Relying on too few to do too much.

[pebble]

The CFS/ME community are not lacking intelligence or expertise

but our cognitive difficulties do obstruct and prevent so many from sharing their knowledge, strengths and interests to create the changes we so desperately need.

Our cognitive difficulties are so cruel.

Many of us can be extremely interested in a thread or topic but not have the concentration or the stamina to read large blocks of text.

So many of us are drowning and dont have enough energy for day to day life.

We can be extremely interested in a project but feel overwhelmed by the fear of it requiring too much energy and commitment from us.

I feel if we brainstormed we could make adaptations to compensate for the specific cognitive difficulties of CFS/ME.

If we collaborate we reduce the energy required from each person.

We need to find more efficient ways to compensate for our difficulties.

The film Us Now is free online and full of so many ideas on how to improve and become more efficient.

I love the ideas in alex3619s thread to have specialized groups working on specific projects.

There are so many other ways we could also compensate and become more efficient.

I am not suggesting we need to simplify information but in some instances it may be useful to summarize some projects and news in a different section.

If we adapted we could enable and encourage more people to contribute to create the change we all so desperately need.

http://watch.usnowfilm.com/

 

[Esther12]

Edit: I've had a couple of long days and poor sleep... I don't think my brain can be trusted at the moment, and the following post should be read in that light:

I've been thinking a bit about this recently, and I think it could be a bit of an intractable problem.

It's worth recognising how much harder fatigue makes organising things like that. If someone has the energy to spend an hour a day on CFS stuff... then that's about the amount of energy needed be part of a disciplined group. To be really efficient, and delegate tasks to those most suited to them and work towards a unified goal we first need to put a lot of energy in to the organising... especially as, when the evidence is so uncertain, I expect almost every different patient has different ideas about CFS and how we should progress.

I've received a lot of help from other patients, and have tried to offer some to them, but it seems really difficult to move beyond those sorts of loose associations to a really lean and effective organisation. If XMRV turned out to be the Big Thing, then I think it would be a lot easier... but the uncertainty, combined with our limited time and energy means that there are, imo, going to be inevitable ineffeciencies in the way we campaign about CFS stuff.

It would be great to have nice summaries of all the work being done in the Pace thread... but more and more ideas keep coming out on it. And presumably more data will be released soon too. (I also lost a summary i'd been doing when my computer crashed... gargh!!)

In summary: I think we do already help each other out in different ways, and it will be hard to move much beyond that at the moment.

 

[Enid]

Sadly I have to agree Esther12 - any "commitment" other than "when able" to look into PR wouldn't be possible. The efforts of daily living basics and never knowing (on a daily moment to moment basis) just how able makes any planning impossible. I see we are 4,500 members - not all active, and when logging in often find say for example 680 viewing of which 60 members. So PR in itself has a wider audience coming in to seek aid etc. And the information brought by those who can I find brilliant (including science for simpletons like me) already.

 

[pebble]

Esther12
Edit: I've had a couple of long days and poor sleep... I don't think my brain can be trusted at the moment, and the following post should be read in that light:

I've been thinking a bit about this recently, and I think it could be a bit of an intractable problem.

It's worth recognising how much harder fatigue makes organising things like that. If someone has the energy to spend an hour a day on CFS stuff... then that's about the amount of energy needed be part of a disciplined group. To be really efficient, and delegate tasks to those most suited to them and work towards a unified goal we first need to put a lot of energy in to the organising... especially as, when the evidence is so uncertain, I expect almost every different patient has different ideas about CFS and how we should progress.

I've received a lot of help from other patients, and have tried to offer some to them, but it seems really difficult to move beyond those sorts of loose associations to a really lean and effective organisation. If XMRV turned out to be the Big Thing, then I think it would be a lot easier... but the uncertainty, combined with our limited time and energy means that there are, imo, going to be inevitable ineffeciencies in the way we campaign about CFS stuff.

It would be great to have nice summaries of all the work being done in the Pace thread... but more and more ideas keep coming out on it. And presumably more data will be released soon too. (I also lost a summary i'd been doing when my computer crashed... gargh!!)

In summary: I think we do already help each other out in different ways, and it will be hard to move much beyond that at the moment.

Enid
Sadly I have to agree Esther12 - any "commitment" other than "when able" to look into PR wouldn't be possible. The efforts of daily living basics and never knowing (on a daily moment to moment basis) just how able makes any planning impossible. I see we are 4,500 members - not all active, and when logging in often find say for example 680 viewing of which 60 members. So PR in itself has a wider audience coming in to seek aid etc. And the information brought by those who can I find brilliant (including science for simpletons like me) already.

Hi Esther12 and Enid,

Thank you for your comments.

