CFIDS Association Jumps Into the 21st Century

[Cort]

The CFIDS Association is coming of age in the digital age. This new website of theirs - SolveCFS is a nice step forward. Its visually appealing (what a change) and nicely designed. I think of it as the next step for them. They are coming down off the mountain top so to speak and getting in with the patients - something that's long past due. Good for them! whatever people think about the CFIDS Association it's only to our benefit to have a strong strong national group.

http://www.solvecfs.org/ABOUTUS/tabid/67/Default.aspx

 

[shiso]

Agreed. I thought the site does a good job making accurate information accessible to patients and non-patients alike, and the $5 million dollar donation goal is great too.

 

[MEG]

I am very impressed with the new SolveCFS site. I agree that it is time to have them listening to us!

 

[MEKoan]

Yes, I agree it's not bad. However, the following, copied from the site is problematic.

What are the symptoms of 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. Although its name trivializes the illness as little more than tiredness, CFS brings with it a constellation of debilitating symptoms. The fatigue of CFS is accompanied by characteristic symptoms lasting at least six months. These symptoms include sleep difficulties, problems with concentration and short-term memory, flu-like symptoms, pain in the joints and muscles, tender lymph nodes, sore throat, and headache. A distinctive hallmark of the illness is postexertional relapse (sometimes to referred to as postexertional malaise), a worsening of symptoms following physical or mental exertion that can require an extended recovery time.

The severity of CFS varies greatly from patient to patient, with some people able to maintain fairly active lives. For others, CFS has a profound impact. About 25 percent of people with CFS are disabled by the illness, and theres often a pattern of relapse and remission. Most symptoms are invisible to others, which makes it difficult for friends, family members, and the public to understand the challenges of CFS.

Its not uncommon for people with CFS to have the following symptoms:

* Visual disturbances (blurring, light sensitivity, eye pain)
* Psychological problems (irritability, mood swings, anxiety, panic attacks)
* Difficulty maintaining upright posture, dizziness, balance problems and fainting
* Chills and night sweats
* Gastrointestinal disturbances
* Allergies and sensitivities to foods, odors, chemicals, medications
* Brain fog and cognitive impairment
* Gynecological problems including PMS
____________________________________________________________

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.



Koan

 

[Cort]

I think you're right Koan.

Honestly I'm not sure that they do have professionals doing this. They, like all nonprofits, have been hit really hard by the recession. I think that they're kind of happy that they're still standing - apparently thousands and thousands of nonprofits bit the dust. I don't know who they have doing this. It could be Kim McCleary.

This isn't easy stuff. I'd never thought about their layout but what you say makes sense. I think only somebody with right kind of background would understand what had occurred.

At least there are more avenues open to interact with them now. Hopefully there will be more in the future - I sincerely hope they can get a blog together - its alot of work but it's also a great interactive tool. Sometimes I think they are missing some issues that are important to patients that they don't even know they're missing.

 

[MEKoan]

You know, Cort, maybe what I should do is copy and edit that page in a way I feel would be more effective and send it to them with an explanatory note. I am not up to doing more than that or having long conversations about it but I could do that much.

Thanks very much for responding to my complaints in a way that helped me to understand how to make a more positive contribution than just grousing.

I appreciate it.

Koan

 

[Roy S]

Koan,
I agree it could be written better. If you are able to do it, you could post it here for comments before sending it to the CAA. If you like.
Roy

 

[MEKoan]

Excellent idea, Roy!

I don't intend to rewrite it, just to shuffle things around a bit and move the bullets. But, I'd be more than happy to post that shuffle here so that others may.

Peace out,
Koan

 

[Marylib]

Koan's editorial assistance

Hi Koan,

Great idea to fine-tune this. I so much enjoy your posts, by the way...

This paragraph needs help:


"The severity of CFS varies greatly from patient to patient, with some people able to maintain fairly active lives. For others, CFS has a profound impact. About 25 percent of people with CFS are disabled by the illness, and theres often a pattern of relapse and remission. Most symptoms are invisible to others, which makes it difficult for friends, family members, and the public to understand the challenges of CFS."



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 and I wonder who the heck did write this.

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 must add, the first time I walked into an ME support group meeting, I almost turned around and left, because there was a look in people's eyes that reminded me of my grandmother in her early stages of dementia. )

Perhaps the paragraph could read something like:

"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, many others 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."


Best to all,
Marylib
......

 

[leelaplay]

Hi Koan,

Great idea to fine-tune this. I so much enjoy your posts, by the way.........

total agreement on both parts

This paragraph needs help:

"The severity of CFS varies greatly from patient to patient, with some people able to maintain fairly active lives. For others, CFS has a profound impact. About 25 percent of people with CFS are disabled by the illness, and theres often a pattern of relapse and remission. Most symptoms are invisible to others, which makes it difficult for friends, family members, and the public to understand the challenges of CFS."


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 and I wonder who the heck did write this.

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 must add, the first time I walked into an ME support group meeting, I almost turned around and left, because there was a look in people's eyes that reminded me of my grandmother in her early stages of dementia. )

Perhaps the paragraph could read something like:

"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, many others 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."


Best to all,
Marylib

I'm so glad you caught this Marylib - you've said everything I was thinking and more.

I wonder if there's an easy way for us to add our names to the revision Koan will do so that it is seen as coming from many patients rather than just one?

 

[MEKoan]

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" very close to the name "Koan"! It is with enormous relief that I also see "many patients rather than just one".

My intent was not to rewrite it as my thinker grinds, smokes and makes strange squealing noises when I try to use it. I had intended only to move things around so that the cardinal symptoms were given prominence. I have not been able to do even this yet.

Please, please carry on without me!

I will catch up as soon as I am able.

Sorry.

So sorry.

Koan

ETA I thought, with some optimism, that I'd just take a look at it right now. I can't even read it!

 

[leelaplay]

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.

me too

And, I see, with some alarm (!!!) the word "revision.....

Sorry.

So sorry.

Koan

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

------------------
DRAFT NOTE

CFIDS Association,

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!

Sincerely,

xxx


DRAFT REVISION
-------------
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:
fatigue
post-exertional fatigue: a worsening of symptoms following physical or mental exertion that can require an extended recovery time.
sleep difficulties
problems with concentration and short-term memory
flu-like symptoms
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
gastrointestinal disturbances
allergies and sensitivities to foods, odors, chemicals, medications, heat and noise
gynecological problems, including PMS
psychological problems: irritability, mood swings, anxiety, panic attacks