help "re-brand" CFS

[fresh_eyes]

fresh_eyes...what do you think about this idea: My university is on the same campus as one of the two NJ medical schools. What about an awareness project aimed at the med students? I am also a member of AMSA - a premed "club" - on campus. I don't think public opinion will change until physicians take this seriously. We might not be able to change the minds of those doctors who already have made up their mind about CFS. But if we can get the message out to future doctors, then there will be a new generation of enlightened physicians who won't make the same mistakes as their predecessors have.

You are perfectly positioned to actually make that happen. Wow! And then perhaps put together a packet others could use to replicate it at other med schools...Fantastic.

 

[CJB]

I am also thinking that, in a strange way, "CFIDS" may have been appropriated and should be taken back by the grass roots.

CFIDS may be every bit as useful a name as AIDS when you consider all the factors.

Exactly what I'm thinking. I think it's too soon, but if and when they prove XMRV infection explains 90%+ of the cases, I see CFIDS as analgous to AIDS. AIDS is caused by HIV infection (mainstream thinking at least) and CFIDS caused by XMRV infection (ostensibly).

 

[fresh_eyes]

OK, guys, now, kind of a can of worms, but: do we prefer CFIDS, or CFS?

I've always found CFIDS kind of awkward. Do those of you who use CFIDS say "see-fids" or "C.F.I.D.S."?

 

[CJB]

I say see-fids

 

[Katie]

CFS: Some people die from it.

That would get some people's attention.

Do keep in mind that children develop this disease too, I don't want to scare them. I would have been negatively affected when I was younger if I thought I was going to die. I can cope with harsher realities now but I would not want to put any young sufferer through a tough campaign even if it gets attention, there are other ways. ME is a disease of sons, daughters, mothers, fathers, grandparents, friends, coworkers, black, white, yellow, rich, poor, religious, atheist, young and old, anyone can abuptly lose their health, their old life and their identity.


I think that CFS rebranding would benefit from local level information dispersal. I don't know if they have them in the state but in our surgeries are stands full of leaflets and posters from charities, the NHS, awareness groups and support groups. I picked up loads since I've been concerned that my father is developing early signs of dementia and there were ones from the PCT (Patient Care Trust, don't ask), memory clinics and the Alzheimers Society. If we could develop a leaflet that had information on what it is, what you can do as a sufferer or a family member/friend and people you can contact it might help change minds locally. I've never seen one for ME and we have a bundle of ME charities, then again I try not to go into my doctors too often.


That's just one idea that could be in an arsenal of many.


Also, while it's good to plan this, when we know how many our numbers will dwindle by due to XMRV (if any) then we can see what we're left with and how to go about this and make some noise. I also believe that Dr Kerr is a horse along with genetic research is a good research avenue to follow in hopes of unravelling the mysterious among us.


I bet there's been fifty posts since I started this post!

 

[CJB]

Exactly what I'm thinking. I think it's too soon, but if and when they prove XMRV infection explains 90%+ of the cases, I see CFIDS as analgous to AIDS. AIDS is caused by HIV infection (mainstream thinking at least) and CFIDS caused by XMRV infection (ostensibly).

Forgot to add to this -- if the XMRV thing pans out, it's my understanding that it's only one of three known retrov's? Another reason to brand it the same way as AIDS. I'm sure there are also compelling reasons not to, but I can't think of them right now.

 

[MEKoan]

Forgot to add to this -- if the XMRV thing pans out, it's my understanding that it's only one of three known retrov's? Another reason to brand it the same way as AIDS. I'm sure there are also compelling reasons not to, but I can't think of them right now.

This raises the issue of timing. I think everyone should stay fluid and flexible. No matter what happens with XMRV, this will need to go forward. Strategies should, at this time, embrace either/any outcome.

 

[fresh_eyes]

Forgot to add to this -- if the XMRV thing pans out, it's my understanding that it's only one of three known retrov's? Another reason to brand it the same way as AIDS. I'm sure there are also compelling reasons not to, but I can't think of them right now.

Do you mean in terms of using "CFIDS" instead of "CFS"? It makes a lot of sense...Unfortunately it has one big disadvantage in that it is not the term used by medicine and governments...But on the other hand an advantage, in that it's used by the CAA.

Anybody else have thoughts on this?

 

[_Kim_]

You are perfectly positioned to actually make that happen. Wow! And then perhaps put together a packet others could use to replicate it at other med schools...Fantastic.

The project includes a powerpoint presentation and I was thinking that I would do the initial presentations in person at the local Med School. Get a little practice, see how it flows. Then, redo the Ppt with a voice over. This could be distributed to other med schools and I won't even have to show up. Though, if I'm feeling well, I would happily do so.

