Germany: IQWIG Report to government on ME/CFS - report out now May 2023

Discussion in 'Other reviews with a public consultation process' started by Hutan, Jul 1, 2021.

  1. Solstice

    Solstice Senior Member (Voting Rights)

    It did, it didn't quite translate the first point accurately but it's a very useful coherent translation. Do you have to be a member to be able to use that button?
    alktipping, RedFox and Peter Trewhitt like this.
  2. Sean

    Sean Moderator Staff Member

    Preventing researchers and clinicians from preying upon desperate patients is one of the main reasons ethics committees came into being in the first damn place. :mad:
  3. SNT Gatchaman

    SNT Gatchaman Senior Member (Voting Rights)

    Aotearoa New Zealand
    Yes, it's available via my Mastodon instance ( when reading posts from any other instance, but I don't know how widespread that functionality is. It's very useful of course, but otherwise it would have been a manual collated copy-paste into Google translate or similar.
  4. Peter Trewhitt

    Peter Trewhitt Senior Member (Voting Rights)

    Playing Devil’s Advocate, there is much that would be helpful to know about the relationship between activity management and PEM and about the duration of PEM, particularly what aspects might be transient and what involve long term negative consequences.

    Here are some pacing ideas commonly used or pacing advice often proffered by specialist services:
    • Break any activity into smaller time limited components, that is for example rather than doing an hour long activity break it into six ten minute components. However we have no idea what the impact of this is on total activity levels comfortably achievable: how long should the gaps between these shorter components be; should these gaps involve rest or contrasting activity, eg switching from physical activity to mental activity; what form should any rest take, eg lying horizontal in a silent darker room versus sitting in a chair listening to music; etc.?
    • Keep activity levels below the PEM trigger point. However we do not know what is more significant, the intensity of any exertion or the period of exertion, is lifting ten stone once better or worse than lifting one stone ten times; what sort of time units should we be looking at for potential adverse events, for example if a twenty four hour period can be got through without negative consequences can we look on the risk of PEM in the next twenty four hour period returning to baseline or do we need to taking into account cumulative activity over longer time periods, that is in assessing what we can do today do we need to take into account what we did yesterday or the day before or even a week ago?
    • Do one thing at a time. Is PEM triggered by a single aspect of an activity, such as duration or intensity of exertion or is it compounded by orthostatic intolerance, degree of associated sensory stimulation and any associated emotional aspects, can more be done lying down in a silent darkened room than outside on a sunny day next to a busy road? More practically do such as dark glasses, noise cancelling headphones and compression garments increase how much activity can be undertaken without triggering PEM?
    • Keep overall activity below the level of triggering PEM. What sort of percentage of activity bellow the trigger level is safe or achievable, should it be 99% of the trigger level or 75% or 50%? Is this to allow for unexpected complications, such as an aerial display team deciding to practice over your house or the washing machine flooding the kitchen or is the safety margin part of
    • Use preemptive rest and post activity recovery rest. How much pre and post activity is needed to avoid longer term negative effects and does increasing the amount of rest increase the total amount of activity possible, for example if staying in bed the day before and after a wedding works could two days in bed before and after allow you to go to the rehearsal dinner too, or would three days rest allow attendance of the stag/hen do as well?
    • Avoid PEM and you can do more overall. If PEM is avoided in a time period does this allow a higher level overall of activity in that time period?
    • Pacing up. The current model of rehabilitation general in use is that doing an activity within your current limits over time results in increasing those limits, though this is generally unarticulated it is an underlying assumption for many health professionals, and are also seeing it being formalised as graded activity management as a recommended treatment in some UK specialist services now NICE rejects GET. However we have no idea whether or not avoiding PEM has any impact on potential future activity levels beyond an activity ceiling.
    • Use of biofeedback, such as heart rate monitors, etc
    [Added - Any meaningful research will be complex, given the complication that patients continue to exist and function in the real world in between treatment sessions, and ethical considerations need to put avoiding potential long term harm to the fore. This is particularly important in that we need to look at implications over months and years, not short term intervention periods.]

    However any recommendation for activity/exercise based treatments or research is profoundly premature when we have not yet established practical activity monitoring protocols or agreed clinical definitions of PEM. GET/CBT for ME (and now for anything else BPS advocates can think of) has always been putting the cart before the horse, and what we are seeing here and to a lesser extent even in the current NICE guidelines is an attempt to remedy the situation by grooming the horse and painting the cart, not actually addressing the real problems.
    Last edited: May 17, 2023
  5. rvallee

    rvallee Senior Member (Voting Rights)

    They're really not trying hard, uh? As in, not at all.

    How can they talk about GET being commonly used without evidence and find nothing wrong with that? In 3) they explicitly state that they need evidence against to stop using something that has no evidence for. This is insane.

    In 4) they mention reports of harms, but emphasize few reports of benefits. Harms matter more, this is what the hypocratic thing is all about.

    And in 5) the issue of consent is not about studies, it's about patients being told they HAVE to try this treatment, or be dropped, then get dropped anyway because it's all a belief system, which is confirmed by the fact that 1) it has no evidence for, and 2) they require evidence against in order not to support it, which is the very definition of ideology.

    Complete amateur hour. Actually, far far worse than what most amateurs have done. Literally within months groups of amateurs managed to formally put out a roadmap that understands all those issues. This is dereliction of duty.
  6. bobbler

    bobbler Senior Member (Voting Rights)


    Some really important questions here I often don’t see raised and often assume it’s because others definitely think bite size chunks vs do it all then rest (whereas it’s been more complicated than that with me albeit so many caveats)

    I’d love to see an individual thread on some of these questions at some point
  7. TiredSam

    TiredSam Committee Member

    Meaningful, significant. Aussage is a statement, so Aussagekräftig is strong or powerful enough to allow a statement to be made. I think.
  8. Tom Kindlon

    Tom Kindlon Senior Member (Voting Rights)

    For those that don't know it, here are the questions for the Work and Social Adjustment Scale. According to the press release, CBT was shown to improve return to work/school but this subjective measure looks at a variety of issues:

    Work and Social Adjustment Scale

    Rate each of the following questions on a 0 to 8 scale: 0 indicates no impairment at all and 8 indicates very severe impairment.

    Because of my [disorder], my ability to work is impaired. 0 means not at all impaired and 8 means very severely impaired to the point I can't work.

    Because of my [disorder], my home management (cleaning, tidying, shopping, cooking, looking after home or children, paying bills) is impaired. 0 means not at all impaired and 8 means very severely impaired.

    Because of my [disorder], my social leisure activities (with other people, such as parties, bars, clubs, outings, visits, dating, home entertainment) are impaired. 0 means not at all impaired and 8 means very severely impaired.

    Because of my [disorder], my private leisure activities (done alone, such as reading, gardening, collecting, sewing, walking alone) are impaired. 0 means not at all impaired and 8 means very severely impaired.

    Because of my [disorder], my ability to form and maintain close relationships with others, including those I live with, is impaired. 0 means not at all impaired and 8 means very severely impaired.


Share This Page