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Actimeter Data

Discussion in 'General ME/CFS Discussion' started by charityfundraiser, Mar 5, 2012.

  1. charityfundraiser

    charityfundraiser Senior Member

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    I saw someone mention on the Research1st blog post about FITNET that there have been 3 studies of CBT/GET that had actimeter data pre- and post-treatment that showed no difference but the post-treatment data was not published or was published elsewhere and spun. Can someone post links to these 3 studies and the actimeter data?

    Also, what exactly is an actimeter? Google doesn't actually turn up much. What is the difference between an actimeter and a pedometer? I'm wondering if the pedometer that comes with an iPod would approximate an actimeter. What can I buy to measure my own progress?

    Not sure if this is the right category to post in since it's a mix of research and other.
  2. Esther12

    Esther12 Senior Member

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    It's 'actometer'.

    This paper releases actometer readings from three prior studies which had been presented as showing CBT to be effective, and it was only 9 years (I think) after the first study was released that we got the actometer readings showing no improvement in activity levels.

    Bleijenberg G, Prins JB, Wiborg JF, Knoop H, Stulemeijer M,. 'How does cognitive behaviour therapy reduce fatigue in patients with chronic fatigue syndrome? The role of physical activity.' Psychol Med. 2010 Aug;40(8):1281-7.

    It's written in a very pro-CBT way, and there's no acknowledgement that the lack of improvement in activity levels could indicate that CBT is not an effective treatment - they act as if we can be certain that subjective questionnaire scores are a true and accurate measure of fatigue levels, and that objectively measured levels of activity can only be used to observe the manner in which CBT effectively reduces fatigue. The paper above will include references to the three earlier pro-CBT studies which measures were taken from.
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  3. charityfundraiser

    charityfundraiser Senior Member

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    Thanks. Heh, my other question was how to spell it. I tried Googling both and got more results for actimeter but both seem to be used.

    The paper above also references the following paper as describing the Actometer in more detail.

    Identifying physical activity patterns in chronic fatigue syndrome using actigraphic assessment.
    http://www.ncbi.nlm.nih.gov/pubmed/11164063

    I happened to come across the following article when searching about Actilog V3.0. Apparently it's not just CFS patients who have this finding of reported increased activity not matching actometer results.

    Can the Web Help Doctors Get RA Patients Moving? Maybe
    http://www.mskreport.com/articles.cfm?articleID=1148

    "Rheumatoid arthritis (RA) patients who used an individualized, Internet-based exercise program may be more likely to get daily physical activity than their counterparts who only receive general information on exercise via the Internet, but their self reports of increased activity did not correspond with activity recorded by electronic monitoring devices, according to a study in the December 15 issue of Arthritis Care & Research."

    Weird. I could speculate on a couple reasons.
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  4. Esther12

    Esther12 Senior Member

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    I could well be completely wrong then! I always spell it 'actometer', so when I saw you say that you couldn't find much on google, I assumed that your spelling must be wrong. My spelling is often pretty poor though, so should not be trusted!

    Lots of treatments can lead to patients filling in questionnaires more positively without there being any real improvement in their condition (homoeopathy, etc)... there could be some alternative explanation here, but I'm not sure how likely that is.

    Thanks for the arthritis link, I though that this bit was funny.

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  5. Dolphin

    Dolphin Senior Member

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    Tiny correction. Order of authors: "Wiborg JF, Knoop H, Stulemeijer M, Prins JB, Bleijenberg G." so "Wiborg et al., 2010".
  6. ahimsa

    ahimsa Senior Member

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    activity monitoring in patients with orthostatic intolerance

    I'm curious about data from activity monitors (actimeter? actometer? accelerometer?). Is the data that's collected detailed enough to indicate when the patient was standing or sitting vs. lying down? Or does it only show motion vs. stillness, thus lumping together any type of stillness?

    In patients with any type of orthostatic intolerance there is a difference between being standing still or sitting vs. lying down even though all three of those might seem to most people to be a lack of any physical exertion.

    Thanks in advance for any information on how these activity monitors work. I've tried a bit of searching but I have not found any information on this particular facet of activity monitors.
  7. Dolphin

    Dolphin Senior Member

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    I've never seen any data that broke down activity into different postural positions.

    Of course, other things can affect people with ME/CFS as well as activity, orthostatic stress: cognitive stress, emotional stressors, physical stressors (e.g. heat, cold, etc.), etc.
  8. charityfundraiser

    charityfundraiser Senior Member

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    Yeah, those were my questions too. If it's just a pedometer that counts steps, that doesn't tell the difference between walking and running, sitting and lying down, slow or fast. But, I did look up their references about the Actometer (Actilog V3.0) they used and it appears this is more sophisticated.

    Identifying physical activity patterns in chronic fatigue syndrome using actigraphic assessment.
    http://www.ncbi.nlm.nih.gov/pubmed/11164063

    I think this should be able to tell the difference between walking and running, slow or fast, but I'm not sure it could tell the difference between sitting and lying down, or awake lying down and sleeping. That is one of my speculations for the actometers failing to find any significant difference in activity when there is reported increase in activity. Being able to sit all day is a lot better than lying down all day, but I'm not sure this actometer can tell the difference.

