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

https://www.actionforme.org.uk/news/​we-need-your-help-connect-me-survey/

 

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.

 

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.

 

Your expecting they would know more then most doctors about ME. Thats not realistic.

 

It's a distraction - the only problem is figuring out what they want to distract us from.

 

Indeed also i don't get why they care what apps we use and how we do our banking?

 

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?

 

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.

 

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.....

 

D'oh

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...

 

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.

 

THAT is a good idea

 

Geneva?