• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Money maker. game changer for CFS research, insurance, codex, etc...

markmc20001

Guest
Messages
877
research fund raiser. game changer for CFS research, insurance, codex, etc...

I just had my disability benefits cut off for (for no objective proof), and they LIED about any things in thier notes. I received the cut off notice on christmas eve. Perfect, and of course y cobra has exired so I would have to pay for espensive tests out of pcket to proove anything. I'm under the bus. Of course the insurance company is regulated by some law they helped write which allows them to get away with impunity.

Now after reading a little about Oslers Web, Codex, and how the CDC has interfered with any kind of meanful CFS research for all these years. It is obvious the people's rights/freedoms are being railroaded on a daily basis.

What needs to change, at least here in the US, is to get lobbying and business out of reach from elected officials.

I'm going to propose a money maker, and potential life changer for anybody here who has the energy and mental clarity to get it done.

This is just a concept and I hope somebody grabs it, improves it and runs with it. :sofa:

THe idea would be to create an viral awareness campaign. Started thru the internet, but also made main stream with bumper sitckers, shirts, and hats with a logo that would send a message. The message being, stop fascism, or regain your freedom, get business out of governent, or something to that effect. BUt just a logo with maybe some choice words. BUt the idea would be simple/cool/fun that many people would adapt without shame or embarassment, so that people in the know would understand and put on their cars, shirts, houses, hats, whereever to get the message out. SO a I have XMRV ay be a bit extreme. BUt "freedom rules", or soething like that, would be cool. Have walks, runs, or sofa races for fundraisers. Get money, and control back to the people. SO those like WPI can execute find solutions, and put energy towards research. Instead of wasting effort and time on public relations battles.....

We need to take control of our freedom before it is too late...

Mark
 

markmc20001

Guest
Messages
877
very nice post

Sarah,

Thanks for taking to express the nuts and bolts of what is REALLY required to make change happen government. I never knew that money was considerd free speech. OUCH. no wonder why we are getting steam rolled, business has the dang courts ruling in there favor when it comes to the consitution!

Ok, so Sarah is on the legal/strategy team!

Now we need an artist to create a logo....:tongue:

website manager/ creator anybody?:D

I'll be a grunt/donator fabricator. I can help figure out how to design/physically build the props stickers etc, where to buy etc...

then we need other armchair imput... ideas, donations...

ok out of energy, fun to dream about, but like moving a mountain......well then, back to my station :sofa:
 

Tammie

Senior Member
Messages
793
Location
Woodridge, IL
I just had my disability benefits cut off for (for no objective proof), and they LIED about any things in thier notes. I received the cut off notice on christmas eve. Perfect, and of course y cobra has exired so I would have to pay for espensive tests out of pcket to proove anything. I'm under the bus. Of course the insurance company is regulated by some law they helped write which allows them to get away with impunity.

Now after reading a little about Oslers Web, Codex, and how the CDC has interfered with any kind of meanful CFS research for all these years. It is obvious the people's rights/freedoms are being railroaded on a daily basis.

What needs to change, at least here in the US, is to get lobbying and business out of reach from elected officials.

I'm going to propose a money maker, and potential life changer for anybody here who has the energy and mental clarity to get it done.

This is just a concept and I hope somebody grabs it, improves it and runs with it. :sofa:

THe idea would be to create an viral awareness campaign. Started thru the internet, but also made main stream with bumper sitckers, shirts, and hats with a logo that would send a message. The message being, stop fascism, or regain your freedom, get business out of governent, or something to that effect. BUt just a logo with maybe some choice words. BUt the idea would be simple/cool/fun that many people would adapt without shame or embarassment, so that people in the know would understand and put on their cars, shirts, houses, hats, whereever to get the message out. SO a I have XMRV ay be a bit extreme. BUt "freedom rules", or soething like that, would be cool. Have walks, runs, or sofa races for fundraisers. Get money, and control back to the people. SO those like WPI can execute find solutions, and put energy towards research. Instead of wasting effort and time on public relations battles.....

We need to take control of our freedom before it is too late...

