Brainstorming for positive and constructive advocacy ideas

[Bob]

I appreciate the posts outlining why people think that ME patients don't get involved in more campaign and advocacy work...
It would be helpful to understand how to reach more people, and get more people involved.
But really this is all just speculation... We don't actually know why more don't get involved...

So may I ask people to try to stick to positive and constructive ideas about reaching out to people, rather than picking apart the reasons why things might not be working the way we would like them to...

I'm not aiming this comment at anyone... I've done my fair share of analysing in this thread.

But I'd prefer this thread to remain about positive and constructive ideas.

We might not come to any conclusions as a group, but - you never know - any ideas might stimulate people into setting up projects in the future.

 

[leela]

So Nielk, try to understand that everyone does what is within their scope. Save your enthusiasm and frustration for the areas where it would
serve best to direct it.

Like it was said above, some of us do invisible service/donations/actions. There are many different styles and arenas of advocacy/activism.
I do what I can, and that looks different to what you can do.

Oh Nielk, now that I see that sentence on the page and not in my head, I can see how you took it that way. I'm really sorry. It's not how I meant it. Trust that I never slap people

The thing I was trying to communicate was to "save up" (does that make more sense?) your energy, whether it's enthusiasm, or frustration (it can be a good motivator too) for people who haven't already said no thank you to whatever you are asking.


~~~~~~~this part is general musing~~~~~

In my experience any earnest and sincere endeavour works best when one is not attached to the outcome; you do the best
you can do, with the best of intentions, and know that you don't have control over anyone else. Just the very act of you doing what you do can have far-reaching, unseen effects.

You just keep doing your very best, whatever that looks like, with the intention that it spurs change or inspires or motivates. If you're attached to the outcome, that just generates more frustration/anger/judgment if the outcome doesn't match your expectations. Then it's easy to make up stories in your head as to why people aren't doing those things--and you really never can know, can you?

I'm not saying not to have goals, and very clear intentions; it just work better IMO if one doesn't let expectations color what reality reflects back.

 

[leela]

Bob, that's twice I've cross-posted with you

Thank you for your suggestion to refocus.

 

[Tuha]

I appreciate the posts outlining why people think that ME patients don't get involved in more campaign and advocacy work...
It would be helpful to understand how to reach more people, and get more people involved.
But really this is all just speculation... We don't actually know why more don't get involved...

So may I ask people to try to stick to positive and constructive ideas about reaching out to people, rather than picking apart the reasons why things might not be working the way we would like them to...

I'm not aiming this comment at anyone... I've done my fair share of analysing in this thread.

But I'd prefer this thread to remain about positive and constructive ideas.

We might not come to any conclusions as a group, but - you never know - any ideas might stimulate people into setting up projects in the future.

Bob, this is exactly what I wanted to say. The problem is that these kinds of discussions always finish with the discussion that the patients cannot participate for some reasons. I had several discussions about and it goes nowhere - just waste of time and energy.
Its also often a game with words- now I am reading that I called patients lazy and apathetic but this is simply not correct - I just said that I see apathy everywhere.
How you say bob, we should focus on ideas how to improve our situation and then also to try to develope these ideas instead of talking the ours about the problems.
I wrote it already here but I will do again for better start. I think our key problem is that we dont have an effective and fast way to contact the patients who would like and are able to be activ. I think after all problems which were mentioned here (too sick, apathy,...) there would be still a lot of patients, who would like to participate in many actions.

I think an effective advocacy you can do with 10 000 people or even less. regarding our numbers 17 mil. people - it means to get 0,06 % of patients so it means 1 patient from 1 700. I think its realistic. The problem is that there are so many organisations (only in US at least 100), forums, support groups that its really difficult to distribute the informations about an action. So we need to find an effective way how to communicate. What was my idea - to use a system of mailing list. I dont know if it would work but I wrote a thread about. I dont know what the people think about because there was i think just 1 person who reacted several times.
So feel free to post there what do you think about. or we can take this discussion to this thread. here is the link:
http://forums.phoenixrising.me/showthread.php?13909-Could-this-help-ME-CFS-advocacy-and-actions

I think we really nead to solve this communication problem because we will not move.



I also liked sams idea about list of research projects/advocacy activities which need financial support. Now, When I want to donate I know about maybe 2-3 possibilities and thats everything. So we could develope also this idea.

 

[justinreilly]

