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    13th Invest in ME Research International ME Conference - 1st June 2018

    I think I recall a discussion of rationale in which they are hoping that repeated treatments might last longer. Anyone remember the exact quote? This depends a lot on the long term results, which are not going to come before a large number of patients have been treated and a lot of time has passed.
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    13th Invest in ME Research International ME Conference - 1st June 2018

    We already know there is a high misdiagnosis rate, largely due to under-investigated patients. Some estimates put the misdiagnosis rate at three in four.
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    HPV vaccination and risk of ME/CFS

    To make things worse, its entirely possible its the cumulative impact that leads to ME, and that none of these things are specifically responsible, for at least some patients. These kinds of confounds are very hard to tease out of data. Studies need to be specifically designed to find these...
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    Michael Sharpe skewered by @JohntheJack on Twitter

    We need a new dictionary to deal with this stuff. Harm means dying or winding up in hospital for a long period, or other similar damage. Worsening of an existing medical condition does not count. Recovery means anything from a major improvement to a severe decline, with the patient somewhere...
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    13th Invest in ME Research International ME Conference - 1st June 2018

    The point is a successful pilot trial is the best reason for new funds to be granted.
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    13th Invest in ME Research International ME Conference - 1st June 2018

    To me this is a conditional hope. IF, and only if, the problem is a metabolic trap like the four under investigation, then it might be quick, easy, and cheap to fix. If its something else this kind of treatment will not apply.
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    Michael Sharpe skewered by @JohntheJack on Twitter

    In any exchange like this its important to realise you are very unlikely to sway someone like MS. Its not about that. Its only to a lesser extent about reaching the general audience. Its most important to reach any scientists and medical practitioners. You don't even have to convince them. You...
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    HPV vaccination and risk of ME/CFS

    I think this is a major issue. The vaccine probably does trigger some cases of ME, and probably prevents some cases of ME. The issue is where the balance lies. I am not sure we are in a place where this can be studied yet, we need a reliable diagnostic test for ME first. If ME is on the rise...
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    Michael Sharpe skewered by @JohntheJack on Twitter

    The current claim with the GMC is probably more along those lines. Unfortunately I would need to know a lot more about UK law, and GMC rules, to say much. Its very much up to local laws and regulations. Scientific misconduct generally has no legal redress. The issue is that it can destroy...
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    Michael Sharpe skewered by @JohntheJack on Twitter

    There is only ONE issue we can show is scientific misconduct. One. The others are irregular and damage the study, but we cannot prove they are not due to bad study design, incompetence or stupidity. That one is the use of SD for calculation of normal using SF36PF data. Not only is it...
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    A general thread on the PACE trial!

    This is where the term psychobabble comes in. Anything that vague and ill-defined is not subject to quality scientific investigation. It is however subject to persuasive rhetoric instead of evidence and reason. We even see that in regard to ME and CFS with respect to fatigue. Even though we...
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    A general thread on the PACE trial!

    The problem is large areas of psychiatry, though not everything, are about as substantive as homeopathy. Imagine homeopathy became taught in medical schools around the world ... psychiatry is about that bad for the most part, with respect to hypotheses, evidence, and methodology. At least...
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    A general thread on the PACE trial!

    "Whilst we are aware of the concer ns raised about the PACE trial’s methodology, there has been no suggestion of fabrication or falsification of the data, or of plagiarism. We do not believe it is fair to characterise the researchers as determined wrong - doers. " There is however deliberate...
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    Michael Sharpe skewered by @JohntheJack on Twitter

    :wtf: Post Death Psychosis - The false belief syndrome in which people die and then think they can not engage in real life. If they could be made to exercise then they would show increased functional capacity. With CBT we can train them to overcome their false beliefs and fully engage in life...
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    Michael Sharpe skewered by @JohntheJack on Twitter

    Even a perfect study has risk of bias. Its intrinsic to all science, and all investigation. Science is about decreasing and accounting for bias, which is why we have things like randomisation, double-blinding, and controls. Randomisation on PACE was probably OK, but the cohort being randomised...
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    Michael Sharpe skewered by @JohntheJack on Twitter

    Actually human bias is just a small component. Confounds in cohort selection, for example, can severely alter outcomes if some factor is involved that affects the outcome and was not dealt with by randomization. Systematic biases, like in using the Oxford criteria, are also a big issue. The...
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    Me-ICC exclusions

    I tend to agree, with one important caveat. Depression is an inferred symptom. How do they know its not just an ME symptom they are wrongly diagnosing as depression? I think a lot of cases of depression are misdiagnoses, and other diagnoses might be better if we had the research needed to...
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    Me-ICC exclusions

    This is the main reason. In research it can demolish a study to have people with other conditions, even if they have the condition being studied plus some other condition. So in research there must be strict exclusions. So for example, I cannot enrol for most ME studies because I am classed as...
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    Michael Sharpe skewered by @JohntheJack on Twitter

    Good science is critical rationalism, ala Popper. They seem to practice positivism, or one of its variations. Shore up as much data showing you are right, and ignore everything else ... its up to someone else to show that you are wrong, and with this much data showing you are right .... Its...
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    Paper:Psychiatry As Social Control

    It depends, again. There are real illnesses here, as well as illnesses created by committees defining them. These are then labelled as mental in the process. Most of these are going to be social issues or brain disorders. "Mental" is an invented category, socially acceptable, with no objective...
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