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    SMILE patient cohorts

    Cohort Participation This is my best effort currently at explaining cohort participation. There is some missing information and things don’t line up perfectly. The “results” text explanation in for cohort numbers reads This is [semi]consistent with "figure 1" but requires some explanation...
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    SMILE patient cohorts

    There are many possiblities I think. They may have recieved SMC and then after, SMC + LP. They may have been SMC + LP that changed cohorts, weren't included and then went back to SMC +LP. Or they may be the three from SMC that changed cohorts (note that 3 is the number that did so). I find the...
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    SMILE patient cohorts

    I wanted to make a thread separate from the letter's calling for retraction of SMILE so I don't bog them down with thinking aloud. Hopefully some members can look at what I’m saying and say – no you’re wrong or this is normal in clinical trials or you’ve misread something. Or if something is...
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    Trial By Error: An Open Letter to Dr Godlee about BMJ’s Ethically Bankrupt Actions

    I'm not sure if it's the results or just the graphs. I want to go back and recheck everything because it's possible my brainfog made a mess of everything. It's a very messy paper.
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    Trial By Error: An Open Letter to Dr Godlee about BMJ’s Ethically Bankrupt Actions

    Something else caught my eye. 1) In their final results, the authors reference a baseline dataset before cohort swapping because their reference numbers are 49 and 51. Whatever the case, those are not the numbers of patients that began LP and SMC sessions. They must have known this to...
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    Trial By Error: An Open Letter to Dr Godlee about BMJ’s Ethically Bankrupt Actions

    Well I think I'm totally lost - is the primary outcome graph mislabelled?! These numbers are consistent with the 11 patients switching and for 11 patients not followed-up on at primary outcome. Although it would require no one else was not followed up on. Which would be odd. But when you look...
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    Trial By Error: An Open Letter to Dr Godlee about BMJ’s Ethically Bankrupt Actions

    Neither have I! I have a longer reply I will post in this thread later when I have more energy, but it looks like this is what happened for 11 of 100 patients. @rvalle I agree with you largely, except I think it makes itself plain if you dig around in the paper a little. If the statistician for...
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    Trial By Error: An Open Letter to Dr Godlee about BMJ’s Ethically Bankrupt Actions

    A little addition to my previous comment: Of 51 patients, 9 were moved to SMC from SMC + LP, 2 of 49 were moved from SMC to SMC+LP post randomization. I have no idea why they were moved. Maybe I missed something. It seems possible this was because of the phone call consulation or "pre-coach...
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    Trial By Error: An Open Letter to Dr Godlee about BMJ’s Ethically Bankrupt Actions

    It appears you could drop out after the phone call but still be considered a participant in the original proticol. It is techincally part of the intervention LP + SMC intervention. It is said the child/his family decide together before treatment but after radomization if they want to...
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    3rd Annual Community Symposium on the Molecular Basis of ME/CFS at Stanford University, sponsored by OMF, 7th Sept 2019

    I agree politicians won't stick their necks out on me/cfs unless there is a breakthrough. They don't want to get mugged down in the psychosomatic and public perception about me/cfs. They need something to stand on.
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    3rd Annual Community Symposium on the Molecular Basis of ME/CFS at Stanford University, sponsored by OMF, 7th Sept 2019

    I'm glad these researchers are being honest and presenting negtive or mixed results and I'm glad they are organizing these conferences. Still many questions, most have been raised already, and no answers. And I'm humbled by how long I think it's going to take those answers to come. I guess the...
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    Trial By Error: An Open Letter to Dr Godlee about BMJ’s Ethically Bankrupt Actions

    Argh. Literally, yes. The methods don't make it clear if anyone dropped out like in the material you quoted. That would be pretty damning, but it seems this happened after they were participaing in the study. It's also not clear (probably delibrately left out) if they got pre-course coaching AKA...
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    Trial By Error: An Open Letter to Dr Godlee about BMJ’s Ethically Bankrupt Actions

    That is what is strange about the whole thing. You would think someone would have said "wait a second, what actually is this treatment?" And then you quickly get into Parker's background in hypnosis, children standing in a circle pointing and all that which is not hard to find and Tuller has...
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    3rd Annual Community Symposium on the Molecular Basis of ME/CFS at Stanford University, sponsored by OMF, 7th Sept 2019

    Hoping to hear progress from Hanson, Tompkins (really like this guy), and others. Interested in what the bio-engineer is going to be looking at (maybe mass producing the nano-needle).
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    Is ME a metabolic problem or a signalling problem?

    If it is a signalling problem, is it likely that the absolute volumes of the metabolite, or whatever factor, are normal since most everything has come back in the normal range? In any case, I guess a metabolic signalling makes sense to me. But I guess it's only as likely and neurologic and...
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    Non-Allergic Rhinitis

    @Ravn @rvallee I do not have gustory rhinitis, mine is constant. The anti-cholinergic spray is suppose to be quite good at rhinorrea, the production of mucus, rather than congestion, and so might be worth trying. Although it is quite drying apparently. That is an intersting reference to the...
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    Non-Allergic Rhinitis

    The first step is to see and ENT. The ear issue sounds like eustachian tube dysfunction. They could do a CT scan of the head to see if fluid is accumulating somewhere.
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    Non-Allergic Rhinitis

    Have you tried the nasal spray combination in post #6? It is the combo recommended by UpToDate. Could you provide references for that? I've heard Jennifer Brea mention that, but it's not something I've come across before.
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    New poor Guardian article "ME and the perils of internet activism" 28th July 2019

    I think it's this combined with what @Esther12 first said, it's a very effective narrative. Internet activists disrupting the efforts of humble, well-meaning psychologists. What a wild, entertaining article. I burst out laughing. How can anyone take this crap seriously? You can just tell the...
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    BMJ Archives of Diseases in Childhood: ''Editor’s note on correction to Crawley et al. (2018)'', 2019, Nick Brown. (SMILE LP Trial)

    I think we have a new precedent from BMJ. Personal reassurances after the fact are an acceptable way to get around core research guidlines. That's what I just read.
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