Getting Madder by the Minute

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Neco
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Re: Getting Madder by the Minute

Post by Neco »

ViewsAskew wrote:What are you thinking, Zach?


Honestly, I wouldn't know where to start. I'm not a communications expert or anything.

Was kind of just tossing out an idea :oops:

Some kind of grassroots activism I guess? letter-writing campaigns, speaking to anyone who will listen. Largely something more independent/autonomous than a specific organization or similar entity, with no clear "corporate" agenda.

ViewsAskew
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Re: Getting Madder by the Minute

Post by ViewsAskew »

I'm no communications expert; I do often tackle projects at work that are similar to this and it always starts by identifying the end result and working backward to figure out how to get there.

1. What do we want to happen? We have to have a clear goal. For example, any doctor who treats a WED patient does so by following our standard protocol*. That's a BIG goal! But it can be broken down into smaller goals that happen along the way. The first one might be: 10 healthcare providers agree to treat all WED patients with our standard protocol.

2. How do we get there? We have to break it down into steps. How do we get ten doctors to treat WED patients using our protocol? *Well, first we have to have a protocol! That's not too hard because things exist that can be used for a protocol. We have to figure out what doctors to target, what materials to use, how to reach them,. The hardest part might be figuring out who we are - do we approach the Foundation and work with them? Do we form our own group?

3. Assign responsibilities

4. Do the work.

We might decide that our first goal is simply to provide educational materials to X number of doctors.

We probably do not want a goal to be something like, "Make people aware." That is really hard to measure. What does that mean? Things like, "Healthcare providers will recognize WED and its various presentations," is possible, but which healthcare workers? All? Nurses? Neurologists? And, how many - everyone in the world?

Earlier, someone mentioned respect and someone mentioned listening. Those may be hard to attain directly. We can attain that doctors recognize the variability of WED in individuals and treat them accordingly. Or that doctors recognize that WED patients have better outcomes when the patients participate in the treatment plan process (if that is true - we'd need a study to back us up!).

So, first things first, what are we trying to accomplish?
Ann - Take what you need, leave the rest

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jakesmom
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Re: Getting Madder by the Minute

Post by jakesmom »

Possible list of goals.

1. Get physicians to understand the same treatment or drug doesn't work for everyone.

How to obtain this.

A. Perhaps do our own "clinical study" by grouping together people who have tried the same meds or med combos and comparing results. This can include both success and horror stories. Side effects, benefits, etc.

2. Help physicians be more compassionate and willing to listen.

How to obtain this.

A. Somehow get them to understand this disease from beginning to end and how medications affect its progression or progress. WED patients run the gamut from healthy people who just have a little twinge, to people who have taken medications that made them gain massive amounts of weight causing a whole new set of problem, to people who have mental disabilities caused by the meds, to ultimately people whose constant pain is the cause of their disability.

B. If we can get them to understand this is a major, disabling disease and past thinking we are just a group of whiners with "restless legs" , that would be half the battle.

C. Help them understand this disease is not just about restless legs, it's also about sleep deprivation and the MAJOR effects that has on the mind and body.

ViewsAskew
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Re: Getting Madder by the Minute

Post by ViewsAskew »

My guess is that when doctors could demonstrate complete knowledge of the disease, all of these things would occur. It's from a limited understanding of the disease that they ignore things we say. It's from limited knowledge that they don't listen because they don't know what to do. It's from limited knowledge that they can't see the bigger picture of how it affects us.
Ann - Take what you need, leave the rest

Managing Your RLS

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cornelia

Re: Getting Madder by the Minute

Post by cornelia »

I agree: education is the best approach. I guess that is one of the missions of the RLS Foundation already.

Corrie

ViewsAskew
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Re: Getting Madder by the Minute

Post by ViewsAskew »

cornelia wrote:I agree: education is the best approach. I guess that is one of the missions of the RLS Foundation already.

Corrie


As you said, Corrie, it's already the mission of the Foundation. So, what are we going to do differently? Doctors are very busy. And, they'd need to have a reason to care. What incentive do they have to add more to their busy schedules? Is patient education better? If more patients ask, will that make them realize they need to? I think our big issue is simply numbers. IN 2010, there were 208,807 practicing primary care physicians in the US. There are approximately 13,500 neurologists in the US. If we write letters, how many will get read? We have to do something more. Is the key educating new doctors instead? I honestly don't know!

