Could this help ME/CFS advocacy and actions?

[Tuha]

Hi all,
I would like to raise here a question about advocacy which is in my mind already for a long time. I am following ME/CFS situation for 3 years and reading a lot of articles about the all history. I think we didnt move much to solve our sickness. Maybe the last few years we moved a bit forward but if it will continue like this I think we have no chance for a treatement or cure and I think normally I am big optimist. So I think we have to change something to get a chance for better life.

I was expecting Chase community giving not only because of possible money for WPI but I also wanted to see how our community participate so we could see our potencial. I have to say that I was really disappointed. After such a big campaign where we contacted so many groups there were maximum 500 patients who participated in voting, the others were family and friends. There are sometimes some calls for an action from some groups but only few people follow it. I can tell you that I was working on a ministry and its really big different if you do for example a petition if you send some hundreds or thousands signatures.

I see there 2 main problems:
1. Only a few patients join the activities (even if most of them are really easy and cost almost no energy and money)
2. Our communication channels are unefficace

I was thinking about how to solve these problems. The problem is that for example only in US are at least 100 organisations, forums, support groups and its everytime difficult to contact them if we want their support. With our limited energy we need to be much more efficace. I would propose to have a network of 2-3 people (if someone is not in a good health for a moment) from each organisation/forum/support group. We could do something like a mailing list (because also almost everyone use his mail almost every day) and if there would be a call for an action - we would simply write 1 email to the members of this mailing list and they would inform about the action the members of their organisation/forum/support group. So for example, there would be Cort, he is member of PR - so he would inform PR members about - its also better because for example if I make a call to PR members and noone know me - less people will follow me than Cort who is respectfull between the members of the forum.

there could be also second mailing list with patients who would be informed directly (there was already one with 500 patients but it disappaired).
Then its important to start on all forums and organisation a discussion about the necessity of the patients to join the activities - to try to explain them, that the most of the activities are really simply and without their help we will not move. We have no other chance to get better!!! There are all the time only 200 -300 people who join and its really nothing to move the things.

Also there are already a lot of fights between the organisations but we have to remember that maybe except organisations with psychological view we would find a lot of topics and actions who everyone would support. So the basic of this communication network would be that everyone will be informed quickly about an action and if you will like the idea you should participate.
So I would like to ask you what you think about this network. Could this be usefull? I would like to try it but I can imagine that it would need a lot of work so if the patients would think that it would not help us i would save my time and energy.

 

[*GG*]

What was the mailing list with500 patients? I do recall getting an email in the past, but have not recieved anythng recently, so perhaps that is what you are talking about? Not sure of the group (ME/CFS or MWPCA)?

I think it would be useful, I guess lots of people (decades ill with little progress) are rather defeated, not me!

GG

PS Not aware of the fighting, I believe it. Power and money? I don't concern myself with that to much, no time or energy for such things.

 

[eric_s]

I think getting a large number of people to participate is the bigger problem than communication. Communication between organisations and forum owners etc. seems to be rather easy, there are not so many groups, at least not larger ones, and not so many big forums with many users. Many of these people already know each other and even if they don't, it's easy to send an email. But i also think there should be a more contiunous, organised way how they are in contact with each other.

I think the harder part is to have group leaders agree on a concrete idea and then getting the members/users to actually do it. The first problem probably is that many people with ME/CFS aren't even diagnosed yet. So they are not part of a group or don't use forums, Facebook groups, etc. Because of that a good percentage of people can't be reached. We have to try to get this percentage up, so everybody gets diagnosed correctly, but this takes some time. Then we need to connect the people that are diagnosed, we need to try to get them into the associations, get them to donate, or at least be in touch with the community in one way or the other. These who are connected are sometimes also not easy to reach and even if you reach them, you have to get them to do what you would like them to do (like to vote in a contest, for example). I'm not saying it can't be done, we have to achieve this, i agree with you.

