Spend Energy Effectively

[usedtobeperkytina]

Isn't it awful how much ambiguity there is with CFS? This causes so much controversy. The controversy over CAA and what they are and aren't doing. The controversy between clinicians. The controversy with patients against Reed and Wesseley. Controversy over lack of government funding, not to mention past misspent funds.

But it bothers me that we also have so much controversy between us patients. I know it is unavoidable, given the ambiguity right now. So much is still unknown that it causes patients to argue over what they have concluded and about proposed treatment. If only it were like diabetes and the answers of treatment and cause were clear. Oh, and then there is the controversy over name, even among patients and who has what.

I watched the "How is CAA doing" thread. And I watched the thread about Kurt's editorial. While I think some of the discussion was interesting, enlightening, and also addressed some important issues, some of it was quibbling over minor details, in my opinion. I should also note that some of the complaints raised did cause positive changes with CAA.

But I don't know if the time and mental energy I have is best used to form well-thought-out arguments on what are really minor issues for which there is no hard and fast evidence, in my view. Not saying all the issues on those threads are minor. Just saying some of it went that way. And what is minor is in the mind of the beholder, I realize.

I want to see the discussion here. I especially appreciate those who find the latest news and let us know. I think the latter is a productive use of time and energy.

But I think the back and forth in arguing among ourselves over some minor points is not as effective a use of my time (only speaking for myself) as other pursuits, such as advocacy.

Some have complained they can't get us CFSers to participate in advocacy efforts. Well, I have made a personal commitment that unless I disagree with the advocacy proposed, or it costs me money I don't have, I will support it.

To that end, I got an e-mail about writing a comment about the DSM-5 proposed changes. I was asked to do this, and I did, in keeping with my person commitment to use my energy and time this way instead of arguing with fellow CFSers over minor issues.

I also have decided to do the sock thing. I don't think it is the greatest idea. But I am not opposed to it. So I will support it.

Absent CAA taking a leadership role in public awareness, I also have a plan for a public awareness campaign I plan to do that does not require anyone else to help me. Cost no money. And will use the time and energy I already spend on the computer posting opinions on the continuous controversies here.

I challenge everyone to step back and look at the big picture. Analyze how you spend your time and energy and what it produces.

Tina

 

[Mark]

I feel much the same way Tina. I came in to the community (looking for XMRV info) with what I thought was probably an unusually radical, agressive and angry point of view. I got really excited to meet up with a whole big group of people who felt exactly as I did about the injustices. I was blown away by the quality of the community and the intelligence, wit and supportive spirit I experienced. I got energised to start working on advocacy and had loads of big ideas about how I could contribute and what the forum could achieve. My suppressed desire to write found an outlet at last. I found masses of information relevant to my health, and the effect on my health of what I learned here was dramatic. The only downside was that I was getting so obsessed with this wonderful new world that it started to become unhealthy and I needed to take regular breaks from the forum.

But then a few people appeared asking some probing sceptical questions about the opinions of the majority of the forum, and all hell broke loose. And I learned that this is quite standard on ME/CFS forums and that organising such places is like "herding cats". Big come-down.

Even so, I was sustained by wonderful and supportive people who stepped in to defend people under attack for expressing their opinions. The community still was and is a wonderful place. But the arguments got so heated and wearing and such a complete distraction from getting anything done, that I began to suspect this was part of the reason why so little progress has been made with mainstream opinion and political structures over the years. I started to wonder whether this infighting was a big part of why we were all still so ill. Although I did realise that the way we are treated and the difficulty of our symptoms does create and feed a lot of these problems.

I recognised a pattern from my younger activist days whereby idelogical purity guarantees that a movement can only ever preach to the converted - the movement with a complex but righteous and radical message quite literally drives away any potential convert as soon as they dare set foot in the door and fail to recite the appropriate creed. Every successful organisation needs to overcome its own introversion and look outwards instead, take pains to be as open-minded and diverse and reasonable as it can be in order to earn the right to speak to the world in general - and at the same time, it must keep true to it's core principles and convictions and be honest about what it believes. Not an easy thing. Not at all.

We are all angry about the way we have been (not) treated, yes? But we also have had little opportunity to express that anger properly. So what do we do but express it here, to each other! Not very often at all, to be fair, if you look at the range of threads and material and the limited number of places where arguments flare up and get out of hand. I don't want to stretch the point and make out that the problem is worse than it really is. But often enough to be a problem for the gentler souls amongst us who want everybody to get along and work through tough things together in a good spirit. We do achieve that most of the time, but when we get it wrong, it's very demoralising and we lose crucial supporters each time. How could we allow George to be lost to us? It's unthinkable! I missed that whole thread (I'm pretty sure nobody even notified the moderators there was a problem btw which doesn't help) until it was too late.

I think you're absolutely right Tina, it is excellent advice to everyone to take a step back and ask whether their activity is the most efficient use of their time. I do think these general conversations are worthwhile, just as advocacy is, but in my case I do realise I tend to post long streams of text because I just enjoy writing so much, and I get sucked into arguments and sucked in to trying to separate fighting patients, and I really need to work out how to Spend my Energy Effectively. I need to somehow learn to set my own agenda and stick to it, and focus on those things that can make a positive difference.

Thanks for the reminder! Big arguments and controversy are compelling, seductive and even fun for many people. But so often, they are a waste of time that would be better spent trying to change things through advocacy efforts. I resolve to do better in future, now that I've finished yet another long post...

 

[usedtobeperkytina]

Well said, Mark.

Tina

 

[MEKoan]

Don't forget, guys, this is a very public conversation we are having here.

What you say here matters. Writing on the forum is a form of publishing. People come here to read what we are saying.

It matters.

Peace out,
Koan

 

[MEKoan]

Just to clarify. I'm not saying don't debate! I'm saying that posting on an open forum is contributing to the public dialogue about ME/CFS and that your ideas matter.

We can't know what effect this forum, in particular, has had but we know it is read by many of the people we would like to reach.

I'm saying that there are issues which may transcend ordinary issues of politeness - almost certainly do, at times.

Posting can be activism!

Peace out,
Koan

 

[Esther12]

Posting can be activism!

That's how I justify endlessly delaying my own DSM-V submission in favour of posting here!

 

[Frickly]

Tina and Mark.....I agree completely with everything you have said. It is true that sometimes we have to take a step back to see the reality of what is going on around us. Also, I agree that it is a good idea to pick one or a few advocacy efforts and spend time on these rather than getting sucked into issues that really are not going to make a difference in the end. Luckily....in this case...we can choose what we put our energy into and leave the rest.