Here is an excerpt from a psychiatrist's blog, circa 2011:

So who might use Horizant? Well, GSK and Xenoport probably hope that anyone who currently uses Neurontin (and there are a lot of them) is a potential patient. Officially, though, Horizant was approved only for the treatment of restless legs syndrome (RLS).

Now, RLS is one of those "diseases that may not be diseases"—or "diseases that you didn't know you had." (See the articles here and here for accusations of "disease mongering" by GSK [Hey! GSK! Coincidence? I
don't think so!] when it introduced Requip, the first "treatment" for RLS.) In particular, whenever you see a headline like "Disease X may affect 7-10% of the population" when, in fact, no one had even heard of Disease X ten years ago, you have to be somewhat suspect.

Nevertheless, like much else in psychiatry, there may be some reality to RLS; it may in fact be a true pathophysiological entity that responds to medication, and some people report an excellent response to
treatment. (Whether it afflicts 10% of the population is another story.) Current treatment strategies involve dopamine replacement, in the form of Requip (ropinirole) or Mirapex (pramipexole) so maybe dopamine insufficiency is part of the process.


Believe me, many in the WED community blasted this guy when he wrote it! But, what boggles me is that he wrote that is wasn't hear of ten years ago, that is "may" be a true disorder, and infers that it can't afflict 10% of the population. He actually did enough research about it to find the disease mongering hoopla, but didn't bother to see that it's been being researched, albeit not a lot, for 30 years?

Maybe we create a "Little Known and Unbelievable Facts about WED" audio or video. Fun, catchy, real. We could title it, "Everything You Know Is Wrong" with a subtitle of At Least About RLS/WED. For example, these videos grab your attention, are fun, and include a lot of info: http://news.yahoo.com/video/whoknew-sci ... 00026.html. Or maybe we could contact Who Knew and ask them to do a video!

A viral video? Have something become an internet meme?
Ann - Take what you need, leave the rest

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ViewsAskew
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Re: Getting Madder by the Minute

Post by ViewsAskew »

So, I'm reading an article about eyelids and apraxia (don't ask why, lol), and the doctor writing it says:

In 1981, the beloved founder of BEBFR Society, Maddie Lou Koster decided that she would bring the disease out into the open and make the diagnosis and its signs and symptoms as familiar to the medical community as the common cold. All neurologists, ophthalmologists, and neurosurgeons would certainly concur that she was immensely successful.


Apparently, in 1981, no one knew of this disorder. Apparently, many doctors do now!

My first thought was, can we hire this woman????? Seriously, what did she do? I also realized that she didn't have to reach hundreds of thousands of GPs, too, but this is still remarkable.

So, is that our goal? The mission of the WED Foundation is to: increase awareness, improve treatments, and through research, find a cure.

Are we, then, talking about forming a sister organization who's only mission is to make the diagnosis and treatment WED as common to the medical community as is the common cold? When we say medical community, so we mean every doctor who treats sleep disorders, any primary care doctor, and any doctor who treats movement disorders?
Ann - Take what you need, leave the rest

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badnights
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Re: Getting Madder by the Minute

Post by badnights »

I think the WED Foundation already exists to do what we want done, it just doesn't have the resources or the steam. We have some steam to contribute. If we do it as part of the existing foundation, we can take advantage of their existing credibility and some of their resources... the website, maybe other things.

Our goals should be along the lines of what you proposed earlier, with a lofty goal of ALL (hahah) healthcare practitioners being aware enough of WED to refer a patient properly, and all (haha) neurologists and sleep specialists and X % of GPs having a deeper knowledge of the disease. We would define deeper knowledge as having four components: diagnosis and treatment, which are the biggest parts, and also an understanding of causes and an understanding of consequences in the life of the patient:

Diagnosis - the physician will be able to diagnose WED and eliminate mimics
Treatment - the physician will be able and willing to treat according to a specific protocol (which can't be too rigid)
Understanding of causes - the physician will be aware of low CNS iron, low endogenous opioids, the effect of dopamine drugs (beneficial and awful i.e. augmentation), and whatever else is deemed key by existing specialists
Understanding of consequences - how chronic lack of sleep, medication side-effects, and the presence of symptoms affects the mental and physical health of a patient.

So let's use your idea, we have the overarching goal of all healthcare providers being aware and all specialists knowledgeable, but we start with an initial goal of 10 specialists being knowledgeable - and perhaps, concurrently, raising public awareness (see below). So the decisions that are required next (after writing the goals and determining measures of success), are:

  • how to choose the target specialists? -perhaps from 10 different geographic regions?
  • how to engage the target specialists - how do we interest them enough to want to participate? this involves development of material.
  • how to provide the actual training - what combination of videos, written materials, and other? how do we deliver it? This will require getting the help of existing specialists.
Each of these things can be addressed separately, by different people even.

