Brainstorming for positive and constructive advocacy ideas

[Nielk]

That's why some people here took the initiative and are working very hard on the Facebook page ME/CFS Fundraising Group
at https://www.facebook.com/groups/115200951912652/
After many months of begging, there are 101 members today!
Facebook is THE social network system that reaches the most people today.

I think that there is a huge amount of apathy from patients. They don't feel that they can make a difference, so why try.
They have been sick for a long time with no positive treatments for them. They don't feel like their action, no matter how easy it is to do, will change their situation.

How does one bring them to the awareness that it is US, the patients who CAN make a difference?

 

[floydguy]

I think Alex hit on a big problem and that is that many people are hiding in the shadows. At least in the US, a dx of Lyme or something else garners more respect (even though chronic lyme has it's own set of problems). Until this disease has biomarkers and is recognized beyond fatigue (the yawning yuppie soccer mom) I don't think things will change. We need credibility and acceptance of what ME (CFS) is and what it is not. I read that only 28% of MDs have any confidence at all in dx'ing CFS. This is atrocious. MDs are not a modest group.

 

[Aileen]

I think that there is a huge amount of apathy from patients. They don't feel that they can make a difference, so why try.
They have been sick for a long time with no positive treatments for them. They don't feel like their action, no matter how easy it is to do, will change their situation.

How does one bring them to the awareness that it is US, the patients who CAN make a difference?

I have to agree that there is so much apathy. I think you have found one of the reasons. I have been giving this a lot of thought and I think here in Canada and this probably applies to most western countries, we have become used to having almost everything provided for us. We have been spoiled. The government provides most of the services we need, we usually don't have to pay out of pocket. If the gov't doesn't do it, then the company provides it. If you don't work or your company doesn't offer something, then there are charities. So many of us have never had to advocate for ourselves before. We have forgotten how, I think. I know that doesn't apply to everyone but I think that generally sums up what has happened over time since WWII.

A lot of the social services we enjoy here in Canada today did not exist prior to WWII, they came about slowly after the war. My parents noticed a huge difference in the attitudes of their generation towards work, volunteerism and simply doing things for yourself then my generation and the ones that followed. Expectations changed. Now we are trying to change them back, a harder task, and in very sick people! We have a tough job ahead.

Ironically with some governments on the verge of going bankrupt people are going to have to start learning to do for themselves again. From the outside watching it is very telling that I see huge protests in these countries. Instead of people fighting to keep their sovereignty they are fighting to keep the government doing everything for them and giving them everything.

I'd love to hear what some of you think about this. Especially people from other countries. Have you noticed a shift in attitudes or a general complacency in your country?

 

[Nielk]

I found this website that gives a lot of information of how to raise awareness and do funding for non-profits.
http://www.fundraising123.org/files/Lisa Simpson Final 3.16.pdf

It is pretty extensive and I only quickly scanned it but, one thing popped out at me that there is a need to make it personal.
Sorytelling is very effective especially if a picture is included. It brings a face to the disease, touches people's hearts because that's what we need to do to evoke empathy.
Maybe, a booklet can be organized with many personal real stories with pictures attached and do a mass mailing with this.

 

[leela]

I think that there is a huge amount of apathy from patients

I will add that are more than a few of us dinosaurs or technophobes out here who do not use facebook.
As much of the advocacy and voting activity happens there, this could account for a certain percentage
of what is being viewed as "apathy."

I did create an account for voting in Vivint and Chase, but I have to tell you that, since privacy (or the illusion
of it) is important to me--and to many of the people who don't use FB--it was a pain in the arse to turn the
app on and off every day for voting. (Apps are the pesky way they track everything you do so they can use it for marketing.)

The other factor to consider is that many of us have already confounded and inwittingly aliented our (dwindling) friend circle
just by being sick. Add to that their myriad other friends who are sending them every day petitions to sign against this or that tragedy or outrage, vote for their child in the cutest baby contest, vote for their teenager in the best app contest.....and you have an overloaded inbox, to-do list, and compassion fatigue.

