MEAction: " All I want for Christmas is #ScienceNotStigma"

Andy

Andy

Retired committee member
This Christmas, millions will be missing from parties and celebrations, because of the severity of ME. Yet the National Institute of Health and Care Excellence (NICE, the public body responsible for UK clinical guidelines) have just dismissed legitimate concerns of thousands of people with ME, and their friends, family and allies who emailed them. Staff at NICE have responded to our objections by telling us to trust them and wait almost 2 years until the next formal opportunity to comment. However we will not be silenced.

Join us in adding NICE to your Christmas card list. Send a Christmas card to NICE staff telling them why those who have championed the ideas and treatments that have harmed our community should not be writing the guideline that will influence treatment for decades to come.
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https://www.meaction.net/2018/12/05/all-i-want-for-christmas-is-sciencenotstigma/
 
Am I alone in wondering if sending cards like this is a wise idea? Seems like it could play right in to the “abusive bullying patient” persona that the BPS crowd have created.

Personally I think the responses to NICE that this forum has been writing have been much better, excellent in fact.
 
I think it's a total waste of time and energy. They have received over 2,000 emails and we saw response. I think we should just leave it for now.

Sorry I forget M.E Action's PR person's name but I had hoped that she would be going to radio/newspapers....I know it's shaky ground though. But the cards... get a no vote from me. And what exactly is ME Action PR person doing..
 
I think NICE are very aware of the unease among patients. The next battle ground for patient advocacy will surely be when the draft guidelines are produced. The last time we know many stakeholder groups were very unhappy with them, yet White was able to bulldoze the guidelines to his viewpoint. Do we need to engage in some way with influential stakeholders? Not sure how but maybe invite them to conferences or build up a portfolio of research.
 
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In regard to this as an advocacy effort, I think it has value. Not necessarily in regard to convincing NICE to change any decision that it has/might make but in encouraging patients to actually take an action, I think that's where the value is, especially as us Brits can often be too accepting of the status quo than might be good for us.

ETA: This reply was meant in response to the idea of sending cards.
 
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Andy said:
In regard to this as an advocacy effort, I think it has value. Not necessarily in regard to convincing NICE to change any decision that it has/might make but in encouraging patients to actually take an action, I think that's where the value is, especially as us Brits can often be too accepting of the status quo than might be good for us.
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Maybe we could draft a letter to make various stakeholders aware of all the conferences next year and suggest someone attend from Association of British neurologists etc. I'm great at ideas not so hot on the technical side.!!!
 
obeat said:
Maybe we could draft a letter to make various stakeholders aware of all the conferences next year and suggest someone attend from Association of British neurologists etc. I'm great at ideas not so hot on the technical side.!!!
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Oops, sorry, my, unclear, post was meant in regard to sending cards - I've now added an explanation to it.

In regard to educating influential stakeholders, do you mean stakeholders in the NICE guidelines review or in a wider context?
 
Andy said:
Oops, sorry, my, unclear, post was meant in regard to sending cards - I've now added an explanation to it.

In regard to educating influential stakeholders, do you mean stakeholders in the NICE guidelines review or in a wider context?
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The professional bodies who are stakeholders. Something like this" as stakeholders in NICE we believe it is incumbent on your organisation to be updated on research pathways. The following conferences will be held in 2019/20. We would urge attendance."
 
Andy said:
In regard to this as an advocacy effort, I think it has value. Not necessarily in regard to convincing NICE to change any decision that it has/might make but in encouraging patients to actually take an action, I think that's where the value is, especially as us Brits can often be too accepting of the status quo than might be good for us.

ETA: This reply was meant in response to the idea of sending cards.
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I agree it seems to me like an inclusive way of getting people who maybe haven’t done anything on advocacy to engage with it.
 
obeat said:
The professional bodies who are stakeholders. Something like this" as stakeholders in NICE we believe it is incumbent on your organisation to be updated on research pathways. The following conferences will be held in 2019/20. We would urge attendance."
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OK, so I'm assuming stakeholders in the NICE guidelines review process. For context, here is the latest stakeholder list, https://www.nice.org.uk/guidance/gid-ng10091/documents/stakeholder-list, and while I think that, certainly, those who are stakeholders in the process should be aware of the latest research, I wonder if the amount of work involved would be too much.
 
Andy said:
OK, so I'm assuming stakeholders in the NICE guidelines review process. For context, here is the latest stakeholder list, https://www.nice.org.uk/guidance/gid-ng10091/documents/stakeholder-list, and while I think that, certainly, those who are stakeholders in the process should be aware of the latest research, I wonder if the amount of work involved would be too much.
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Sorry. I know we're getting away from the cards here. We need to be advocating behind the scenes for the next 18 months. Much of the current research won't be published in this time. Maybe if we picked 15 to 20 professional bodies and gave them only conference details. Most professionals only attend their own speciality for conferences.
 
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