Mark

Mark, I'm so sorry to learn about your loss of benefits, was that disability thru a former job or SSDI? if it was thru the job, what about applying for SSDI? If it was SSDI, are you going to try to appeal? Though SSDI pays me less than enough to live off I would be completely lost w/o it, so I truly feel for you.

Now as to your other idea.....sounds interesting. I don't have much ability to work on it myself, at least not rt now - crashing quite badly.....but when i read about the slogan part, I immediately thought of "Keep America Free".....short, easy to remember, not embarrassing, and gets to the point you are trying to address (our country is in serious danger of losing the very freedoms it was founded on)......anyway, if you like it, you are more than welcome to use it....and if not, that's cool, too
 

CJB

Senior Member
Messages
877
Here is something for you to look into- check out the "clean election laws" in maine and (2 other states, I'm thinking Colorado and someplace else I don't really remember) I've thought about it every which way cause I had to do stuff like this for school and any way you look at it it's the only constitutional and effective way to get monied interests out of politics.

Because money has been ruled consistently to be constitutionally protected free speech by the supreme court (which is another story for another day) the only way to get candidates away from that money legally is to have them sign a pledge that they will take public funding and agree in exchange to not accept any donations. There are effective formulas that determine how much public money they can get. And rules about how it can be spent. If a candidate can raise a certain number of very small donations and signatures early in the race (we're talking like 5-10 dollars here) they are deemed worthy of public financing. It seems to work very well in states it has been implemented in.

No one is forced to be a clean elections candidate, but those who are not clean elections candidates don't often actually win. This is how the constitutional requirement is achieved, they are giving up willingly their right to take donations. Not a palatable option to some people, I'm sure, but far better than having your reps shilling for insurance, big business, etc. etc. As a result, you don't have to be wealthy or have wealthy friends and donors to win an election. Susan Collins, one on Maine's senators, consistently ranks year after year as one of the "poorest" senators. Most of the state reps are paper mill workers and farmers and stuff like that because they are running on issues and not on how much money they raise. Maine also has some very young state reps and senators, some people that I went to college with are state reps now! (one was a continuing education student, but the other is about 24 or 25 probably)

The last governors race there was a 5 way race and all the candidates were viable. (There was also another candidate, a reformed member of a motorcycle gang who legally changed his name to Thu Peoples Hero but that is also another story)

Every year reps from Maine submit national legislation to this effect, but it is never supported and it never goes anywhere. There is no groundswell of support for things like this.

Political reform is tough for most people and voters to get excited about because at the heart of it it involves abstract and seemingly boring issues like campaign finance reform, open primaries, and getting rid of legislation that stifles third party participation and keeps us locked in a disingenuous two party system with no real choice. The people in power to some degree have a vested interest in keeping things how they are. Until the public cares about abstract regulations like this and gets over the idea that spending taxpayer money is always consistently bad, we are stuck with a very flawed system. If we spend the taxpayer money on things like this we will save much more by not paying out on useless pet projects and corporate welfare. Until the framework is changed we can all keep wringing our hands about monied interests and a two party system that may as well be one big party.


ok that is my political rant for the day. It really is relevant to all of us though as we struggle to deal with insurance companies and government agencies. really really relevant.

Yes-- very well said. The idea of corporate "personhood" is insane and is killing the middle class. There are serious efforts in Congress to change this. Do you know Thom Hartmann from Air America? He has written a lot about this. It's the kind of fundamental change that's going to be very difficult to accomplish.
 

CJB

Senior Member
Messages
877
I just had my disability benefits cut off for (for no objective proof), and they LIED about any things in thier notes. I received the cut off notice on christmas eve. Perfect, and of course y cobra has exired so I would have to pay for espensive tests out of pcket to proove anything. I'm under the bus. Of course the insurance company is regulated by some law they helped write which allows them to get away with impunity.

Now after reading a little about Oslers Web, Codex, and how the CDC has interfered with any kind of meanful CFS research for all these years. It is obvious the people's rights/freedoms are being railroaded on a daily basis.

What needs to change, at least here in the US, is to get lobbying and business out of reach from elected officials.

I'm going to propose a money maker, and potential life changer for anybody here who has the energy and mental clarity to get it done.

