Design a Brochure

[gracenote]

a brochure with good info

Here is an example of a brochure that might help us get started. It is by The ME/CFS Society of NSW Inc.

Please feel free to print and distribute this brochure as required. If you want a large number, contact the Society for more information.

http://www.me-cfs.org.au/files/health_prof_brochure.pdf

 

[Countrygirl]

Koan and Marylib



Thank you both for your support; it means so much.

Koan - I'm of Irish stock, too. Do we share the same genes???

The poor woman I mentioned is not someone I know.....it's just quite a number of folk telephone for help and information. I want to rush out on a white charger and do battle on their behalf...then I crash ....and that's before the charge.

I had an interesting phone call a few days ago. A DWP employee (those unmentionable people who refuse us benefits) telephoned me to say she was personally very concerned how many obviously very sick people with a diagnosis of M.E. were being sent to her for a work-focused interview. She says she knows they are far too sick for work, but she has to tell them they must take a job. She is concerned that she is instructed to tell folk who are obviously very ill that there is no benefit for them and that they have to work. Wanted to know what I could do about it. What indeed?????:

(I am so glad I found this forum.) Night, night folks...well nearly.

 

[Marylib]

Benefits for people with ME

Good lord, Countrygirl, this awful. People with ME being told to sign up for work. It is criminal and I believe it will be proven criminal in the future.

Here in NZ, the law is that if your doctor signs you up for a benefit (sickness, invalids, disability allowance) they have to accept it regardless of diagnosis.
However, some case workers fight this and then the patient has to do appeals, etc. It is terrible.

In the USA, you are in really unfriendly territory. People have to hire lawyers to get on welfare benefits, have to spend every dime down before they are considered. It is typical American thinking about sick people -- "they should have bought disability insurance while they were still working". One can see this attitude playing out now in America, with the insurance companies being the winner in the "health care reforms" at the moment. It is so depressing to me, mainly because I do not know how I would ever live "at home" again -- could not get medical care.

But I am lucky to have come to NZ (my husband's home) before my illness manifested. On immigration, the only diagnosis I had previously was insomnia, which did render me unfit to immigrate.

 

[Dr. Yes]

Thanks

Dear Everybody,

First of all, I was blown away by the response I got from you. I thought I was going to annoy everyone with that long post, but instead I see your big hearts on display yet again. You really know how to make a guy a feel better. I've already PM'd some of you and hope to get to the rest, but if I don't -- I hereby officially send major HUGS and thanks to each one of you for your support!

Unfortunately I've just come off another miserable day (during which that crappy cardiologist I mentioned told me "you need to exercise..you need to push yourself harder....I don't know that you HAVE chronic fatigue syndrome", etc... Don't know what she based the latter on, but when I started to 'educate her' she cut me off and went to see another patient. Well, I'm never seeing her again...).

Anyway, down to business... I felt bad earlier distracting from this post... So, teej: are we designing a pamphlet first or a booklet? I agree that pamphlets won't do it for doctors, though the nursing aides aren't going to read booklets (some here can't read english anyway). Actually, I don't know how to make doctors (with their Mercedes-sized egos) really pay attention to some booklet they got from a patient, anyway. The nursing home doc told me that he "doesn't believe in CFS and doesn't believe in global warming". A lot of people are prejudiced against the very concept for some reason. If we understood their reasons, I guess we'd have a better idea how to target them.

Would it make sense to produce a brochure for a specific "problem issue" in CFS, like CFS + exercise, aimed at one relevant type of professional (e.g. phys. therapists or docs who want to prescribe GET?).

 

[starryeyes]

Apologies for changing your name, teejkay. I will write it out a hundred times as a punishment.....(guess what my job was in my previous existence.)

Don't you dare! I didn't even notice-- lol. Besides I go by tee, teej, kay, tj, teejkay... whatever... lol It's all good.

 

[Countrygirl]

Teejkay

Thanks teej.......I'll stop writing!!! And I will stick to teej....even my sleep deprived, foggy brain cell can cope with that!

 

[Dr. Yes]

From Countrygirl:

I've just had a phone call from someone who has been given my number....... she's been v. ill for 20 years, has just been made homeless by her partner, has no medical support, has been refused benefits and is desperate and very distressed. Homeless and v.ill for Christmas! What can I do for her???

I wonder how often that happens and goes unnoticed by everyone. It almost happened to me (hospital social workers were talking about releasing me to a homeless shelter since insurance would no longer pay for my stays there), so I know how easy it is for that to happen. There is NO safety net in many cases in the US. But I thought there was some basic public support in the UK that prevented the kind of homelessness we have in the US?

