[UK] #MEAction, Meet with your MP about ME – Our Toolkit shows you how!

Andy

Andy

Retired committee member
Advocates at #MEAction UK are working hard to engage Members of Parliament in the fight for appropriate clinical care and investment in biomedical research for ME. Gaining MPs support in lobbying for change is vital to our success. So whether you are a person with ME, their carer, friend, family member or ally, we are asking you to reach out and meet with your MP, and we have created a toolkit to help.

The toolkit contains everything you need for a successful meeting, including:

  • Email templates
  • Tips for preparing for the meeting
  • Actions you can ask your MP to do at this stage
  • Key talking points
  • How to follow-up after the meeting
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https://www.meaction.net/2018/10/11/meet-with-your-mp-about-me-toolkit/
 
Sasha said:
Hi Espe - any thoughts for those of us who aren't well enough to meet with our MPs in person or on the phone and who don't use social media such as FB, Twitter, etc.?

Have you considered a template email that those of us in that position could send, for instance?
Click to expand...
Maybe record a short video message for them if that’s an option? Ask if a friend or family member could meet with them on your behalf if there’s someone you can rely on to put your message across.
 
Sasha said:
Hi Espe - any thoughts for those of us who aren't well enough to meet with our MPs in person or on the phone and who don't use social media such as FB, Twitter, etc.?

Have you considered a template email that those of us in that position could send, for instance?
Click to expand...

Hi!

In this case, some people opt for a group meeting. Often they might arrange it via #MEAction local groups on FB so others can convey your message and bring your letter and any other documents. I understand that this might not be possible in your case though. Keeping that in mind, I'd recommend tweaking the email template and requesting a home visit. I know this is not the norm and it might be tricky to arrange, but I'd try to go for it, explaining why you can't make it to an in-person meeting and emphasising how extremely important it is for YOU as their constituent to be able to convey your message and your concerns. I am also aware that it can be disheartening if this doesn't pan out or if you put quite a lot of effort into it but it doesn't work out, but MPs must remember that we are here and that we are knocking on their door (and will keep doing so).

Does that help? :)
 
EspeMor said:
Hi!

In this case, some people opt for a group meeting. Often they might arrange it via #MEAction local groups on FB so others can convey your message and bring your letter and any other documents. I understand that this might not be possible in your case though. Keeping that in mind, I'd recommend tweaking the email template and requesting a home visit. I know this is not the norm and it might be tricky to arrange, but I'd try to go for it, explaining why you can't make it to an in-person meeting and emphasising how extremely important it is for YOU as their constituent to be able to convey your message and your concerns. I am also aware that it can be disheartening if this doesn't pan out or if you put quite a lot of effort into it but it doesn't work out, but MPs must remember that we are here and that we are knocking on their door (and will keep doing so).

Does that help? :)
Click to expand...

Am not able to deal with home visits, alas. I think a lot of us are in that boat. :)
 
Sasha said:
Am not able to deal with home visits, alas. I think a lot of us are in that boat. :)
Click to expand...

I understand Sasha. Have the call to actions to urge MPs to attend debates been more helpful for you? I'm just trying to figure out the best way to provide you with tools so that you can connect :) I know that we might use similar tools (e.g. social media) but hopefully, we will have other tools available for you soon! ;)
 
EspeMor said:
I understand Sasha. Have the call to actions to urge MPs to attend debates been more helpful for you? I'm just trying to figure out the best way to provide you with tools so that you can connect :) I know that we might use similar tools (e.g. social media) but hopefully, we will have other tools available for you soon! ;)
Click to expand...

Hi Espe - yes, the actions in which we can send emails are great. It's anything that involves getting on social media, or meeting with people in person or on the phone or on Skype, or breaching privacy by giving other patients our materials to pass on, that is a problem for me. I suspect that a lot of people who, like me, are sick enough for social contact to be a problem 'in real life' also defend ourselves against social contact on social media because we don't have the energy. Basically, it's email campaigns or petitions or nothing.

I realise that this is a 'meet your MP' campaign, though, so if that's really your focus, it's fine if people like me can't take part in this phase. But it seems unlikely that in every constituency there'll be a PWME to do this, and at that point, I hope you'll consider bringing the rest of us in and having a wider campaign to target the MPs not reached by this.

Thanks for all the hard work you're putting into this. :)
 
Sasha said:
Hi Espe - any thoughts for those of us who aren't well enough to meet with our MPs in person or on the phone and who don't use social media such as FB, Twitter, etc.?

Have you considered a template email that those of us in that position could send, for instance?
Click to expand...

@EspeMor , Sasha has raised an important point. Many PwME only have sufficient energy to follow one route of communication.

Could a ‘generic’ email be prepared for use by PwME who are unable to make any sort of physical meeting with their MP?

It could still be related to the ‘Meet your MP about ME’ campaign by referring to it. Cross reference so that the single email could say ‘you may have already heard from a group of people with ME from your constituency who have asked to meet with you. Unfortunately I am unable to attend any sort of meeting, but wanted you to be aware that I, too, need you to support the campaign ........’

South West have already helped prepare two letters of this type (but from small groups of non-mobile people) which, I’m sure, could be amended to suit. Happy to help.
 
Sasha said:
Hi Espe - yes, the actions in which we can send emails are great. It's anything that involves getting on social media, or meeting with people in person or on the phone or on Skype, or breaching privacy by giving other patients our materials to pass on, that is a problem for me. I suspect that a lot of people who, like me, are sick enough for social contact to be a problem 'in real life' also defend ourselves against social contact on social media because we don't have the energy. Basically, it's email campaigns or petitions or nothing.

I realise that this is a 'meet your MP' campaign, though, so if that's really your focus, it's fine if people like me can't take part in this phase. But it seems unlikely that in every constituency there'll be a PWME to do this, and at that point, I hope you'll consider bringing the rest of us in and having a wider campaign to target the MPs not reached by this.

Thanks for all the hard work you're putting into this. :)
Click to expand...


Thanks for the feedback Sasha, much appreciated. Working on this to see what we can put together :)
 
It's M.E. Linda said:
@EspeMor , Sasha has raised an important point. Many PwME only have sufficient energy to follow one route of communication.

Could a ‘generic’ email be prepared for use by PwME who are unable to make any sort of physical meeting with their MP?

It could still be related to the ‘Meet your MP about ME’ campaign by referring to it. Cross reference so that the single email could say ‘you may have already heard from a group of people with ME from your constituency who have asked to meet with you. Unfortunately I am unable to attend any sort of meeting, but wanted you to be aware that I, too, need you to support the campaign ........’

South West have already helped prepare two letters of this type (but from small groups of non-mobile people) which, I’m sure, could be amended to suit. Happy to help.
Click to expand...

Thanks so much! Yeah, we should look into this and see how we might be able to incorporate something like this :)
 
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