This is just a concept and I hope somebody grabs it, improves it and runs with it. :sofa:

THe idea would be to create an viral awareness campaign. Started thru the internet, but also made main stream with bumper sitckers, shirts, and hats with a logo that would send a message. The message being, stop fascism, or regain your freedom, get business out of governent, or something to that effect. BUt just a logo with maybe some choice words. BUt the idea would be simple/cool/fun that many people would adapt without shame or embarassment, so that people in the know would understand and put on their cars, shirts, houses, hats, whereever to get the message out. SO a I have XMRV ay be a bit extreme. BUt "freedom rules", or soething like that, would be cool. Have walks, runs, or sofa races for fundraisers. Get money, and control back to the people. SO those like WPI can execute find solutions, and put energy towards research. Instead of wasting effort and time on public relations battles.....

We need to take control of our freedom before it is too late...

Mark

I'm so sorry you've lost your benefits. I paid for disability insurance my whole working life, and because I got sick with something that wasn't easily and clearly defined, they got away with paying me a small settlement. I don't know what the answer is, but we just can't allow people to fall under the bus when they're sick.

Hang in there.

:hug:
 

markmc20001

Guest
Messages
877
Mark, I'm so sorry to learn about your loss of benefits, was that disability thru a former job or SSDI? if it was thru the job, what about applying for SSDI? If it was SSDI, are you going to try to appeal? Though SSDI pays me less than enough to live off I would be completely lost w/o it, so I truly feel for you.

Now as to your other idea.....sounds interesting. I don't have much ability to work on it myself, at least not rt now - crashing quite badly.....but when i read about the slogan part, I immediately thought of "Keep America Free".....short, easy to remember, not embarrassing, and gets to the point you are trying to address (our country is in serious danger of losing the very freedoms it was founded on)......anyway, if you like it, you are more than welcome to use it....and if not, that's cool, too

I guess this logo message idea goes along with the brochure idea. so it is kind of a duplicate thread. But it is all good for brainstorming and something good may come of it someday!

Hey Tammie, CJ (love that big hug smiley)

, I do have SSDI, and have food. Other people here are much worse off than I am. It's just brutle. I shouldn't complain, just my dogs are tired of hearing it.

I am really so blindsided by the fact that the whole disability insurance thing is a scam set up for attorneys and business; How contracts mean nothing. How corrupt government is with the CDC/CFSAC dog and pony show. How the business lobby writes our laws....How business is messing with our food supply, and now how business is taking away our access to vitamins? credit derivatives..., etc,etc

I would guess most of the population knows things are "wrong". BUt it would be good if the average guy was reminded (from a clear/concise slogan) what needs to happen. Get right to the crux of the mess, and change it maybe....

SO yeah, I like "KEEPING AMERICA FREE" with a little education campaign to explain what everybody is loosing that they may not realize.

Or Maybe something kicks congress right in the balls :

"STOP LETTING CEO"S WRITE YOUR LAWS"

"NO MORE LOBBYISTS ELECTED TO SENATE"

"HAVE GOVERNMENT SERVE THE PEOPLE, NOT BANK OF AMERICA"

sarahg? "PUBLIC FUNDING FOR ELECTIONS"

Ya, bummer we are all so tired. But good to think about, and brainstorm on. aybe somebody will run with it. I think a person could make a fortune doing tee-shirts ike that....Al takes a little energy. Maybe I need to post this in the MANIC, and not the CFS forum?
 

Tammie

Senior Member
Messages
793
Location
Woodridge, IL
Mark, I am so glad to know that you do have SSDI and food....and don't worry about complaining - I think we all understand and venting can be a good use of the forums at times, too ; )

I actually like all the slogans that you listed....probably the lobbyists one the most....I wish I had the energy to help out with this - I think it's a great idea (the info itself may not be new to people, but so many are so compacent about it and we cannot a fford to be)
 

markmc20001

Guest
Messages
877
Here is a one liner...

"HAVE CONGRESS SERVE PEOPLE. NOT LOBBYISTS" ....persuade congress to have publicly funded elections.

It is only when we stop business from writing our laws will we have the interests of the people in mind......:worried:

:thumbsup: