• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

What common goals can everyone work towards, regardless of their view of the IOM report?'

WillowJ

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
oceiv said:
I read through this Leonard Jason article. Is this the one you meant, @WillowJ ? Do you mean the FDA study linked to in your research goal text?
Click to expand...
That's not the one I was thinking of, but is an interesting study. A newer version is here; Griffith has another take here. UK based one is here (not sure I read the full text of that). These are good citations for prevalence, as they are nuanced regarding different definitions and ways of selecting patients, etc.

Yes, the FDA Voices of the Patient report is excellent.

One Jason paper I was thinking of regarding lack of attention in medical school is here.
oceiv said:
I may have found the Lenny Jason research @WillowJ mentioned. It's for neuro-endocrine-immune disorders (CFS. FMS and Lyme). Not CFS alone: PDF link. Is this the one?
Click to expand...
Yes, that's a fantastic one, too. I knew there was more than one, but could think of only one, so glad you found another.

The UK papers on patient needs are like this:
http://www.ncbi.nlm.nih.gov/pubmed/20003363
http://www.ncbi.nlm.nih.gov/pubmed/22044797
Not sure I read the full text of the second.
Most of the info should be the same from country to country (what problems the illness poses). While benefits are different from place to place and it may be a little less hard in some parts of the US to get benefits with a "CFS" diagnosis once you have a strong claim, getting a strong claim still requires a helpful doctor, which is difficult anywhere. Particularly as it is not hardly taught in medical school (or conferences unless you specifically to to an ME one), you can't expect to find a doc who knows how to assess such a patient or find a test that will show a physiological defect (and as it's not a mental illness, this is required).
 
S

Sasha

Fine, thank you
Messages
17,863
Location
UK
oceiv said:
Good wording suggestion, @Sasha . I, like you, cut for length. If we're going to add in length to the letter, then I'm going to try to add back our original discussion points: well-define cohort/broad-range of patients (demographics, severity). These points were brought up early in the thread and had agreement. When I was trawling for research on patients and doctors, the studies I read reinforced the point repeatedly. If we don't have well-defined, accurate cohorts and we have inconsistent definitions, then the resulting research is going to be inconsistent and messy.
Click to expand...

My view on this was that there are limits on the detail of what we can expect to control when we ask for more money, and limits on how much congressfolks will understand, so even if we weren't fighting word limits, the fine detail should go. Also, if you want well-defined cohorts I think you have to say not only why that has been an issue but what 'well-defined cohorts' means in practice and I don't know that we had agreement on that (CCC, etc.). Just my view, though.

Are you now intending to add length to the letter? I thought you wanted to make the funding and intro shorter so as to have room for more points?

I'd just take out 'varying' in relation to budget cuts because I don't think it adds anything. I think 'future' covers all possibilities.

Your call on the wording, though - there's only so much help a group can be in drafting and editing, and ultimately I think you should feel free to decide on these things now. :thumbsup:
 
O

oceiv

Senior Member
Messages
259
@taniaaust1 Thank you for your kind words of encouragement. I know there are some funds to help parents of disabled children. Medicaid gets cut each year and since it's a program mainly for the poor, there are no lobbyists fighting against those changes.

@WillowJ Fantastic resources. Thank you, so much! I'm sure these studies will make the patient access goal much stronger.

@Sasha I had been wondering about the varying, too. The notion I was was trying to convey was that budgets fluctuate, but our share should be fair regardless of the fluctuations. Varying is not right. Fluctuating or nothing at all. as you suggest.

About the editing process (both content and wording): Even professional writers use writer's/editing groups. The input is irreplaceable and the group process generates ideas, which may not have otherwise been born. This has been true here in this thread, especially.

More specific to our action, 1) There are too many patient perspectives for only one person to think of everything 2) In order for our letters to have broad appeal and the best solutions for government problems wrt ME/CFS, they best come from more minds than one 3) As we've seen, some words can be very important. I thought the sentence was fine on its own. 4) I haven't spent much time in the online communities. Others can best incorporate what they've read from patients, all these years. 5) As seen, different people remember different research, facts, approaches from past advocacy. It's easiest to find things again when you're looking for something specific. 6) There are people who are each familiar with various elements we need. Each has his or her own strengths and knowledge area 7) I can't possibly do this alone.

I know the process can seem one thing, but the end result is we're almost done a research goal, born from many minds and therefore likely, appealing to many. It hits on many crucial points, priorities and fixes. It is strong because our discussion was strong and no doubt, because @Sasha is a good writer. The next goal is in progress. For the patient goal to be as strong, it will need the wonderful input of you all. Maybe you were just talking about the wording, but although the above has been put into practice in this thread, I thought it needed to be reiterated.

Not a full answer, but that's all for now.
 
Last edited:
WillowJ

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
How about:
For years, ME/CFS has gotten a meager $5 million average in annual funding. In 2014, ME/CFS was, as usual, near the bottom of the NIH funding list, 231st out of 244 diseases. Similarly-disabling diseases, Lupus and M.S., receive 50 times more research funding per patient per year, despite fewer patients combined.

Although NIH may well have varying future budget cuts, ME/CFS patients are asking for a fair share of the budget pie, regardless of the size of the pie.

