August 8th, 2016: Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis
Jody Smith joins with other ME voices in honor of Understanding and Remembrance Day for Severe Myalgic Encephalomyelitis.
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Discussion in 'General ME/CFS Discussion' started by charityfundraiser, Mar 5, 2012.

  1. Don Quichotte

    Don Quichotte Don Quichotte

    Snow Leopard,

    I fully agree with everything that you say.

    When I wrote a patient education booklet for my patients, I gave the draft to a mixed population of my patients (with regards to education level etc) and changed it according to their comments, because it was meant to be understood and useful for them not for me.
    When I wrote a consent form for a clinical trial I changed it according to questions I was asked by patients and didn't think about before and also made changes to the protocol (when possible) to accommodate their needs and concerns.

    Physicians are there to help their patients. Our role is to improve our patients quality of life and prolong their life.
    I know that some physicians think that they know better than their patients what is right for them. I personally don't share this approach. I agree that there are times when patients are confused or overwhelmed, and need our help in making the right decision, but when they are in that situation they will clearly say that and ask our help in making such decisions, if they know they can trust us.

    This has nothing to do with "objective" vs. "subjective" measures.

    I think a patient can have significant improvement in the daily activity levels, his/her contribution to the society he/she lives in without having any improvement in the actometer measurements . Who said that activity has to be physical? who said that having to use a wheelchair to get from one place to the other makes you a less valuable person? Who said that using tools and aids or even the physical help of others in what you can't do on your own is wrong? Who said that being ill makes you a less valued member of the society you live in? Who said that coming to terms and accepting a physical disability and finding the best way to lead a productive life with it is wrong?

    I believe the specific trial you are referring to is the PACE trial and I have significant criticism regarding the methodology as well as the data presentation of that specific trial. The fact that they did not use actometers is only a minor issue.
    I was quite surprised, for instance, that none of the reviewers noticed that they concealed a remarkably high number of SAEs (8-10%). this number only appeared in one table and in the supplementary material where it is lumped together for all groups of treatment. The abstract mentions a very low rate of Serious Adverse Responses, which is not a commonly used term in medical clinical trials. You wouldn't accept such a high number of medical complications in a group of young and healthy patients, and the fact that the investigators did not think those were related to the treatment is irrelevant, because no one knows what are possible consequences of GET or CBT in this group of patients. (just for comparison, a similar level of adverse events was seen in patients with moderate myasthenia who were treated with cell-cept, in the treatment group). Also, they only mentioned that specialist care was mostly delivered by psychiatrists (again this only appears in the supplementary material), so it is not clear what the study treatment was compared to (treatment with antidepressants and a pat on the head?). The average objective improvement is "nothing to write home about", mostly if you consider the price in potential harm and costs. Further more, in the discussion they say that the response to psychological interventions is not a proof for a psychological etiology. This statement is true in general, but doesn't make sense when your working hypothesis for using this treatment was a psycho social model.

    In fact, I did not find any mention of how the questionnaire being used was validated. I may be wrong, but based on what was written by Wessley in the JNNP, it seems that the questionnaire he invented as a young and inexperienced consultant, was the base for it.

    I may be wrong, but it seems to me that those people "fell in love" with their ideas, the academic promotion and power they got from it, and this has made them lose site of the reality. I think they are deceiving themselves as well as trying to deceive their patients. I personally think they lie to themselves much more than they lie to their patients.
    zzz, WillowJ, Dolphin and 2 others like this.

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