help "re-brand" CFS

[Khalyal]

It's a question I've meant to ask (and will now I remember) in a separate thread, but for me it seemed that ME was the core illness and name, but it seems less so the more I read up on things.
So, you don't get properly tested for actual ME (in the UK at least), but put in the wastebasket, and if they can't be sure what's up, and you match enough, then without ME you still get put in the same wastebasket. So everyone is then misdiagnosed with CFS.
It's one of the odd things I've found here, that so many use CFS or CFIDS. I guess that's the success of the psych guys in muddying the water.

Here's a quicky answer on how the name-thing came about:
http://www.cfsuntied.com/truth2#leopard

 

[fresh_eyes]

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?

 

[blackbird]

Here's a quicky answer on how the name-thing came about:
http://www.cfsuntied.com/truth2#leopard

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.

 

[parvofighter]

Another version of fresh eyes' byline

@ Fresh eyes: I've come to this string late, but really like the idea of your byline.

CFS: Some people die from it.

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?

 

[Khalyal]

Fresh Eyes

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?

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?

 

[fresh_eyes]

Or maybe we could change what it stands for....Completely Fed-up Sickpeople?

Yes! Love this!

 

[fresh_eyes]

CFS (or CFIDS): Some people die from it. Others just lose their lives.

Nice, parvofighter! Very powerful.

I'm taking notes.

 

[Katie]

A relevant discussion from another thread reposted...

A little off topic but what happens to ME/CFS advocacy groups if XMRV is proven to cause ME/CFS symptoms in a subset, let's chuck out 60% as a theoretical number from my head. How should the group move forward? Should they devote energy towards the 40% left XMRV-? Should they focus on pushing for XMRV funding, treatments and further research? Can they do both?

A huge fracture is going to occur in all groups around the world. Those within the organisations with ME will move towards XAND/XMRV activism if they are found positive and those who are negative will remain or restart their group to continue the fight. Doctors and non-ME'ers will scatter, some following XMRV and some remaining though I see most following XMRV.

This is what concerns me for the future. There's a lot of if, buts and maybes to address but if XMRV pans out then we are in for a huge and disorganised upheaval which will benefit XMRV/XAND much more than CFS which in XMRV's wake will be left stranded, disorganised and open to more psychologising and opportunistic predators pushing their cures and snake oil.

Well said, Katie. I've given this some thought, and have been thinking that the best thing we can do is to lay the groundwork to gain leverage from XMRV to benefit everyone - along the lines of, If XMRV causes many cases of CFS, some other, similar thing that's not yet discovered probably causes the rest. Let's discover it! That's why I'm interested in the re-branding of "CFS," because I think many of us will be stuck with it for the time being - I don't think XMRV is going to hit it out of the ballpark and solve *all* our problems, at least not immediately. Your thoughts?

We've got several forces to deal with. I'm writing this as a stream of consciousness but I'm going to try and keep my thought organised, bit like taming a angry bull with a wicked hangover but I'll try!

Force One: XMRV/XAND will most likely be dealt with by retrovirologists when it comes to research, this may be completely missing the mark for remaining ME/CFSers. So...

Force Two: Funding. If ME/CFS/XAND remain as one funding unit, how should the funding be divided. Either way, there are going to be peed off people and the threat of fracture occurs again

Force Three: Psychologists. It's happened before where a subset of 'unexplained illnesses' once in the realm of psychiatry were found to be physiological the remained are stuck with the 'REAL psychological cases'. Think along the lines of how people with MS were treated pre and post discovery and you'll see where my fear is grounded. We've got very were established figures on both sides of the pond with careers and reputations to protect and XMRV- folk will be vulnerable to a power grab.

Force Four: In fighting. XAND vs ME/CFS. The real versus the unknown. Funding, legitimacy, media message - it's going to get messy.

Force Five: XMRV/XAND would be better served with it's own separate advocacy group. It's harsh but if they have their own then they can get their funding, define a message to communicate to the world and scientific communities and really focus their efforts on this retrovirus. We may have been a group all together at one point, but that's because we were helping each other, if a group of people are a hindrance to recovery and research, then they've gotta go.