Until a couple years ago there was a nonprofit run by a woman with CFS in New York City called the CFIDsers Emergency Fund. They (she) provided and/or advocated for emergency temporary housing, food, supplies, etc. for people with CFS who found themselves in these sorts of situations. But I was told that she herself became too ill to continue her great work and their website, etc is no longer active. She ended up financing a lot of it out of pocket anyway, and really overextended herself... It would be great to have people with MONEY financing more groups like that (or better yet, the government).
I think the demand would be a bit overwhelming, though.. but something is better than nothing..

 

[starryeyes]

My god, Dr Y. I really don't know what to say. I have been expressing my horror at what people are experiencing in the UK, and here's basically the same thing happening stateside. It makes me really...well, I wanted to say sad, but the more I think about it, it makes me really angry.

I am starting to see this as mainly a human rights issue.

I am nowhere near as ill as many people here (I thought I was pretty ill until I started hanging around here...) so I'm trying to do what I can. Perhaps grassroots advocacy will make a difference. It worked for ACT UP. Hang in there.

OK, people - sounds like we need 2 very professional-looking informative pieces, one for the casual interaction (eg parking lot) and one to actually educate professionals or people who need an in-depth understanding. Let's compose and I will design.

CFS/OUT!

Oh fresh eyes.. you worked for ACT UP! Awesome!! Girl.. we NEED YOU! Thank you so much for volunteering to design all the things we need to get the word out there. You GO!!

 

[starryeyes]

For doctors, I have been trying to purchase copies off the Canadian Consensus Overview. My first email went unanswered. I just sent a second email.

I was gonna say, the brochure and the booklet should have a link to the Canadian Definition of CFS at the bottom of them.

Here's the link: http://www.cfids-cab.org/MESA/ccpc.html

 

[starryeyes]

Dr Yes: That sounds beyond horrible. I am so sorry.


As far as Brochures go:
What about brochures explaining/for the different levels of CFS? Going off of Bell's scale. One for zeros, one for 1's, and so on. The zero/1/2/3 etc. brochures could say what the patient can do, can NOT do, and what is needed -- with proper medical quotes, from doctors etc.


And maybe a brochure on medical needs (explaining what's wrong) -- mitochondria, and so on.

I think this idea might work well but it would be best put in the booklet. I think we want to keep the brochure simple and easy for the public to comprehend. Basically just something that explains that CFS is a crippling disorder.

Kim wrote: I sent Dr. Yes a PM earlier to see if I can visit him for Christmas - well, not for Christmas, but on or near Christmas day. I want to bring food, supplements, and earplugs and a dozen copies of this article:

A review on cognitive behavorial therapy (CBT) and graded exercise therapy (GET) in myalgic encephalomyelitis (ME) / chronic fatigue syndrome (CFS): CBT/GET is not only ineffective and not evidence-based, but also potentially harmful for many patients with ME/CFS

Kim, you are such a sweetheart. This makes me so happy. Dr. Yes we care about you! I haven't stopped thinking about Dr. Yes's plight since I read about it. I pray they aren't forcing him to do anything or taking away his access to us.

Those medical personnel are so uneducated, cruel and mean it really makes me angry!!

gracenote wrote: Here is an example of a brochure that might help us get started. It is by The ME/CFS Society of NSW Inc.

Quote:
Please feel free to print and distribute this brochure as required. If you want a large number, contact the Society for more information.
http://www.me-cfs.org.au/files/health_prof_brochure.pdf

Great. That sample can really help us.

marylib wrote:
But I am lucky to have come to NZ (my husband's home) before my illness manifested. On immigration, the only diagnosis I had previously was insomnia, which did render me unfit to immigrate.

They wouldn't let you immigrate because you had insomnia?

 

[starryeyes]

Anyway, down to business... I felt bad earlier distracting from this post... So, teej: are we designing a pamphlet first or a booklet? I agree that pamphlets won't do it for doctors, though the nursing aides aren't going to read booklets (some here can't read english anyway). Actually, I don't know how to make doctors (with their Mercedes-sized egos) really pay attention to some booklet they got from a patient, anyway. The nursing home doc told me that he "doesn't believe in CFS and doesn't believe in global warming". A lot of people are prejudiced against the very concept for some reason. If we understood their reasons, I guess we'd have a better idea how to target them.

Would it make sense to produce a brochure for a specific "problem issue" in CFS, like CFS + exercise, aimed at one relevant type of professional (e.g. phys. therapists or docs who want to prescribe GET?).

