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    The HERITAGE study (Health Effects fRom Infection sequelae: Tailoring services and Advancing GuidancE)

    But it might be a deterrent to hiring all the extra therapists and supervisors of therapists that the BACME plan entails.
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    The HERITAGE study (Health Effects fRom Infection sequelae: Tailoring services and Advancing GuidancE)

    There's one thread to pull that might unravel it - the fact that it's a waste of money, at a time when govt is looking for yet more cuts.
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    UK BACME ME/CFS Guide to Therapy 2025

    Internet search for 'grading in therapy' finds lots of explanations like this one: from https://www.otdude.com/students/introduction-to-grading-occupational-therapy-interventions/ So it's just the same assumption again: what pwME need is to be continually challenged to 'progress' by doing...
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    UK BACME ME/CFS Guide to Therapy 2025

    On page 29, in 'Section 4: Sustaining' ('To continue a focus on the person’s goals and an improved quality of life, whilst accommodating the demands of daily life over time') there's a subsection titled 'Emotional wellbeing', and the first bullet point under it is 'Self-management of grading'...
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    UK BACME ME/CFS Guide to Therapy 2025

    p. 31 Jobs for the boys (and girls).
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    News from the USA, United States of America

    nope
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    UK BACME ME/CFS Guide to Therapy 2025

    and there's no mention of PEM at all in that section about increasing activity. Like the only way they imagine things going is 'the new exertion feels bad to start with but then you get used to it'. Not 'feels OK the first time or the first few times and then you crash', which is the reality...
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    UK BACME ME/CFS Guide to Therapy 2025

    On rereading it, this line sums up the core issue for me: They're seeing the problem as 'patient does a bit more, feels tired/sore, gets anxious/discouraged, just needs a morale boost to carry on.' Rather than 'patient cleans the kitchen counters, then can't have a shower for the rest of the...
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    UK BACME ME/CFS Guide to Therapy 2025

    Always this tap-dance around 'flexibility' and 'as needed' (as decided by whom?) and 'likely to be successful but...', and putting the responsibility on the patient to know whether they're doing too much or not enough, but at the same time telling them they're not actually competent to decide...
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    UK BACME ME/CFS Guide to Therapy 2025

    especially as their model has no room for a scenario in which their involvement isn't needed. Patient recovers, or doesn't recover but grows more confident in managing despite the illness - tick in the box for therapeutic help. Patient shows no improvement or gets worse - more therapeutic help...
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    UK BACME ME/CFS Guide to Therapy 2025

    With the scattering of extra capital letters it reads like a random Facebook comment rather than something put out by a professional organisation.
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    [Abstract] Impact of [LC] on Physical Activity and Sleep: a Matched Cohort Study using Wearable and EHR data From [All of Us], 2025, Chen et al

    One thing possibly worth mentioning is the step count graph, which shows that most people's daily steps change very little around the time of acute Covid infection (a few plummet right down briefly, maybe because they forgot to put the Fitbit on that day, but even those bounce back up again)...
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    [Abstract] Impact of [LC] on Physical Activity and Sleep: a Matched Cohort Study using Wearable and EHR data From [All of Us], 2025, Chen et al

    So, if you use '200 clinical predictors' to classify people into 'probably healthier' and 'probably less healthy', you find that the second group take fewer steps on average and don't sleep so well.
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    United Kingdom News (including UK wide, England, NI and Wales - see separate thread for news from Scotland)

    or caught it from their children, who are impervious to it according to most of the medical establishment.
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    Evaluation of Interventions for Cognitive Symptoms in Long COVID, 2025, Knopman et al

    Or they'll cite it as proof that all three kinds of rehab are equally effective. Like they keep on citing REGAIN as proof that physical therapy and "behavioural support" are effective.
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    Daily stress and worry are additional triggers of symptom fluctuations in individuals living with Long COVID... , 2025, O'Connor et al.

    One easy way to reduce your stress level is to avoid assessing the severity of 8 of your symptoms every 3 hours for 24 days.
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    Evaluation of Interventions for Cognitive Symptoms in Long COVID, 2025, Knopman et al

    Unfortunately the 'Summary of Clinical Trial Results' has been written so as to suggest all three rehab approaches were effective. https://recovercovid.org/sites/default/files/summaries/RECOVERClinicalTrialNEURO.pdf Nowhere in the document does it state the fact that they found no evidence of...
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    Evaluation of Interventions for Cognitive Symptoms in Long COVID, 2025, Knopman et al

    The bar is set so low that I'm genuinely impressed with them for stating the lack of benefit, rather than digging out some vaguely positive speck of data and writing it up as their main finding. Also they seem to have more authors than participants. Generally that might be a red flag for a...
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    How do we stop charities and influencers spreading bio-babble about ME/CFS?'

    Vaccination would be another example. There is astonishing misinformation going around about vaccines, people promulgating the weirdest ideas, but this hasn't led to medics deciding to give up vaccinating anyone - because they are confident that what they have to offer is better than what the...
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