    [​IMG]
  9. charityfundraiser

    charityfundraiser Senior Member

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  10. Artstu

    Artstu Senior Member

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  11. WillowJ

    WillowJ Senior Member

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    also, actimeter data was dropped from the PACE trial (it was in the protocol and measured at baseline, but no further data is given and the authors say they deemed it burdensome to the participants or some such, by way of justification for changing the protocol in this way).

    If I'm not mistaken, same scenario all over again in FITNET.
  12. Don Quichotte

    Don Quichotte Don Quichotte

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    There was a trial published in the NEJM regarding asthma patients, with mild-moderate disease.

    http://www.nejm.org/doi/full/10.1056/NEJMoa1103319
    They compared treatment with a ventolin inhaler, to treatment with various types of placebos, and to no treatment at all.
    They measured peak flow but also asked patients to document their dyspnea score-which was how they perceived their shortness of breath.
    Interestingly all forms of treatment had a similar effect on the dyspnea score (as compared to no treatment), but only ventolin led to significant improvement in the peak flow measures.
    The conclusion of the authors was that patient subjective scores are unreliable and only objective measurements should be used in clinical trials.
    But, there was an editorial that questioned this approach and asked if what we can measure is more important than what the patient feels.
    http://www.nejm.org/doi/full/10.1056/NEJMe1104010
    After all patients don't come to the physician because they have an abnormal peak flow measurement but because they have breathing difficulties that interfere with their life.
    Treatment with ventolin (or any other medication) has its risks and maybe this risk is unjustified if we can achieve the same results with saline.
    The question that remains unanswered is what would be the long term outcome of patients with mild-moderate asthma who receive treatment that only makes them feel better, without affecting objective measurable parameters.
    Probably there are situations in which it does matter and situations in which it matters less.

    But, modern medicine has probably been focusing too much on measurable so-called objective parameters and too little on how patients experience their illness and what makes them feel better (or worse) physically and emotionally.
    This very important/essential part of medicine was gradually left in the hands of complementary healers, therapists and probably in recent years also patient support groups. Many physicians have mostly become prescription writing technocrats.

    what does a patient want-to have a normal EMG or to be able to walk? To have increased activity measured objectively or to be able to resume his/her social and professional life? To have his own subjective feelings being recognized as real, or to have to constantly find "objective" evidence that serves to prove it? To be given help and support to lead a normal life as possible, or to have normalization of some lab value?

    Trying to gain a better understanding of the biology, and possibly better treatment approaches, should not come in place of humanistic skills and a committed and healing relationship based on mutual trust and respect. A physician can't make an amputated leg grow back, but he/she can help that person learn to live with one leg.
    Bio-markers and objective measurements should be used in research and to gain a better understanding of the disease, and develop better management approaches. they can also be used to support a sound clinical diagnosis, or as an aid to assess response to treatment , but they should not be used as a way of deciding if a patient is truly ill or not.

    Helping patients find better ways to live with their illness, is welcome. Trying to convince them that they are not ill, or that they should receive treatment that clearly makes them feel worse because their measurable tests are normal, is not.

    It is also unreasonable to blame patients for focusing too much on their symptoms, when they are constantly sent to find explanations for them so that they will be seen as "real".

    Eliot Slater wrote many years ago, what is as true today:

    The diagnosis of hysteria is all too often a way of avoiding a confrontation with our own ignorance. This is especially dangerous when there is an underlying organic pathology, not yet recognized. In this penumbra we find patients who know themselves to be ill but, coming up against the blank faces of doctors who refuse to believe in the reality of their illness, proceed by way of emotional lability, overstatement and demands for attention ... Here is an area where catastrophic errors can be made. In fact it is often possible to recognise the presence though not the nature of the unrecognisable, to know that a man must be ill or in pain when all the tests are negative. But it is only possible to those who come to their task in a spirit of humility.


    Eliot Slater, Diagnosis of Hysteria, British Medical Journal, 29 May 1965, p. 1399.
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  13. Esther12

    Esther12 Senior Member

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    I'm still uncertain about the placebo affect, but it does increasingly look as if this is the case, and that a lot of the claims about placebo were just magical thinking. It's only really my deference to authority, and sense that 'important' people shouldn't have got this so wrong that still makes me think that there could be something more significant there.

    This so often seems to go wrong, I think that I'd prefer a medical system without it.

    ps: Thanks for the link to that paper.

    pps: Welcome to the forum too!
  14. oceanblue

    oceanblue Senior Member

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    Welcome to the forum, Don Quichotte - that was some debut.

    I'm always interested in NEJM studies and that Eliot Slater quote is a gem; I'm not sure his successor at the BMJ today shares his view.
    I completely agree that real-world outcomes are what matter. Nonetheless, the concern remains that small improvements in self-reported function might not reflect real-world gains due to response bias. Are patients really able to walk more (for instance), or are they just more likely to report it because they are in a clinical trial? There's some discussion on that theme here.

