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  1. Adrian

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    We could collect negative comments from GPs here and else where and send them to the team in the DHSC responsible for long term conditions and this plan. To show the issues and the work that needs to be done
  2. Adrian

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    I agree with this I think they made the first module more generally available. I don't understand why they restrict them. I think the severe one will come out soon and from what I have seen its ok. I assume its there default position to keep training modules private.
  3. Adrian

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    I think that is a very good question - and I don't have an answer. I think I saw some analysis suggesting a few different things. What may be more interesting is with Decode results suggesting certain genes whether that could be translated into potential targets, My feeling is that LDN may help...
  4. Adrian

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    Naively I tend to think its stuff that the NIHR can do (as translational research) when the MRC aren't willing to play ball and do anything - with the DHSC wanting to show some research going on. (NIHR is part of the DHSC where as the MRC is part of the DSIT and hence under different ministers)...
  5. Adrian

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    There is money for drug repurposing trials but there is a need for someone to run them and its not clear to me that there are groups ready to do this. Equally the hope would be that people in related fields (or those related to Decode Results) will get interested - however, there is no real...
  6. Adrian

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    The other thing I think is important here is the language used in the document and by ministers to do things like boost research - the actions don't correspond (a message we have repeated) but we can use the promises in further campaigns.
  7. Adrian

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    My impression as someone who has been involved in the process is that there has been a positive shift in attitudes within the DHSC and those involved understand lots of the issues and there are some positive actions. Things like having new training courses and questions in medical exams can make...
  8. Adrian

    UK Government Delivery Plan for ME/CFS, published 22nd July 2025

    Given the government teams involved and their awareness of the issues and language this surprises me.
  9. Adrian

    Patient led measure of outcomes

    I'm thinking with AI lots of tasks which could have proved difficult before could be doable now and automatable (although some work to automate). But if we are thinking to future trials we should have in mind these new capabilities in a design and it could lead to new ways of working.
  10. Adrian

    Patient led measure of outcomes

    It would require testing each LLM is different and its not something I've tried but generally I've found summarization really good - but on technical topics - and I'm only using small language models (~3 to 8b params) that I can run on my laptop.
  11. Adrian

    Patient led measure of outcomes

    Rather than questions I've wondered if a user could just record how they feel in free text (or via voice) - maybe taking accelerometer data (or even things like app usage/web browsing data) as well. Then use an LLM to interpret the data (both daily and giving each days data as context) to give a...
  12. Adrian

    Trial Report Plasma cell targeting with the anti-CD38 antibody daratumumab in ME/CFS -a clinical pilot study, 2025, Fluge et al

    If I work at home I probably only do 1000 or 1500 steps per day. I was thinking in terms of smaller improvements and where energy gets spent.
  13. Adrian

    Trial Report Plasma cell targeting with the anti-CD38 antibody daratumumab in ME/CFS -a clinical pilot study, 2025, Fluge et al

    The problem with steps as a metric is it only partially represents activity. It could be as someone improves they reduce steps as they are more capable of doing mental tasks and focus on some of these. So steps should be useful but we need to consider them in the context of overall energy usage...
  14. Adrian

    Paul Garner on Long Covid and ME/CFS - BMJ articles and other media.

    There seems to be lots of money in rightwing politics so perhaps he is after this.
  15. Adrian

    Lull: Designing Crip Pacing Technologies for Rest, 2025, Homewood

    Ideate and Ideation seem to be common corporate buzz words these days (I dislike the word) Not sure about social and political here. I can see value in understanding how current wearables and phones could be used to help pacing and doing that by looking at how patients are currently using them.
  16. Adrian

    Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

    There have been a number of small experiments but I would say there hasn't been that much research and very little at a scale likely to find problems (very little funding). Small experiments have pointed to potential issues. We've had multiple diseases where nothing has been found until new...
  17. Adrian

    Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

    I'm wondering what you mean by this - is this certain synapses firing that shouldn't in which case would some additional signal be noticable on a fMRI scan? Would something show for example if you compare fMRI scans with/without PEM as the symptoms would change. Or would there be other ways of...
  18. Adrian

    Brain Retraining treatment for ME/CFS and Long COVID - discussion thread

    Interesting when you say damage do you have a feeling for is this a different state (i.e. some process is running in a different way and hence causing problems) or temporary damage (for example, a cell gets damaged in some way but repairs itself or is replaced) or permanent damage.
  19. Adrian

    Ways to improve evidence synthesis for systematic reviews - discussion thread

    Not sure. But in a paper they often describe the process that they go through in running a trial - things like selection, treatment, assessment etc. But in english and in ways that can be ambigious. So I imagine a more formal description codifying this back to a set of privatives and logic...
  20. Adrian

    Ways to improve evidence synthesis for systematic reviews - discussion thread

    I have thought it would be interesting to take a more formal approach to describing methodology (i.e. a formal specification of the methodology) and then having model checkers running on this to validate certain properties are achieved or identify potential flaws. However, formal specifications...
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