I guess these are the most important parts: getting everybody diagnosed, getting people in touch with organisations, then having the right ideas and getting people to participate.

My ideas for how to get an organisation's members to participate are these: Create a forum and/or a Facebook group for the organisation and try to get everybody to join. And for these who you can't reach this way, send out emails or call them. I think it's a good idea to call people, because many might even be happy about getting a call and then you can explain everything to them and they see that the organisation cares about them and is working to make things better for them. Also some people don't even have a computer.

As far as communication between organisations, there are already some approaches like the Coalition 4 ME/CFS or EMEA. I like that concept and hopefully these alliances will grow. And there is Co-Cure and probably other similar things.

Then its important to start on all forums and organisation a discussion about the necessity of the patients to join the activities - to try to explain them, that the most of the activities are really simply and without their help we will not move.

I think this is very important. I agree with you that this is a very important message that we should try to get everybody to understand. If we want things to get better and quickly so, then we must do something for that. We are ill and can't do very much, but as you say, there are some little things that almost everybody can do, and if people actually did these things we could achieve much more.

I think one big problem is that it's probably often only a small number of people who is doing most of the work inside an organisation. And so it's very hard for them to do something additional, even if it's a very good idea. I think organisations should try to grow, this should be one of their most important goals, and they should also try to have the most efficient structures possible and have enough members helping out and sharing the workload.

 

[Tuha]

What was the mailing list with500 patients? I do recall getting an email in the past, but have not recieved anythng recently, so perhaps that is what you are talking about? Not sure of the group (ME/CFS or MWPCA)?

I think it would be useful, I guess lots of people (decades ill with little progress) are rather defeated, not me!

GG

PS Not aware of the fighting, I believe it. Power and money? I don't concern myself with that to much, no time or energy for such things.

yes, there was already this mailing list but it disappeared because of technical problems. i think it was frank from this forum who created this. there was simply a web site where you entered your email and when there was an action you simply got an email about.

 

[Tuha]

Hi eric,

You mentioned several problems which we also should solve to move. of course there are a lot of patients who are not diagnosed, a lot of people are maybe membersof an organisations or forum but they dont visit them anymore or there just search for treatement informations - to get these people is difficult and I dont know exactly how to do it. But I think we are even not able to reach the people who would like to participate and I think its because of our way to get out the informations are not efficace enough and with our small numbers we have to be efficace to get at least these people - so thats why I think an effectiv communication is really important. To get more patients to the organisations is good idea but I think it will take years to do it and we dont have this time.

Nowwe can see that there are maximum some hundreds patients who join the common activities (I take this number from the last contests, petitions, sending letters and some campaigns - so I can be maybe wrong but i dont think so). I think with better communication we could reach 10 000 patients in a short time.
There can be multiplication efect. For example now If there is a contest I always ask some friends to join it and they do but I dont ask them for other activities like petitions,....if i will see that there is a movement and a lot of people join the actions I would ask my friends and family to do it and I am sure that I would find at least 10 friends who would join each action.

I can tell you from my experiences how our communication works now. I participated in some campaigns to ake publicity for those internet contests. We always did it in the last moment so always big stress, we had a list with a lot of organisations/forums - so we contacted them. It was a bit chaotic - the organisations got the same emails from different people, we got almost no answer so we dont know really which organisations informed their members, we contacted the organisations which dont exist anymore, some organisations joined the initiative but they didnt take it too serious so they didnt do a big effort to join the most members possible and I could continue. If this chaos would be there once a year, then I wouldnt care but its always with each activity. we had there chase community giving with these problems and then again the same problem in some weeks with vivint contest.