I'm not making excuses here, so much as offering an opportunity to shift the perception of people as lazy and apathetic, to a wider perspective of the many factors that disincline people to participate in these kinds of efforts.

 

[ahimsa]

What leela said. I try to participate in non-Facebook voting sites but I don't do Facebook.

Also, I donate a little bit here and there for ME/CFS research and awareness. I am lucky to have a fairly good financial situation (financially dependent on my husband) or I would not be able to make any contributions. However, I don't feel comfortable posting details on this forum (e.g., there were some forum threads where people posted what they contributed to various institutions and a running total was kept).

So, please don't feel too depressed that patients are apathetic. They may be doing things but just aren't posting about it in the forums!

For example, even if I did have a Facebook account it's so much easier for me to make financial contributions every once in a while than to follow all these forum threads and vote at all the different places. Being online just to get email and read this forum takes a lot of mental energy. Sometimes I stay offline for days at a time or even a week. And I'm no technophobe (former software engineer). I'm just happy to do things in real life instead of online. I'm so happy not to have Facebook in my life but to each his own.

Edited to add: I see now that my message was off topic from the original goal for this thread -- "Brainstorming for positive and constructive advocacy ideas." I did try to keep my tone positive but I did not contribute any new ideas for advocacy. So, oops, sorry about going off on a tangent here. I agree with Bob that listing ideas for what could be done is the best use for this thread. Thanks, Bob, for trying to refocus the thread.

 

[Esther12]

I'm off facebook too.

I'm not entirely comfortable admitting it, but it could partly due to some of the shame/embarrassment/uncertainty that surrounds being unable to work because of CFS. This could be a general problem with advocacy/campaigning type things for CFS? Given the way that many people think it's appropriate to treat those diagnosed with CFS, I do feel a bit uncomfortable with the diagnosis.

I never liked msn messenger/myspace/etc prior to getting ill, so hopefully my own insecurities are not a significant factor in my desire for on-line anonymity.

 

[Bob]

With regards to why people don't vote, I think it might be to do with capturing people's imaginations. It doesn't really feel like you are achieving anything as an individual when voting or signing a petition for example. It's anonymous and nothing happens afterwards - there's no response - and your individual vote doesn't feel like it's going to make a difference. That's just my thought on the matter though - I don't know if i'm right.

In relation to ME/CFS patients getting involved in advocacy work, I don't agree that there is apathy at all. It's far more complex than that. ME/CFS is such a devastating, confusing and exhausting condition to have to deal with every day that people use all of their energy organising their own lives, and just don't have any spare capacity to go online, or to do advocacy work, or to organise non-essential things. Our brains are so useless that it is difficult to get involved in even the simplest of tasks without confusion and exhaustion. And people have to cope with families, benefits systems, money shortages, getting practical help with things, keeping the home in working order, organising the most basic of social lives etc etc etc. Even finding out basic information online can be a confusing and distressing experience, especially for those who are not tech savvy.

I agree that it would be great to get more people involved. And I believe that it could be a good idea to reach out to people with things that they can easily get involved with, and which they can easily understand, but which also capture their imagination. For example, pre-written letters to their democratic representatives could be prepared so that people can print them out and send them. People have often said to me that they would like to get involved if they knew what to do.

How to reach out to people:

Possibly it could be a good idea to prepare a large database of local organisations, and then if you prepare a letter for people to send to their representatives, to demand more funding for example, ask these local organisations to ask their members to get involved and to send those letters.

So I think that people need very simple things that they can do without much effort, but which also has meaning to the individual and captures their imaginations. They also have to be very simple tasks to carry out that don't require signing up to facebook accounts etc.

I don't know if I'm right about any of this... These are just some of my thoughts.

 

[Bob]

Yes, I think that leela has explained exactly why people don't get involved in voting.
It might seem like a simple idea, but it really isn't straightforward at all.

 

[Firestormm]

Perhaps also there are just too many things to vote for? Too many charities/organisations/research initiatives trying to raise funds? Confusing even without being a patient with this particular condition.

Then if you are a member of a forum you read contentious statements about organisations that you might otherwise have voted for/donated to... Not sure what the answer is because if said organisations spent more money on PR and Marketing to attract the money and the votes - then they could/have been accused of not spending it on research/support!

Catch 22?

 

[Nielk]

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? You don't have to write anything personal if you don't want to or you can lie and make things up. It is a great tool to connect with people that you want to be connected to. If you "like" specific pages, they will send you updates and information. This is one way that I get information and news about ME/CFS.

 

[leela]

Who are people so scared of that they will know personal information?

First of all, clearly you have been lucky enough not to have had any stalkerish activity in your life. This makes it essential for some people to keep all personal or identifying information private. Also, some patients are in the process of applying for disability benefits for a disease name that is more likely to get approved. If they have a FB account that is filled with ME stuff, this could be bad for them and get them denied. These are two important reasons I can think of that answer your question.

Secondly, FB makes it a hassle to secure all your info. It is defaulted to public and there are like seventeen different places you have to go to turn stuff off. If you use an app like Vivint, you can't vote unless you agree to share your data, and so you have to turn the app off every time, or they continue to track, collect and share your data.

Thirdly, I am firmly opposed to a thing that poses as social media (which I have no interest in anyway) functioning as a mass data-collecting and tracking device for the purpose of marketing. Marketing things to me, and marketing my personal browsing habits or interests to companies that can then create more things to try and sell me or people like me.

My FB account is not in my real name, sure. And I've made everything secure that I know how, with my limited knowledge of it.
But it is still a huge pain in the rear to fuss with security issues every time I vote. I did it anyway, but it was sometimes not even doable due to migraine etc.

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.

 

[Tuha]

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.

I have another opinion. i think its really time to be critic to our community and its time to have a serious discussion in all organisations/forums/support groups about how to continue. It cannot continue like this because if yes, we have no chance. The patients have to understand that noone will do this fight for them - so I really dont understand what we are waiting for.

Like you wrote some of us are doing invisible service/donations/actions and I agree here but what I think its just minimum of the people. What i can see everywhere is just apathy, everyone is searching only for treatement informations,....I was following a lot of advocacy actions during the last 2-3 years and even actions which were really good organised and had big campaign got really small support (maximum maybe some hundreds patients.
I already wrote it here in one post but i will write it again - here are some of my experiences:
I personally know 10 patients - its not a huge number so maybe it will not be 100 % relevant. But from these patients 9 would be able to join all easy actions. 5-7 would be able to join more difficult actions like demonstrations if it will be good organised. 9 patients would be able to support financially ME/CFS research/activities. Some weeks ago we met and had a small talk about advocacy and funding - when i asked if someone does an advocacy or donating - 1 patient donate sometimes and 2 patients do some small advocacy. When I asked the reason of their "unactivity" there wasnt anything really important what would prevent them to do it (maybe except one guy who is too sick).
I am also a member of a national organisation and i help them with some stuffs. This organisation has around 300 members. When I was talking the last time to the chef she had a short moment to give up because there are onlyfew patients who propose their help. everyone critic only and ask about a service but if you want something from them noone react.
What I see the most of the time. there are few patients doing a lot of stuffs they are overloaded and they are missing help. Also a lot of people say that they are too tired to do something. well, if someone is too sick noone is expecting he will do something, or if you really cannot have facebook account for whatever reason - dont do it. but most of the people have facebook because we are too tired to do other things so you spend most of the time with your computer and social media if you like it.
So the problem is that the people who are able to do something - they dont do.

So i really think that our community has to wake up - before its not too late for most of us

 

[Nielk]

from 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.

It sounds to me that:

1- you feel that my enthusiasm in trying to get people to vote is annoying and not helpful.
2- you assume that because I do that, I don't also participate in private donations.

Why do we have to compare what and how much we do? If people are really getting annoyed by my "enthusiasm", I'll just stop. Trust me, it will make my life much easier.

I'll just continue to give my private donations like many others and we'll see where we get.
It won't be my worry anymore.

 

[Bob]

from 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.

It sounds to me that:

1- you feel that my enthusiasm in trying to get people to vote is annoying and not helpful.
2- you assume that because I do that, I don't also participate in private donations.

Why do we have to compare what and how much we do? If people are really getting annoyed by my "enthusiasm", I'll just stop. Trust me, it will make my life much easier.

I'll just continue to give my private donations like many others and we'll see where we get.
It won't be my worry anymore.

Gosh, if we are going to fall out about such simple things as voting, then what hope do we all have?

Nielk and Leela, this is just a simple misunderstanding between you both... Caused by online communication rather than it being face to face...

Nielk, your post looked as if you were criticising Leela personally for not using a facebook account to vote, although I'm sure that wasn't your intention but was just to do with how it came across.
Leela took this (perceived) criticism personally, because she does plenty of other stuff, and so any criticism isn't fair.

Hope that helps to clear up any confusion?

Nielk we definitely don't want you to stop your work or your enthusiasm!




Brainstorming for positive and constructive advocacy ideas is still welcome!

 

[leela]

Nielk, you totally took this in a way I didn't mean it

I was saying I see your enthusiasm, and I hear your frustration. And they are both justified. I'm sorry if it came across any other way

I was trying to suggest why some people can't or don't want to participate in the ways you can, or in the ways you wish they would.

I never remotely meant that I find your enthusiasm "annoying and not helpful"!
and I never ever made any assumptions about what you do or don't do in advocacy!!! Anyone can see how generous and concerned you are! Where did you get that, sillyhead?
I was saying, as did-- I forget who, Bob maybe-- that some things are done behind the scenes, so maybe your perception of how much time & energy is being contributed is not entirely accurate.

I'm your friend, remember? I could just feel how upset you were getting that more people aren't doing the things you are asking them to do; my points were made to try to bring a fresh perspective to why they might not be--the understanding of which might ease some of your frustration as a bonus

Tuha, there is no question something needs to be done; but characterising fellow patients as lazy and apathetic is not a helpful way to unite them IMO.

Trying to understand what people's capabilities and limitations are is essential in creating an environment where advocacy is possible.
It's ironic that this polemic (which is a familiar one in this community) is arising in the thread with this title.
That shows me how clear it is that it's an inherently important starting point: respecting that this is a group of humans first, ill humans with major limitations second, and overall, a very diverse group with a common goal. If you start from "most people are lazy", well, you're not going to get many people on your team :innocent1:

~~~~~~~~~
p.s. It really kind of hurts to be so misunderstood by people who can see clearly that my heart is in the right place. No, you don't know me personally, but you can see from the tone of most of my posts that I am for unity, and kindness, and love. I can be sharpish when discouraging the haters, and ask the abusers to modify themselves, but I am always for bringing people together and discouraging discord within the patient community. I am really surprised by your take on my post Nielk, and I'm sorry if how I wrote it was unclear.

 

[Bob]

... Also a lot of people say that they are too tired to do something. well, if someone is too sick noone is expecting he will do something, or if you really cannot have facebook account for whatever reason - dont do it. but most of the people have facebook because we are too tired to do other things so you spend most of the time with your computer and social media if you like it.
So the problem is that the people who are able to do something - they dont do.

So i really think that our community has to wake up - before its not too late for most of us

So maybe this is an issue of educating, or informing, people about how and why they should get involved?

I don't think we can 'demand' or 'expect' people to get involved or to take a proactive interest.

We have to remember that everyone with ME comes to the illness with different backgrounds, different lives and difference perspectives.

So I think it would be better to find ways to 'stimulate' or 'inspire' people into taking an interest and getting involved.

 

[Nielk]

leela,

It's because I counted you as a friend that this statement hurt so much.

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.

I know you as a very sweet, funny friend and to hear/read this statement from you was like a slap in the face. I understand that everyone has their limitations. Trust me, I have many of my own. But why tell me to take or use my enthusiasm elsewhere? Where? by turning in bed a different way? By actually trying to cook one meal a week for my husband? I want out of this life of misery and by out I mean I WANT TO GET BETTER. That is the whole motivation of trying to think of ideas to raise awareness and funding because it is not going to fall on our heads on it's own. Money, is what it's all about and we lack it. That is the one and only reason that so many years have passed with so little advancement.

Except, I do feel that the past two years, even if the retrovirals don't pan out, it did us service by enticing scientists to look at us and actually try to do something. I feel a momentum of the leaders in the field really wanting to study this from different aspects and I really hope that something will pan out. I don't think it will happen without funding. That is what's driving me to try together with the patient community to find a way to achieve this.

Maybe, (hopefully) like Bob said, it is just a big misunderstanding on both of our parts.

 

[justinreilly]

With regards to why people don't vote, I think it might be to do with capturing people's imaginations. It doesn't really feel like you are achieving anything as an individual when voting or signing a petition for example. It's anonymous and nothing happens afterwards - there's no response - and your individual vote doesn't feel like it's going to make a difference. That's just my thought on the matter though - I don't know if i'm right.

In relation to ME/CFS patients getting involved in advocacy work, I don't agree that there is apathy at all. It's far more complex than that. ME/CFS is such a devastating, confusing and exhausting condition to have to deal with every day that people use all of their energy organising their own lives, and just don't have any spare capacity to go online, or to do advocacy work, or to organise non-essential things. Our brains are so useless that it is difficult to get involved in even the simplest of tasks without confusion and exhaustion. And people have to cope with families, benefits systems, money shortages, getting practical help with things, keeping the home in working order, organising the most basic of social lives etc etc etc. Even finding out basic information online can be a confusing and distressing experience, especially for those who are not tech savvy.

I agree that it would be great to get more people involved. And I believe that it could be a good idea to reach out to people with things that they can easily get involved with, and which they can easily understand, but which also capture their imagination. For example, pre-written letters to their democratic representatives could be prepared so that people can print them out and send them. People have often said to me that they would like to get involved if they knew what to do.

How to reach out to people:

Possibly it could be a good idea to prepare a large database of local organisations, and then if you prepare a letter for people to send to their representatives, to demand more funding for example, ask these local organisations to ask their members to get involved and to send those letters.

So I think that people need very simple things that they can do without much effort, but which also has meaning to the individual and captures their imaginations. They also have to be very simple tasks to carry out that don't require signing up to facebook accounts etc.

I don't know if I'm right about any of this... These are just some of my thoughts.

I agree. I eventually want to set something up on-line that will be easy two-minute advocacy for pwME, maybe with a game element to get participation. CAA's capwiz was good this way. they should have promoted it more. now it's still there but doesn't work.

I do think petitions, capwiz emails, prewritten letters/emails are good. different people are good with different things. I am 39 and most people i know would be much more willing to do a facebook activity (including involving giving up info to an app) than printing out and mailing a letter which involves more steps and costs a little money. so i think offering both facebook and non-facebook is good.

 

[Battery Muncher]

Good posts in this thread. Will definitely make a note of reading it afterwards.

Re: apathy - I think ME/CFS patients are just in a state of learned helplessness, really.

http://en.wikipedia.org/wiki/Learned_helplessness

I think most patients face a serious of setbacks, from stigma to the breakdown of social networks (as ME prevents you from socialising as much), loss of friends and support etc.... all the way up to the crap we have to take from the medical establishent. At some point, I think a lot of people 'burn out'/'break'/whatever and falll into apathy.

Also, maybe people don't want to accept it/ identify themself by it? Laura Hillenbrand, an award winning writer, said that she didn't want to write a book about ME since she had to face it every day. (Also, a lot of me/cfsers were pretty driven and successful before me/cfs...)