The Shocking Truth

[justinreilly]

And Invest in ME site too might be helpful too. They are our very best - organisers of London Conferences for at least ten years. And only bring the best - all your researchers (except of course Kenny Meileir).

Thanks. I started an "edit" on my first post- a list of sources.

 

[Marty]

From Justin
we need actions that hold political consequences, do you have additional ideas?

I wish I did, but I, too, have just decided to turn 180 degrees from the paper (and e-paper) creation route. I'm a scientist, and non-rational, activist approaches are not my strength - yet. But I can certainly see that we need to drastically change our thinking into activism that makes it personally uncomfortable for CDC to continue to bash us. I hope all the time and effort and discussion about paper can be converted into new tactics that make it to CDC's benefit to reverse their policy. I never thought it would be my goal to attain the status of "sit down, you're causing a scene!" But here I am. I see no other choice.

If a few eggs get broken, so be it, we NEED to get this omelet cooked!

Yessss! As a stickler for the facts, I have decided to support some efforts that aren't quite scientifically correct but do the job. Like, XMRV could go bust tomorrow, but I'll use it today, even if that isn't the correct scientific thing to do. I appreciate any efforts of any group that might be effective in causing a policy reversal at CDC. I don't see how contributing to congressional members could possibly be effective because we couldn't begin to match the big pockets, so I wouldn't support that. Besides, politics is voters; we already have their ear by virtue of our vote. Not so with the CDC; they aren't elected.

If there already exists documents like this, let me know. The less work the better.

Yes, the document does already exist! Or it will. It's called the CDC website. That's what we should be targeting. They are the ultimate authority, not patients or frantic parents of patients. We have a world-recognized system that relies on peer review by the smartest people involved, not on special interest groups. We have got to create the conditions by which the CDC will do their job. Look at the HIV site that someone referenced; the government can do it, but the patients had to make it happen. When CDC put a Reeveite in to carry on Reeves' bias, they made their position crystal clear. Crystal clear. Believe them. And ACT UP. (I don't know if the old group exists, but we can be the new group.)

 

[justinreilly]

Yessss! As a stickler for the facts, I have decided to support some efforts that aren't quite scientifically correct but do the job. Like, XMRV could go bust tomorrow, but I'll use it today, even if that isn't the correct scientific thing to do.

I don't think you necessarily have to go against the 'scientifically correct' thing to do. You can call out the bad science in XMRV while pointing out that we don't know if it causes ME, but it is unlikely to be anything but a retrovirus, cardiovirus or something closely related and so we have to proceed with our best bet without interference from anti-science charlatans. And use it draw attention to the fact that we need science on defreitas rv, cardioviruses etc. but NIH gives us no money for biomed research.

I don't see how contributing to congressional members could possibly be effective because we couldn't begin to match the big pockets, so I wouldn't support that. Besides, politics is voters; we already have their ear by virtue of our vote. Not so with the CDC; they aren't elected.

I don't know enough to really comment on this definitively. I was hoping people with lobbying knowledge would come out of the woodwork. Maybe over time. Roy I know is busy right now. But we have had some mild intervention in the past with no money. maybe with some money this would sweeten the pot. i do think some politicians want to do the right thing some of the time. Politics is voters and the surest way to get voters is with money so money counts. I do need to get expert input on this though.

Yes, the document does already exist! Or it will. It's called the CDC website. That's what we should be targeting. They are the ultimate authority, not patients or frantic parents of patients. We have a world-recognized system that relies on peer review by the smartest people involved, not on special interest groups. We have got to create the conditions by which the CDC will do their job. Look at the HIV site that someone referenced; the government can do it, but the patients had to make it happen. When CDC put a Reeveite in to carry on Reeves' bias, they made their position crystal clear. Crystal clear. Believe them. And ACT UP. (I don't know if the old group exists, but we can be the new group.)

I meant does a doc exist that is already accurate, concise etc. that certainly isn't the cdc website. I do think they made it clear where they stand with Unger. We have to make CDC and NIH do their jobs. it does all flow from this. funding wpi on our own is unsustainable unless they show xmrv causes ME in the near future which i would guess could happen but is unlikely.

 

[cigana]

Hi,

I like these ideas. In relation to getting the public to undersand what the problems are in a succinct way I prefer to use a FAQ. I've already started one here:

http://forums.aboutmecfs.org/showwiki.php?title=FAQ+on+CFS+ME+for+the+public&redirect=no

and I will be expanding it, but trying to keep it simple. At least it is the type of thing that can be linked to when we reply to newspaper articles etc.



