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Trial By Error: A Sneak Preview of Next Week’s Post 27 DECEMBER 2017

Discussion in 'General ME/CFS News' started by Lilpink, Dec 27, 2017.

  1. Lilpink

    Lilpink Senior Member (Voting Rights)

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  2. Barry

    Barry Senior Member (Voting Rights)

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    Last edited: Dec 28, 2017
  3. Barry

    Barry Senior Member (Voting Rights)

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    I think David must be right about this. Fundamentally the existing medical service is not being used as-is for this study, but instead the study is modifying how the service is applied, and as a result children are being allocated to treatments they would not normally have been referred to. It doesn't matter, I don't think, that the treatments are the same (naff!) standard treatments. The key facts seem to be:-
    • Children being newly diagnosed with ME/CFS within the study, are by definition not being so diagnosed within the existing service.
    • Those children newly diagnosed within the study, are being offered (and most of those received) a standard treatment that they would not have received within the existing service.
    • From the above, the intervention (standard treatment) was not something already offered to the children before the study began; indeed the treatment was only taken as a direct result of the study, as part of its evaluation.
    The following from the paper confirms that the study did not simply stop at newly identifying children with ME/CFS, but also followed through as part of the study by allocating them to specialist services they would not otherwise have been allocated to. I think it is a slam dunk.
    Treatment being newly allocated as part of a study, is not evaluating an existing service; by definition it is assessing a modification to existing services, and that modification involves allocating treatments differently to the existing service. Moreover, those newly-allocated treatments are being done within the scope of the study itself. It makes no odds that the treatments are standard, their allocation/referral is not - full stop.

    So what is wrong with all that one might ask. Well, nothing in principle ... except it is research, by the MRC's definition, and so the study must be liable to ethical approval.

    Sorry, it's very late and I suspect I've rambled / repeated myself a bit, but the essence of the above is valid I think.
     
    Last edited: Dec 28, 2017
  4. Esther12

    Esther12 Senior Member (Voting Rights)

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    Always good to have different people going through the process of checking things out.

    It's seems so clear from the paper that this is not just the assessment of a current service, but an experiment on a new form of service put in place for that piece of research. It will be interesting to see how COPE spin it.
     
  5. Lilpink

    Lilpink Senior Member (Voting Rights)

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    It's very good news that Tuller is properly assessing this paper and its faults and limitations, not to mention highlighting the absurd behaviour by BMJ Open in response to queries about anomalies by the (undisclosed) individual who did many grueling months of groundwork uncovering this debacle. I think we need to be appreciative of both of them.
     
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  6. Lilpink

    Lilpink Senior Member (Voting Rights)

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    I'm aware of some limitations COPE might have in properly assessing a BMJ Open paper. I think it might be useful if some of the boffins here took the strain in terms of 'investigation' to see what vested interests might (or might not) tie COPE and BMJ Open together. Just a thought...
     
  7. Peter Trewhitt

    Peter Trewhitt Established Member (Voting Rights)

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    Playing devil's advocate you could argue that this was an attempt to evaluate how effective the current referral system was for children with CFS/ME in this catchment area, however this evaluation was undertaken by doing something new, considering all children with low school attendance for potential CFS/ME.

    Presumably Prof Crawley's existing service only sought to assess children where someone felt there was reasonable grounds to suspect they may have the condition. However going into this study they would be expecting to assess a significant number of children where there would be no grounds for suspecting CFS/ME. Ignoring Prof Crawley's historical problems distinguishing between the symptom of chronic fatigue and the condition of Chronic Fatigue Syndrome, which may explain why she perceived all children with low school attendence as potential referrals, this still means they are doing something new, assessing children for a condition which no one suspects they have.

    Effectively this is investigating a potential new screening process, which was not part of the existing service. It is not to say that a screening service would be a priori bad, but there are ethical considerations that should be considered when going into a new situation knowing that you will be undertaking medical assessment of a significant number of children for something they will not have.

    Further, ignoring the fact that most people reading this forum will believe that referral to Prof Crawley's service is potentially harmful to children with CFS/ME meaning there would be some parents/guardians anxious to avoid referral to Prof Crawley's service, there is still the very complex question of what constitutes free and informed consent by parents/guardians in the potential legal minefield of non school attendence. This alone should make all involved want to be certain that all potential ethical angles are considered.

    Evaluating a new screening service for children with low school attendance records surely is not an evaluation of an existing service, even if it has the fortunate side effect of casting light on the effectiveness of the current referral system and so requires ethical approval as new research, but over and above this the Health and Education services involved should be asking and answering important questions about the ethics of such medical screening for non school attenders.
     
