draft note and sypmtom description revision for CFIDS Association
Hey Island and Mary,
I totally lost track of this thread in all the excitement. And, now my brain in scrambled eggs.
And, I see, with some alarm (!!!) the word "revision.....
yikes! alarm and apologies - both not good. No sorries needed. Never meant to elicit either. I just wanted to strongly support your and marylib's ideas . Concur that it's so important for info to go out clearly & accurately + and for the layout take into account how people process info to ensure that the important info is remembered.
Please, please carry on without me!
I'll give it a go although not my area of expertise. Feedback from anyone with any experience of doing things like this would be appreciated. I'd like to send it to the CFIDS Association with an accompanying note expressing appreciation/approval of their revisions and the more reader-friendly approach. THen suggest something like this revision for the reasons Koan and Marylib outlined. I think if there's some way of attaching as many signatures as possible they might look at it more closely than if it is just from me - any ideas - necessary or not?
hmmmmmmmm spent the day trying to do this. Just pasted it from word and the formatting isn't shwoing. Not sure how to get it to show here. It has bullets, bold and indents in word
As a person with ME/CFS, I am writing to express my appreciation and approval of the re-visioning and revisions you are doing. Its impressive. The website and newsletter are much more accessible, interesting and user-friendly. Getting current with facebook, twitter and youtube seems brilliant as I understand they are the most common forms of info gathering and contact these days. And the solveCFS campaign is great at putting faces to the illness and hopefully eliciting empathy.
The one bit of constructive feedback I can offer at this point is regarding the What is CFS on the solveCFS page and the symptoms page on the CFIDS website.
1st Think it would be good for them both to be the same.
2nd I believe you could make the info easier for readers to process by reworking the layout a bit. On the solve CFS What is CFS page a friends reaction was
The layout gives more importance (bullets) to symptoms which are less common - second string symptoms, if you will - while the cardinal symptoms are buried in a paragraph. And, among the second string symptoms, psychological problems are given too much prominence.
When one is creating this kind of material, these seemingly small things are actually terribly important. Understanding that people usually skim, jump to bulleted info and absorb information in the easiest way possible is crucial to shaping the message in an effective way.
In my last career, I shaped messages in different mediums on a number of different topics. I wonder if they have professionals doing this because, if they do, the message is the one people will take away and not the ostensible message and they must understand that.
I know I may seem to be nit picking here but I believe this kind of attention to detail is just basic good sense.
And I agree completely.
3rd Another friends reaction to the paragraph on how debilitating ME/CFS can be was:
Most ME/CFS people, if not all, are disabled to one extent or another -- as we know all too well! And the "25%" figure actually refers to what most ME/CFS statistics call the "severely affected." These are people who are totally home or bed bound, unable to tolerate light, noise, etc.....the people we seldom hear from because they are not able to be in contact with the rest of the world.
Saying that only 25% of us are disabled is absolutely not true
Also, while most of us may appear "normal" much of the time, people in flare or relapse, or the severely ill, look far from normal. They often look very sick indeed. So I would change "most" to "many."
I thought the stats across different studies were that 0-20% of people recover to usually about 80% of their pre-illness health, about 25% are severely disabled and house or bed-bound and 60% are disabled and unable to work or can only work in a limited manner. I apologize but am too tired to find all the stats at this point.
I hope my comments and the attached sample of a revision are of use to in continuing to revise the sites and make them more reader-accessible.
Again, love the steps you are taking. Feel that you represent me and other ME/CFSers much better now!
What are the symptoms of ME/CFS?
As the name chronic fatigue syndrome suggests, this illness is accompanied by fatigue. However, its not the kind of fatigue experienced after a particularly busy day or week, a sleepless night, or stressful events. Its a severe, incapacitating fatigue that isnt improved by bed rest and that may be worsened by physical or mental activity. This is a distinctive hallmark of the illness. Although the name CFS trivializes the illness as little more than tiredness, it is one of the most debilitating illnesses (NOTE theres a quote out there somewhere that ME/CFS is more debilitating than cancer or HIV except for the final 2 months it could fit well here) and brings with it a constellation of symptoms. These symptoms include:
post-exertional fatigue: a worsening of symptoms following physical or mental exertion that can require an extended recovery time.
problems with concentration and short-term memory
pain: in the joints and muscles, tender lymph nodes, sore throat, and headache.
"The severity of CFS varies greatly from patient to patient, and there is often a pattern of relapse and remission. While some people with CFS are able to maintain fairly active lives, most are affected more profoundly and are disabled to one degree or another. About 25 percent of people with CFS are extremely ill, totally bound to house or bed. Many symptoms of CFS are invisible to others, which makes it difficult for friends, family members, and the public to understand the challenges of the illness."
Its not uncommon for people with CFS to have the following secondary symptoms:
brain fog and cognitive impairment
visual disturbances: blurring, light sensitivity, eye pain
difficulty maintaining upright posture, dizziness, balance problems and fainting
chills and night sweats
allergies and sensitivities to foods, odors, chemicals, medications, heat and noise
gynecological problems, including PMS
psychological problems: irritability, mood swings, anxiety, panic attacks