One way to approach this maybe what motivates us to do this stuff. Maybe if we can convey that to others, they will participate more. One problem is learned helplessness or the fact that not enough has changed over the years despite individuals raising the alarm. Leela had a good perspective with which I agree. Here is a quote I like from William Sloane Coffin, jr that i like and embodies some of what i feel:

"Hope is a state of mind independent of the state of the world. If your heart's full of hope, you can be persistent when you can't be optimistic. You can keep the faith despite the evidence, knowing that only in so doing has the evidence any chance of changing."

 

[willow]

I was wary at first too about having a facebook page but, you can control a lot of it to make it secure. No one can read any of your information unless you allow them in. Who are people so scared of that they will know personal information? .

I know I can control the privacy issue. This is not my problem with FB. Something about the layout serious disturbs with my sense of balance. Even a minute or so on the darn thing and I am so disorientated, nauseous, dizzy for many hours, my whole day gone.

I have a healthy friend who feels the same, though much, much less severely.

Petitions I sign, and I contribute to other surveys etc when I can.

Leela, your general musings on doing our best without attachment to outcomes resonates with me and Justin, that's a great quote. Very constrcutive and focussing.

 

[Firestormm]

Something did occur to me last night - about from thinking about the Trojan War [cough] Anyway, I have often wondered why what I thought were promising studies were never followed up. I mean they get published and then..... nothing.

So is there a way 'we' could discover how to revisit some of them to (I don't know) expand the patient cohort and complete a bigger trial or use a different (better) criteria etc. etc. For example: there was a study that looked at brain imaging and showed how patients with 'ME' had different parts of the brain being used to patients with Chronic Depression; and then there are other Brain Imagining studies that I was particularly interested in too.

How would that be possible I wonder?

Edit:

Yeah so follow-up studies. And/or commissioning them. Here's another one I pinched from Barb I think earlier - a follow-up critique of the PACE Trial! He he he he he! Though to be fair it is needed I think. They promised details of 'recovery' rates etc. but even so it would be great to have something else to compare PACE too!

Edit Edit:

Not one that cost so much though - OK?!

 

[alex3619]

For example: there was a study that looked at brain imaging and showed how patients with 'ME' had different parts of the brain being used to patients with Chronic Depression; and then there are other Brain Imagining studies that I was particularly interested in too.

Hi Firestormm, I am fairly sure you have seen it but I wanted to be sure: the Komaroff EEG spectral coherence study showed a clear brain difference between CFS and depression - his method correctly diagnosed depression at 100% for those affected in the study, but was less successful for CFS. There are clear brain differences, and the research continues.

What the issue is I think is funding. Almost none. The flavour of the year gets funding but then the flavour changes. This is more about funding issues than follow-up. There is no further study if there is no funding.

Bye
Alex
http://www.biomedcentral.com/1471-2377/11/82
This is a highly accessed article. The full paper is available.

 

[Aileen]

I know I can control the privacy issue. This is not my problem with FB. Something about the layout serious disturbs with my sense of balance. Even a minute or so on the darn thing and I am so disorientated, nauseous, dizzy for many hours, my whole day gone.

I have a healthy friend who feels the same, though much, much less severely.

Petitions I sign, and I contribute to other surveys etc when I can.

Leela, your general musings on doing our best without attachment to outcomes resonates with me and Justin, that's a great quote. Very constrcutive and focussing.

What about fundraising contests that are NOT on facebook (or similar sites)? Are those something you participate in if you are aware of them? Do you need step-by-step instructions on how to vote? Or are contests in general just too confusing?

At present I am trying to get people to vote in 3 contests, none of which are on facebook, but am not having any more success than with the ones that were on facebook and am trying to figure out why. Any insight would be most welcome.

 

[BobM]

Great Idea, I read but do not post much, I am preparing to attend CFSAC once again, If anyone else is going or knows of someone that is attending please email me at bobmiller42@msn.com. I wish to do a little something for patients and need some help. It does link in to working together and Funding.

 

[Aileen]

Morning Aileen,

I 'liked' your previous comment. This one though is perhaps asking the 'wrong' question? All too often these Facebook voting competitions assume that folk know about the organisation running in the competition and I don't think that they do - or if they do then that they 'agree' with that particular organisation either because they simply don't, or don't understand, or are perhaps misinformed.

If said organisation have an 'image problem' or are judged by some to be only about one issue or indeed are not in the same country - then the 'problem' is with that organisations image and not with the competition. Same goes I suppose for these petitions one sees about the place (although they may not have been well conceived in their entirety).

Then of course there is the simple fact that people can't/don't want to get involved I suppose. Not easy is it?