But good stuff...

Good Stuff One: Due to the joint grant between Drs Kerr and Mikovits I believe that the Whittemore Peterson Institute (which will become the most influential research facility in the world on XMRV should it pan out) aren't looking at ME/CFS with tunnel vision. If they can keep the focus on working out the whole puzzle then the advocacy groups might be able to bounce off their trajectory and channel them money like Rockerfellers. Gene expression work will be as big as XMRV.

Good Stuff Two: The media seem to be on side which will help ward off power grabs. Also, as XANDers emerge, stories about ill treatment by doctors, motivational speakers, quacks and what not will emerge, hopefully protecting the vulnerable for the short term.

Good Stuff Three: People on a forum called Phoenix Rising are thinking ahead and planning for the future. We've just got to decide if it's the best thing for XMRV- to try and hang on XMRV's coattails or go it alone and find their own answers through their own advocacy group with a definate message 'please don't leave us behind'.

Katie, really great analysis, especially for a bull with a bad hangover! () Your ability to look ahead is very impressive.

Right now, I'm particularly interested in your conclusion: "We've just got to decide if it's the best thing for XMRV- to try and hang on XMRV's coattails or go it alone and find their own answers through their own advocacy group with a definate message 'please don't leave us behind'."

I think we need to change public perception of "CFS" (I know, I'm harping on that today, sorry) so that it won't be an albatross around anybody's neck, and then ride those coattails like there's no tomorrow. (Mixed metaphors, anyone?)

Well if you want to achieve that then you've got to push the phrase 'XAND is ust subset of ME/CFS' like it's the only words you know. If we can divide ourselves into subsets but remain as a cohesive whole (but renamed, we need a more appropriate name to reflect us, as well as the subsets nature). This is something that can be communicated to the media but I think XMRV is going to be 'The New HIV' (like white is the new black ) and unless a holistic message of neglect is shown by the CFS community as a whole, not just the XANDers, we might be able to get round this, but I can see CFS voices being drowned out and doubt about their legitimacy being banded round by those with little understanding.

I'm still not convinced that XMRV- folk won't be better served in the long run with their own group focused on genes, virology and a few other things, not just retrovirology. I worry that XMRV has the potential to be a crashing wave of excitement in diseases beyond ME/CFS. Autism alone is hugely funded, so many doctors and researchers will want to work in this arena, who is going to keep looking while all this is going on?


I'm going to check out your rebranding thread and see what's been posted on there through the night, if you haven't already I might post our bits on here over there for discussion but I'm still quite sleepy after getting a better nights sleep than usual.

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?

 

[fresh_eyes]

Well I was certainly not aware of this till very recently, and I have had CFS for 25 years, which suggests that the various "CFS awareness groups," at least in the UK, should all be regarded as "unawareness groups."

Same here, Athene. Excellent idea.

 

[fresh_eyes]

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.

 

[CJB]

As far as CFS awareness goes, did anyone know that 12th May is international CFS awareness day? And has been for quite a few years?

Well I was certainly not aware of this till very recently, and I have had CFS for 25 years, which suggests that the various "CFS awareness groups," at least in the UK, should all be regarded as "unawareness groups."

Maybe a rebranding campaign could make use of this day for its intended purpose, at last?

Here's one random link I found:
http://www.cfs-news.org/action.htm

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?

 

[_Kim_]

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.

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.

 

[MEKoan]

Woo hoo!

Go Fresh, go Fresh, go Fresh!

 

[OverTheHills]

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?

3.http://www.meassociation.org.uk/ind...ourt-judicial-review&catid=30:news&Itemid=161 .
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!

 

[fresh_eyes]

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:

 

[fresh_eyes]

Collateral/tshirt/button/bumpersticker for the CFS OUT campaign:

[/IMG]

 

[CJB]

They're both awesome, fresh.

 

[Lily]

Wow!

totally awesome!!!

 

[MEKoan]

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.

Geeneeus!

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!



ETA

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!

ideas?

 

[MEKoan]

The CFS OUT Campaign.

CFS takes people out of their lives. Let's bring it out of the closet.

A genius, that's what you are!

This is sooooo solid!

I love it!