Design a Brochure

[gracenote]

everybody has such great ideas

This is turning out great, teejkay. Just a thought on the examples.

“The people with Chronic Fatigue Syndrome are in fact profoundly ill. They are as disabled as anyone with AIDS, with breast cancer, or with coronary artery disease.”

Quick thought. People with breast cancer are not necessarily disabled. Often it's the treatment that makes them feel ill unless it has metastasized. I can't help you with a better example at the moment or a better way of using cancer which is a good reference.

Tammie: I love your bumper sticker. Great.

-re disabled parking....I had a bumper sticker made that says: Not All Disabilities Are Visible.

Re: my earlier post. I think the postcard size might still be useful but not instead of a 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. . . . We're wanting to reach people . . . and hand them something that they will get the gist of even if they're not really trying. . . .

 

[starryeyes]

Thanks for your feedback gracenote. I thought that by putting breast cancer in there, he meant when they're dealing with the treatments and I think given the context, that that's how most people will take it.

Did you notice who said this?

“The people with Chronic Fatigue Syndrome are in fact profoundly ill. They are as disabled as anyone with AIDS, with breast cancer, or with coronary artery disease.”

lol

 

[gracenote]

here's a quote

Thanks for your feedback gracenote. I thought that by putting breast cancer in there, he meant when they're dealing with the treatments and I think given the context, that that's how most people will take it.

Did you notice who said this?

lol

Here's what I found.

Q: Doctor, I have CFS but some people just don't believe I am really ill. I can look so normal and feel so bad. How can I convince them this is real? Is there an online source for research that we can print out to increase awareness about the depths of this debilitating illness?

Dr. Klimas: The CDC has published very convincing studies on this exact question. They have shown that CFS/ME patients can experience a level of disability that’s equal to that of patients with late-stage AIDS, patients undergoing chemotherapy, and patients with multiple sclerosis. You can find this information on the CDC and the CFIDS Association of America web pages. Here is one meant for doctors: http://www.cfids.org/sparkcfs/health-professionals.asp. The first page of the Physician Toolkit quotes the CDC’s Dr. William Reeves on this subject.

http://www.prohealth.com/library/showarticle.cfm?id=8646&t=CFIDS_FM

Here's from the CDC's CFS TOOLKIT FOR HEALTH CARE PROFESSIONALS:

I think it would be good to use this one. No one would question this as it's from the CDC's own website.

◆CFS can be debilitating. By definition, all CFS patients are functionally impaired. While symptom severity varies from patient to patient, CDC studies show that CFS can be as disabling as multiple sclerosis, lupus, rheumatoid arthritis, heart disease, end-stage renal disease, chronic obstructive pulmonary disease (COPD) and similar chronic conditions.

http://www.cfids.org/sparkcfs/2008/toolkit4.pdf

"This easy-to-use CFS Toolkit (also available on the CDC's CFS Website) includes the most up-to-date information on CFS clinical care."

 

[Tammie]

I am happy that my idea (not all disabilities...) might actually help

so far the rest of this looks good to me.....I think that the part referring to breast cancer could maybe be changed to say "undergoing chemo" (or going through chemo or something like that.....from my understanding the treatment is the disabling part - though I could be wrong about that)

also Gracenote suggested that we use the CDC's quote re how disabling CFS is.....even though it is a good quote, I personally would hesitate to use anything that comes from the CDC, for a few reasons:

-I don't want people to decide they want to know more about CFS and then, having seen a quote from the CDC on our brochure, think that the CDC is a good source of CFS info (as we know, they have screwed with us, with the name, and with the definition so much that they have seriously harmed us, and the vast majority of info that has been on their site re CFS is NOT accurate and NOT what we want people to believe),

-and there was a recent AP article discussing a lack of ethics in the CDC - they are starting to get a bad rep with more and more people (so quoting them might not actually be viewed as reputable),

-and quite honestly, they just leave such a bad taste in my mouth due to all they have done to us I do not want to put anything out there that might make it appear that we appreciate their mess (or worse that we actually agree with them)

also, as far as the part, "In CFS the body's cells do not produce
enough energy which causes a myriad
of symptoms, many of which are
crippling and disabling." I like how my words were changed - actually I really appreciate it, bc I couldn't come up with somethign short enough.....but I do think that I would put "to function properly" after "enough energy".....I say that bc when most people hear the word energy, they immediately think about normal tiredness, and even though this does explain that it causes other symptoms, I still think there needs to be a little more emphasis on the fact that this is not a normal loss of energy.....just my thoughts, though, so if others don't agree, I can accept that

Brochure: This is a work in progress and is subject to change

Not All Disabilities Are Visible
Chronic Fatigue Syndrome
is one of many invisible illnesses.