You've made some really good points. Maybe what we need to be doing is having an information campaign so that patients get to know about the various organizations - what they do, what they have accomplished in the past and what their future goals are. Maybe that would help when these contests come up. Those of us who are not newbies really should get to know the players, shouldn't we? Perhaps as a start we might ask Cort if he'd write a feature article on an organization once a month?

 

[Aileen]

its the same problem like with other advocacy activities. we dont have a good system to contact the other patients. yes, we put some threads on this forum in advocacy section but who reads it? you can see that these threads were read some hundreds times but i think its all the time the same 50 persons or even less. I read these threads several times, maybe 20 and it always counts. so this system to inform the patients is not efficace, it can be part of the system but not the only one. We need another better system how to contact fast and efficace other patients (with being sure that they will read it) not only for these contest but all kinds of advocacy.
I will repeat myself- This is our key problem!!!

Actually we do; it just isn't being used much. On other forums, Cort would have to tell us about this one, the owners have the ability to send personal emails to each member of the forum. Group administrators can do the same for all members of their group. You type one email, hit send and it goes to everyone into their email (not the personal message system here but your actual email with the address you signed up with). Very effective, fast and simple. Don't ask me why it is not being used by many. I use it for my groups although very sparingly.

 

[Bob]

Great Idea, I read but do not post much, I am preparing to attend CFSAC once again, If anyone else is going or knows of someone that is attending please email me at bobmiller42@msn.com. I wish to do a little something for patients and need some help. It does link in to working together and Funding.

Hi Bob,

There is a discussion thread specific to the CFSAC meeting, if you think it might be worth posting your comment on there:
http://forums.phoenixrising.me/show...g-date-has-been-announced-for-November-8-2011

Take care,
Bob. (the other Bob )

 

[willow]

What about fundraising contests that are NOT on facebook (or similar sites)? Are those something you participate in if you are aware of them? Do you need step-by-step instructions on how to vote? Or are contests in general just too confusing?
.

Yip, it's your last comment; it's more about understanding the organisation's objectives than how to vote. If caught on a very good day I'll do it. (I've previously supported causes I later realise I hadn't sufficientlyunderstood, and regretted doing so.)

 

[willow]

Maybe what we need to be doing is having an information campaign so that patients get to know about the various organizations - what they do, what they have accomplished in the past and what their future goals are. Maybe that would help when these contests come up. Those of us who are not newbies really should get to know the players, shouldn't we? Perhaps as a start we might ask Cort if he'd write a feature article on an organization once a month?

Yes, I know there's some organisations I don't trust, and wouldn't want them to have extra money to disseminate a study/image of ME I diasgree with.
If I'm unfamiliar with the organisation I would read more than 1 source, or read only sources that I fully trust. A significant part of that is someone who challenges the psych and mysterious-insoluble disease angle.

 

[eric_s]

Actually we do; it just isn't being used much. On other forums, Cort would have to tell us about this one, the owners have the ability to send personal emails to each member of the forum. Group administrators can do the same for all members of their group. You type one email, hit send and it goes to everyone into their email (not the personal message system here but your actual email with the address you signed up with). Very effective, fast and simple. Don't ask me why it is not being used by many. I use it for my groups although very sparingly.

I think that's a good idea. Also for the Citgo contest the forums now have an ad up. I hope they will make use of these tools here on Phoenix Rising more. Of course one needs to find the right balance between reaching people but not annoying/flooding them.

 

[eric_s]

Also not everybody who comes to a forum is looking to particiapte in activities. Many just come to read or talk a bit. In the end probably one has to respect that too, but i totally agree, we need to try to make better use of the big potential our community has. We are so many, we have a lot of power. Dr. Friedman also talked about that in his radio interview here. We have to try to get more federal funding, but we can't wait for them/rely on them. We have an important part to play ourselves.

 

[Bob]

To answer the question about voting competitions... Here are some of my thoughts...

I think if we manage to fully inform people about the organisation that is being voted for, and the voting process, then it might capture people's imaginations, and then we are more likely to get them on board. For all of the voting contests that I've been asked to get involved with, I've never been fully informed about the process, including who is organising the votes, why they are giving money away, the voting process, and what the winning outcomes will be. So I get asked to vote without being given a clear and complete picture. And it's quite a lot of work and brainpower for someone to find out all of this for themselves. I also don't get told anything about what the money will be used for.

If I was given a full background of all the information, then it might mean more to me personally, and i might feel like I can 'buy into' the contest or have some 'ownership' of the contest (i.e. it's not just some anonymous process).

But these are just some thoughts... and I don't know that any of this would really make a difference, generally speaking.