I'm gonna go dig around on the National AMSA website later. I think they have a few student grants/awards, etc. I've never won on a lottery ticket (and I didn't win the WPI Harley), but every contest that I've entered that contained my writing has won something. I've got good luck in this area. A few years ago I won $2000 from the Massage Therapy Foundation in their case report contest. Let me see what's out there. The thing with contests is that it gives the project much more visibility than it would through other ventures.

 

[leelaplay]

Go Kim go!

if

 

[_Kim_]

Kim,

You are a secret weapon!

I have a feeling you are going to make a big difference in this endeavour, I really do!

((((giggles))))) Me, a secret weapon? I like this. I think that the pre-med and med. students would listen to me because I was one of them (though much older).

I have a feeling you're right about your feeling. Oh, this is good.

 

[_Kim_]

Wheels are spinning...just now remembering that there is a 2nd year med student there that did research with my doctor, Susan Levine, and presented her findings at the NJ CFS conference last month. I spoke to her afterwards and made a nice connection. She might be able to advise me how to get the audience I need over at the Med School. And she could help me get it an event well-attended. These kids are way overworked and the big challenge will be to get them to come to my presentation.

 

[gracenote]

CFS and research

Do you mean in terms of using "CFIDS" instead of "CFS"? It makes a lot of sense...Unfortunately it has one big disadvantage in that it is not the term used by medicine and governments...But on the other hand an advantage, in that it's used by the CAA.

Anybody else have thoughts on this?

Also, CFIDS is not the term most often used in research. A tremendous amount of research (not all of it great, for sure) has been done using the name "chronic fatigue syndrome." I think there are valid reasons for continuing the name as far as continuity of research is concerned. Also, there is a more aware public perception to "chronic fatigue syndrome" now than there was twenty years ago, though a lot of work left to be done.

Has anyone commented on ME/CFS? The positive of this, I think, is that it connects us with the international community.

A lot of great ideas here.

 

[MEKoan]

Wheels are spinning...just now remembering that there is a 2nd year med student there that did research with my doctor, Susan Levine, and presented her findings at the NJ CFS conference last month. I spoke to her afterwards and made a nice connection. She might be able to advise me how to get the audience I need over at the Med School.

Dear Secret Healer,

You never know how you're going to become who you have always been, do you?!

Let the energy lift you up but be sure to breathe into a restful place before exhaustion rears its head. I have a feeling we may need you for a long time and we can't afford a crash and burn.

Let your spirit stay buoyant throughout! But do remember to rest your body and brain before you think they need it - if only for moments; sometimes in those moments we discover that we really were becoming fatigued. Tune into you from time to time!

Go get 'em!

 

[Marylib]

For our Secret Weapon

Yes, Kim, remember not to push yourself. In my experience, one can be in over-drive without knowing it...until.... THUD.

That having been said, have fun! With pre-emptive rest to balance out.

From Marylib, a nagging mama

 

[CJB]

Dear Secret Healer,

You never know how you're going to become who you have always been, do you?!

Let the energy lift you up but be sure to breathe into a restful place before exhaustion rears its head. I have a feeling we may need you for a long time and we can't afford a crash and burn.

Let your spirit stay buoyant throughout! But do remember to rest your body and brain before you think they need it - if only for moments; sometimes in those moments we discover that we really were becoming fatigued. Tune into you from time to time!

Go get 'em!

What she said.

 

[flybro]

And second post

I posted this another thread, but I thought it would be a good start here...

New Criterior for ME/CFS

Symptoms are

Courage
Inteligence,
Endurance
Compassion
Empathy
Humour
Laughter
Strength
Pateince
Resiliance

Wouldn't you all agree.

 

[gracenote]

Science and CFS

Since CFIDS is the CDC name, why would they research CFS in the USA? I'm not doubting you - it just seems a bit casual. Chronic fatigue is a symptom and just adding the "syndrome" at the end doesn't help.

I think the CDC uses CFS not CFIDS. Am I mistaken?

And just remember the Science article used "chronic fatigue syndrome."

----------
ETA

flybro — You also added to the other post: "You watch we'll have people linning up the street to catch it." which I thought was a terrific line.

 

[blackbird]

I think one to add to flybro's list for the future is 'Teamwork'.

It's the only way we can do what other people do for causes.
Because of the illness, we need to be like a relay team, or a cycling team. Hand on the baton, or ease up to the back of the group and get in the draft.

Another thought was that the problem with visibility is being housebound in a lot of cases. It's like an iceberg, with most hidden away. The Internet helps shift the balance as we can be active even from home, but the underwater percentage are still there.

As far as naming goes, it's such a mess.
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.

 

[fresh_eyes]

As far as naming goes, it's such a mess.
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.

Hi Blackbird. My understanding is that over here in the US we've never had ME (so to speak!), except among insiders. I do hope we can turn your last line around, and re-claim "CFS" from the wastebasket they've made it into - if we're stuck with it, which I think we might be.