Oh good Dr. Yes, I'm glad to see you're here and still with us. The way you are being treated is appalling. I hope and pray things can change for you very soon.

I think it would be great if we could create a specific brochure for CFS + exercise.

I just am not sure how this is all going to work if at all. Luckily fresh eyes is great at designing stuff and can do that part. Perhaps fresh eyes has ideas about how we will pull this off. We need to make brochures, and hopefully booklets or tri-fold pamphlets as cheaply as possible if not free and then we have to figure out how to distribute them to patients.

Some patients can print their own, so we may be able to put up a website like the one fresh eyes was talking about and have them be downloadable from there.

I think it would be great if CAA or other CFS orgs would step up and help us print them and distribute them. Each patient will need several at least probably to be able to hand them out.

 

[Dr. Yes]

I haven't stopped thinking about Dr. Yes's plight since I read about it. I pray they aren't forcing him to do anything or taking away his access to us.

Thanks Teej

Awful stuff like that did happen to me last year (and ten years before that), so obviously I'm nervous about it happening again... But so far, despite yesterday's "circling the wagons", I don't see that as an imminent threat here.. Not unless a psychiatrist gets involved. (Why is it always psychiatrists who get to force people to do things, when they have the least experience with physical disease?) There IS a terrible psychiatrist here, but there's also one who clearly believes CFS is a physical disease, so hopefully they'll cancel each other out.. Also in my favor is the fact that nobody here really cares enough to make a big deal out of anything... So I try not to worry about it (fingers crossed)..

Perhaps fresh eyes has ideas about how we will pull this off.

Unfortunately, our resident creative genius is on leave for a couple days!

I like your ideas, teej. I'm trying to think of organizations other than the CAA that put out brochures, but I'm coming up empty... most just have info sheets you can print, and they ain't sexy... I just posted a reply to jspotila elsewhere about removing the VERY troublesome stuff about exercise from their brochures and website... Wish they would just distribute whatever we come up with!

 

[starryeyes]

That's what I'm hoping too. I saw what you wrote to the CAA and I completely agree!

It sounds like you've been going through a whole lot in your life. I'm so sorry for all of the mistreatment you have endured. Your story really needs to be told and you're a very good writer. If you had more energy it would be great if you could write a book about it.

We seem to be brainstorming simultaneously for both a short brochure and a more in-depth tri-card or small booklet. I think a tri-card like the CAAs only with the right information would be great. I think we can come up with ideas here for both projects at the same time because as we come up with ideas we can decide if that item is better on the brochure or the tri-card... I guess they're both brochures, I just want one that's simple and quick for the public and then a more in-depth one as well especially for situations like yours.

What do all think?

 

[fresh_eyes]

Hi guys, just popping in. I've been worried about Dr Y too - glad to see you're here, dude.

Yes, it does sound like CFS + Exercise is the first big topic that needs to be addressed in educational materials, huh? It's the arena where people are actually being harmed. Even in the UK, that's why people aren't complying with their so-called "treatment plan", because it is exercise-based and physically harmful. (Argh!)

I'll think about his and see if I can come up with a "slogan" for this aspect of it all. (Great image would be a "missing person" layout with an athlete in action)

ps @teej - I didn't work for ACT UP, It worked for them - but I do really admire them and hope we can learn from them.

OK, I'm off - paid work today, yay!

ETA pps I wonder if PANDORA would be interested in distributing materials?

 

[mvwu]

Your story really needs to be told and you're a very good writer. If you had more energy it would be great if you could write a book about it.

Dr. Yes, I haven't been able to stop thinking of your post either. You are, as teejkey says, a very good writer. When you feel well enough (before you get to that book) how about a magazine article based on what you told us? (New York Magazine comes to mind.) I hope writing it would do you some good; your getting it published would help us all.

 

[gracenote]

small could be beautiful

We seem to be brainstorming simultaneously for both a short brochure and a more in-depth tri-card or small booklet. I think a tri-card like the CAAs only with the right information would be great. I think we can come up with ideas here for both projects at the same time because as we come up with ideas we can decide if that item is better on the brochure or the tri-card... I guess they're both brochures, I just want one that's simple and quick for the public and then a more in-depth one as well especially for situations like yours.

What do all think?

I'm thinking less. Instead of a tri-card or brochure, what about a postcard size handout? It could be mostly graphic on one side with a simple sentence, and a more thorough (yet simple, and not too wordy) explanation on the back. You could design 4 per page, one topic per card.

