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    ME Assoc: How Many People in the UK have ME/CFS?

    This is a really interesting 'nub' of it. I've had variations of it, but such is the communication style of the professions that I've learned over time you can't trust what you've been led to think, but also whilst they might 'get' something they think is PEM... and of course even I really...
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    ME Assoc: How Many People in the UK have ME/CFS?

    No worries I more than likely was implicitly thinking that.. just the opposite way around ie that it certainly doesn't help any funding etc for the illness and prognosis to get inadvertently hidden or disguised due to how the system had been set up for so many years. Ahh I think what I was...
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    Protocol Comparing effectiveness of physiotherapy vs drug management on fatigue, physical functioning, and episodic disability for [ME] in [PCC]... 2024 Sarker

    I can’t copy quotes from this using my phone - can someone scroll down to the drug management section under methodology and do so if they get there before I’m up to looking at this another way? I’m pretty shocked by it as there is a long list of about 8 meds many of which are hard core (and...
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    ME Assoc: How Many People in the UK have ME/CFS?

    I can’t remember where I suggested people would invest more in research if they knew how grim outcomes are but will re read. what I do imagine is that if GPs are being told CFS last three years max and we all gave up seeing it mentioning our condition to GP - because of how we are treated -...
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    Protocol Comparing effectiveness of physiotherapy vs drug management on fatigue, physical functioning, and episodic disability for [ME] in [PCC]... 2024 Sarker

    From what I can see there is no control group of any sort either it’s exercise in an institution, exercise via telemedicine vs drugs. I don’t know the exact appropriate control given the design flaws of choosing to do no objective measures etc too but my goodness this is like the forced choice...
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    General news about Fabricated and Induced Illness syndrome (FII)

    What I don’t fully get is how something can be put on a list so categorically without good science snd case studies to differentiate guven how many and how much the process costs the idea that funding more biomed physicians and support for ME/CFS so you don’t have the ‘just in case’ or ‘maybe...
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    General news about Fabricated and Induced Illness syndrome (FII)

    Just because I don’t know much about this but how is the court system and judges funded in these countries? I know that fir a number of years there has been talk of issues with delays and things to do with judges pay and legal aid snd I’m sure I’m missing more in the Uk I don’t know in the...
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    General news about Fabricated and Induced Illness syndrome (FII)

    And the knock on if you explore the council budgets and how much of it has to go on valid but also ‘contested’ processes in Uk vs how much they have overall. Some are going bust because they can’t meet legal obligations. Knock on effect of more money on this meaning less for adult social care...
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    ME Assoc: How Many People in the UK have ME/CFS?

    Ie tackling this rumour of ‘self-limiting’ and ‘most recover’ probably leading to it getting wiped off medical history im(if it was there in the first place) simply because the BPS model coerced most people to not mention it to medical professionals and ergo claim ‘must have recovered’ ?
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    Resources on why the Name “CFS” is problematic and “ME” or “ME/CFS” is recommended.

    100% agree that this point is more important than people give it credit for. Will continue this in a mo, next post. DO need to note that of recent times I've been hearing @Jonathan Edwards note of 'we should all be using ME/CFS' in my head a lot more recently just because we do ourselves no...
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    Engagement of mental effort in response to mental fatigue: A psychophysiological analysis 2024 Lorcery et al

    I think* (this might be influenced by looking at other papers it might be sitting within) they are trying to map 'behaviour' and use 'sympathetic activity' as some sort of indicator as to whether people have chosen to exert less effort (when they got tired) vs 'push through'. If you look at...
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    People with Inflammatory Bowel Disease Prefer Cognitive Behavioral Therapy for Fatigue Management: A Conjoint Analysis 2024 Emerson et al

    precisely. there should be someone asking why someone would actually do a forced choice of treatments that don't in this kind of research? there surely should be something of an ethics issue - either of them needing to be updated (if they hadn't anticipated someone would do something like this...
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    ME Assoc: How Many People in the UK have ME/CFS?

    Given what I've seen from individual's accounts and hear from eg people in BACME and beliefs of those who either are BPS or are being told things by BPS it has struck me that there is another useful, but probably more difficult campaign after this. Because length of time vs disability level is...
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    Engagement of mental effort in response to mental fatigue: A psychophysiological analysis 2024 Lorcery et al

    There is the following paper from Bray et al (2012) for example: Cognitive task performance causes impaired maximum force production in human hand flexor muscles - ScienceDirect That has some interesting references, but I can't see 'in full' (but a bit more than the abstract) which looks at...
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    Grip test results and brain imaging in the NIH study: Deep phenotyping of PI-ME/CFS, 2024, Walitt et al

    Just adding this paper as a link: Endurance time of grip-force as a function of grip-span, posture and anthropometric variables - ScienceDirect "The results indicate that the endurance time decreases significantly as the grip span deviates from the optimal in both directions. On the other hand...
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    Engagement of mental effort in response to mental fatigue: A psychophysiological analysis 2024 Lorcery et al

    Their main theory is that people who get tired choose to either further exhaust themselves doing the task properly, or choose to save their energy/effort by Harry half-jobbing. Although, just like Walitt, they don't seemed to have entertained the idea that maybe those who'd been exhausted before...
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    ME Assoc: How Many People in the UK have ME/CFS?

    Sorry I should have made it more clear. What I didn't understand is how you can know that the rate isn't going up, just as you don't know it isn't going down? - given even an actuary can't have figures/rates that noone is collecting (and for all we know eg with LC it could be that with correct...
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    ME Assoc: How Many People in the UK have ME/CFS?

    I don’t understand That depends on the death rate vs rate of getting it? And if more each year stay alive with it than die plus there are new cases and there isn’t a high recovery rate/it’s short lived for those then surely the logic is that it would be upward, how could all diseases be the...
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    Engagement of mental effort in response to mental fatigue: A psychophysiological analysis 2024 Lorcery et al

    Well this is a sinister and poor attempt at ‘replicating’ Walitts dodgy effort preference using stroop test before hand grip then claiming the format tests something related to effort and habituation instead of exhausting ill people then calling a spade a spade what the heck do these people...
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    People with Inflammatory Bowel Disease Prefer Cognitive Behavioral Therapy for Fatigue Management: A Conjoint Analysis 2024 Emerson et al

    Just sounds like something that in any other sector might be using what would be termed as mis -selling of treatment, facts etc very dodgy using forced choices And if their facts on outcome are incorrect then if it weren’t theoretical and not actual it would be a consent issue anyway even if...
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