    Thanks for a great post.
  15. Don Quichotte

    Don Quichotte Don Quichotte

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    Thanks Oceanblue,

    I agree with that. In fact many times results of trials are more impressive than real world effects of the same intervention or medication. And there are numerous reasons for that.

    My biggest concern is that there is too much emphasis in modern medicine on "objective" evidence.
    This leads to many flaws in the management of various medical problems. such as:

    Correcting surrogate markers, which may or may not be relevant to the disease process. (see the on-going debate on cholesterol lowering medications for instance)

    The wrong assumption that what you can't see doesn't exist. (similar to the notion of the kangaroo in "Horton hears a who"), and no matter how much evidence accumulates to show the fallacy of this approach, it is always seen as an exception that doesn't change the rule.

    The artificial discconect between the "body" and the "mind", which leads to the flourishing of pseudoscience in which everything that has objective proof is "body" and everything that doesn't is "mind". (for instance peptic ulcers were caused by emotional stress, until H. Pylori was found).

    The thought that every "real" disease (=one in which there is objective evidence) can and should be treated with pharmacological agents, without considering the side-effects and potential harms.
    whereas symptoms alone should not be managed with such agents. (the exception is anti-depressants which are pharmacological agents that although never proven to be better than placebo can be thrown at patients with out evidence for anything).

    The "ruling out" of diseases based on normal test results, even when the clinical symptoms are unquestionable and obvious.

    I don't know if you have read Chloe Atkin's book- "My imaginary illness". But, the way she describes her appt. with a neurologist and the way he treats her before and after he gets her tests results is a very good example of the hazards of this approach.

    Just so that you understand, this patient did not have mild or hardly noticeable known (and supposedly well understood) neurological illness. This is taken from another part of the book:

    I am a physician, but also had some personal experiences that made me want to change this. (although, as the name I chose implies, I realize that this is to some extent like fighting wind-mills).

    Again, I am not saying that there is no place for well conducted clinical trials and basic research aimed at gaining a better understanding and finding better treatment approaches. On the contrary, I think it is essential for the advancement of medicine and have always been involved in such research myself.
    yet, I don't think that a more humanistic approach to the individual patient is mutually exclusive.

    thanks Esther,

    I fully agree with you that

    But, this in my opinion is more of a reason to find the way to make it go right, by trying to understand why it is so and correct those misconceptions.
  16. oceanblue

    oceanblue Senior Member

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    Hi Don Q

    Good to have a physician on board. And I thoroughly agree that robust medical research and a more compassionate respone to patients are not mutally exclusive. In fact, "The wrong assumption that what you can't see doesn't exist" is a perfect example of failing to properly understand medical research.

    Early in my own illness I was shocked by the barely disguised contempt of some of the consultants treating me; they didn't seem to think that they, or anyone the knew personally, could possible respond with reduced activity as I did to the severe pain and fatigue I was experiencing. In fact, they were sure the symptoms were the direct result of inactivity. I was treated as merely object, not another human being. I currently have an excellent and empathetic consultant who is entirely comfortable with the fact that much remains unknown around the illness.
  17. Don Quichotte

    Don Quichotte Don Quichotte

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    I guess that this is unfortunately the experience of many who have diseases that don't fit the "box", or are not neatly explained by the current knowledge and understanding of medicine. I am glad that you too have eventually found someone who is different.
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  18. WillowJ

    WillowJ Senior Member

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    welcome to the forums, Don Q. It's encouraging to read a physician talking about how to compassionately treat patients who are "not neatly explained by the current knowledge and understanding of medicine"--and actually understanding how to do this--while advocating the pursuit of genuine science in research. :Retro smile:
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  19. Don Quichotte

    Don Quichotte Don Quichotte

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    Thank you,

    It's encouraging to meet a group of patients who despite less than ideal experiences with some members of the medical profession and despite a debilitating and very poorly understood illness don't lose their trust in themselves, in modern medicine or in those physicians that genuinely want to help despite the limited knowledge and understanding of this illness at this point.
  20. Snow Leopard

    Snow Leopard Senior Member

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    Hi Don Quichotte,

    I think the failure of using a specific 'objective' marker is due to the reductionistic nature of it - that improvement on a single variable reflects improvement overall.

    I very much support patient driven selection of suitable outcomes.

    In the case of Chronic Fatigue Syndrome, which do you think patients are more likely to feel is important with regards to improvement:
    (a) A 15% reduction in reported fatigue on the Chalder Fatigue scale
    (b) A 10% sustained increase in day to day activity levels with no change in number of reported symptoms?

    It is notable that none of the questionnaires typically used in CFS studies were written in a collaboration with patients. In fact this was a major criticism of a recent review of the questionnaires used in studies on CFS. http://www.ncbi.nlm.nih.gov/pubmed/21590511

    We cannot therefore conclude that the questions are well chosen to reflect the subjective experiences of patients. I also suggest that a poor choice of outcomes, including questionnaires challenges the quality of a clinical trial.
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