Hi. I'm checking in (a bit later than I thought). The situations remain unresolved and did have a bad effect on my illness.
Hi oceiv - welcome back! I'm sorry to hear that things haven't been going well and that you're not doing great. This is a horrible disease and it's great that you're trying to think of how people can work around this - I agree that this is too much for any individual to do.
oceiv said:
In my frustration though, I came up with an idea for this advocacy action. I[...] In this thread, we've narrowed down our goal list and each of us have our preferred list. What if we didn't have to choose as a group? Some details would need to be worked out, your suggestions would be needed in this respect. My new idea is that we have the basics of a letter to congress/health agencies here in this thread, already. If each person chose the combination they liked and emailed it to our already-chosen targets, the result would be individualized letters, all with similar themes. We could have a thread in which everyone can choose to post their letters. People could base their letters on those posted and wouldn't have to come up with a letter from scratch.
That's a clever idea! A menu of demands, and each person chooses as many from the menu as they agree with.
But if it's going to work as a mass campaign, it's important that it's perceived as such so I think the email subject line would need to be the same for everyone's email - 'ME/CFS patients demand treatment equal to patients with other diseases' or something better than that.
Also, we can't expect recipients to read loads of long emails, and if each contains several points, they're going to be long.
So I'd suggest a layout that makes the points easy to spot at a glance. So (from your example letter) something like:
I am a patient with ME/CFS, who has been sick for X years. I'm writing to demand that congress and our health agencies treat ME/CFS equally to other similarly-disabling illnesses. To that end, my demands are:
Sustained research funding of $Y per year
$Y per year would mean that ME/CFS patients would get as much research funding per head as MS and Lupus etc. etc. The research must have ME/CFS expert-defined research subjects and include a diversity of patients. The research must include severe patients, who have been too often left out of research.
Patients must be consulted in our health agencies' next steps for our disease
Our health agencies' engagement model with ME/CFS patients must change to be more inclusive of patients and more inclusive of ME/CFS' heterogeneity, etc. etc.
oceiv said:
But, you all would have to figure out how non-U.S. patients could be involved. With a petition, it would have been available to international patients.
Our individual national institutions, histories and circumstances are mostly very different from the US and I haven't seen any demands that we could really copy closely. I suggest you forget about non-US co-campaigns and focus on this. After all, the energy for this comes off the back of the IOM report and that's going to have most impact in the US. I think it's best not to overload this campaign with too many ambitions, including international involvement.
oceiv said:
Edit each goal as you like. Different wording can give this advocacy action a more personalized feel.
I think that unless people are calling for the same goals and not variants (I want $50m a year! I want $100m! I want $250m!) it's going to confuse the recipients, make it look as though we don't know what we want, and weaken the campaign. I'd suggest identical headings. But varying the supporting text might help.
oceiv said:
You can add or not add IOM quotes, depending on your opinion. But please stick to non-controversial parts
A lot of PWME struggle to write, and I think it would be helpful to write two versions of an introductory para to the letter - one that made much of the IOM report (for those who want to use that ammo) and one that doesn't mention it (for those that don't).
I think it would be great to have a letter that people could build like Lego, from ready-made bricks.
Anyway, these are just my views.
But with a different advocacy strategy, the change could be a plus. Here's hoping the above or some modified suggestions will work to get us back to progress on our action.
I think this is a very smart strategy that gets us out of the hole of needing everyone to agree before we can move forward.
@oceiv, is the next step for individuals to volunteer to write individual demands (or lead small teams to develop those demands that are still a bit unformed)?
If so, I volunteer to write the para requesting more research funding, if no-one else wants to do that. I'm already fairly familiar with the issues and sources.