UK: ME Local Network

Andy

Andy

Senior Member (Voting rights)
"The ME Local Network (MELN) has been created and is being steered by local ME support groups across the UK, [...]. The aims of this network include strengthening mutual help between local support groups, sharing information and best practice, ensuring the grassroots voice is heard and feeding back to national charities and organisations."

Source: https://www.sheffieldmegroup.co.uk/post/2-short-surveys-to-help-influence-change


Aims of the ME Local Network.

https://docs.google.com/document/d/1JaAv9up0je7SFajz_oyjeegiKwTRzCm_r-8W4sSEchg/
 
"2 short surveys to help influence change

Your experience of claiming or renewing PIP in 2019-2022

Have you applied or started a renewal since October 2019? We'd like your opinion on how well or badly the DWP and its assessors are handling the process, so we can feed back and try to influence change through our network's campaigning work. The more responses we get, the stronger the impact!


Complete the short survey here or click the button below [button is on the original page, linked below]. Closing date 28th February 2022.


Contacting your MP

Have you been in touch with your MP about specific issues to the ME community? Please let us know about your experience, as it will help us build a record of who has been contacted and who is yet to contact.


Complete the short survey here or click the button below [button is on the original page, linked below]. Closing date 28th February 2022."

Original page, https://www.sheffieldmegroup.co.uk/post/2-short-surveys-to-help-influence-change
 
It's M.E. Linda said:
If any other ME/Fibro groups wish to join the discussions, please email

ME Local Network: melocalnetwork@gmail.com
Click to expand...
Hi Linda,
It's been a while since MELN was set up (in part via AfME?) NB their link to you is 'broken' shows an error message.
I understand members of MELN are involved in the DHSC Delivery Plan.
Also Christine Harrison BRAME.

Several of MELN have been in contact with me directly for update on our local area ME Service Delivery Plans.

To be honest, it's been a bit of a rollercoaster since last May/July......

Our own 2022 Task & Finish has been 'subverted', and hijacked over recent months since September....

New brooms ICP and ICB officers sweeping clean and all that.....

2 of us have been excluded from that engagement work and involvement and process.... as of February 21st!!!!

But, I am hopeful that something locally, that has importance for the National picture, can be salvaged from this dreadful mess....

I may wish to join your Zoom session for April 2025?
 
Last edited:
JellyBabyKid said:
@Suffolkres

MELN's next meeting is on Friday 4th April. if you email our admin on melocalnetwork@gmail.com they can send you a copy of the agenda and joining details.

any problems, DM me

Look forward to seeing you there!

ETA: >>It's been a while since MELN was set up (in part via AfME?)

No, we are independent of the charities
Click to expand...


@Suffolkres Apologies, I was unable to attend as I had an appointment. I hope you found it useful.
 
It's M.E. Linda said:
If any other ME/Fibro groups wish to join the discussions, please email

ME Local Network: melocalnetwork@gmail.com
Click to expand...

Suffolkres said:
their link to you is 'broken' shows an error message.
Click to expand...

Sincere apologies for this delay - I have had to be absent from SfME a lot in last 6 months

Please contact our Admin at melocalnetwork@gmail.com if you are a Group Leader/representative of a local M.E. Group in the UK and would like more information on the current work being undertaken by members of ME Local Network (MELN) [a name change is in progress]
 

Page by ThereForME | @thereforme.bsky.social

✍️ A short survey from our friends at ME Local Network! They are looking at the experience of people with chronic illness on using apps to manage or track symptoms. forms.gle...
skywriter.blue

ThereForME 19. February

✍️ A short survey from our friends at ME Local Network! They are looking at the experience of people with chronic illness on using apps to manage or track symptoms.

forms.gle
 
While I don’t see apps as what we primarily need I actually prefer screens and apps if they’re structured right because I can do things as and when I am able. I struggle more with realtime communication. But others vary. And I fear this survey won’t capture that variation. You also seem to have to sign in with google to complete it withiut any information on what data is gathered or what it will be used for.
 
I have done the survey. It's quite simple to do and short, with plenty of opportunity to add your comments about what is and is not useful and ideas for improvement of tracking apps. I based it on my limited and sporadic use of the free version of the Visible app.
 
Thanks @Trish
Although you need to sign in with a google account the survey says your email and google account info are not part of your response and not shared. There is a separate section to enter an email but this is optional. A shame all this info isn’t available before signing in but sharing here so people can read first and decide

This short questionnaire gathers experiences of people with chronic illness, using apps to help manage or track symptoms. We will produce a report about patient experience of using apps in order to promote more debate and awareness as these are being discussed widely in the NHS. Your responses will be anonymised and your email will not be used for anything further except to send you the report with the collated results if you wish. Please respond by 28th February to be included in the collated report.
Click to expand...

Edit: I completed it but you have to select options even if you don’t use apps, so answering irrelevant questions. It’s an oddly designed questionnaire and seems to assume you do use apps in some way. Maybe I’m being overly critical.
 
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hotblack said:
I hope they do something for those who can’t or choose not too so the report isn’t biased to app users and advocates.
Click to expand...
Yes, I hesitated to fill it in because the invitation seems to imply it's just for people currently using an app, which would tend to be people who think they are useful, or haven't been using them for long, so haven't necessarily realised how limited they are. I decided to do it because I wanted to make it clear not everyone finds them useful and point to the multiple problems I see with it and similar apps.
 
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