The 12th Invest in ME Research Conference June, 2017, Part 2
MEMum presents the second article in a series of three about the recent 12th Invest In ME International Conference (IIMEC12) in London.
Discuss the article on the Forums.

BMJ new paper : claims internet CBT successfully treats ME (!)

Discussion in 'Latest ME/CFS Research' started by Countrygirl, Feb 2, 2018.

  1. Countrygirl

    Countrygirl Senior Member

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    http://www.cambridge.org.https.sci-...rolled-trial/5D0DAAB8740D23688778FD2239317101

    I hesitate to post this on the research forum, but for what it is worth.

    This is a new paper just published in the BJ of Psychiatry which reports the successful treatment of ME with internet CBT.


    :bang-head::ill::depressed:
     
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  2. boombachi

    boombachi Senior Member

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    I am waiting for internet based get or Virtual Reality get :D
     
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  3. alex3619

    alex3619 Senior Member

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    If virtual reality GET worked I would be cured. I am very active, as a computer toon, in many games.

    What objective evidence of improvement or recovery might they provide? How do they excuse not doing that?
     
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  4. Countrygirl

    Countrygirl Senior Member

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    This rings a distant bell @alex3619 . Didn't some UK bright spark of a psych suggest that a programme of video game playing would cure ME?
     
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  5. boombachi

    boombachi Senior Member

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    A suitable measure of virtual graded exercise would of course be an increase in the amount of virtual steps that can be taken.
     
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  6. Mary

    Mary Forum Support Assistant

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    This is so awful ..... not much I can say but ARRGGHHHH!!!!! :bang-head::aghhh::nervous::sluggish:
     
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  7. Soup Dragon

    Soup Dragon

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    Does anyone know what diagnostic criteria/criterion they used? Was it "feeling a bit tired for a few weeks"? ;)
     
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  8. alkt

    alkt Senior Member

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    it seems that the bmj is now just another rag that will print any old rubbish without checking on anything inconvenient like scientifically proven facts.
     
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  9. Sundancer

    Sundancer Senior Member

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    Yep, those are the Dutch psychobabbleboys... One of them sat on the committee that doles out funds for research, all the 2 million for ME research went to his group... and none to proposals for real medical research. ( this is some years ago)

    A version for the public, hailing the the internettherapie has been published today on the website of one of our academic medic centra. Sneering at patient-associations who "claim that CBT is not effective and unsafe and that some people get more complaints doing this therapy".

    De onderzoekers concluderen dat gedragstherapie via het internet veilig en effectief is. Zij denken dat nog meer CVS/ME-patiënten kunnen profiteren van behandeling door een intensievere vervolgtherapie aan te bieden aan patiënten die na de internet therapie onvoldoende verbeterd zijn.

    the researchers conclude that CBT via the internet is safe and effective. They think that even more CFS/ME patients can have profit from this therapy by giving an intensive continuation to patents who have not enough improvement from the internet therapy.

    so...first they say it is effective, and then they give intensive continuation therapy for those patients who did not miraculously cure themselves... yay, that's a nice way to get working hours for psychologists isn't it.

    Pays well, when you have a job at an recognized hospital.
     
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  10. Sundancer

    Sundancer Senior Member

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    looking through this paper

    for measuring fatigue they used the Checklist Individual Strength, this is a list of 20 questions to be answered on a likertscale ( seven circles and make black the one that fits best to your idea,) I think it has a good validity, but...it is of course totally subjective.

    the questions are arranged in four groups
    subjective tiredness,( like I feel tired)
    concentration, ( like I have trouble to get my attention focussed)
    motivation ( like, i do not feel to do anything)
    bodily activity , this is the only objective measure, but from the 20 questions there are only 3 measuring this..

    this questionnaire is created by the some of the same people as the paper mentioned here.

    They say it is good for both the clinical practice and for research. I doubt the last one, but for clinical practice I deem it good.

    It thus has the same problem as other research, there is no objective measure used. Methinks when you use this scale for instance in a clinical practice, it can give a doctor a quick insight in whether a patient is stuck on a level, or going forward/backward.( all patients with fatigue I mean, for instance an older person recovering from an operation, or cancer and chemo. It is used for that)

    But to use a scale like this after
    iCBT consisted of seven modules aimed at change of fatigue-related behaviours and beliefs.9
    is in my eyes decidly not valid, i scanned the rest but became nauseous
     
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  11. Dolphin

    Dolphin Senior Member

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    They only used the fatigue subscale of the Checklist Individual Strength questionnaire not the other sections.

    However in this study they did actually report the results of actigraphy/actometers and there was a benefit found for Internet-based CBT.
     
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  12. Dolphin

    Dolphin Senior Member

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    This is in the British Journal of Psychiatry not the BMJ.
     
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  13. Dolphin

    Dolphin Senior Member

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    CDC/Fukuda criteria. Though 6 of the 240 didn't satisfy it.
     
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  14. FMMM1

    FMMM1 Senior Member

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    I think the issue of indicators is crucial. E.g. they could monitor the number of steps they take before/after treatment and see if that indicates lower fatigue. I think Fluge etc. may have used some wearable technology to evaluate fatigue. Also, what about other indicators such as brain lactate (MRS)?

