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

Andy

Andy

Senior Member (Voting rights)
Action for M.E. are testing out an idea we have for a new project that could potentially help support people with M.E. nationwide.

This project would aim to link healthy volunteers with people with M.E. who need help at home with day-to-day chores and routine tasks.

To find out how feasible this might be, we have created a short survey, to help us find out more about topics like:
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https://www.actionforme.org.uk/news/​we-need-your-help-connect-me-survey/
 
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.
 
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.
 
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.
 
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TiredSam said:
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.
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Your expecting they would know more then most doctors about ME. Thats not realistic.
 
Alvin said:
Your expecting they would know more then most doctors about ME. Thats not realistic.
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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.

Wonko said:
It's a distraction - the only problem is figuring out what they want to distract us from.
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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?
 
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
 
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TiredSam said:
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.
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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.
 
Alvin said:
Indeed also i don't get why they care what apps we use and how we do our banking?
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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.....
 
Wonko said:
Our national benefits agency is very interested in such things, and uses the information as an excuse to deny benefits.
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D'oh :emoji_face_palm:

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.....
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A good reason not to trust AFME
 
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...
 
Wonko said:
Our national benefits agency is very interested in such things, and uses the information as an excuse to deny benefits.
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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.
 
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.
 
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Trish said:
Perhaps they've got a work experience student and asked them to dream up a project and design a survey.
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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.
 
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