Looks can be deceiving. People with CFS
may look well but they can be in intractable
pain and are often experiencing many
debilitating symptoms of illness such as:

Orthostatic Intolerance
Immune System Impairment
Wide-spread Body Pain
Gastrointestinal Issues
Cardio-vascular Problems
Breathing Difficulties

In CFS the body's cells do not produce
enough energy which causes a myriad
of symptoms, many of which are
crippling and disabling.

“The people with Chronic Fatigue Syndrome
are in fact profoundly ill. They are as
disabled as anyone with AIDS, with breast
cancer, or with coronary artery disease.”

William Reeves from the CDC

For more Info visit:
http://www.cfids-cab.org/MESA/ccpc.html (Canadian Definition of CFS)

Note: I'm trying to keep this one to something we can hand to people and cops on the street when we use Handicap Parking and that we can leave on the dashboard of our car. We're trying to keep this one short and simple. We can also design others as well for other purposes.

I think this may be pretty close to done. I'd be really happy to have this to hand out when I'm able to be out in the world. What do you all think?

William Reeves quote:
http://livingwithchronicfatiguesyndr...severe-cfs-is/
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

Okay you smart, creative people. This is a thread to see if you all want to come up with one- to two-page brochures about ME/CFIDS that we can hand out to people and the police who try to arrest us for parking in Handicap Zones, and to our doctors, nurses, dentists and family and friends.

This doesn't need to be a contest. I'd love to have many different brochures to suit my many moods and needs on any given day, how about you? The color for ME/CFIDS is blue by the way. You could leave one of these on the dashboard of your car when you park too.

The perfect brochure for me is actually just one or two page(s) about 4 inches across and 8 1/2 inches long on thick paper that you can just stick in your glove box and that has a picture at the top and some bold words that stand out. I'd like it to be a quick, easy read with a bit of information that tells how CFS is a crippling illness.

Lets hear more ideas. And also, ahm... does anyone know how to get brochures made cheaply? I know places like Kinkos will make them for us but I think they charge a lot. Maybe the CAA can help us out and they could also be the distribution center for us.

 

[gracenote]

good quote and doesn't need references

Tammie,

I appreciate your concerns about the CDC. However, we could use the following quote as is without mentioning the CDC or Reeves. It's what Klimas was referring to, and when I did a google search, this exact language was being used over and over by all kinds of CFS supportive groups.

CFS can be as disabling as multiple sclerosis, lupus, rheumatoid arthritis, heart disease, end-stage renal disease, chronic obstructive pulmonary disease (COPD) and similar chronic conditions.

Anyway, these are just my thoughts.

 

[starryeyes]

Gracenote wrote: Dr. Klimas: The CDC has published very convincing studies on this exact question. They have shown that CFS/ME patients can experience a level of disability that’s equal to that of patients with late-stage AIDS, patients undergoing chemotherapy, and patients with multiple sclerosis

Thank you gracenote. I like Klimas's best for this brochure because it's more concise and simple. This is for handing out to Joe the Plumber and we want it to be a fast, easy read and not take up much space.

Good points about the CDC Tammie. I think Klimas's quote looks better there too.

Tammie wrote: but I do think that I would put "to function properly" after "enough energy".....I say that bc when most people hear the word energy, they immediately think about normal tiredness, and even though this does explain that it causes other symptoms, I still think there needs to be a little more emphasis on the fact that this is not a normal loss of energy.....just my thoughts, though, so if others don't agree, I can accept that.

Good point and I agree with you. I changed it.

Thank you both very much for your input and if anyone else has any I'd be happy to look at it. I'm really happy with it. Now does anyone have a suggestion for distribution to patients? Maybe the website that fresh eyes is making?

 

[fresh_eyes]

re distribution - I can *definitely* host the brochure/card online for people to download. I can also make that file print-ready, so that it could be taken to Kinkos & printed on card stock, to make it more official-looking. If it's postcard size (1/4 sheet) it would be fairly inexpensive to have printed. That does really limit the amount of text, but I think it's plenty to get the point across to a stranger.

 

[Tammie]

I am truly not trying to be picky here, but one last suggestion.....

