Advocacy - Is it possible to have a real discussion about on the web?

[urbantravels]

Great post, Tina.

I want to get something off my chest that might seem like an irrelevant or trivial issue, but I just want to ask the question and I don't think it's *completely* trivial: Why does PANDORA punctuate its acronym in a non-standard way? I've seen it as P.A.N.D.O.R.A. and now you're rendering it as P-A-N-D-O-R-A. Both methods I think are distracting and give an unprofessional appearance.

I make this comment, not in the spirit of anonymous Internet snark, but because little things like that bother me when I know they're likely to affect the perception of organizations and causes that are worthy of attention and respect. Appearances *do* matter, because they are one of the ways we communicate to one another about credibility and intentions.

I worked in the publishing industry for years, have expertise in copyediting and proofreading, and know both the AP stylebook and the Chicago Manual pretty well. When my eye "trips" over something in reading I can usually tell you the reason why. The Chicago Manual says periods should not be used with abbreviations that appear in full capitals regardless of the number of letters. Abbreviations in this context includes both acronyms and initialisms. I assume that PANDORA is an acronym (pronounced "Pandora") rather than an initialism (which would be read by pronouncing each of the individual letters), but either way, the periods should not be present.

I think I offended Dolphin at some point in the past on this message board by complaining that an article linked to was in Comic Sans (a font that is widely derided for being a sign of unprofessional text production) but I was actually in earnest. So, please indulge me, because I have wanted to ask this question about PANDORA for a long time.

 

[Wayne]

It is nice to see the favorable comments here .... For patients, all I can recommend is that you financially support whatever organization or organized effort you think is responsible in how it is run and is working at a strategy you think will be effective.

Thank you very much Tina for your informative and insightful post. I feel a little sheepish about admitting this , but I've really not known what PANDORA stood for. Then today I somehow came upon their website, and thought to myself, "Oh, so this is PANDORA". But until reading your post, I didn't really connect it with being any kind of advocacy organization. I now know a "little" better.

The reason I'm mentioning this, is because I believe many PWCs (I certainly include myself) have very little insight or understanding of how advocacy works. If we've never involved ourselves in it prior to CFS, it is especially difficult to understand even the most basic concepts of it post-onset CFS, unless it's presented to us as if we're 6-year olds. (Denzel Washsington often used the phrase "please explain it to me as if I were a 6-year old" when he played a lawyer in the movie Philadelphia).

But I have wondered, given my limited knowledge of advocacy, just how I might be able to contribute in whatever limited way I can. I'm inclined at this time to look more in depth at the PANDORA website, and learn more, so thank you for steering me in this direction.

CBS, you asked what we would like to see from an advocacy organization. I know there are far more pressing priorities, but I've long thought it would be great if somebody/organization were to confront the Psychology profession for allowing arm-chair psychologists to hijack their profession with the psychologization of ME/CFS for the past 25+ years.

Also, I keep hearing the Bill and Melinda Gates Foundation wants to give away $60 billion, primarily for causes surrounding global health issues. Seems like requesting $60 million or so for basic ME/CFS research (a piddly .1% of $60 billion) wouldn't be asking for too much. But I guess somebody has to ask first.

Thanks CBS for starting this thread. I've generally stayed away from some of the threads surrounding discussion of advocacy because of the tendency for them to become inflamed. This in itself probably keeps a very high percentage of PWCs from even considering getting involved and becoming unduly enervated by this kind of stress.

Best to All, Wayne

 

[Wayne]

Why does PANDORA punctuate its acronym in a non-standard way? I've seen it as P.A.N.D.O.R.A. and now you're rendering it as P-A-N-D-O-R-A. Both methods I think are distracting and give an unprofessional appearance.

Hi Urbantravels,

I think you make a valid point, and would be good for PANDORA to consider your constructive feedback. For me, it takes so very little to confuse my brain these days, that when I see things that are seemingly the same but presented differently, I end up doing a double-take, and double-takes drain my energy. So I often quickly decide to move on; something that I know causes me to pass over important information.

