercise not aerobic.

    @Kati I did much the same thing but with walking rather than running. Indeed I did it, made things worse, was forced to take it easy for a while, got a bit better and did it again and again and ...

    The idea that exercise will make things better is so ingrained. Indeed I talked to my physio about the workwell foundation stuff and while she seemed to get it and said she got it she still concluded the conversation with talking about needing to maintain a certain level of aerobic activity to stop all sorts of deconditioning stuff from goin on.
     
  18. Valentijn

    Valentijn The Diabolic Logic

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    6 months would barely qualify as CFS, even if all symptoms were present. And based on your comments below, your experience does not seem to have given you much understanding of the disease.

    I strongly recommend that you learn more about ME before embarking upon any project where there is a high risk that ME patients will be harmed, as is often the case with exercise programs. An excellent resource is the recent Institute of Medicine report recently commissioned by the CDC, NIH, FDA, etc in the United States: http://www.nationalacademies.org/hmd/Reports/2015/ME-CFS.aspx

    ME is defined by a pathological reaction to exertion. While some forms may be more harmful than others, it seems rather odd to study a therapy to see which form makes us less sick than the other forms. You say the intent is not to use exercise as a cure, but presumably you still think it will be somehow beneficial?

    I would also caution about making unwarranted conclusions regarding cause and effect, even based on your own experiences. While you may perceive the exercise as having been helpful, it is far more likely that you recovered from an episode of chronic fatigue and naturally were able to become more active again.

    For 24 hours after exertion? PEM most typically begins at that point, and any "fatigue" experienced up to that point would be more likely to be a more typical exercise intolerance, such as from orthostatic intolerance. If measures only last 24 hours post-exertion, they will still completely miss the most symptomatic period.

    What is your source for the above claim? And again, post-exertional malaise is much more than fatigue. Are you aware of the distinction between fatigue and PEM, and the distinction between chronic fatigue and ME?

    I would also appreciate your answer regarding a previous question: Which criteria are you using to define ME/CFS?
     
  19. Hutan

    Hutan Senior Member

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    Fair points @Valentijn, especially about the need to take measurements for at least two days after the exercise and the importance of getting the diagnostic criteria right.

    But credit to Cara for coming back to us with more information and clarifying that she isn't seeing exercise as a cure.

    Three of us in my family got ME/CFS at the same time and 3 1/2 years later we now all have different exercise capabilities, with my daughter now essentially recovered. So I understand that exercise is something that some people with mild or nearly resolved ME/CFS are able to do and might want to do. And that there might be ways to eliminate or minimise the subsequent PEM.

    I can see the benefit in patients and exercise physiologists having a quantitative correlate of PEM that could help determine if exercise/activity is causing harm. Cara's study could add to the understanding of how correlated fatigue/PEM and heart rate are in very mild PWME, as well as the impact of the different exercise approaches.

    Checking my records, my experience fits with Cara's statement that raised heart rate is correlated with (edit) fatigue. For me though, the difference between supine and standing heart rate (a measure of orthostatic intolerance) measured first thing in the morning is better correlated (edit) with PEM. It wouldn't cost a lot in terms of resources or time to have participants measure supine and standing heart rate first thing every morning and to rate PEM every day throughout the study. That might give a much stronger result and more to discuss.

    I'm experimenting with measuring heart rate variability at the moment to see how correlated it is with my PEM. Cara, I presume you are familiar with heart rate variability as a measure of readiness to train? (I understand you have to keep a tight scope for your thesis but maybe it is something you could look at later).
     
    Last edited: Jul 9, 2016
  20. Comet

    Comet I'm Not Imaginary

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    Thanks @Cara Blanchard for a more detailed explanation of your intent. One of the things that concerns me is that you are targeting such a small group of people that they are likely not representative of the ME/CFS community.

    I'm not sure if you are aware, but there are many different definitions of 'CFS'. Most of us patients prefer the term ME, rather than CFS, and have PEM, or Post-Exertional Malaise, (or PENE - Post Exertional Neurological Something or Other) as a symptom.

    Exertion can be defined as exercise, or as something as mild as getting up or walking across the room. Others experience cognitive PEM just from trying to think or concentrate. PEM can be quite devastating and does not go away with 'reconditioning'. In fact, it tends to get worse.

    If you are using an older definition of 'CFS', and not the CCC or ICC definition, you may wind up including patients who are chronically fatigued for other reasons, such as depression, MS, thyroid disorder, diabetes, etc. These people might benefit from exercise or activity, but are not representative of patients with ME/CFS.

    Studies such as this wind up being a negative for the ME/CFS community, as there winds up being yet another headline touting the benefits of exercise for people with CFS. However, the patients studied often have not met the criteria of actually having ME.

    If you are interested in working with patients with ME/CFS, maybe there is another angle from which to approach this. I don't know.

    Best to you in your studies. :)
     

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