Its because we are so exhausted and our condition varies so much that we need to ensure we make adaptations to be more efficient which will make it easier for us.

Being allocated a role or being part of a disciplined group wont suit everyone.

If we enable more people to contribute in a way that suits their condition, personality, circumstances, interests and expertise we can become more efficient and collaborate in different ways.

Many of us have such a narrow window of concentration.

Many of us have difficulties with short term memory.

Reading through lots of threads with so many names can be so exhausting.

We have such different personalities and interests.

Brainstorming ideas on how to compensate for our lack of stamina may take a little energy but save considerably more.

There are so many more ideas and possibilities in the film.

Have you seen the film?

 

[Enid]

I'll have a look pebble - if there are good ideas for us it would great. Bit of a zzzzz day today with the concentration of a flea !

 

[eric_s]

What i'm saying now might stress some people and so even be counterproductive, even though i absolutely believe it's right. Sometimes it's hard to judge a situation or people on the internet and you would say things differently in a real life situation.

But...

I really have to counter and disagree here.

Don't ever, ever, ever think like that. And if you do, i think it's better not to pass it on to others in a way that might influence them. Very sorry if this hurts someone, i really don't mean to do that, i'm saying it because i want to improve the situation.

We have been stuck more or less for 20 or 30 years. We suffer, we are being neglected, dismissed, whatever, i don't know the best english words to say it, but you know what i mean.

Then reason for that is, in my opinion, firstly of course the type of our illness (no quick deaths, no obvious physical signs that can't be denied etc.). But then, further, it's exactly that type of behaviour of us, as a community.

Yes, this illness makes things very hard, but we DO HAVE TO FIND A WAY to succeed nevertheless and we can do it. We will do it, at least as far as i'm concerned.
If you like being sick, go ahead like that, you will be happy. Me, i don't like it.
As individuals we are nothing. We are physically weak, can't march, shout, smash some windows etc. and we are economically weak (most of us). And because we can't work much, we are mostly not well connected in society and don't have many influential people to help us.
BUT WE ARE ONE F*IN MILLION on this continent alone. This is the leverage we have and the way we can get out of this mess. Only if we manage to act in an organised way and bring that huge weight into the struggle can we move things. As long as we don't do that, we will be at the mercy of others to come to our rescue. And look how much they have helped us in the past... We must do it oursevles. It's hard, but we must try and once again, i'm convinced we can do it. I have been thinking about these things a lot in the past year and there is so much we can do.

We can combine our limited financial capabilites and together we will have a budget that will make people come knock at our doors (researchers and everybody else we might need).
We can have serious political power, if we manage to mobilize this huge mass and go demonstrate or do other such things. Yes i know it's difficult, i myself for example could only participate in a demonstration that remains in one place, but you know what, then we will do it like this. We would have to organise buses for transport, places to relax or even sleep, bring some sort of camping matress, so we can sit or lie down, but so what. It's complicated, but possible and worth it. Even with those restrictions i travel across Europe, it's hard, but i find ways to do it, so i know i can go to a demonstration as well. And so can a large part of our community. But it has to be organised very smartly, so that it's compatible with our illness. Nevertheless it is possible.
We have the internet and this gives us great capabilities to do exactly what Pebble and others like Alex have suggested, to work collaboratively and coordinate our efforts.

Giving each other some tips and helping out is great and might make your day a bit better and this is needed sometimes, but it will do nothing to make those days come to an end. We must move beyond this and overcome this illness, support from now until eternity is not sufficient and it's not how i want my life to be and i'm pretty sure that's true for most of us. We must see the big picture and not just try to think about our daily living, even though that is a big enough challenge already sometimes. But if we don't manage to do that, things will not go where we want them to go or much slower than they could.
It's true that many can't do much themselves, because they're not well enough or don't know how to do it. But there are others who can. So if everybody just did a handful of easy, little things, everything would change dramatically.
Let's say everybody gave as little as 30 Euros/Dollars per year and joined an organisation. Not more than this. And don't tell me you can't do this.
Then we would have a good double digit million budget per year (about as much as our entire budget from the eighties until today) and we would have organisations with hundreds of thousands of members. Guess what... THEY would be listened to by ministers, members of parliament, the media etc. etc. As an idividiual they will just ignore you and that's it.

We are probably one of the communities that has done the worst job of lobbying and advocating for their cause in recent history and if we don't see that, we can't change it for the better.
Sorry if some people don't like what i'm saying...
But ok, maybe an internet forum is the place where people come to just talk and those that like to do something more concrete will do that in another place. But nevertheless, i think we need to work with internet forums as well, because it's very important to reach everybody.