Best, Wayne

 

[usedtobeperkytina]

Thank you for your question. Actually, I secretly wondered the same thing, but I never asked. I am from newspaper, so I am familiar with AP Style also. Since I just started a month ago, I don't know the history of why the acronym always includes dashes or periods. I know when I put in "PANDORA" (without either) in Google, I get lots that is not the right PANDORA. It seems PANDORA as a label is fairly common. I know it is the name of some beads. Let me tell you, it has been hard for me to put in dashes or periods. I'm sure there is a logical explanation.

Let me see if I can get an answer for you.

Also, before I started working for (oops, almost did it again) P-A-N-D-O-R-A, I had only heard of them in a vague notion that they do something for CFS. Getting people to know what they (I guess now "we") do is part of my job.

You should also know that we will soon be changing the website to clean it up, make it more modern. We've just had so much going on (conference and study news, etc.) since I started, plus I needed a little bit of training and there was a backlog of projects to be done, so that the website changes have been put lower on priority list. We hope that after this month (which is also very busy with CFSAC meeting and New Jersey conference) we will get the website done.

You can see the NEI Center website, which is done nicely. http://www.neicenter.com/

Thanks guys. I welcome any other questions or criticism. Marla Silverman, the founder, and I believe in benefiting from sincere criticism, another reason I like working with them.

Tina

 

[usedtobeperkytina]

Recently, Dr. Nancy Klimas, Dr. Ken Friedman and Marla Silverman were on the radio talking about XMRV. You can listen to it here: http://www.litemiami.com/spotlite/index.aspx

Scroll toward the bottom, where the orange and brown area is. It is the program labeled 9/19 11:00 p.m.

You will learn more about P-A-N-D-O-R-A.

Tina

 

[jspotila]

As you guys might know, I am now working for P-A-N-D-0-R-A. It is nice to see the favorable comments here.

You should know, through conferences and e-mail and occasionally by phone, these organizations do speak to each other. Some serve with more than one of these organizations. For example, Dr. Ken Friedman serves for three organizations in different roles: P-A-N-D-O-R-A, New Jersey Chronic Fatigue Syndrome Association and IACFS/ME.

But, each organization has what they think is the best strategy. I have also found the multiple organizations disheartening. But I now see it differently. As Mark said, an organization will collect money and then set their strategy. There is so much that needs to be done. Yet, there are so little resources. So organizations have to set priorities of what they think is most effective. Another organization might make a different decision. One is not wrong and another right; we all have the same goal. And who knows what will work and won't work? Only history can say. We can all just do the best we can of what we think is best.

<snip>

For patients, all I can recommend is that you financially support whatever organization or organized effort you think is responsible in how it is run and is working at a strategy you think will be effective.

But remember, we are working toward the same goal. Hopefully, the collective effort, from multiple different angles, will make a difference, given this great opportunity we now have because of the XMRV news.

Tina

Excellent post, Tina. A multi-prong effort is more likely to succeed. There is more than enough work and ideas to go around, and everyone who is willing and able to get involved can find a way to make a difference.

 

[kdeneris]

Thank you very much Tina for your informative and insightful post. I feel a little sheepish about admitting this , but I've really not known what PANDORA stood for. Then today I somehow came upon their website, and thought to myself, "Oh, so this is PANDORA". But until reading your post, I didn't really connect it with being any kind of advocacy organization. I now know a "little" better.

The reason I'm mentioning this, is because I believe many PWCs (I certainly include myself) have very little insight or understanding of how advocacy works. If we've never involved ourselves in it prior to CFS, it is especially difficult to understand even the most basic concepts of it post-onset CFS, unless it's presented to us as if we're 6-year olds. (Denzel Washsington often used the phrase "please explain it to me as if I were a 6-year old" when he played a lawyer in the movie Philadelphia).

But I have wondered, given my limited knowledge of advocacy, just how I might be able to contribute in whatever limited way I can. I'm inclined at this time to look more in depth at the PANDORA website, and learn more, so thank you for steering me in this direction.

CBS, you asked what we would like to see from an advocacy organization. I know there are far more pressing priorities, but I've long thought it would be great if somebody/organization were to confront the Psychology profession for allowing arm-chair psychologists to hijack their profession with the psychologization of ME/CFS for the past 25+ years.