What about, "Respected CFS researcher, Dr. Klimas has pointed to studies showing that CFS can be as disabling as.........")....or even just "studies show CFS can be as disabling as........" as was suggested previously (I think by gracenotes)

I do think it is good to have some references to back things up, and like I said before if everyone else still wants to mention the CDC, I can accept that (albiet reluctantly )....I just thought I'd throw out this last suggestion and see what you think

overall, I do think that everyone has come up with a really good brochure....lots of good ideas from all

 

[starryeyes]

re distribution - I can *definitely* host the brochure/card online for people to download. I can also make that file print-ready, so that it could be taken to Kinkos & printed on card stock, to make it more official-looking. If it's postcard size (1/4 sheet) it would be fairly inexpensive to have printed. That does really limit the amount of text, but I think it's plenty to get the point across to a stranger.

That's awesome fresh eyes! You're hired.

I do think we could take this paragraph out if necessary to make it fit on a 1/4 sheet:

In CFS the body's cells do not produce
enough energy to function properly
which causes a myriad of symptoms,
many of which are crippling and disabling.

We'll know when we go to try to print it. We could also have 2 one with the paragraph and one without but we'll see how it goes first.

Tammie, I think Klimas's quote is better anyway. I did change it to that. I like the idea of putting "Studies show". Thank you and feel free to state your opinions anytime. You really helped make it much better.

Thank you everyone for your suggestions. I hope this helps people. Next we need to work on a pamphlet.

 

[Tammie]

teej

I am glad to help.....was worried that I was maybe getting a bit annoying or picky or something with my suggestions, so I am happy to know that is not the case....I like the way that the brochure is now and am so glad that you had the idea to do this

 

[Andrew]

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.

I thought I could not do this, but I just checked the site and found

In our efforts to make physicians aware of the Consensus Documents and ensure that patients receive an accurate diagnosis and appropriate treatment in a timely fashion, the authors may consider requests to reproduce this booklet providing ALL of the following conditions are met: This booklet must be reproduced in its entirety, with no additions, deletions, or changes to the booklet and its contents in any manner whatsoever; no profit can be made by any individual, organization, company, university, or otherwise; and the authors are credited as source. In your written request, please state that you agree to all of the above conditions and indicate how you intend to use the booklet.

 

[Victoria]

Rant all you wish, Dr Yes,

I always found that putting it into words released alot of anger & frustration.

May not help the situation, but writing it down does release some steam from the boiling kettle.

I can't believe how cool, calm & collected you were in that terrible situation with those ignorant, insensitive, uneducated fools.

My heart goes out to you (& others) facing such negative, unhelpful comments from supposed health professionals & carers.

(sorry, I haven't got any helpful hints for the brochure).

 

[Countrygirl]

Brochures

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.

Hi folks,

I wish we had those brochures available now! Last night I had a phone call from someone who told me that she has had severe M.E. for about 20 years. She is just about completely bedbound, her legs are contracted and her young carer (her son) has left home, so she is alone. Her G.P. gives her no support and keeps away. She has been receiving daily care from Social Services three times a day.

Things are now changing for her. The person at the top of the Social Service ladder (not sure who this is yet) has informed her that the care is to be partly/completely (?) removed. The reason given: patient is receiving no treatment or GP support so patient cannot possibly be ill and therefore care is to be removed! We need those brochures urgently!

Just thought I'd share the above ....makes me ...and very sad. Must go and do battle with the aid of the phone.....and some 'undercover' contacts who can pull some strings...hopefully...

 

[joyscobby]

May be a good starting point

came across this maybe a good starting point with adjustments as it is a draft of the good practice guidlines for GP's in Scotland.

but could readjusted based on Canadian Guidlines

http://mecfsinscotland.blogspot.com/2009/12/scottish-good-practice-statement-on-m.html

 

[Tammie]

re distribution - I can *definitely* host the brochure/card online for people to download. I can also make that file print-ready, so that it could be taken to Kinkos & printed on card stock, to make it more official-looking. If it's postcard size (1/4 sheet) it would be fairly inexpensive to have printed. That does really limit the amount of text, but I think it's plenty to get the point across to a stranger.

I meant to say this sooner, but thank you for being willing to do this!! I am really eager to get these printed....want to use them for people who make bad comments, people who genuinely want to know more, and possibly even to see about getting some of my Drs to put them in their waiting rooms for other patients to learn from....and anywhere else (library, church, grocery store bulletin board, etc)

 

[starryeyes]

Hi folks,

I wish we had those brochures available now! Last night I had a phone call from someone who told me that she has had severe M.E. for about 20 years. She is just about completely bedbound, her legs are contracted and her young carer (her son) has left home, so she is alone. Her G.P. gives her no support and keeps away. She has been receiving daily care from Social Services three times a day.

Things are now changing for her. The person at the top of the Social Service ladder (not sure who this is yet) has informed her that the care is to be partly/completely (?) removed. The reason given: patient is receiving no treatment or GP support so patient cannot possibly be ill and therefore care is to be removed! We need those brochures urgently!

