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  1. Jonathan Edwards

    Journal of Medical Ethics - Blog: It’s Time to Pay Attention to “Chronic Fatigue Syndrome” (2019) O'Leary

    That may well be true. The balance of mates on the committee may be fairly even. No, but everyone on the committee is likely to be brought up to speed on the fact that Cochrane decided to retract it but discovered that their rules did not allow this if the authors refused. People like Luis...
  2. Jonathan Edwards

    Journal of Medical Ethics - Blog: It’s Time to Pay Attention to “Chronic Fatigue Syndrome” (2019) O'Leary

    Maybe that sentence should have been a bit longer, i.e. ... cannot be presented to NICE as a meaningful opinion with any chance of being taken seriously. The point being that there are at least 8 people on the NICE committee who know that it cannot be taken seriously and will say so. In fact all...
  3. Jonathan Edwards

    Journal of Medical Ethics - Blog: It’s Time to Pay Attention to “Chronic Fatigue Syndrome” (2019) O'Leary

    I think that is in a sense true. And I think it is because the general public want eminence based medicine and psychosomatic explanations. BPS is really just a funny sounding name for the popular prejudices pandered to by the editor of the Daily Mail. But within the medical machinery a removal...
  4. Jonathan Edwards

    Dr Sarah Myhill on The ME Show (series 2, episode 6)

    I fear it's just random nonsense. Sort of mitochondriopsychosocial.
  5. Jonathan Edwards

    Journal of Medical Ethics - Blog: It’s Time to Pay Attention to “Chronic Fatigue Syndrome” (2019) O'Leary

    Yes, at least as a research project. So why has nothing been published that sorts this out? OI is a symptom and to establish that someone has OI all you need to do is ask them. The cause might be postural hypotension but in postural orthostatic tachycardia it is still not clear what might be...
  6. Jonathan Edwards

    Journal of Medical Ethics - Blog: It’s Time to Pay Attention to “Chronic Fatigue Syndrome” (2019) O'Leary

    I think things are much closer than they once were. As I see it the Cochrane exercise review can no longer be presented to the NICE committee as meaningful opinion. Whatever the technical status the editor in chief made it clear that he did not think it was of a standard consistent with...
  7. Jonathan Edwards

    Blog: Is IAPT ‘too big to fail?’

    Closer to home, however, it’s clear that however positive the latest headlines about IAPT may be, all is far from well. Levels of attrition among clients remain high, levels of staff burnout and low morale are at epidemic levels, and services seem to be haemorrhaging staff. I am tempted to say...
  8. Jonathan Edwards

    Journal of Medical Ethics - Blog: It’s Time to Pay Attention to “Chronic Fatigue Syndrome” (2019) O'Leary

    I don't buy those. I have been in this situation myself and I got on and did the research without the dollars, risking my reputation in the process. To base a service on unsubstantiated tests is laziness and is unethical. As simple as that.
  9. Jonathan Edwards

    Journal of Medical Ethics - Blog: It’s Time to Pay Attention to “Chronic Fatigue Syndrome” (2019) O'Leary

    Well you would be taking exactly the road I would take. I agree with all that post. I am not sure what more extreme road anyone is taking.
  10. Jonathan Edwards

    Journal of Medical Ethics - Blog: It’s Time to Pay Attention to “Chronic Fatigue Syndrome” (2019) O'Leary

    Interesting points, but thinking about it I am pretty sure the paternalistic approach is pervasive in 'biomedical medicine' too. My rheumatological colleagues would not tell patients much about drugs maybe not working or not actually producing recovery. Being positive is pervasive in medicine...
  11. Jonathan Edwards

    Journal of Medical Ethics - Blog: It’s Time to Pay Attention to “Chronic Fatigue Syndrome” (2019) O'Leary

    I sympathise with what you are saying. There probably are ways of doing research that will prove causal links, although they require a lot of work on developing methods. But the solution is in front of our noses. If it just accepted that the evidence base for exercise therapy is no good - and...
  12. Jonathan Edwards

    Journal of Medical Ethics - Blog: It’s Time to Pay Attention to “Chronic Fatigue Syndrome” (2019) O'Leary

    So why have the people doing this test not published some useful research so that we can include it in an evidence-based guideline. What we are left with is an anecdote and that is no use to anyone. The onus is on the people doing these tests to show they tell us something useful. Otherwise they...
  13. Jonathan Edwards

    Journal of Medical Ethics - Blog: It’s Time to Pay Attention to “Chronic Fatigue Syndrome” (2019) O'Leary

    The confusing thing is, @Sean, that your account is probably closer to the BPS account than the account of biomedical scientists and physicians (of a non-BPS type). There are 3 supposed views. 1. The BPS view that there are psychological or mental causes and these are different from biological...
  14. Jonathan Edwards

    Journal of Medical Ethics - Blog: It’s Time to Pay Attention to “Chronic Fatigue Syndrome” (2019) O'Leary

    I don't think that can be considered relevant. Treatment of rheumatoid arthritis or cancer frequently involves 3 months of time effort and money with no results. The difference is that adequate trials have shown that the chances of benefit are good enough to make that a reasonable risk.
  15. Jonathan Edwards

    Journal of Medical Ethics - Blog: It’s Time to Pay Attention to “Chronic Fatigue Syndrome” (2019) O'Leary

    I think it is important not to see all this is black and white (or White and Black maybe!). I have no doubt all sorts of people made suggestions last time but the decision was made by the committee. White was not in a position to 'get things changed'. I don't remember what it says about...
  16. Jonathan Edwards

    Journal of Medical Ethics - Blog: It’s Time to Pay Attention to “Chronic Fatigue Syndrome” (2019) O'Leary

    But the justification for the symptoms in the BPS model is that they arise from deconditioning secondary to the beliefs. If that were not so then there would be no need to do GET. A better approach would be a three day course of getting psyched up and standing on bits of paper - showing that...
  17. Jonathan Edwards

    Journal of Medical Ethics - Blog: It’s Time to Pay Attention to “Chronic Fatigue Syndrome” (2019) O'Leary

    A tilt table test does not prove orthostatic intolerance. Orthostatic intolerance is a symptom - it means 'not feeling well on standing up', nothing more than that. Postural orthostatic tachycardia is, in contrast a physiological response, but not necessarily one that causes OI. Some normal...
  18. Jonathan Edwards

    Hypothesis piece by Amy Proal, a microbiologist with ME/CFS

    I am sorry that you feel aggrieved, Amy. However, the words above indicate clearly that you do not understand the basic requirements of valid biomedical science. None of the treatments you mention are of any value to anyone as far as we know from the evidence. This forum was set up to take a...
  19. Jonathan Edwards

    Higher prevalence of ‘low T3 syndrome’ in patients with chronic fatigue syndrome: A case-control study (2018) Ruiz-Núñez et al.

    I will have to read the blog if I can summon the energy. But the second sentence is a non-sequitur. Dr Bateman stated that a third of ME/CFS patients are hypothyroid because their tests showed it. I presume this relates to a paper or at least a study that we saw about two years ago. Where...
  20. Jonathan Edwards

    Journal of Medical Ethics - Blog: It’s Time to Pay Attention to “Chronic Fatigue Syndrome” (2019) O'Leary

    It would be entirely a matter of whether or not those treating had been diligent enough in establishing that the treatment worked. You could ask was the treatment of rheumatoid arthritis with gold on the basis that it was an aberrant form of tuberculosis ethical. It was eventually, because a...
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