#MEAction: Four things you can do to advance the fight for health equality

Andy

Andy

Retired committee member
  1. Sign the MEAction letter to Francis Collins to increase investment in ME research (Global)
  2. Ask Congress to support people with ME. Using our one-click software, it’ll only take a few seconds. Contact Congress now. (US-only)
  3. Sign these petitions: Global petition | NIH petition (US only) | Scottish petition (Global). Australians: join the letter writing campaign! Instructions here.
  4. Donate: to support #MEAction’s movement-building and advocacy work
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https://www.meaction.net/take-action/
 
It's been updated!! Now you can do all four (if you are in the UK at least :)

  1. Sign the MEAction letter to Francis Collins to increase investment in ME research (Global)
  2. Ask Congress or Parliament to support people with ME. Using our one-click software, it’ll only take a few seconds. Contact Congress now (US-only). In the UK, urge your Member of Parliament to sign EDM 1247.
  3. Sign these petitions: Global petition | NIH petition (US only) | Scottish petition (Global). Australians: join the letter writing campaign! Instructions here.
  4. Donate: to support #MEAction’s movement-building and advocacy work
 
I don't see the point of an edm which was saying MPs recognise that buildings are lit up blue, the charities are doing great, agreeing pace needs is bad and to be overturned (many won't even if they know what you're talking of). I don't see why an edm saying ME is serious, extremely underserved in many ways and warrants parliament debate isn't put up straight away. I said this on MEA page and was told this was a warm up or to get people on board first. I don't personally understand it so will be waiting until the next EDM is up. I also question the idea of fantastic work from our charities when most of them ignored millions missing as a chance to bring about real action in uk.
 
Cinders66 said:
I don't see the point of an edm which was saying MPs recognise that buildings are lit up blue, the charities are doing great, agreeing pace needs to be overturned (many won't). I don't see why an edm saying ME is serious, underserved in many ways and warrants parliament debate isn't put up straight away. I said this on MEA page and was told this was a warm up or to get people on board first. I don't personally understand it so will be waiting until the next EDM is up.
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And if we don't get another EDM?
 
. The whole point - as far as I am aware - is supppsed to be to get a debate in parliament. Nicky Morgan said there needed to be more time in debate. If I was an MP I'd rather my time used to sign an edm with a purpose. Is the MP even going to grasp the complexities of pace and we need more than pace discussed anyway. The edm could have called for funding, better services etc as well or got it established that ME is serios systemic disease etc and it's mainly saying wasn't awareness week good ?
 
It also acknowledges the detrimental effect of PACE trial, which is pretty darn important.

Ultimately I don't think this will get a debate, edms very rarely do. But it's about keeping this issue on your MPs radar. If something is a one off clickbait thing MPs can ignore pretty easily, but if they are regularly receiving emails from constituents saying this is an ongoing issue, do this little thing now and I'll be back in touch, then they will see it as a more important issue.
I'm sure this won't be the last EDM we get.

It takes seconds for an MP to sign an EDM, and gives you a way in next time by saying thank you so much for supporting ME patients in the past.
And it gives activists and MPs like Carol Monaghan a list of other responsive MPs to work with.

Or at least that's why I'm doing this.
 
The text of the EDM is:
That this House recognises Myalgic Encephalomyelitis (ME) Awareness Week from 6 to 12 May 2018, which aims to highlight the impact this invisible illness has on 250,000 people across the UK; recognises the fantastic work campaigners and charities are doing to highlight ME as a physical condition which is not all in the mind; acknowledges the detrimental effect of the PACE trials and its results, and the work which is being done to reverse this; and encourages people to go blue for ME across the week, to further bring this illness out of the shadows and into the spotlight.

So what we have is:
  1. It calls the condition ME. Not CFS, or CFS/ME, which would be the obvious preference of the BPS crowd.
  2. It acknowledges that it has an impact on those people with ME.
  3. It acknowledges that it is an invisible illness.
  4. It acknowledges that a large number, 250,000, are affected by it.
  5. It recognises that campaigners and charities are the ones doing the educational part.
  6. It highlights ME as a physical condition. (Although I will admit I personally don't like the "not all in the mind" part.)
  7. It acknowledges that the PACE trial has had a detrimental effect.
  8. It acknowledges that work is taking place to counter PACE.
  9. And it acknowledges that ME needs more attention.
So I'm puzzled why you wouldn't want your MP to sign up to agree with all of those points. If they don't sign up to this one, why would they sign up to the next one that is more demanding?
 
What does it change?
I've written to my MP with more than basic ME info in the past. Do we really think our MPs agree pace and nice and NHS are wrong before a debate and theyre really made to understand the issues? I don't necessarily buy the invisible illness repeated definition as I always looked sick and about 50% seem to pallor and so on. We have USA calling on Collins for huge change across the board and aside from action on pace here we are just saying aren't we doing well. I don't see why issues such as research funding and activity and severe ME care for eg are never on the agenda.

When there's an edm calling for a debate across issues then I will be in, I have been waiting for that since Nicky Morgan said it was needed. If I was an MP I'd want to be signing in something more meaningful
 
So many of the intermediate steps change nothing, but they are what help you get to where you are going. We have a similar resolution being introduced in the Senate. These are all paths to legislation that help us identify allies, mobilize the community to actually do the outreach around something concrete, etc. It's a reflection of how much support we actually have / have the reach, power and capacity to rally. All of that matters. And having established the relationship (many constituents have no relationship with their MP), they are more primed/prepared to do more later. We can't *not* have a large number of MPs sign and support.
 
JenB said:
mobilize the community to actually do the outreach around something concrete
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JenB said:
And having established the relationship (many constituents have no relationship with their MP), they are more primed/prepared to do more later
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I think these things especially need to be cultivated in the UK. While, of course, there will be a number of people who will contact their MPs, I believe that the vast majority of the public are hugely disconnected from politics, and when you add in the energy restrictions that we are working under, the number of people with ME who previously contacted their MP is probably tiny. So to give people a simple request that they can make of their MP makes that so much easier, and will start building the relationships that you mention. :thumbup:
 
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