Just thought I'd share the above ....makes me ...and very sad. Must go and do battle with the aid of the phone.....and some 'undercover' contacts who can pull some strings...hopefully...

Hi Cg,

That is a tragic situation and my prayers go out to your friend. I don't know if these Info Cards we're making would help her though. These are designed to give to strangers on the street for the most part to justify Handicap Parking or things like that. It would be great if an Info Card like this could help her situation but it sounds like they're only willing to take a doctor's word for her disability.

Can you or your friend contact ME groups in the UK and see if they can help her? I'm not sure which ME group is the best but you can try asking others from the UK that are here.

That is such a sad situation. It's really upsetting to hear that's happening to your friend. My heart goes out to her.

tee

 

[Tammie]

Cg, that is really a sad situation.....so sorry to hear about it and I so wish I could suggest something that might help....will be praying, though

why is it that the people behind so much of treatment protocol just don't get it?

We are not sick bc we are depressed - we are (some of us) depressed bc we are sick

We don't fail to go to the Dr bc we are suddenly healthy - we have (some of us) regressed so far that we are too sick to get there (and it's not exactly as if it does so much good if we manage to get there anyway!)

and in the US, if you are sick enough to need disability, you are probably too sick to be able to go thru the application process to prove it

it's all bassackwards!

 

[Countrygirl]

From the M.E. underground rescue service

Hi Cg,

Can you or your friend contact ME groups in the UK and see if they can help her? I'm not sure which ME group is the best but you can try asking others from the UK that are here.

That is such a sad situation. It's really upsetting to hear that's happening to your friend. My heart goes out to her.

tee

Hi teej and Tammie,

Thank you for your encouraging comments. It really helps to know we are among friends here. :Retro smile:

My home phone number appears to be public property and I get calls from all over the country from people who are having a very difficult time getting help from any official source, including parents whose children have been taken from them and locked in psych. wards. Some sympathetic docs also occasionally telephone to ask for advice. I have been working in league with a sympathetic retired consultant who lived hundred of miles away to spirit children out of psych wards and have other means to help folk who are refused medical help or who have their benefits removed. When this battle for recognition is over, we will have have some intersting stories to tell. :Retro smile: It can't come soon enough!

Warmest wishes,
C.G.

 

[Advocate]

Originally Posted by teejkay
We seem to be brainstorming simultaneously for both a short brochure and a more in-depth tri-card or small booklet.

At some point there was a discussion of these things, but I can't find it now. Anyway, one of the phrases or logos under consideration was a two-word phrase, "CFS/Out," or something like that. I never understood exactly the meaning of those two words, used together, but couldn't put my finger on my problem with it.

Then somewhere I saw two words, used together, that I liked a lot. "Solve CFS." I think those two words simultaneously suggest that the etiology is unknown, and they also issue a challenge to anyone who might think the etiology is known (psychogenic).

I was surprised to find a website that uses those two words: http://solvecfs.org/ I was even more surprised to find a SolveCFS Campaign, run by the CFIDS Association of America. I have been critical of the CAA in the past, for their seeming support of the psychogenic view, but here is something good that they have done.

Does their use of the phrase mean that no one can use (or would want to use) "Solve CFS" independently, if they want to? Surely the slogan is not copyrighted.

Has anyone here made any progress on a brochure, etc.? I didn't weigh in on it much at the time, have had some additional thoughts if anyone is still interested.

 

[fresh_eyes]

At some point there was a discussion of these things, but I can't find it now. Anyway, one of the phrases or logos under consideration was a two-word phrase, "CFS/Out," or something like that. I never understood exactly the meaning of those two words, used together, but couldn't put my finger on my problem with it.

Hi Advocate. Just FYI, that was my idea w/ "CFS OUT", and the idea was as a sort of Act Up (remember them?) for CFS - CFS out of the closet, speaking out, etc. To mobilize those affected by the disease. It's on the "Re-Brand CFS" thread. (I've been in a down spell since then, so it's been on the back burner.)

So that's pretty different than "Solve CFS", which a good slogan (and of course an extremely important goal) but is not something we PWCs are *personally* going to do - it's something we're trying to get scientists to do. I don't know how the CAA would feel about others using that slogan, you might ask them. And FWIW I am not that impressed with the materials they've produced under that slogan (for example, the "patient stories" on the SolveCFS site turn out to be "composite characters", not genuine stories).

I'm open to discussion on all this, though, and appreciate your input.

ETA Also brochure text has been decided - it's in the first post in this thread.