Discussion in 'Action Alerts and Advocacy' started by fresh_eyes, Dec 13, 2009.
Here's a quicky answer on how the name-thing came about:
Khalyal, if you're willing, I'd really like to hear your thoughts on whether, and how, the "CFS" name might be claimed and rehabbed by the grass roots. CFS Pride? Comments?
Thanks for the link.
I'd picked up the jist of that from reading around, but it's good to have some of the history.
I just sometimes feel we're talking at cross purposes here due to definitions in different countries.
I'd got the impression that there was ME and there was the CFS basket (within the UK anyway), and that the holy grail of sufferers was to get an actual ME diagnosis so that you weren't just guessing. For me this was partly based on reading that the WHO had ME defined as a neurological condition since 1969, and that it was just corruption in the UK adding CFS to confuse the issue and remove the need for funding treatment or research, and reducing insurance claims for the companies the psychs who set this all up were in bed with.
(though a search to confirm the WHO information didn't find much, apart from this: Change of definition - poss 2004? )
The confusing thing for me was the use of CFS here, but knowing that ME isn't used at all in some places clears that up.
Another version of fresh eyes' byline
@ Fresh eyes: I've come to this string late, but really like the idea of your byline.
How about an extended version of yours:
CFS (or CFIDS): Some people die from it. Others just lose their lives.
Pretty much sums it up, eh?
Well, I'm not really for a name change at this juncture, but that doesn't mean I don't think the name is utterly stupid, lol! The name has done a lot of damage. But here's why I am not up for a name change YET:
Point 4 of the Holmes Definition is:
4. The chronic fatigue syndrome is currently an operational concept designed for research purposes that physicians must recognize not necessarily as a single disease but as a syndrome - a complex of potentially related symptoms that tend to occur together - that may have several causes. Periodic reconsideration of conditions such as those listed under major criteria, part 2, should be standard practice in the long-term follow-up of these patients.
So, CFS was the name given as an operational concept, to study an illness that was not yet in medical literature...so that they could develop a test and then PUT it into medical literature.
So when I say CFS, that's what I mean.
Unfortunately, when some (CDC, psychologizers, mislead medical sector, etc.) say CFS, they are assuming that it is already defined, by the descriptors listed as things that should be studied.
I think if Peterson/Mikovits, for example, find the cause, then they can name it whatever they want. But in the meantime, I don't think the name is the problem. It's how it's been used that's the problem.
How to rehab it? Good question. Maybe the name is the test. Ask your senator, your lobbyist, your advocacy group, your doctor...what is CFS? If they say it's a name given to a manifestation of illness that was not yet in medical literature, then you have a winner, lol!
Or maybe we could change what it stands for....Completely Fed-up Sickpeople?
Yes! Love this!
Nice, parvofighter! Very powerful.
I'm taking notes.
A relevant discussion from another thread reposted...
Right, that's it, any thoughts people? I think one thing I'd like to see discussed is whether it's going to be best for XMRV and CFS to separate and form their own groups in a preprepared fashion or form a strategy to stick together and make sure we still speak with one voice. Maybe this could be done by utilising the momentum from the XMRV discovery (I'm speaking like it's panned out for the purposes of discussion).
What do you guys and gals think?
Same here, Athene. Excellent idea.
OK, guys, this thread has totally inspired me. Last night a media campaign using some of the ideas mentioned here came to me in a flash. (That's my field - in which I am, of course, woefully underemployed.) I am going to work it up today.
Anyone else remember the pill bottle campaign? One year we saved up all of our empty pill bottles and mailed them somewhere maybe the CDC?
That's wonderful fresh_eyes. I didn't know that we had a media expert in the house. Can't wait to see what you draw up.
Go Fresh, go Fresh, go Fresh!
I'm a total newbie to this forum thing (first post) so I don't understand how to quote anyone and don't even mention the avatar thing....However
1. Parvofighter. "CFS (or CFIDS): Some people die from it. Others just lose their lives."
Brilliant simply brilliant.
2. Re ME Unawareness - My observation having recently come to live in NZ is that the profile of ME/CFS is zero here. Even worse than my native UK.
When I emailed the ANZMES Group suggesting I could do some voluntary media work/science writing following on from retrovirus discovery they poured cold water on the idea. Their whole approach seems to be very low key ("no lobbying government about XMRV" is another of their recommendations).
I am concerned that with no profile ME/CFS will be well down the queue in NZ for funds to implement tests and treatments when they become available. Any thoughts anyone?
This has just gone up on the UK Measssociation website. It is both a terrible illustration of the situation in the UK and a welcome reminder that many credible people understand what a travesty the CBT/GET NICE guidelines are. Fortunately I managed to evade the UK Psych Squad unlike CTOT.
The road to get change will be a hard one . Its a good job you're all so clever!
OK, guys, I'm feeling a little shy about putting this out there, but here goes. This is what came to me in a flash of inspiration:
The CFS OUT Campaign.
CFS takes people out of their lives. Let's bring it out of the closet.
Mock-up for a print ad or poster:
Collateral/tshirt/button/bumpersticker for the CFS OUT campaign:
They're both awesome, fresh.
Really nice work, Fresh!
I really, really like "CFS OUT", a lot! I think that's a stroke of pure genius!
It takes us out of our lives and we neet to come out about it.
I also really like: CFS - some people die from it - others just lose their lives
but I think it needs tweaking, massaging... just a teeny bit
you are, as they say, da bomb!
CFS: There's more than one way to lose your life.
CFS: Maybe you won't die; you'll just lose your life.
CFS: It takes you out - sometimes all the way
(?) I think that it might be a good idea to be a little less direct with the die thing for two reasons. One, as someone said earlier, it might unnecessarily freak out young people with the illness and it is, as far as we know, an unusually dire consequence which may turn people off. We don't want to give anyone anything to justify ignoring the message. Doesn't mean we don't say it.
Can we do something with RIP?
Her doctor said she just needed some rest.
RIP Dec. 14, 2003
CFS ~ It takes you OUT
What did I just say about not leaning too heavily on the die thing?! I never listen to me!
A genius, that's what you are!
This is sooooo solid!
I love it!
You can also try a Google Site Search
Separate names with a comma.