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  1. Jonathan Edwards

    Building an evidence base for management of severe ME (including sleep management)

    The main target I see as objective evidence of reduced disability. And by disability I mean not being able to live a fulfilling life so it can cover all sorts of impaired abilities. Actometry might come in to that, as might employment and need for benefits - the things that did not change with...
  2. Jonathan Edwards

    Assessment of the scientific rigour of RCTs on the effectiveness of CBT and GET for ME/CFS: a systematic review (2019) Ahmed et al

    I agree and have given this opinion to NICE. There are ethical problems here that were never addressed initially and remain to my mind insuperable within anything like the current style of trial.
  3. Jonathan Edwards

    The Independent - What are the symptoms of ME and how is it treated? May 2019

    Yes, it is dispiriting to see such dumbed-down fluff that completely misses the point pretty much every time. If this is advocacy, who needs enemies?
  4. Jonathan Edwards

    Building an evidence base for management of severe ME (including sleep management)

    I am not sure which way you are arguing. If you are not intervening with help you cannot test for a pattern of effect. You can get a pattern of liability and symptoms but that tells you nothing about what might be worth testing to help. I agree that you might see correlations between activity...
  5. Jonathan Edwards

    Building an evidence base for management of severe ME (including sleep management)

    I agree that there is always a risk of an assumption about what researchers think is right. But a study if the sort I am thinking of would say in black and white, and maybe in bold in the information for patients that the study was being done precisely because nobody has a clue what is the right...
  6. Jonathan Edwards

    Building an evidence base for management of severe ME (including sleep management)

    That would be good and it is what the professionals say they do. But in terms of hard evidence how do yo do controlled trials on individuals - it is impossible by definition. The problem with 'personalised care' is that it is always theory drive - you theorise what would suit this person or...
  7. Jonathan Edwards

    Building an evidence base for management of severe ME (including sleep management)

    Maybe you have never seen a child with arthritis sitting in a buggy.
  8. Jonathan Edwards

    Building an evidence base for management of severe ME (including sleep management)

    Yes, it can be passive. There is no need to expend energy. Just to go through range.
  9. Jonathan Edwards

    Building an evidence base for management of severe ME (including sleep management)

    I actually think the situation for children who are ill is quite different. An adult who is unwell is aware of a need to protect their capabilities. A child has no sense of responsibility for their own capacity in that way. So an adult with arthritis struggles to maintain the range of motion of...
  10. Jonathan Edwards

    Building an evidence base for management of severe ME (including sleep management)

    I see no reason why not. Maybe there need to be several different sorts of studies with different emphasis. Measuring everything with high-tech equipment may not be practical for a general study but it would be for a more specialised one.
  11. Jonathan Edwards

    Building an evidence base for management of severe ME (including sleep management)

    But you cannot get a clear pattern of what helps unless you instigate some form of help. And you cannot tell if that is what makes a difference without a controlled experiment. Otherwise we follow the BPS approach - guess what is helping on the basis of no controlled evidence. What to me is the...
  12. Jonathan Edwards

    Building an evidence base for management of severe ME (including sleep management)

    There are certainly risks, although my assumption would be that plans would be tried out on people newly ill who had not yet developed their own plan. If plans are cross stratified, to include say four aspects of 'advice' then each subject would not specifically associate their grand plan with...
  13. Jonathan Edwards

    Building an evidence base for management of severe ME (including sleep management)

    Yes, I think measuring activity needs to be done in a sophisticated way and as part of a larger package of assessments. When it comes to analysing progress with different plans it is probably not essential to predefine primary outcome measures in the way usually done for trials. If plans are...
  14. Jonathan Edwards

    Assessment of the scientific rigour of RCTs on the effectiveness of CBT and GET for ME/CFS: a systematic review (2019) Ahmed et al

    It is not in any useful sense blinding. The concept of double blinding arose for drug treatments where patient and assessor are the key sources of bias. But for decades drug trials have been more rigorous than that. The treatment administrator has to be blinded too - so bottles of infusion came...
  15. Jonathan Edwards

    Building an evidence base for management of severe ME (including sleep management)

    Now having said all that there is something that I realise makes my idea very tricky. If you are advised to do something and at the same time told that nobody knows whether or not the plan is useful - as would be ethically required by any trial like PACE (which nobody involved seems to have...
  16. Jonathan Edwards

    Building an evidence base for management of severe ME (including sleep management)

    The trouble is that what we are concerned with, as I have recently been trying to make clear for NICE, is the psychology of gathering evidence. The irony is that the psychologists seem to be the least good at this. The need for either blinding OR objective measurement is to do with the...
  17. Jonathan Edwards

    Building an evidence base for management of severe ME (including sleep management)

    Absolutely right. Except that in a sense I am not asking for a scientific basis because a scientific basis is a supported hypothesis. All we need is an evidential basis. The fact that gold injections can help rheumatoid arthritis is not a scientific fact so much as just something for which we...
  18. Jonathan Edwards

    A general thread on the PACE trial!

    I wouldn't want to be in either of this guy's columns. People like this are as much the problem as any one else - giving advice from a position of ignorance (familiar?). A sceptic defers to nobody. He (or she) thinks.
  19. Jonathan Edwards

    Building an evidence base for management of severe ME (including sleep management)

    There is certainly significant harm that can come from rest without attention to problems. It is all too easy, particularly for for a child or adolescent, to end up with Achilles tendon contractors that will mean that they can never walk normally again. The warning in the guidelines is not...
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