[UK]Ask your MP to attend the APPG on ME meeting

[Snowdrop]

I'm probably missing something but I don't see a problem with contacting MP's for the APPG meeting and expecting AfME to come through with a clean statement that will lay to rest any niggling concerns that patients have regarding their views on PACE.

Trust is earned that's why transparency is so important. I really don't think this is asking too much of AfME.
I acknowledge that your concern is with getting MP's to the meeting and not with AfME. Whether that should impact what people do in this regard my opinion is in this instance to go with it but I would like to see AfME pressed on this point. As uncomfortable as it may be for them it is not enough to just let it go and assume. This is an issue on which they need to be seen to be on the side of science and patients.

 

[AndyPR]

Last chance for people to email their MPs before tomorrows meeting, all details in my original post.

@charles shepherd , could this type of reminder be a useful thing to do before every meeting? How often do they take place? If it would be of use then I can create it each time.

 

[slysaint]

Last chance for people to email their MPs before tomorrows meeting, all details in my original post.

@charles shepherd , could this type of reminder be a useful thing to do before every meeting? How often do they take place? If it would be of use then I can create it each time.

"The APPG on M.E. has been conducting an inquiry into social care for people with M.E. and, at its next meeting in January, will discuss evidence gathered in order to decide on inquiry recommendations. This evidence is based on a number of sources. It's being held on Tuesday 17 January, 2pm to 3pm, in Room T at Portcullis."

 

[charles shepherd]

"The APPG on M.E. has been conducting an inquiry into social care for people with M.E. and, at its next meeting in January, will discuss evidence gathered in order to decide on inquiry recommendations. This evidence is based on a number of sources. It's being held on Tuesday 17 January, 2pm to 3pm, in Room T at Portcullis."

The main business for the APPG on ME on January 17th will be the inquiry that is being conducted into all aspects of social care in relation to ME/CFS - which is a obviously a very important practical issue for many people with severe ME/CFS

If anyone on PR has problems, comments or concerns relating to obtaining or funding social care, or using social care, or training of social care staff, then please get in touch with your MP with your evidence and ask them to both join the APPG on ME and to attend the APPG meeting on January 17th

As people are probably already aware, APPG on ME meetings are no longer open to the public

 

[AndyPR]

Reusing this thread to request UK people to contact their MPs to ask them to attend the next meeting, which is on Tuesday 17th January. Details are below in the template letter, to find your MP and his/her contact details use http://www.parliament.uk/mps-lords-and-offices/mps/

A Facebook event has also been started for this https://www.facebook.com/events/316368215423976/, from which I have copied the template letter.

Dear [MP’s name]

I am one of the 250,000 people in the UK living with the chronic, neurological condition myalgic encephalomyelitis (M.E.). M.E. is a widely misunderstood illness, and many of those affected experience considerable barriers in accessing healthcare, welfare benefits and social care.

{You can personalise the letter by sharing your personal experience of M.E. here. We recommend keeping it to a single paragraph, as experience tells us that letters kept to one page in length are most effective.}

At a meeting of the All-Party Parliamentary Group (APPG) on M.E. in January, parliamentarians will review evidence presented as part of the APPG’s social care inquiry into the shocking lack of appropriate service provision for this vulnerable patient group.

Please would you attend this meeting to help shape inquiry recommendations? It's being held on Tuesday 17 January, 2pm to 3pm, in Room T at Portcullis House and any time you can spare would be much appreciated.

The secretariat for the APPG on M.E. can provide more details and answer any questions you might have, including about joining the APPG, which exists to improve the lives of people with this condition. Please contact the secretariat on policy meconnect@meassociation.org.uk

Yours sincerely

[Your name and address - address is important to confirm you are a constituent of theirs]

 

[Binkie4]

@AndyPR -have been asking my MP to attend APPG on ME meetings for a while now alongside asking for support for other general ME issues.


Am pleased to say that he has agreed to attend the first half of next meeting; prior commitment requires an early departure. A first step.

 

[MeSci]

Reusing this thread to request UK people to contact their MPs to ask them to attend the next meeting, which is on Tuesday 17th January. Details are below in the template letter, to find your MP and his/her contact details use http://www.parliament.uk/mps-lords-and-offices/mps/

Thanks, Andy - have done.

 

[AndyPR]

Awesome, thanks @Binkie4 and @MeSci

 

[MeSci]

Awesome, thanks @Binkie4 and @MeSci

Sadly it's very unlikely that mine will go, or be any good if he does - he's very inexperienced and party-typical.

 

[AndyPR]

Sadly it's very unlikely that mine will go, or be any good if he does - he's very inexperienced and party-typical.

I'm in the same boat as you, I very much doubt that my MP will go but I think the attempt is important, it's our own way of raising ME's profile as a serious issue. Doing this won't change the ME situation in the UK overnight but it is still advocacy that almost all of us can take part in.

 

[Binkie4]

@MeSci My MP has been refusing invitations for a while but I kept on, regarding it as profile raising. Not sure if it will be " his thing" but he has agreed to come next time. I hope he has people to talk to. He's also a new MP and am not sure health/social issues are his thing but..........hope he learns something.

 

[SamanthaJ]

Can any MP attend, or just members of the APPG?

From past experience, remember to add your home address to your letter, they won't usually respond if they can't see you're a constituent.

 

[AndyPR]

Can any MP attend, or just members of the APPG?

From past experience, remember to add your home address to your letter, they won't usually respond if they can't see you're a constituent.

Any MP can attend, and good tip about the home address

 

[SamanthaJ]

Any MP can attend, and good tip about the home address

Thanks, emailing my MP now.

 

[AndyPR]

Bump.

 

[AndyPR]

Last chance for any emails to be sent out, although even if you think it's too late please still do send it as we need to keep raising ME as an issue with our MPs, otherwise they won't bother thinking about it.

 

[charles shepherd]

Unfortunately, I have just been informed that the APPG on ME meeting tomorrow has been cancelled

I don't have any more information, or a new date, right now

CS

 

[slysaint]

Unfortunately, I have just been informed that the APPG on ME meeting tomorrow has been cancelled

I don't have any more information, or a new date, right now

CS

when you do please could you raise the implementation of IAPT see:
http://forums.phoenixrising.me/index.php?posts/802981/
this will set us back decades, again.

edit:
also please use this:
http://forums.phoenixrising.me/inde...data-cbt-and-get-are-ineffective.48764/unread