With regard to the campaigning I really agree that we need to start acting differently. One idea I had was to hound individuals. There are probably too few of us connected at the moment to do effective street demos. But if a small number of us can target one powerful individual and hassle the hell out of them, that could be very effective. I think the best way to do this would be to follow that individual home from their place of work. Then campaign on their home doorstep. I realise there will be legal problems, but there must also be ways around these. I'm sure the law allows for some protesting. All we'd have to do is inform the individual in question what our demands are and that we would stop if those demands were met.

For example, in the UK we could target the head on the MRC and demand that he removes psychiatrists from the CFS board. If this guy is hassled every day he might just think why the hell not!

Mark

 

[SilverbladeTE]

A Picture Is Worth A Thousand Words
this video is vastly better at expressing the sick perverse mysogentistic crap and the medieval methods used against us!

[video=youtube;OJmis85FM4s]http://www.youtube.com/watch?v=OJmis85FM4s&feature=player_embedded[/video]

oh or try this elequent piece of text
http://www.ahummingbirdsguide.com/wmarwilltstrsaep.htm

 

[justinreilly]

Thanks, SilverbladeTE. Forgot about that excellent video. Put your suggestions in the source list.

 

[markmc20001]

Justin Marty and the rest.

Given the state of the world economy, politics now seems to be all about what can be taken away from the public. Officials are completely consumed with trying to cut budgets and cut benefits. It's about how many people can they get away with laying off while keeping schools open and police and fire fighters on the job.

So CFS'ers asking congress for help now will be a really tough road to plow considering what is going on with governments cutting state budgets and such.

this is a joke, but what about campaigning to cut the CDC's and FDA budget completely? Wouldn't that be an attention getter.

One of the best weapons I think we have is information, the web, and social media. Especially since many of us never leave the house. Facebook, twitter and the internet is why Egypt is being dismantled. My girlfriend just got back from Russia. She said they are waking up now to all the realities in their political system. It is information doing it. Maybe educating one person at a time is what it will take? Just a thought. The shocking trith would be a big help. The truth could also get the WPI much more funds, once people find out the CDC is useless, if not a complete antagonist against our cause.

 

[Marty]

Please excuse the repetition, but 20 years of advocacy makes it very clear that this is not an information campaign. It is a war against political will. We must completely change our thinking and our tactics and start attacking. We should be marching against Gill at the NIH meeting at 4 PM today.

I think this is a great time to approach Congress; it would be millions of dollars cheaper to treat us and get us back to work and out of the health care system. We have an incredibly strong financial case to use!

The web is only useful if we create ACTION. We are spending hours and hours talking among ourselves with lots of great ideas but no one healthy enough to carry them out. I wish someone could get Larry Kramer to lead us.

 

[markmc20001]

Please excuse the repetition, but 20 years of advocacy makes it very clear that this is not an information campaign. It is a war against political will. We must completely change our thinking and our tactics and start attacking. We should be marching against Gill at the NIH meeting at 4 PM today.

I think this is a great time to approach Congress; it would be millions of dollars cheaper to treat us and get us back to work and out of the health care system. We have an incredibly strong financial case to use!

The web is only useful if we create ACTION. We are spending hours and hours talking among ourselves with lots of great ideas but no one healthy enough to carry them out. I wish someone could get Larry Kramer to lead us.

Agreed. We need action, Jackson!

Protests are good.

Raising money is good.

informing people can be good. Let me qualify how I want to inform. Waking up those, who aren't aware, the CDC is conspiring with the UK, drug companies, insurance companies, and news media to keep people sick. We have an epidemic, and nobody wants to fess up. People need to understand governments are not working in there best interest as hard as it is to understand. I bet the Egyptians would get it, but here in the UNited states everybody hasn't woken up yet completely.

I've personally have chosen to donate money, and try and raise money.

My personal action has been to contact Lance Armstrong, Jesse Ventura, Mark Zuckerburg, Robert F Kennedy Jr, Joanie Greggans of KGp Radio, Jenny Mccarthy, and few more I can't think of right now. I have also donated $150 to the WPI.

I think Bill gates is into population control, and have left him out of my campaign. Watch his interview with Charlie Rose, and listen to him talk about how infection reduces IQ, and how it is better for africa to have vaccinations becuase they have fewer kids. Fewer kids is better because they don;t have enough jobs and food for everybody.

