1. Guest, the 'News in Brief' for the week beginning 21st September 2020 is here.
    Dismiss Notice
  2. Welcome! To read the Core Purpose and Values of our forum, click here.
    Dismiss Notice

Action for ME: "We need your help! Connect M.E. survey"

Discussion in 'General ME/CFS News' started by Andy, Nov 20, 2018.

  1. Andy

    Andy Committee Member & Outreach

    Messages:
    10,492
    Likes Received:
    75,829
    Location:
    Hampshire, UK
    https://www.actionforme.org.uk/news/​we-need-your-help-connect-me-survey/
     
    MEMarge, Invisible Woman and TiredSam like this.
  2. Trish

    Trish Moderator Staff Member

    Messages:
    25,870
    Likes Received:
    126,843
    Location:
    UK
    Hmm. I am skeptical. Is it a good use of AfME's resources to try to set up an app based volunteering system that would necessitate scrupulous checks of the both users and volunteers for every local area across the UK. They would need police checks for volunteers going into vulnerable people's homes and some way of checking whether the individuals asking for help are genuine and have a genuine need.
     
    alktipping, Hutan, Joel and 13 others like this.
  3. rvallee

    rvallee Senior Member (Voting Rights)

    Messages:
    4,693
    Likes Received:
    36,644
    Location:
    Canada
    That seems like something that should only be done within a legal framework by government funding. Then again, seeing how the UK handles disability in general, maybe it's not the best idea but that's a whole other topic.

    But this is way too resource-intensive and big for a tiny charity. There are simply too many patients with those needs and it's a very vulnerable setting open to predators and scammers. The opportunity cost is enormous when there are much more pressing issues, especially about the NICE guidelines and fraudulent research making the bulk of clinical practice.

    It's definitely something that is needed but out of the scope of a small charity operating in a stigmatized disease that is subject to systemic discrimination and ideological empire-building.
     
    alktipping, Hutan, Skycloud and 7 others like this.
  4. Alvin

    Alvin Senior Member (Voting Rights)

    Messages:
    3,309
    Likes Received:
    16,104
    I think its a great idea. The implementation is incredibly important and would enough people volunteer to make it happen?

    Also is AFME actually acting in good faith here, they have already done a great deal of harm that they have never made contrition for which raises a great deal of suspicion.
     
    Tia likes this.
  5. TiredSam

    TiredSam Moderator Staff Member

    Messages:
    8,302
    Likes Received:
    40,037
    Location:
    Germany
    Well, you could ask people who say they want to help whether they believe that encouraging increases in activity may be suitable for some cases of mild ME.
     
  6. Alvin

    Alvin Senior Member (Voting Rights)

    Messages:
    3,309
    Likes Received:
    16,104
    Your expecting they would know more then most doctors about ME. Thats not realistic.
     
  7. Wonko

    Wonko Senior Member (Voting Rights)

    Messages:
    4,023
    Likes Received:
    29,756
    Location:
    UK
    It's a distraction - the only problem is figuring out what they want to distract us from.
     
  8. Alvin

    Alvin Senior Member (Voting Rights)

    Messages:
    3,309
    Likes Received:
    16,104
    Indeed also i don't get why they care what apps we use and how we do our banking?
     
    alktipping, EzzieD, JoanneS and 3 others like this.
  9. TiredSam

    TiredSam Moderator Staff Member

    Messages:
    8,302
    Likes Received:
    40,037
    Location:
    Germany
    I was quoting AfME's current position on the matter. If the volunteers didn't know not to encourage an increase in activity, or didn't know more than most doctors about ME, they shouldn't be allowed near ME sufferers. It's bad enough that those who can have to hide from the medical profession, without having to hide from volunteers informed by AfME as well.

    My thoughts exactly. What are AfME positioning themselves for this time? As usual it's a unilateral bolt from the blue with no discussion with sufferers or other support organisations beforehand. What are they up to now?
     
    alktipping, Hutan, Sly Saint and 8 others like this.
  10. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    6,076
    Likes Received:
    38,228
    Location:
    UK West Midlands
    My view is funding would be better spent on providing people with advocacy support to research and apply for local services they might need including voluntary support. Some kind of national volunteer thing is likely to be very unwieldy and may have mismatches between numbers of PWME and volunteers. Also agree that people need to be properly vetted before being allowed near vulnerable people so this could involve quite an overhead. Need to tap in to general initiatives such as Jo Cox foundation and get them to do something for people with chronic illnesses generally including ME.

    And where are all these healthy people who specifically want to help PWME coming from?? I would like to know as we could do with a couple of them to help do stuff for our local support group...

    And finally why do people think Apps are the answer to everything these days
     
    Last edited: Nov 20, 2018
    alktipping, Hutan, rvallee and 12 others like this.
  11. Alvin

    Alvin Senior Member (Voting Rights)

    Messages:
    3,309
    Likes Received:
    16,104
    If this is being done in good faith one could teach volunteers what they need to know, the Unrest plus video to get CME credits could be a model, Unrest plus a video for volunteers plus a test could do the job. And if they want to watch the doctor vid as well that would be a bonus

    But as we are saying i don't trust AFME because they have no only not earned our trust they have shattered it and never made any sort of contrition.
     
    alktipping likes this.
  12. Wonko

    Wonko Senior Member (Voting Rights)

    Messages:
    4,023
    Likes Received:
    29,756
    Location:
    UK
    Our national benefits agency is very interested in such things, and uses the information as an excuse to deny benefits.

    Lots of people, in claimants homes, making notes, recording, or even just acting as witnesses, right up their alley - I'm probably just paranoid but if I was an evil organisation bent on cutting costs whilst still slightly concerned about bad publicity.....
     
  13. Alvin

    Alvin Senior Member (Voting Rights)

    Messages:
    3,309
    Likes Received:
    16,104
    D'oh :emoji_face_palm:

    A good reason not to trust AFME
     
    alktipping and Wonko like this.
  14. Kafka

    Kafka Established Member (Voting Rights)

    Messages:
    44
    Likes Received:
    282
    I'm looking for local patients that I could be of assistance to. I had this idea when I attended the first MEAction meeting in NYC.
    I wish there was a data base of patients in area and volunteers (I would def be one and have filled out the form) who could find one another. Of course vetting can be a huge problem and I don't know how that will be done. Hoping that more experienced minds are behind this effort...

    I'm very excited because this is just what I was looking for

    Edit - I really have to slow myself down and not keep putting my foot in my mouth - I thought this was ME Action - but it's AfME - bit diff - not happy any more...
     
  15. Invisible Woman

    Invisible Woman Senior Member (Voting Rights)

    Messages:
    6,931
    Likes Received:
    40,696
    My thoughts exactly.

    Soliciting information about people that neither they nor the DWP already have. With the possibility that those who will usually have no truck with AfME will hand over this information in the hopes of making life better.

    I bet that info would be worth quite a bit.
     
  16. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    6,076
    Likes Received:
    38,228
    Location:
    UK West Midlands
    I decided to fill in the questionnaire didn’t copy it but all the questions assume you already use Apps and there’s nowhere to say if you have any issues with the idea of volunteers or how it would be organised apparently you have to email this separately. Put it this way someone in AFME likes the idea of working on an app that sounds like a fun project :rolleyes:

    Also the demographics groups people by decade until you get to 50+. Ageist or what. Presumably put together by someone in their 20s who thinks everyone with ME is a teenager.:banghead: Or as it’s made me really grumpy I’m going to say its some student like the ones who approach our local group with their back of a ciggie packet ‘research’. We want to do something that would help PWME - what sort of App would you like.
     
    Last edited: Nov 21, 2018
  17. Trish

    Trish Moderator Staff Member

    Messages:
    25,870
    Likes Received:
    126,843
    Location:
    UK
    Perhaps they've got a work experience student and asked them to dream up a project and design a survey.
     
  18. NelliePledge

    NelliePledge Moderator Staff Member

    Messages:
    6,076
    Likes Received:
    38,228
    Location:
    UK West Midlands
    Yes succinctly put as ever @Trish this was my feeling. I was involved in customer and staff survey design at one stage in my career and with the technology now available it’s easy to put together a list of questions for people to full in online that doesn’t mean it’s a proper survey. Very amateurish job in my opinion.
     
  19. Tia

    Tia Senior Member (Voting Rights)

    Messages:
    152
    Likes Received:
    1,350
    THAT is a good idea :thumbup::thumbup:
     
    alktipping and NelliePledge like this.
  20. Sly Saint

    Sly Saint Senior Member (Voting Rights)

    Messages:
    5,118
    Likes Received:
    42,408
    Location:
    UK
    Geneva?
     

Share This Page