The goal of making all healthcare professionals sufficiently aware of WED that they can refer a patient appropriately, would require very different material. I see your "who knew it" videos there. I think there has to be a broad target of the "public in general" included in this endeavor somewhere, that would encompass healthcare providers and also the people they come into contact with in their casual lives. Not sure how to measure the success or narrow the goal down from "all".

I know from the way my life is right now (and from this late, sloppy reply) that I am not capable of spearheading this. The "spearheading" would involve keeping everyone else on track, keeping the vision in mind.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
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ViewsAskew
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Re: Getting Madder by the Minute

Post by ViewsAskew »

Everything is built one-something at a time, right? :-).

Resources are a critical issue here. Of our mental capacity and our finances! Whatever we do, it has to be in a way that we can accomplish it. I think we can overcome that.

The toughest part of Beth's plan is getting any doctor to participate. Materials either already exist - Foundation has many - or can be created (I've done a lot of that over the years). It doesn't mean they will get continuing ed credits, though.

But, why would they want to participate? What's in it for them?
Ann - Take what you need, leave the rest

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EeFall
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Re: Getting Madder by the Minute

Post by EeFall »

Be careful what you wish for. Not many are going to view this disease, the severe side of it, as anything more than a few nuts who are rattling the can.

badnights
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Re: Getting Madder by the Minute

Post by badnights »

you're unneccessarily negative eefall, because we know of doctors who take it very seriously. You just need to meet and work with one or more, to restore your faith.


Views, as to what a doctor would get out of it, here is a partial list of inducments, some of which we may be able to tap into. Some may be more inducing than others:
  • entertainment
  • the possibility to help a large number of patients, stemming from a genuine desire to help people
  • CE credits
  • ??
  • the feeling of engagement or bonding with a patient community? is that attractive? probably not.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

Polar Bear
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Re: Getting Madder by the Minute

Post by Polar Bear »

I don't have the knowledge or education to know how to handle this. But I'm a good foot soldier :)

To get the subject presented initially to a wide base - what about the professional magazines for doctors... the US equivalent of the UK British Medical Journal. Publications sent to doctors by their registration bodies. This is perhaps ambitious...... but an article prepared by the Foundation detailing the misery caused by this disease, showing the human side of lives destroyed and raising interest in the suffering rather than only about the technical and chemical side of treatment. Of course good treatment is our aim but I'm thinking of giving any project a real life image.

If such an article was possible...... perhaps with an encouraging footnote from Dr B then it could be followed with a push on local radio/local press.

Wasn't there mention at a time of some well-known faces who were sufferers - just a mention about them.... or by them.

Anything at all to get the condition mentioned. Articles in little local newspapers about the suffering caused by what many think is an imaginary or insignificant condition.

Ok... perhaps an article in a medical journal is too ambitious, but just tossing it into the pot.
I wonder if putting 'a face' a real person's suffering to the fore......would encourage folks to spend a moment longer to consider the information and the impacted result of the symptoms.
Betty
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badnights
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Re: Getting Madder by the Minute

Post by badnights »

Ohhhh! I like that idea. That falls under Main Goal 2 (making all professionals sufficiently aware to refer a patient). It's a good idea. Anything that makes it interesting , human, and something they can do something about.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

badnights
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Re: Getting Madder by the Minute

Post by badnights »

I'll ask my specialist, if I have time when I see him, if he has any ideas about what the average Joe Physician would find attractive.
Beth - Wishing you a restful sleep tonight
Click for info on WED/RLS AUGMENTATION & IRON
I am a volunteer moderator. My posts are not medical advice. My posts do not reflect RLS Foundation opinion.

ViewsAskew
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Re: Getting Madder by the Minute

Post by ViewsAskew »

Polar Bear wrote:I don't have the knowledge or education to know how to handle this. But I'm a good foot soldier :)

Ok... perhaps an article in a medical journal is too ambitious, but just tossing it into the pot.
I wonder if putting 'a face' a real person's suffering to the fore......would encourage folks to spend a moment longer to consider the information and the impacted result of the symptoms.


In today's video age, if we could do a short, well done video - 3 or 4 minutes in the life of someone who can't sleep, can't find a doctor, can't get the drugs they need....it could be impactful.
Ann - Take what you need, leave the rest

Managing Your RLS

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