To be honest, I do find voting competitions a bit irritating, and I think it will be difficult to win over people because of the irritation factor. The reason that I find them irritating is partly because they are impersonal, and also because there are constant demands to re-vote without any guaranteed outcome.

But when being asked to vote, I think it would be helpful to be told about:

Who is organising the contest.
Why are they giving away money.
How much money is involved for winners and runners up.
How many winners will there be.
What personal details do I need to give in order to vote, and what accounts do I need to have (i.e. a facebook account)
How often I need to vote.
How many votes are needed in order to win.
When will the results be known.
How the money will be used by the winning organisation.
What sort of work the charity that we are supporting is involved with.

I know this is a lot of work to put all this info together, but if I am to feel personally involved in the voting contest, and if it is to capture my imagination, then I think it is helpful to know all the info.

Anyway, these are just my thoughts, in case helpful.

 

[Boule de feu]

To answer the question about voting competitions... Here are some of my thoughts...

I think if we manage to fully inform people about the organisation that is being voted for, and the voting process, then it might capture people's imaginations, and then we are more likely to get them on board. For all of the voting contests that I've been asked to get involved with, I've never been fully informed about the process, including who is organising the votes, why they are giving money away, the voting process, and what the winning outcomes will be. So I get asked to vote without being given a clear and complete picture. And it's quite a lot of work and brainpower for someone to find out all of this for themselves. I also don't get told anything about what the money will be used for.

If I was given a full background of all the information, then it might mean more to me personally, and i might feel like I can 'buy into' the contest or have some 'ownership' of the contest (i.e. it's not just some anonymous process).

But these are just my thoughts... so I don't pretend that I know that any of this would make a difference. To be honest, I do find voting competitions a bit irritating, and I think it will be difficult to win over people because of the irritation factor. The reason that I find them irritating is partly because they are impersonal, and also because there are constant demands to re-vote without any guaranteed outcome.

But when being asked to vote, I think it would be helpful to be told about:

Who is organising the contest.
Why are they giving away money.
How much money is involved for winners and runners up.
How many winners will there be.
What personal details do I need to give in order to vote, and what accounts do I need to have (i.e. a facebook account)
How often I need to vote.
How many votes are needed in order to win.
When will the results be known.
How the money will be used by the winning organisation.
What sort of work the charity that we are supporting is involved with.

I know this is a lot of work to put all this info together, but if I am to feel personally involved in the voting contest, and if it is to capture my imagination, then I think it is helpful to know all the info.

Anyway, these are just my thoughts, in case helpful.

I have only one question: Why does it always have to be so complicated?
When you see someone trying to make a difference and to promote CFS, you don't think it's enough motive for someone to support her or his initiative? We are a big community sharing the same problems. We won't get anywhere unless we work in the same direction. I'm surprised that we are having such discussions.
It's complicated enough without making it more complicated! Well, that's my opinion...
This is why I vote everyday. I'm not participating in all voting contests (I'm allowed to pick and choose my battles), but I feel I'm doing my share. For that reason only, I give myself a pat on the back. =-)

 

[Bob]

I have only one question: Why does it always have to be so complicated?
When you see someone trying to make a difference and to promote CFS, you don't think it's enough motive for someone to support her or his initiative? We are a big community sharing the same problems. We won't get anywhere unless we work in the same direction. I'm surprised that we are having such discussions.
It's complicated enough without making it more complicated! Well, that's my opinion...
This is why I vote everyday. I'm not participating in all voting contests (I'm allowed to pick and choose my battles), but I feel I'm doing my share. For that reason only, I give myself a pat on the back. =-)

We were asked for reasons why we think so many people are not inclined to get involved in voting.
And what would encourage more people to get involved?

I wasn't trying to make things more complicated - but I was discussing what might make it easier for other people to get involved, or what might motivate people to get involved.
If we take all of the work out of it for other people, by providing them with all of the info up front, then they might be more inclined to get involved.
If we explain all of the issues, then it might motivate people to get involved.
I don't know if what I've said is helpful or not, but it might help.

Boule de feu, you seem really capable, active and motivated, but for others who don't have the same motivation, or inclination to get involved, then it might take a bit more than just asking, or expecting, someone to vote. We might need to draw people in by stimulating their interest.

The reason we are having this discussion is because we have been asked how we might get more people involved.