Everybody needs to do what he or she can to do to move the ball foward. I can't travel to protest. So unless it is within a couple of hours, I am stuck on my couch. But I can donate, and contact influential and rich people, and can write letters and crazy sounding posts on the internet to try and wake up others to the tricks and tactics governments are up to to keep people sick as stupid as I look doing it.

Heck my crazy letters might even work a little! Dr Bell finally came out and admitted in writing that he had been waiting 25 years for the science to work itself out, but it never did. He took action and spoke up and asked for donations to the WPI.

 

[Marty]

My personal action has been to contact Lance Armstrong, Jesse Ventura [etc.]

Glad to hear someone is picking this up. Don't presume anything; include Bill Gates and anyone you can think of. Format different letters. Make them short. Keep trying. Hope many more do so, also.

Imagine what the effect would be if we could refer them to the CDC? As long as CDC is contradicting us, it is a hard sell, so I hope we can think of many ways to attack CDC to cause a reversal of their policy. I think this is strategy #1.

I'm with Bell.

 

[medfeb]

The attached link is to a great blog by Chris Maupin

http://www.cfidsreport.com/Articles/advocacyruts/politicaladvocacy.htm

His point is that you can't win the political war if you dont win the public one - I'd think that part of the war will need to be an information or education campaign to get the public at large to care, to change their perceptions, to get them to see it as something that could affect them.

A year ago, before my son got sick, I knew nothing about this disease and to be honest, might have been as dismissive as people have been toward my son. But now that I understand, now that I see videos like SilverbladeTE posted and when I read a book like Osler's Web, I am outraged that this has been going on for so long and nothing has been done - worse than nothing because not only is there no treatment but patients are made to question whether they are crazy.

So if we want to win the political war, what needs to be done in parallel to win the public hearts and minds? Especially in this time of reduced budgets. Simple messages that people can absorb in the middle of busy lives? stories that help them connect in some way? simple educational material? a known person getting the message out? I've never done anything like this before so I dont know the hows but instinctively, I think Chris is right.

 

[markmc20001]

I hope we can put together this shocking truth book of references. I will certainly use it to my advantage by mailing the heck out of it and trying to raise money. Maybe just start a new thread dedicated to it, and we can work on it over time. I think it would be powerful tool.

If anybody else steps up and puts something in motion that makes sense and that I can help execute, I will do what I can to chip in.

The shocking truth and raising money from rich people with illness in the family are the two viable ideas in my mind. I'm already emailing rich/influential folks, and rich with sick relatives. It would really help to have quality information to send them they can use to check out the story. I will help with other stuff too, I just need to take some action even if it is not perfect.

 

[usedtobeperkytina]

Well, MCWPA brought the news to the world.

More coming. Offensive instead of defensive. Action instead of reaction. We know how hard it is to demonstrate. But we can speak to the public.

Coming up:
next big biological finding in ME/CFS to be distributed through major press release service (enough donations given)
Public service announcement for May 12
Letters to organizations that represent patients with illnesses that have been linked to XMRV
Physicians Need to Know, where information of recent biological research is mailed to physicians (patients send to five different physicians)
Seed money to local ME/CFS organizations for them to run an ad

Recent press release: http://mcwpa.org/wp-content/uploads/2010/12/XMRV-Leads-to-Chronic-Infection.pdf Feel free to send to your local health reporter.

News reports that resulted from original ad: http://mcwpa.org/in-the-news/mcwpa-in-the-news/

Here is facebook cause page: http://www.causes.com/causes/511536?m=1a240be5&recruiter_id=40533665

 

[txfriend]

Yes, usedtobeperkytina, I agree; offensive.

Well, MCWPA brought the news to the world.

More coming. Offensive instead of defensive. Action instead of reaction. We know how hard it is to demonstrate. But we can speak to the public.

Coming up:
next big biological finding in ME/CFS to be distributed through major press release service (enough donations given)
Public service announcement for May 12
Letters to organizations that represent patients with illnesses that have been linked to XMRV
Physicians Need to Know, where information of recent biological research is mailed to physicians (patients send to five different physicians)
Seed money to local ME/CFS organizations for them to run an ad

Recent press release: http://mcwpa.org/wp-content/uploads/2010/12/XMRV-Leads-to-Chronic-Infection.pdf Feel free to send to your local health reporter.