 

[eric_s]

And just to say it again, this was not intended as a personal attack in any way

 

[Enid]

We are trying here Eric, much doing as usual amongst the few real advocates (Iime Conference London May - where any donation from me goes - they work on shoestring). Other Charities too - gov watchers and pressure groups, and some small researching. Don't disagree with what you are saying at all. It's our International "face" now public thanks to PR (ME in the raw so to speak) aiding us all wherever. But big ideas I'm sure all would welcome.

 

[caledonia]

We're 1 million in the US and 17 million worldwide - sort of.

80% of those are undiagnosed. So they have no idea what they have, or that this board or any kind of advocacy even exists. Out of the 20% diagnosed worldwide, then you have to cut down the number to those who speak English. I have no idea what number that would be.

Then there is the internet filter. If there are 5000 here, and say another 5000 on all the other ME/CFS boards combined, with no overlap, that's 10,000 out of the diagnosed worldwide on the internet. Then you have to cut it down to those who have the energy and concentration to do advocacy, which varies.

It's going to be a group of maybe a couple hundred people who are going to do this. The way the MCWPA has it worked out (as an example) is they have a large group of volunteers with a lot of overlap. If someone volunteers to do something, and they can't do it, then they just call on the next person, and so forth.

It's going to be messy and not as organized as you would hope. But even the AIDS movement was a mess. If you watch any of the AIDS movies or documentaries, people did not agree on a lot of points. There were meetings with shouting and yelling and fighting.

I think this is human nature, but you have to keep trying.

I think my point is, it's only going to be a few hundred of us now, and eventually, it will be more, but we have to get everyone diagnosed and educated before we get a huge movement. The diagnosis part is dependent on research. The education part is dependent on publicity and advertising.

Publicity is free attention because you made the news. Advertising is paid attention. There is also free advertising called public service announcements.

The AIDS movement started out with publicity by doing demonstrations. This made the news. They had lots of healthy bodies and no internet.

We have lots of unhealthy bodies and the internet. So we have vastly better communications at our disposal than the AIDS movement did.

The strategy of the MCWPA (as an example) is to do paid advertising and public service announcements, which doesn't require healthy bodies at demonstrations.

On the other hand, if we were able to have a demonstration, we can make our own publicity on YouTube and possibly leverage a few people into making it look larger than it is.

Whenever research makes another discovery or is controversial, that makes publicity, but that's mostly out of our control, except indirectly, by donating to make the research possible.

So fundraising is going to be a key factor, both for research and for advertising.

So I guess my point is, yes, it's going to be just a few of us here at first and yes it's unfair but that's reality. Whatever we few do here, is going to have a huge ripple effect eventually, as long as we persist until we get what we want. We have to be smart and adapt to our unique circumstances to get this done.

I'm personally supporting the MCWPA and the WPI. I think those are the two key things to support - one for advertising/publicity and one for research.

 

[pebble]

Having tried other forums I really appreciate how PR is so much better than the other forums in so many ways.

I feel CFS/ME forums dont really differ structurally from non CFS/ME forums.

Anyone wheelchair bound will need adaptations to ensure wheelchair access.

We have cognitive difficulties and yet all the CFS/ME forums use the same structure as forums for people without cognitive difficulties.

I feel if we

1. watch the film Us Now first,
2. list what we find difficult
3. list strengths
4. then brainstorm ideas

We could be the first CFS/ME forum to create CFS/ME forum adaptations.

I dont think they need to be big changes just well informed tweaks.

There are so many things to consider including the importance of peoples personalities, strengths, interests, activity level, needs and motives as well as technology.

I feel investing time and effort to watch the film and brainstorm ideas could save us so much energy and frustration.

If we could make collaborating easier and more efficient, more would be able to contribute, and we would get better and faster results.

 

[taniaaust1]

Great post caledonia with a lot of important points.
.........

There is so much we all can do even if its little things as those little things if everyone could do a wee bit, would end up being big things. eg Join your CFS/ME asscociations or ones you trust. You are investing say $30 in yourself for the whole year by doing that. We need big groups like our associations to be heard well.
(Many CFS/ME associations at times also help to fund "good' CFS/ME studies, i know this is so with the aussie ones as i saw a study the other day which was partly funded by one. Till I saw that I had no idea they did that).

One thing I havent done yet but do plan to do.. is donate a DVD on CFS to my local library. The more out there we get out of that 80% undiagnosed catagory and joining our ranks in some way the better. Let's pull our numbers together .. making sure public libraries have good info on CFS is one way we can grow. Ask yourself is donating a $30 DVD to library which may aid several to join our fight worth it? (may also attract attention of healthies or even doctors and help educate them more).

We just all got to learn to use those things which could help us in easy kind of ways and think how we can gain the most impact for the least cost (in our energy and money). thank god for internet, I think that is greatly helping too.