    Separately this is taken from the UK Rare Disease Implementation Plan:
    "The core actions we intend to take to implement this objective are as follows:
     We will continue to develop and implement our genomic testing strategy
    for the NHS, including determining which tests will be recommended for which
    disease from single gene tests to multiplex panels and whole genome
    sequencing
    . This will be undertaken through the Rare Disease Transition
    Working Group. [2017/18 through 2019/20] [C10, C43, C44]
     We will continue to identify a list of specific interventions that can be taken to
    reduce delays in diagnosis, for example, identifying additional genetic tests
    for rare diseases that can be added to existing panel (genetic) tests. We will
    need to understand the clinical and cost effectiveness of these interventions
    within the context of wider pressures on NHS budgets. The pace and
    sequence of their implementation will depend on the extent to which they
    describe a pathway in which unnecessary steps are removed, or timeliness is
    improved or costs are reduced. [2018 through 2020] [C11]"


    Researchers from Melbourne (Neil McGregor) presented data showing higher incidence of certain mutations in ME/CFS e.g. langerin (OMF Community Symposium 2017). However, the findings need to be trialled in a larger group.
    Any views re the use of whole genome sequencing in ME/CFS?
     
  15. Hip

    Hip Senior Member

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    These results can be discounted, as they used a very vague ME/CFS severity score, which was the fatigue severity sub-scale of the Checklist Individual Strength (CIS) questionnaire. The fatigue severity questions are the following:


    But these sort of questionnaires are asking for a patient's subjective assessment of how he feels, and such subjective assessments are very unreliable. They can also be influenced by the "brainwashing" of CBT, where you may refuse to admit you feel tired even though you do.

    If is much better to ask the patient about objective measures of their health, such as the amount of hours they are able to spend out of bed each day, as Dr Lerner's Energy Index Point Score does.

    If you find you are able to spend more hours out of bed each day, that is an objective fact, and it is much more reliable to report on objective facts that subjective self-appraisals of how tired you feel.

    Or another objective measurement is asking the patient where they are on the simple ME/CFS scale of mild, moderate and severe.


    These psychologists should know better than to use unreliable subjective self-assessment.
     
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  16. alex3619

    alex3619 Senior Member

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    This is even better with actometer data. Take memory and subjective judgement out of the equation.
     
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  17. alkt

    alkt Senior Member

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    they always use subjectivity because they know it will give them the results they want. it is not science.
     
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  18. FMMM1

    FMMM1 Senior Member

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    I live in the UK as well (Northern Ireland).

    1) If this is being funded out of public money then this needs to be challenged i.e. why is flawed research being funded using public money.

    2) If this is being published in any journal then this needs to be challenged on the grounds the journal is publishing poor quality research.

    3) If this is being used as a basis for public policy then this needs to be challenged on the basis that policy is supposed to be evidence based; contact your member of parliament etc. Get an MP to ask a parliamentary question; try the opposition they may be happy to embarrass the government (who commission the research).

    Do any of 1 to 3 apply?

    Sorry just back from an ME/CFS meeting.
     
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  19. FMMM1

    FMMM1 Senior Member

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    Had a further look at this and the assessment criteria seem strange [see extract below]. They used an "actometer for 12 days" i.e. for the baseline (T0) and for T1 (6 months after randomisation) but not the T2 assessment.
    "T2
    Assessment consists of web-based questionnaires without wearing the actometer."


    Anyone help me out with this? I shouldn't spend time on it though; rather look at biochemical stuff rather than this.

    Thanks



    From http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=4013:

    "Baseline assessment T0;
    Baseline assessment consists of two visits to our centre and filling in questionnaires. Between these two test moments patients will wear an actometer for 12 days. The mean physical activity score over twelve days will be used to assess the level of physical activity.
    The assessments at baseline are part of the standard diagnostic procedure for all referred patients. For this study two questionnaires will be added, namely a questionnaire concerning internet behaviour and use of modern communication tools and the EQ-6d for quality adjusted life years.

    Internet therapy
    After allocation to a condition people will follow the internet therapy for a period of maximally 6 months.

    Assessment T1
    Assessment 2 will follow the same procedure as the baseline assessment. See for a description ‘baseline assessment’. T1 will be assessed 6 months after randomisation.

    Face to face CBT
    Face to face therapy will be delivered according to the protocol described by Knoop & Bleijenberg (2010). It will be offered to those participants who are severely fatigued and/or disabled at T1. For patients continuing therapy with face to face CBT after the cognitive behavioural internet therapy, we expect fewer sessions are needed for reducing fatigue severity and disabilities to normal, healthy levels. Both interventions (i.e. CBIT and possible face to face CBT) will be carried out by the same therapist.

    Assessment T2
    Assessment consists of web-based questionnaires without wearing the actometer. T2 will be assessed at minimal 6 months after the session with the therapist about results of T1.
    Drop-outs will be assessed directly after they drop-out and will be asked to fill in assessments at T1 and/or T2."
     
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  20. alex3619

    alex3619 Senior Member

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    Subjective, in a psychotherapy trial, is about measuring how well they persuaded the patient, not cured or treated the underlying pathology.
     
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