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The Future Challenges: Replenish-ME

Discussion in 'General ME/CFS news' started by Andy, Feb 22, 2020.

  1. Andy

    Andy Committee Member

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    https://www.weahsn.net/our-work/sup...hallenges/the-future-challenges-replenish-me/

    https://twitter.com/user/status/1229805390176702465
     
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  2. Sly Saint

    Sly Saint Senior Member (Voting Rights)

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    Just been reading up on this am a bit confused; are they carrying out a trial of the product or just going ahead with the therapy without any evidence?

    Also have they been a bit fast and loose with the name to make it seem tailored to pwME?
    ie "Replenish-ME project" as opposed to the "Replenish-Me project"

    I can't find anything specifically relating to ME on their research pages:


    but there is a 'general' one so maybe they are using that as 'evidence' as ok to try out on ME patients?

    https://kiactiv.com/research/

    they are also 'piloting' it for COPD ( another classified under PPS)
    https://twitter.com/user/status/1230066325474680832


    I think that gathering data on objective measures is a good move, but if it is being done in conjunction with essentially a GET program based on Psychosocial methods I worry that the data may be misinterpreted and thus the wrong 'advice' given to the patients.

    And that when the treatment period is over it might be another case of square pegs in round holes in terms of 'making the data fit' with their model of fear/avoidance/deconditioning.
     
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  3. rvallee

    rvallee Senior Member (Voting Rights)

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    I really don't see how this could be of any relevance. A habit of exercise is important and beneficial in type 2 diabetes and so you want to encourage that behavior. Applying the same approach to a disease that specifically does not benefit from an increase in exercise makes no sense. Most pwME do the most they already can and not knowing this is disqualifying. Any increase in activity in one place has to give in another and we are painfully aware of just how limited we are, it's not even relevant information (other than, I guess, the people who think we just feel tired, or whatever).

    It's not clear exactly what is being monitored but as has been explained on twitter there is no heart monitor, pretty much the only relevant thing to monitor. It also adds enormous confusion considering the typical advice ME patients get from NHS personel.

    I'm sorry folks but you are not helping when you don't even understand the basics of the problem.
     
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  4. alktipping

    alktipping Senior Member (Voting Rights)

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    just an other commercial advancement into ripping of taxpayers .
     
  5. Trish

    Trish Moderator Staff Member

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    I had a look too. It seems they are in the process of researching this product for people with the sort of conditions where increasing activity is healthy. There is no mention on the company website of any knowledge or planned research for ME.

    It seems their product is a wearable movement monitor that measures movement in 3 dimensions, but does not count steps or heart rate. This is linked to an app which users learn to interpret and use to better understand their activity with a view to increasing it, with the guidance of a company 'mentor' in six 20 minute telephone conversations spread over 12 weeks.

    I couldn't see any mention of monitoring symptoms as well. The sole target seems to be to help people learn how to increase their activity by becoming more aware of how much they are doing now and being prompted to explore ways to integrate more activity into their daily lives.

    I think I might write to the company and the clinic to ask for a copy of their research protocol and ethics approval for this pilot intervention. (I bet there isn't one).
     
  6. Webdog

    Webdog Senior Member (Voting Rights)

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  7. Kitty

    Kitty Senior Member (Voting Rights)

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    I'm confused. Is the PWME in the trolley? If so, why are they wearing a Manhattan diagram as a hat?
     
  8. Trish

    Trish Moderator Staff Member

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    I wanted to write to the clinic to ask for this information, but there wasn't a direct email address for the clinic so I've sent it as and FOI request.

    I copied this to the organisation that is organising these projects - the West of England Academic Health Science Network, with some explanation of why I'm interested. Another thing I asked about what what training the company mentors will have so they understand that for ME, the aim is pacing, not increasing activity.

    Don't suppose I'll get any satisfactory answers.
     
  9. Amw66

    Amw66 Senior Member (Voting Rights)

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    If anyone has a contact for Workwell it would be interesting to see their take on this?

    @PhysiosforME , are you aware of the background to this ?
     
  10. PhysiosforME

    PhysiosforME Senior Member (Voting Rights)

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    We've had some dialogue on twitter with this group - will try and find out bit more and come back
     
  11. ladycatlover

    ladycatlover Moderator Staff Member

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    :eek: I couldn't manage one 20 minute telephone conversation. Are they mad? (rhetorical question)
     
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  12. Amw66

    Amw66 Senior Member (Voting Rights)

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    This seems to he a very common mainstream misconception. That telephone conversations will be more manageable.

    It seems to reinforce the feeling that this is really based on fatigue and miles away from ME

    It is both sad and concerning that this yet again is the " official" worldview, and that there is such a huge gulf from reality.
     
    ukxmrv, Mithriel, chrisb and 7 others like this.
  13. Andy

    Andy Committee Member

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  14. Trish

    Trish Moderator Staff Member

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    I have had a reply from the West of England Academic Health Science Network. They have told me they will be helping the University/Clinic to answer my FOI request to ensure I get the information I asked for.

    Here's what I asked for:

     
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  15. Wonko

    Wonko Senior Member (Voting Rights)

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    Surely they 'should' already have all that information on hand, as it 'should' all have been needed for the funding proposal and ethical approval.

    There should be no need for teams of people, from different institutions, to prepare it, as it should, indeed must, already exist.
     
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  16. Trish

    Trish Moderator Staff Member

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    I think their point was that I'd asked the University/Clinic for the info, and sent a copy of the request to the West of England network. They reasonably said they didn't want to duplicate the reply, so would cooperate with the University on a single reply.
     
  17. Andy

    Andy Committee Member

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  18. Wonko

    Wonko Senior Member (Voting Rights)

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    "enrolment materials have not been widely shared to avoid confusion" is puzzling.

    Are they a 'secret'?

    Or do they think that pwME are collecting vast amounts of protocols, on fatigue studies, every day, and might possibly get confused and mix them up?

    TBH the only possible 'justifiable' reason for them not being shared is that 'something' in them could bias the trial if known by the participants.

    But withholding such information from participants would surely mean that the participants couldn't give informed consent?

    But if they aren't trying to prevent participants from having access to the protocol then why withhold it from those not in their club?
     
  19. Andy

    Andy Committee Member

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    Code:
    https://twitter.com/KiActiv/status/1234482764763799557
    https://twitter.com/user/status/1234482764763799557
     
  20. Trish

    Trish Moderator Staff Member

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    So what's the difference between a 'real world evaluation if something benefits patients...' and a clinical trial?
     
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