I know, as good intentioned as I am, reading a brochure is work unless I'm particularly interested in the topic. We're wanting to reach people — the annoying ones questioning why we're parking handicapped, the over-zealous health-aids, the maybe-not-so-well-intentioned friend or foe, the way-too-busy medical personnel — and hand them something that they will get the gist of even if they're not really trying. (You could add a place for further info or contact so they know where to go for more in-depth understandings.)

The one negative I see is that it will be more difficult for people to just download the copy to pass out. But certainly we could make it so that a photocopy / camera-ready copy can be downloaded for individuals to take to Kinko's so multiple copies could be made on heavier stock and also cut in four pieces.

So I guess that's what I think.

 

[Tammie]

brochure

a few thoughts:

-re disabled parking....I had a bumper sticker made that says: Not All Disabilities Are Visible.....putting something like that on a brochure (at the top or as a heading or something) might be an idea

-I definitely think that for a handout for Drs, the Canadian consensus would be very good....also the part of the NSW brochure that says why a medical setting can be detrimental is really good

-as far as PEM goes, I have often explained it by comparing the mitochondria to batteries....basically I tell people that everyone's cells have mitochondria; in normal people, these act sort of like rechargeable batteries that make the cell work by recycling ADP to ATP and back (and in normal people these are the kind of rechargeable batteries that can be functioning while they are charging - kind of like when someone plugs their cell into a car recharger and can talk on it at the same time); then I explain that in people with ME/CFS, our mitochondrial "batteries" either do not charge at all, or they do so very slowly and cannot be in use while they are charging....so when our "batteries" need to be replaced or recharged (ie: when our bodies are trying to make more ATP), they literally cannot work.....since there are mitochondria in every single cell and since they all seem to "recharge" at their own pace, some will usually be working while others are not. That is why it is hard to predict how/when different parts of our bodies will working or not working, and why it is possible for exertion to cause us to literally run out of energy. And that is why pushing it when we are already feeling bad makes us worse - it uses up what little "charge" we have left. We can no more push through this than a person can make a dead battery work. I also explain that PEM can cause a lot of other symptoms, too - it's not just exhaustion - that when the different parts of the body are not "recharging" and thus not working properly, the various systems of the body go haywire and all sorts of other symptoms arise.

I realize that my battery explanation is a bit lengthy, but maybe someone can come up with a way to explain it more briefly. I do know that everyone I have used this explanation with in person has seemed to understand a lot better why I have PEM, what it is, and why it affects the whole body, why it is hard to predict, etc.

 

[Tammie]

re "battery" explanation

btw, I used my battery explanation with a Dr and he understood what I meant rt away (the Krebs cycle does not work rt with us).....so if even a Dr thought it was a decent explanation, and didn't scoff at it, I think it at least says that I am not way off the mark.....and like I said, I do know that several non-medical people who I have explained it this way to, definitely understood

maybe a simpler way to explain it (for a brochure) would be to say something to the effect of our cells do not produce the energy they need to function in the same way (or at the same rate) that normal people's do, so it is literally possible for our cells to temporarily become completely depleted and be physically unable to function at all

 

[starryeyes]

For doctors, I have been trying to purchase copies off the Canadian Consensus Overview. My first email went unanswered. I just sent a second email.

Why are you trying to purchase them when you can just copy them from the web? If you don't have a printer you can go to Kinkos and look it up on their computer and have them print it for you. You can even get it on cardstock there.

 

[starryeyes]

Here is an example of a brochure that might help us get started. It is by The ME/CFS Society of NSW Inc.

http://www.me-cfs.org.au/files/health_prof_brochure.pdf

This is exactly what I think would help people in Dr. Yes's situation!

I wouldn't want to hand that info to people on the street when I'm parking in a Handicap Zone though. This is why we need many different brochures for our many different purposes. Thanks for this link, gracenote. This is also a great one to give to our doctors.

gracenote wrote: You could design 4 per page, one topic per card.

I don't know.. there may already be too much info on it for that. I really think a map sized brochure would work. Part of the problem is that CFS is very complex.

Tammie wrote: re disabled parking....I had a bumper sticker made that says: Not All Disabilities Are Visible.....putting something like that on a brochure (at the top or as a heading or something) might be an idea

Awesome Tammie! I put that at the top.

Tammie wrote: maybe a simpler way to explain it (for a brochure) would be to say something to the effect of our cells do not produce the energy they need to function in the same way (or at the same rate) that normal people's do, so it is literally possible for our cells to temporarily become completely depleted and be physically unable to function at all

I like that and reworded it, check it out.

Keep checking the first Post of this thread if you want to see the proposed brochure as it's being created.