if we would improve our communication chanels then we could solve this forever. of course to get more people to the organisation would be great but with this communication chanels we will not get a lot of them to participate. to call everyone is I think not realistic and in the most of time you have to give a web link or to give a lot of informations whichis not so easy with calling. also a lot of patients are maybe members of organisations but they dont visit them anymore or they are just searching for treatement informations. this is also my case - i am a member of so many organisations and groups that I dont remember a lot of them anymore. Thatswhy I think the best communication is mail - almost everyone check his email every day. So how I already said there would be a mailing list where would be patients mail - so they would get the information directly and then second mailing list with some representants of each organisation and so they could reach the patients who are not in the first mailing list and they just visit their web. there could be even a sign of acommon action.there could be for example always the same word in the subject (when you get the email) - for example "ACTION" - so the patients would know that this is a common action of patients and probably a lot of them will join it - soit woulbe better for their motivation

today there is already this Coalition 4 ME/CFS but there are only 8 organisations - they want to grow but they have already a direction/opinion so I am not sure that a lot of organisations will join them in the short time - so i dont think that they are the best communication channel. my idea would be simply - you dont have to agree with everything, you just get an email about and if you like it you can join it.

 

[eric_s]

I can tell you from my experiences how our communication works now. I participated in some campaigns to ake publicity for those internet contests. We always did it in the last moment so always big stress, we had a list with a lot of organisations/forums - so we contacted them. It was a bit chaotic - the organisations got the same emails from different people, we got almost no answer so we dont know really which organisations informed their members, we contacted the organisations which dont exist anymore, some organisations joined the initiative but they didnt take it too serious so they didnt do a big effort to join the most members possible and I could continue. If this chaos would be there once a year, then I wouldnt care but its always with each activity. we had there chase community giving with these problems and then again the same problem in some weeks with vivint contest.

That's exactly why we've started the ME (ME/CFS) Fundraising Group on Facebook. So we don't have to go and look for the people every time again, starting from the beginning.

I think what you said here is a bit what i said earlier. You can reach all these organisations by email. So there is a communication channel. But then the problem starts. Like you said these people get a number of emails by people they don't know and often these emails have been translated via Goolge and are not very well readable. I don't think there is a very big chance that a majority of these groups will do what you want them to do if they don't know you and they just get an email. So the problem in my opinion is not reaching them but convincing the group leaders to take up your idea. And then they need to get their members or followers to do what you want them to do and this is the next big problem.

We're working on this with the Fundraising Group and with the other project (you know which one). But i think only if you are part of an organisation and either have the approval of your organisation's leadership or you are part of the leadership yourself will you have a good chance to win other organisations for a project. That's why i wish there was an organisation in your country or somebody would start one. Then you could do much more from there. Many hundreds or thousands of votes could come from there. Also donations.

if we would improve our communication chanels then we could solve this forever. of course to get more people to the organisation would be great but with this communication chanels we will not get a lot of them to participate. to call everyone is I think not realistic and in the most of time you have to give a web link or to give a lot of informations whichis not so easy with calling. also a lot of patients are maybe members of organisations but they dont visit them anymore or they are just searching for treatement informations. this is also my case - i am a member of so many organisations and groups that I dont remember a lot of them anymore. Thatswhy I think the best communication is mail - almost everyone check his email every day. So how I already said there would be a mailing list where would be patients mail - so they would get the information directly and then second mailing list with some representants of each organisation and so they could reach the patients who are not in the first mailing list and they just visit their web. there could be even a sign of acommon action.there could be for example always the same word in the subject (when you get the email) - for example "ACTION" - so the patients would know that this is a common action of patients and probably a lot of them will join it - soit woulbe better for their motivation

I didn't say you should call them all, of course that would not be possible and not make sense. But i said calling people is a good way for the leadership of an organisation to reach it's members if they can't be reached via a forum or email. Or even if they can be it's a good thing, i think. Just look at the US elections, for example. People go from door to door and ring. And they call millions of people. As you say there are many members who only look for treatments or are not very active. How will you get them to join a mailing list? But the leaders of an organisations could call them, because they have a list of their members, often with phone numbers and email, and explain it to them and get them to join. Also there's a language problem. Many people don't speak English or not well enough to be motivated to read English material. How would you solve that problem? Either you have to send the email in many languages which will make it very long and difficult to read or you go via the local organisations who translate things and send them to their members then. But like i said, they are probably already stresses and busy, so i guess it will not always be very easy to get them to do that for you. And also maybe they will not be happy about somebody "stealing" away their members. Maybe they do their own fundraising, for example, and if through such a list you get people to donate for something they will in the end donate less to the project the organisation wants to propose to them.