News reports that resulted from original ad: http://mcwpa.org/in-the-news/mcwpa-in-the-news/

Here is facebook cause page: http://www.causes.com/causes/511536?m=1a240be5&recruiter_id=40533665

These actions did make the government and public take notice that we are invisible no longer. The repercussions and attention continues and will not stop. The Ad inspired even more scientists to jump on the bandwagon, aligned with long-time clinicians and researchers. Unger is going to meet with reps from .orgs from across the country, to begin a dialogue.

If anyone begins this compilation of sources to send to government officials, I say Hillary Johnson's ''WHY'' speech to the IiME conference in May of 2009 is the best place to begin. Sorry, don't have link, but know someone out there does.

When these are sent to government officials, don't just send them: instruct them to begin a Congressional Hearing into these facts. We must get it on record that WE know that "they" have known the facts for all these years, and therefore have committed crimes against humanity. Doesn't anyone notice that it is our closest allies that did this: the UK, Australia, NZ, Japan? So it has been and continues to go to the highest levels of government. WHY? is right.

 

[justinreilly]

Potential Topics

I have added some potential topics for papers in what i consider declining relative importance.

Pls let me know if you are willing to help draft a short paper on one of the topics. Also if anyone knows about this topic or is willing to learn so they can be a source of info, or if anyone knows someone else who is knowledgable on an area, let me know.

Suggestions welcome!


Potential Topics

- General paper on ME situation which covers: Why we need more funding and to what it should go; What is ME?; how we have been persecuted and the lies they have spread, etc.

- ICD-10 CM (time sensitive; could be set in stone as early as 11/2011)

- PEM (and GET & CBT)

- Definitions of ME and "CFS"

- War on ME science and patients

- Info for new patients

- What is ME? (this topic has been covered well by others including CCC, Hummingbird, etc. so I consider it relatively lower priority)

 

[justinreilly]

Wouldn't it be fun to do a journal article titled "PACE study an Absolute Fraud" like BMJ did for the Wakefield study? We could generate our own media circus like BMJ did and get White and Sharpe run out of medicine. A boy can dream... I put this suggestion up with the other potential topics at the head of the thread. Let me know if you're interested in doing this.

 

[Otis]

I have added some potential topics for papers in what i consider declining relative importance.

Pls let me know if you are willing to help draft a short paper on one of the topics. Also if anyone knows about this topic or is willing to learn so they can be a source of info, or if anyone knows someone else who is knowledgable on an area, let me know.

Suggestions welcome!


Potential Topics

- General paper on ME situation which covers: Why we need more funding and to what it should go; What is ME?; how we have been persecuted and the lies they have spread, etc.

- ICD-10 CM (time sensitive; could be set in stone as early as 11/2011)

- PEM (and GET & CBT)

- Definitions of ME and "CFS"

- War on ME science and patients

- Info for new patients

- What is ME? (this topic has been covered well by others including CCC, Hummingbird, etc. so I consider it relatively lower priority)

I think the "Business Case for ME Research" would be a good one. Getting this amazingly gifted bunch of people back to work will help the economy tremendously. The economic losses are staggering - measured in the billions.

 

[heapsreal]

Theres a guy who lives down the road called Bubba, for a small fee he will go and chat to the psychobabblers and show them what its like to have PTSD and at the same time can tell them to drop cfs/me. If we can stop these boof heads will be half the battle. Then if they can 'just' exercise they can get over there ordeal with Bubba, lol.

cheers!!!

 

[muffin]

Thank you for gathering all that info up and putting out there. We do need these resources for emailing off to journalists, doctors, researchers and making very public.

So now, let's use the great resources Justin has provided us and HIT the media targets.
We at the ME/CFS Worldwide Patient Alliance MCWPA.org - NEED help in pushing this type of info out to the public. Use Justin's great work and cite when responding to articles, etc.

Please also remember that somehow we have to hit the UK media since our Brit friends are in serious trouble with the sociopaths limiting real valid info on ME/CFS. USE Justin's stuff - get it into the UK media anyway you can.

Thank you Justin!!! www.mcwpa.org - Using the media to get ME/CFS sick funding for research, clinical trials, and PUBLIC attention.

 

[justinreilly]

I think the "Business Case for ME Research" would be a good one. Getting this amazingly gifted bunch of people back to work will help the economy tremendously. The economic losses are staggering - measured in the billions.

That sounds like a really good one. I put it up.