Regardless of funding cuts and related issues, research for various conditions should be more equitable. Congress and NIH need to find a way to fund underfunded diseases such as M.E.
Click to expand...
 
WillowJ

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
oceiv said:
I found this automated congressional contact tool, today. It's not free, but it's not outrageously-priced, either.

http://oneclickpolitics.com/
Click to expand...

One Click Politics uses a proprietary system that geolocates your supporters by their address. Based off of this information, we match their record to the most up to date federal and state district maps and determine their specific legislative representatives. On top of that, you can elect to send to one or more specific representatives, even outside your supporters districts. You can send to a whole committees, parties or caucuses. Only One Click Politics gives you that finite control of not just your message, but also the intended recipient.
Click to expand...

That looks fantastic. Great find.

Looks like you need a website to put it in. Did you have something in mind?
 
WillowJ

WillowJ

คภภเє ɠรค๓թєl
Messages
4,940
Location
WA, USA
oceiv said:
I found this automated congressional contact tool, today. It's not free, but it's not outrageously-priced, either.

http://oneclickpolitics.com/
Click to expand...
WillowJ said:
Looks like you need a website to put it in. Did you have something in mind?
Click to expand...


oceiv said:
I was trying to think where it could be housed. I wonder if PR could or would be interested in temporarily housing it (I don't know who could answer that question) or maybe when @JenB launches her effort, this is one of the tools she'd be interested in incorporating. Maybe other people might have more ideas.
Click to expand...

I think we would ask @Mark , but I don't know how much he logs in these days, so we could ask @Kina .
 
O

oceiv

Senior Member
Messages
259
Thank you, @Kina ! I will. BuildQuorum looks interesting.

It's hard to tell if BuildQuorums automate the emailing-to-congress part of the process or not. It's cool that you can sign with Facebook, but it looks like non-Facebook users have to publicly sign their name address. If there's no option to hide that info, I wonder if it may deter some people.

Thanks for the character info, @Nielk .

It looks like the least expensive level of one click allows for one letter at a time. I checked on the research goal plus intro. If I did the character count correctly (in Word) on the last version, it's 2487 characters. My very rough draft of the patient access goal is 2483 (needs editing).
 
Nielk

Nielk

Senior Member
Messages
6,970
oceiv said:
It looks like the least expensive level of one click allows for one letter at a time. I checked on the research goal plus intro. If I did the character count correctly (in Word) on the last version, it's 2487 characters. My very rough draft of the patient access goal is 2483 (needs editing).
Click to expand...

We have just worked and are currently running a "one click" letter to congressional representatives from MEadvocacy and it was hairpulling trying to fit everything into the limitations of character.

It might pay for you guys to work with Jen Brea's ME Action endeavor. This is what she posted on fb:

We are going to be launching ‪#‎MEAction‬ this month (likely in the next two weeks) and we need your help! We are looking for actions to host in advance of our launch to the public.

Our core features right now are:

– petitions and petitions campaigns (larger overarching endeavors comprising many sub-petitions that can be, say, organized by congressional district)
– event campaigns (tools for organizing a day of protests, a month of film screenings)
– a membership directory to allow activists to connect and find others with skills or resources
– a stack exchange-style tool for proposing new actions
– user-submitted news and opinion pieces (both original pieces and links to content hosted elsewhere)

In time we hope to add:
– Training modules and articles on best practices.
– Google Hangouts with activists from other communities
– One Click Politics (for contacting members of congress – US, ––Canada and Australia with UK + New Zealand coming soon) – this is something that is pricey but we can add it immediately if there is an emerging action that could use this tool.
– Fundraising tools

If you are planning an action, we'd love to promote it. And if you are planning a petition, event, or have a plan to lobby Congress, please do be in touch. (We are also looking for actions hosted elsewhere that we can help promote/spread the word!)

Jen Brea
Click to expand...
 
O

oceiv

Senior Member
Messages
259
Denise said:
@Nielk - thanks very much for sharing your experiences and suggestions. :)
Click to expand...

Ditto to @Nielk and thanks to you as well @Denise .

I'm going to post a separate thread for our doctor access goal, as soon as I am up to it. In the meantime, see the poll and discussion on the same topic. Very insightful conversation and sadly informative poll results.

I messaged @JenB, as we've discussed for a while now . Not sure how often she signs in here, so if someone is in contact with her, please let her know.
 
Last edited:
Mark

Mark

Senior Member
Messages
5,238
Location
Sofa, UK
Kina said:
Please start a Conversation with us so you can tell us how Phoenix Rising can help.
Click to expand...
No sign of this Conversation yet; if you would still like us to help with this we'll be happy to set something up. Please include wdb in the Conversation because there will presumably be some technical implications.
 
Mark

Mark

Senior Member
Messages
5,238
Location
Sofa, UK
WillowJ said:
I think we would ask @Mark , but I don't know how much he logs in these days, so we could ask @Kina .
Click to expand...
FYI: I do still log in every day, and I'm still reading the forums and doing some work behind the scenes, so I do notice when you give me a mention or send me a Conversation (though it may be quite a while before I reply if it's non-urgent). I don't post on the forums very often these days, it's true, but I'm still here...:)
 
You must log in or register to reply here.