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    UK: Priority Setting Partnership for ME/CFS

    I think you have a point @Barry, we don't know what the full version sill be for sure. On the other hand, unless there has been an error of epic proportions, the ranking of these studies is accurate. As they are downgrading the "evidence" that has come out of the research of some very eminent...
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    UK: Priority Setting Partnership for ME/CFS

    Yes. Also of interest is that at least one of these studies, PACE, was described as a "thing of beauty" by Simon Wessely who has written a book on psych research & how to go about it. I'm sure he's had a hand, even if only in the background, with a number of the other studies too. The ranking...
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    "No More Mr NICE Guy…" by Prof. Brian Hughes

    :thumbup: And assume everyone is too stupid to "read the [tables in the] paper" as an emminent Oxford Professor might put it. Thank you @Brian Hughes!
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    BACME: Position Paper on the management of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS), Oct 2020

    Absolutely @Simbindi. Get as much proof and evidence to back our case as we can in there. At least it's in record then and if they ignore it when releasing the final guidelines they can't claim ignorance later. However, there's the letter of the thing and the spirit of the thing. The BPS mob...
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    BACME: Position Paper on the management of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS), Oct 2020

    If course they were, metaphorically at least. This is why, even if we haven't a hope of seeing real justice served, any of them who don't retract, renounce and correct their incorrect assumptions and conclusions of the past they cannot be trusted. They will simply try to carry on doing what...
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    BACME: Position Paper on the management of Myalgic Encephalomyelitis/ Chronic Fatigue Syndrome (ME/CFS), Oct 2020

    :thumbup: In my view any of the people who were pro CBT & GET or who were responsible for delivering those treatments need to openly admit they were wrong and acknowledge the mistakes & misjudgements. If they're just letting it slide and hoping to quietly move on then they simply cannot be...
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    UK - NHS England online tool and clinics for long Covid.

    And why would they when they already know that their therapy can't cause any harm? [Sarcasm] Seriously though, whatever "treatment" is on offer at the very least patients should be able to report adverse events and have them recorded properly. An adverse event being something meaningful like...
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    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    I would also suggest that while Cochrane's work on ME / CFS is left standing it will be to the detriment of long covid patients, no matter how good their work on covid is. All that will happen is that patients with long covid will find themselves misdiagnosed or rediagnosed with CFS bearing in...
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    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    Thank you @Caroline Struthers! :thumbup:. This is the crux of it. The likes of Wessely, White, Miller, Chalder, Crawley etc claim to have studied ME and focussed their interest on ME when that is blatantly not the case. They made the mistake of focusing on their delivery of a particular...
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    Independent advisory group for the full update of the Cochrane review on exercise therapy and ME/CFS (2020), led by Hilda Bastian

    No. I think it is high time took responsibility for the fact that more people are being harmed by these treatments they are legitimizing. I understand that there are extra pressures on everyone's time during the pandemic but if Cochrane had dine the right thing then it woukd have been done and...
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    Sick of the Sick Role: Narratives of What “Recovery” Means to People With CFS/ME, 2020, White et al

    I'd go further and say they if they were genuine they wouldn't have used the word "recovery" in the first place. There's no need to go torturing the meaning of the word until it squeaks. There are plenty of perfectly good words that are far more accurate they could have used such as...
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    The "chronic brucellosis" papers.

    Is it that back in those days peasants like us were unlikely to read and assess the evidence for ourselves and then have the temerity to question it? It it that those who did have an interest, also had a vested interest in specific interpretations and therefore chose that interpretation? Would...
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    The "chronic brucellosis" papers.

    I was tested too because I had a fair bit of contact with cows as a child and we drank unpasteurized milk, used butter made from it etc. The result was negative.
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    Almost ten years – is GET going?

    She can take a hike! :laugh: We have made significant progress with the draft guidelines - even if they are revised before they become their final version. We should allow ourselves to celebrate the win while accepting we still have a very long way to go and this struggle far from over. I'm...
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    Sick of the Sick Role: Narratives of What “Recovery” Means to People With CFS/ME, 2020, White et al

    :thumbup: Perhaps some researcher might like to do something constructive and carry out some research on how those conditions where doctors choose to redefine "recovery" are among the most stigmatized and where the outcomes are generally poorer than in the rest of medicine. Just because this...
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    Sleep meds poll

    I take mine a good hour before I go to bed - no later than 11pm. I can rarely sleep straight after going to bed so read a little fiction. As far as I'm concerned, if I'm awake in the wee hours and need the loo - which I will, at least obvious once, I need to switch the bathroom light on. If...
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    Sleep meds poll

    I'd forgotten until I read this. I've tried the supplement melatonin that someone who swears by it uses and it made no difference. Another friend who needs prescription melatonin for her child discovered she can buy it without a prescription in Spain. That worked for me. If memory serves this...
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    Sick of the Sick Role: Narratives of What “Recovery” Means to People With CFS/ME, 2020, White et al

    So we have recovery, preferred meaning of recovery, composite recovery.... Dear Peter White, may I propose Quantum Recovery as the next possible step. It is where the patient must adjust the expectation that recovery does not mean improved function or quality of life so that they may take up...
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    Sick of the Sick Role: Narratives of What “Recovery” Means to People With CFS/ME, 2020, White et al

    I think it's human nature to find meaning in things that happen and if the meaning they find is helpful to the individual, or at least not harmful, fair enough. It's when the subjective meaning helpful in their own situation is pushed on to others, especially others who through no fault of...
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