    Last edited: Dec 28, 2017
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  8. Peter Trewhitt

    Peter Trewhitt Established Member (Voting Rights)

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    Thinking back to when I was still working as a clinican (Speech & Language Therapist) seeking to improve referrals from specific locations the service already at least theoretically covered, we provided information and training to the staff in those locations, but only offered assessments to those that the staff in discussion with carers/parents/guardians and the service users themselves felt we might have something to offer them.

    In general blanket screening of a specific groups was not considered, and the only situation in which I was involved in such related to the closure of the large mental health hospitals in my area in the 1980/90s where historically we had had no service provision and so had no idea what the implications for community services were. It was treated as a descrete research project which required ethical approval.
     
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  9. large donner

    large donner Senior Member (Voting Rights)

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    Im somewhat confused, where exactly is the LP part of an existing service for ME? Or am I getting mixed up by something.
     
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  10. Peter Trewhitt

    Peter Trewhitt Established Member (Voting Rights)

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    It is easy to mix the two issues as both are being actively discussed in new threads. The LP trial was Prof Crawley's SMILE study that claims to demonstrate that the Lightening Process was effective in combination with specialist medical care. This has a big question mark over the methodology and its ethical approval as a feasibility study morphed into a full research study, leaving concerns over what got appropriate ethical approval.

    The current thread considers Prof Crawley's screening of non school attenders for CFS, which was considered by her and others as a service evaluation not requiring ethical approval, but by many others as new research which should have had ethical aproval.
     
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  11. Amw66

    Amw66 Senior Member (Voting Rights)

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    This uses an old idea - Jane Colby ( tymes trust) and Dr Elizabeth Dowsett did a school absence study in the 1990s ( i think) and it is from this that the " main reason for long term school absence" came about, not EC. From their study it would be ME being assessed, with little chance of CF conflation. There is no doubt that some children struggle to gain a diagnosis, by which time much damage is done, but perhaps educating GPs who have seen them pass through surgeries with a myriad of symptoms ( generally not strung together) would be a better way of
     
  12. Amw66

    Amw66 Senior Member (Voting Rights)

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    Investing time and money. The old school " bedrest" would benefit from a repackaging and promotion - if we had known to do nothing, there would be a better prognosis.
     
  13. Adrian

    Adrian Senior Member (Voting Rights) Staff Member

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    I think that in itself makes it not a service evaluation from:
    http://www.hra-decisiontools.org.uk/research/docs/DefiningResearchTable_Oct2017-1.pdf

    I wonder if another important question is are they still offering this as a service.
     
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  14. MEMarge

    MEMarge Senior Member (Voting Rights)

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    @Amw66 or anyone else. Did the Dowsett and Colby research cover school age 4-18, or just secondary. I ask because EC seems to emphasise that she was the main person showing CFS in Primary schools.
    Does anyone have a link to the D and C paper, I only seem to be able to access parts of it. Thanks
     
  15. Amw66

    Amw66 Senior Member (Voting Rights)

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    I think there' s a link on TT website. I' ll see if i can find it.
     
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  16. Amw66

    Amw66 Senior Member (Voting Rights)

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    Abstract and summary. I can request full paper frm TT as i' m working with Lesley Scott re educational provision
     

    Attached Files:

  17. MEMarge

    MEMarge Senior Member (Voting Rights)

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    Thanks Amw66.
    I assume that as they state that the average age was 13, with a peak prevalence of 15, there must have been significant numbers of 11 and under, ie primary.

    Good luck with your work on educational provision
     
  18. Barry

    Barry Senior Member (Voting Rights)

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    See @Peter Trewhitt's response.
     
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  19. Amw66

    Amw66 Senior Member (Voting Rights)

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    Thanks MEMarge. I' ve also requested a copy of original paper via Researchgate - will provide a copy when in receipt of same.
     
  20. Peter Trewhitt

    Peter Trewhitt Established Member (Voting Rights)

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    My ME has it's origins in a bout of glandular fever, but I often wonder what would have happened if I had had a period of convalesance rather than going back to work after several weeks, then being off for several weeks more and so on and so on. I will never know the answer but wonder if my pushing to get back to work as soon as possible was a contributory factor in developing ME.

    Is the old fashioned idea of convalesance another one that we should revisit? In Germany they still have the idea of taking a 'cure' available as part of everyone's health insurance system, it can be as part of recovery from an acute condition or in response to more general symptoms/situations, and, though as a child I remember the NHS had convalesance hospitals, it is a concept that has virtually disappeared from modern British health care.
     

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