Also, I keep hearing the Bill and Melinda Gates Foundation wants to give away $60 billion, primarily for causes surrounding global health issues. Seems like requesting $60 million or so for basic ME/CFS research (a piddly .1% of $60 billion) wouldn't be asking for too much. But I guess somebody has to ask first.

Thanks CBS for starting this thread. I've generally stayed away from some of the threads surrounding discussion of advocacy because of the tendency for them to become inflamed. This in itself probably keeps a very high percentage of PWCs from even considering getting involved and becoming unduly enervated by this kind of stress.

Best to All, Wayne

I also want to thank Tina for her post. (I'm against the dashes, too. I don't know how you can stand typing it out.) Otherwise, Pandora is a great name. I supported Pandora in Chase Community Giving, but I hadn't known they were doing advocacy as well as research.

Hi, Wayne. I just wanted to say that discussions of advocacy tend to become inflamed in most groups, not just ME/CFS groups. Advocacy is inherently political, (you can't entirely take the politics out of it) in the sense that people have different beliefs about how the group should try to achieve its goals. Or even what the goals of the group should be. Or who should be in the group.

These are all serious questions, and there doesn't seem to be a lot of agreement about the answers to them in the ME/CFS community. Successful advocacy requires the advocacy group to have some basic agreement on these fundamental issues, or their group efforts won't accomplish anything.

So it does make sense to have multiple advocacy groups, who work in different ways, or deal with different issues. There is an enormous amount of work that needs to be done to improve the lives of people with ME/CFS.

If you want to have an impact on the psych lobby, collective legal action is the only way to really make a dent. There is a thread, "Time for a Lawsuit" that Levi started, discussing some of these issues.

Kim

 

[usedtobeperkytina]

Ok, well, I asked.

I found out that there are other organizations / companies, etc. that have the name PANDORA. So the founder registered a trademark as P.A.N.D.O.R.A. to emphasize that it is not referring to the Greek mythological figure. Of course, just because the registered trademark has the periods, doesn't mean it has to be used in typing. And as you said, news media would likely just list the acronym without regard to trademark.

Recently, the new website will use P-A-N-D-O-R-A. This will be a way to emphasize the letters stand for words and will make sure people go to the right website. So, since that is the case, the use of dashes instead of periods to get people used to it.

But, there has been some conversations with legal counsel about this issue. They don't have to use any form of "PANDORA" because any other thing can be registered at any time and it is common for a corporation (profit or non-profit) to have a DBA name. That means, it isn't the real name of the organization but is the name they are "doing business as".

Of course, at this point, P.A.N.D.O.R.A. has already developed a reputation.

We (now that I speak for the organization) are open to listening to suggestions at any time. Feel free to share your opinions.

Tina

 

[usedtobeperkytina]

Thank you JSpotila and others.

Tina

 

[bakercape]

easier to nominate

Tina
This may have already been talked about in this thread so forgive me if it has I'm too tired right now to go back and read. But if there is any way in future contests to be able to nominate or vote for P.A.N.D.O.R.A. without writing out the full name or using the punctuations I think it might help get some more nominations/votes. You guys are doing great. Thank you
Keith

 

[urbantravels]

Quite apart from the issue of how odd and non-standard ("homemade") it looks, either P.A.N.D.O.R.A. or P-A-N-D-O-R-A takes a heck of a lot of keystrokes to type!! And I agree with other posters that the press is not going to spell it either way since those are not standard style.

I would not agree that using PANDORA is somehow going to confuse your intended market/audience that you are actually referring to the mythological figure Pandora; the only possible trademark issue is if someone else is using PANDORA as an acronym or initialism for a *similar* organization. No doubt there are plenty of companies and organizations that use the name PANDORA or Pandora in other contexts.

I still don't see an answer to the question of whether it is an initialism or an acronym? An acronym would be pronounced "Pandora;" an initialism would be pronounced by saying all the letters, as with "N-Double-A-C-P" or "WWF".

 

[usedtobeperkytina]

baker, urban, thank you for your comments. I will relay them. If you see the full name, you can copy and paste. But, maybe we can do different in the future. I will pass it on.

You pronounce it "Pandora". But the letters stand for the name: "Patient Alliance for NeuroEndocrineImmune Disorders Organization for Research and Advocacy"

Thank you guys.

Tina