Website about koroshetz, need help

[frozenborderline]

Hi all
I'm working on a website about Walter koroshetz, Sort of continued off the #notenough4ME campaign from a couple years back that focused on koroshetz failure to do the right thing for ME/CFS funding at the NIH

I need help with web design and even writing copy

I already have the domain names. But I need a lot of help making this work

For those who want to do activism but aren't into in person protests or are too sick to, this would be perfect project

I'm trying to recall relevant people to tag. so don't get offended if I left you out, I have brain fog
@Rebeccare @max_yazhbin
@Ben H @JenB @jeff_w @Hip

Also if you work at me action and want to help but think its too controversial to have your name on, you're welcome to contribute anonymously

 

[frozenborderline]

@Janet Dafoe

 

[frozenborderline]

Ahh, @ChloeC , you are the person I most wanted to contact.

I will add others of course that may be interested. @sb4 , @Jackb23

 

[frozenborderline]

@Whit

 

[max_yazhbin]

Hi all
I'm working on a website about Walter koroshetz, Sort of continued off the #notenough4ME campaign from a couple years back that focused on koroshetz failure to do the right thing for ME/CFS funding at the NIH

I need help with web design and even writing copy

I already have the domain names. But I need a lot of help making this work

For those who want to do activism but aren't into in person protests or are too sick to, this would be perfect project

I'm trying to recall relevant people to tag. so don't get offended if I left you out, I have brain fog
@Rebeccare @max_yazhbin
@Ben H @JenB @jeff_w @Hip

Also if you work at me action and want to help but think its too controversial to have your name on, you're welcome to contribute anonymously

I do have a software engineering background but am not devoting resources to such political activities. I will not be trying to shame or go hat in hand to a government bureacrat because they don't need to listen to us. If you have a plan to help those who are sick directly or do fundraising for those that do research or something like that, I can help out.

I have my own group I am setting up which directly helps ME/CFS patients (ignoredillnesses.com) and have about 6 ME/CFS patients who already signed up and two people, a chemist and an ethnobotonist, who are willing to talk to such people. I am busy planning my next set of experiments, of which phoenix rising was very helpful, and preparing for a liver biopsy at the end of this week. If your interested in what I am building, you should be able to find my email by looking up my name. There is only one Max Yazhbin.

Here is my response to someone who made a similar suggestion: The yearly budget from the NIH for ME/CFS is $40 million, 15 mil goes to cancer because people with cancer are fatigued, 15 mil goes to alcohol addiction because alcohol addicts are fatigued, 5 mil goes elsewhere, 5 mil actually goes to ME/CFS. It is easy to say funding would be helpful, that is obvious, I don't think you realize there are much better ways than going to the government hat in hand when the people afflicted with this disease aren't dying of something that is gruesome or can be easily identified like with the HIV/AIDS people, whatsmore it is largely not recognized by doctors and misdiagnosed as mental illness. I will not be applying for NIH or even OMF funding, they won't fund what I am trying to build.

 

[Hip]

I will not be trying to shame or go hat in hand to a government bureacrat because they don't need to listen to us.

That stance goes against the style of much ME/CFS activism which has taken place over the last 10 years or so — activism which has made a lot of progress in getting ME/CFS recognized as real neurological disease (rather than an "all in the mind" psychogenic condition) as a result of targeting and criticizing certain researchers.

Disability insurance companies are always trying to cast ME/CFS as psychogenic, because then they do not have pay expensive lifetime disability payments to ME/CFS patients.

These disability insurance companies exert their influence by buying researchers, who then help to promote the "all in the mind" view of ME/CFS. For example, many of the Wessely School do paid consultancy work for these insurance companies.

So when a key person in government is not aware of the seriousness of ME/CFS, and not aware of the fact that out of all the diseases, ME/CFS is one of the very worse in terms of quality of life, you have to wonder whether that lack of awareness is due to being duped by insurance companies into believing the "all in the mind" view, which then tends to result in trivializing ME/CFS and ignoring it.

The yearly budget from the NIH for ME/CFS is $40 million, 15 mil goes to cancer because people with cancer are fatigued, 15 mil goes to alcohol addiction because alcohol addicts are fatigued, 5 mil goes elsewhere, 5 mil actually goes to ME/CFS.

Would have a reference for those figures handy by any chance? I had no idea that the NIH were still giving ME/CFS funding to cancer patients, which they have had a long history of doing, because they have historically believed that funding ME/CFS research is a waste of money.

 

[Hip]

I already have the domain names. But I need a lot of help making this work

If you find a web host which offers an online webpage editor (many do), that will make it easier, as you will not need to get into html in order to create web pages.

 

[max_yazhbin]

That stance goes against the style of much ME/CFS activism which has taken place over the last 10 years or so — activism which has made a lot of progress in getting ME/CFS recognized as real neurological disease (rather than an "all in the mind" psychogenic condition) as a result of targeting and criticizing certain researchers.

Disability insurance companies are always trying to cast ME/CFS as psychogenic, because then they do not have pay expensive lifetime disability payments to ME/CFS patients.

These disability insurance companies exert their influence by buying researchers, who then help to promote the "all in the mind" view of ME/CFS. For example, many of the Wessely School do paid consultancy work for these insurance companies.

So when a key person in government is not aware of the seriousness of ME/CFS, and not aware of the fact that out of all the diseases, ME/CFS is one of the very worse in terms of quality of life, you have to wonder whether that lack of awareness is due to being duped by insurance companies into believing the "all in the mind" view, which then tends to result in trivializing ME/CFS and ignoring it.


Would have a reference for those figures handy by any chance? I had no idea that the NIH were still giving ME/CFS funding to cancer patients, which they have had a long history of doing, because they have historically believed that funding ME/CFS research is a waste of money.


We'll have to agree to disagree on much but as for the funding stuff, I heard Byron Hyde mention it, his talks were amazing: https://me-pedia.org/wiki/Byron_Hyde

Also, there are plenty of drag and drop options: squarespace, go daddy, etc

 

[frozenborderline]

If you find a web host which offers an online webpage editor (many do), that will make it easier, as you will not need to get into html in order to create web pages.

I do have bluehost/WordPress but I still am at a nadir in my health and so working on even simple things Is hard.

Part of it is needing more accessible hardware , like a stand for my tablet or prism glasses , some sort of setup that would allow me to work without craning my neck
Maybe like what people use to clamp and hold phone in place in car but for a tablet and a bedhead or something. .. idk if this exists.

 

[frozenborderline]

I agree with your now deleted post, hip, that pressuring the NIH has gotten the goods a lot in the past and that the libertarian idea of taxation being theft is kind of naive. But I don't know where that discussion went


It all goes back to stuff like Henry george and the fact that there used to be such thing as a "commons" and somehow, through primitive accumulation (aka slaughter and theft) all of the commons became privately owned. That is the original sin or theft that private land and house ownership is built on , that is prior to taxation. I don't love the IRS , and our tax system is overly Byzantine , unlike other countries where taxes are filed for you and you simply have to check whether they have filed correctly or no, but this doesn't mean all taxation is bad.

Anyway, out of all of the things our government spends money on, the NIH has got to be one of the least objectionavle , so regardless of utopian political ambitions and arguments along those lines I hope we can agree that if the money is already there it's not theft to spend a tiny sliver of it on me/cfs research instead of wars etc

 

[Alvin2]

Tablet stand
https://www.ikea.com/us/en/p/isberget-tablet-stand-white-20302596/

https://www.ikea.com/us/en/p/bergenes-holder-for-mobile-phone-tablet-bamboo-10457999/