Sorry, i don't mean to sound negative, just give it a try. What i think is that in the end it's not very many things that need international participation anyway. Mostly it will be fundraising, i guess, because other stuff (health policy) is mostly national. I think Fundraising is usually either contests or donations. So i would rather focus on one concrete idea, like the Facebook Group for fundraising in contests. Or another fundraising project.

 

[Tuha]

this is the question how the organisations would react. what I think if there will be a first positive touch and i would be able to explain them this project good (I have for example good experiences with ESME, then bad with EMEA), I think they would join. how you say that maybe they get a lot of emails but for example what I already said if we would always write to the subject like for example"ACTION" then they will know that this is a common activity of our community. I get also a lot of mails every day and a lot of them ignore but i can imagine that this would be motivating for me. so the success would depend on if the leaders of an organisation/ group would like the concept and if they would take it seriously. then it would be their job to convice their members to join it. the members who would like this idea would directly enter their name to the patients mailing list so we would be sure that they will get emails.
yes, if you are part of an organisation the communication is much easier.

yes, there is the problem to reach the people who just search for the informations about treatement - this is difficult and maybe you will not explain them the necessity by email, maybe with call it would be better. But what i was saying that I think we are not even able to reach the people who would like to participate. and this is what I am talking about because I think its already quite big number of people who could maybe change our situation.
of xourse there is language problem often and i have also problem with this but if this concept will be successful it would be possible to make some translation (at least to languages like spanish, french, german,italish).
I dont want to steal the members - the patients wouldnt be a part of an organisation/forum - they would just get an email.
its no problem that you dont find it good - thats why asked here because I am not in a mood to lose my time with something unrealistic. thats why i asked about opinions - just pity that there are not too many answers.
I dont know but I think the international participation is important. What I saw here often that even if it was a national action they almost always asked also about international support.
ME (ME/CFS) Fundraising Group on Facebook is great idea but its just only about fundraising. I am also curious have many people will reach. till now there are only around 85 people- its not too many but I think there was not a big campaign to reach more people (maybe we could use mailing list also here - just send an email if people can join it). I will be surprise if there will be more than 500 patients in a short time - I have bad experiences with

 

[eric_s]

It's not that i don't find it a good idea. In the end it's always very hard to know how well something will work before you actually try it and everybody has different ideas. I answered to your post because i wanted to give some reaction, so that there is a bit of life in the thread. Because i also think the question of participation and coordination is important and because i know you want to have this discussion (you said so on Facebook too). The only thing i would be a bit afraid of is that it should not be a competition with other projects, like for example the Facebook group. Someobdy already mentioned a mailing list on our thread about that group, but i think it would not make sense to have a Facebook group and a mailing list in parallel, because it would make everything more complicated and we would then have the people divided in two different places. But that was not your mailing list that i'm talking about here, it was another idea.

You're right about the ME (ME/CFS) Fundraising Group. Apart from posting it here on Phoenix Rising we have not yet tried to systematically get people to join. First we have to get everything ready and working and also get used to the administrative work a bit. And most of us are already busy with other things, so we can only go one step at a time. I don't agree with you about the numbers, we need at least 3000 members, and if i would not believe we can do that i would not have started it. But we will see... What i don't think is that we can get these members from the forums, i think the voters we see now in Vivint and CHASE are mostly the people who are active on the couple of big forums plus friends and family. I guess it's always more or less the same group of people.