Lyme Patients vs CDC - should we join?

[K2 for Hope]

There is a Facebook page for "Lyme Patients vs CDC". Here is what they have posted in their about page.

About
Have you been harmed by CDC diagnostic criteria?
To become a Co-plaintiff e-mail a brief statement to CureTheCDC@gmail.com #CureTheCDC

Description
#CureTheCDC is crowd-searching for an Attorney.
We have valid concerns, grievances and evidence.
We want Accountability and Change. NOW!
Please help us CureTheCDC.

As I'm not sure if they are limiting just to Lyme patients, it seems that if we became a part of the "grievance", there would be so many more participants. And I prefer the "CureTheCDC" slogan... as part of the issue in total.

Just an idea to through around.

 

[Dreambirdie]

I like "CureThe CDC" as concept, and as a lawsuit.
But I don't have Lyme, so how can I join? I will have to get more info.

And PS... Hello to you K2. I haven't seen you around for a while. Greetings!

 

[K2 for Hope]

Thanks for your input. I am not sure exactly how to join, but have posted in their FB page that I believe that there are other organizations that would like to be included in the legal suit (if they can find a lawyer that will take it.)

I truly believe that the CDC needs a "wake-up" call. They are not fulfilling their mission for any of us with NEID illnesses and need to know that we are not going to tolerate it.

Politics are designed (in the US) to be "for the people" and not for the large lobbying pharma's. At least that's how I see it. If they have made mistakes, they need to account for them and not think they can just brush us all under the table because we are not healthy enough to stand up.

Peace to all,
Karen

PS. I hope you are all doing well and those who know me, please understand that I am now volunteering for multiple efforts to fight for our cause. I apologize if I have not been able to sign onto the forums enough. Please know that I am working in the background for all of us as much as I can.

 

[Ema]

I "liked" their FB page.

Hopefully they will continue to post updates on how to take action.

 

[*GG*]

Thanks for your input. I am not sure exactly how to join, but have posted in their FB page that I believe that there are other organizations that would like to be included in the legal suit (if they can find a lawyer that will take it.)

I truly believe that the CDC needs a "wake-up" call. They are not fulfilling their mission for any of us with NEID illnesses and need to know that we are not going to tolerate it.

Politics are designed (in the US) to be "for the people" and not for the large lobbying pharma's. At least that's how I see it. If they have made mistakes, they need to account for them and not think they can just brush us all under the table because we are not healthy enough to stand up.

Peace to all,
Karen

PS. I hope you are all doing well and those who know me, please understand that I am now volunteering for multiple efforts to fight for our cause. I apologize if I have not been able to sign onto the forums enough. Please know that I am working in the background for all of us as much as I can.

the best for wake up calls is action by the people and/or a hit in funding, to show people are serious!

GG

 

[taniaaust1]

Crap.. pity it wasnt about ME/CFS. I would of joined a CDC legal case thou Im elsewhere in the world as my Aust. doctor used to go to the CDC website and look up and believe their info on CFS (he'd go to their website and read their info in front of me) and using that, my illness was majorly trivialised. Their website caused me harm (I ended up suicidal cause dr wasnt taking ME/CFS seriously due to website!). Which gives a false impression as not all of us is helped by CBT or GET.

edit.. Ive just seen that this isnt just about lyme. I'll look into this legal thing more later. That would blow the CDC's mind if they arent just hit with lawsuit with ones from America involved but the rest of us too from around the world their info impacted badly upon too. (eg them not clearly explaining at their site that ME is different to CFS.. they never put any info up on ME to help doctors make the distinction so all doctors end up doing is following the CFS advice and info).

 

[Ren]

Other countries do use CDC info, at least in part, to create their official State healthcare policies, including State insurance. I've seen it in writing, and it's used in the courts.

 

[txfriend]

The community has to help to find a law firm that will take this on! We have tried in the past, with no success. There was a case of a patient out West somewhere, who won a big lawsuit for his/her CFS...if anyone could find that, and the lawyer who won the case, maybe that atty would know a firm that would take on the CDC. I'm so PC illiterate, I hardly know how to make a search.

 

[jlsprow]

Hi!
I'm Jennifer Sprow. From #curethecdc.
I saw your posts while googling and wanted to respond to your questions.

A little about me. I was once a cfs/me fibro patient, well my daughter and I were. Then we found out it was lyme.

It blew my mind. I thought "but we had the lyme tests more than once."

What I didn't know was that the tests sanctioned by the CDC and Infectious Disease Association are inaccurate at best. They refuse to change their guidelines hence millions are going mis diagnosed. It is now a global epidemic. There is way more to the CDC story including cover ups and corruption!

I am not saying that you have Lyme, however, my feeling is that MS, ALS, CFS ... are mostly caused by vector borne illnesses. That is a personal decision you might wish to make after reviewing the research and potentially being tested.

With all of that being said we would LOVE for you to join the suit, come check out our group, learn about the vector borne diseases. But to reiterate, all cfs/me are welcome!

Actually it is because of you that Lyme Patients vs CDC has officially changed its name to "Cure the CDC"!

Our website is close to being ready. I will post some links for you separately.

I look forward to meeting you! Hugs,
Jennifer Sprow

 

[jlsprow]

https://m.facebook.com/www.May12.org?id=100914586705769&refsrc

 

[jlsprow]

https://www.facebook.com/REAvsCDC?ref=ts&fref=ts

 

[Martial]

I would have wound up dead if the CDC standard was all I had... Serious heart trachaydia that would have given me a heart attack had it not been through additional proper testing through my LLMD.


The sickest patients even test negative through IgeneX as its a test of antibodies to infection and not the infection itself, the sicker you are the more antibodies you use and won't show on tests. Blood cultures can show proof of spirochetes in the blood though but that is if you are lucky enough to catch some on the culture.

I am all for this it is vitally important to get proper awareness out there!

 

[jlsprow]

Yes, agreed. I am positive that our health would have suffered so much more if we had not learned the truth about Lyme and its coinfections.

Glad you are better

 

[K2 for Hope]

Jennifer:

Thanks for posting the info. Where did you finally get a positive Lyme test result? Or how did you get it? I would like to get another test (at least one that would be correct).

Never mind. I see a whole post on the subject of Lyme testing. But, I would be curious to know how you were certain.

Again, thanks for your efforts.
Karen