A MUST READ: Lyme Patients Stigmatized and Scapegoated with Federal Support

(4th of 5 articles I posted)

Jenna Luche-Thayer, former Senior Advisor at the United Nations
July 24, 2016

/www.linkedin.com/pulse/lyme-patients-stigmatized-scapegoated-federal-support-luche-thayer?trk=prof-post

Summary:

"Altogether, the federally supported practices of stigmatizing and scapegoating Lyme patients has:

• Created a marginalized patient group representing every state in the nation
  
• Groomed medical professionals to deny federally sanctioned, evidence based treatment protocols to Lyme patients
  
• Facilitated the denial of insurance coverage for these federally sanctioned treatment protocols
  
• Resulted in a tax-paying patient group having their lawful patient rights undermined by institutionalized federal practices of discrimination [xxxviii]
  
• Tarnished the reputation of three major Universities
  
• Created unnecessary human suffering, loss of human potential, and bankrupted families

Furthermore, these institutionalized practices of discrimination, the undermining of Lyme patients lawful rights, the misuse of grants and the CDC’s preferential treatment for the IDSA have continued without interference from the Office of the Inspector General, the General Accounting Office and the Department of Justice."


Biography

Jenna Luché-Thayer’s expertise includes government transparency and accountability and the integration of marginalized groups. Luché-Thayer is informed by three decades of professional policy and grassroots experience in 40 countries. She has extensive experience in congressional relations, testimony and legislation. She has worked with governments, the United Nations, nonprofits and the corporate world and has over 65 sponsored publications. Luché-Thayer received the International Woman’s Day Award for Exemplary Dedication and Contributions to Improving the Political and Legal Status of Women (US government) and built the Highest Ranking Technical Area in Accomplishment, Innovation & Comparative Advantage for United Nations Capital Development Fund.


Jenna's other articles:

Link to 1st article + thread:
"CDC Sabotages State laws to protect Lyme patients" (7.25.16)
www.healingwell.com/community/default.aspx?f=30&m=3672003&g=3672003#m3672003

Link to 2nd article + thread:
"CDC Rejects Evidence-based medicine for Lyme patients" (7.8.16)
www.healingwell.com/community/default.aspx?f=30&m=3672006

Link to 3rd article + thread:
"CDC Evades accountability in Lyme epidemic" (7.15.16)
www.healingwell.com/community/default.aspx?f=30&m=3672010

Link to 4th article + thread:
"Lyme Patients Stigmatized and Scapegoated with Federal Support" (7.25.16)
www.healingwell.com/community/default.aspx?f=30&m=3675093&g=3675093#m3675093

Links 5th article + thread:
"CDC Lyme Policy Cripples Obamacare & Sanctions Insurance Discrimination" (8.9.16)
www.healingwell.com/community/default.aspx?f=30&m=3681041

Links to 6th article + thread:
"Mar 17, 2016 - Update 7A - Lyme Corps Assessment Brief, part 1 of 2":
www.healingwell.com/community/default.aspx?f=30&m=3683408

Links to 7th article + thread:
"Mar 18, 2016 - Update 7B - Lyme Corps Assessment Brief, part 2 of 2":
www.healingwell.com/community/default.aspx?f=30&m=3683417

Links to 8th article + thread:
"Ethics Complaints - CDC's Preferential Treatment for IDSA" (3.21.16)
https://www.healingwell.com/community/default.aspx?f=30&m=3683427

Links to 9th article + thread:
"Comments from YOU Regarding Lyme Corps & CDC's Lyme Failures" (3.22.16)
https://www.healingwell.com/community/default.aspx?f=30&m=3683435

Links to 10th article + thread:
"CDC Lyme Programs Routinely Flout Federal Procedures" (3.22.16)
www.healingwell.com/community/default.aspx?f=30&m=3683452

Links to 11th article + thread:
"Will the NPR Lyme News follow that of Gawker site Jezebel?" (4.1.16)
www.healingwell.com/community/default.aspx?f=30&m=3683491

Links to 12th article + thread:
"We may need a Whistleblower to Address the Lyme Epidemic" (4.6.16)
https://www.healingwell.com/community/default.aspx?f=30&m=3683514

Links to 13th article + thread:
"Will Federal bill S. 1503. for Lyme and Tick-Borne Diseases end 40 Years of Marginalization?" (4.10.16)
https://www.healingwell.com/community/default.aspx?f=30&m=3683524

Links to 14th article + thread:
"How Does the CDC & Big Pharma Alliance Drive Public Health Policy regarding Lyme?" (4.15.16)
https://www.healingwell.com/community/default.aspx?f=30&m=3683559&g=3683559#m3683559

Links to 15th article + thread:
"CDC & Lyme Oversight Required" VIDEO Part 1 of 3 (5.23.16)
https://www.healingwell.com/community/default.aspx?f=30&m=3684065&g=3684065#m3684065

"CDC & Lyme Oversight Required" VIDEO Part 2 of 3
https://www.healingwell.com/community/default.aspx?f=30&m=3684091&g=3684091#m3684091

"CDC & Lyme Oversight Required" VIDEO Part 3 of 3
www.healingwell.com/community/default.aspx?f=30&m=3684161&g=3684161#m3684161

Links to 16th article + thread:
"Office for Medicare & Medicaid Services & Office for Civil Rights Reviews Discrimination Against Lyme Patients" (8.18.16)
https://www.healingwell.com/community/default.aspx?f=30&m=3689306

Links to 17th article + thread:
"CDC Employs Denial to Downplay Lyme Epidemic" (8.22.16)
https://www.healingwell.com/community/default.aspx?f=30&m=3689326&g=3689326#m3689326

Links to 18th article + thread:
"CDC Global Credibility in Jeopardy over Lyme Policy"
www.healingwell.com/community/default.aspx?f=30&m=3683408

Links to 19th article + thread:
"Global Antibiotic Stewardship Denies Native Americans Lyme Treatment Options"
https://www.healingwell.com/community/default.aspx?f=30&m=3689347&g=3689347#m3689347

Links to 20th article + thread:
"NIH Grants Used to Claim Lyme Patients are Looney" www.healingwell.com/community/default.aspx?f=30&m=3689363


-p

Post Edited (Pirouette) : 8/24/2016 2:50:27 PM (GMT-6)

All I can do is sit and shake my head in disgust any time I read: "this test often gives a false-positive result, that is, a positive result in someone who doesn't have the illness." when they are talking about the ELISA.

Sheesh!! It's been proven (by people with their eyes open!!!) that the ELISA misses up to 70% of those that actually DO have Lyme!!!

Heck, the Western Blot misses up to 50% of those that actually have the infection!!! I had to have a FULL 12 months of treatment to get a fully CDC positive WB!!

And there have been study after study about how trying to culture Lyme from a joint or from spinal fluid isn't worth the risk! It takes longer for the bacteria to get into those enclosed joints and the spinal column.

The amount of misinformation that they put out is literally criminal. It's done on purpose to misdirect people so the number of those with confirmed cases stays lower!!!

Why? Well there are many theories, and I'm not sure which to believe, but just keep looking and you too will soon be convinced that there's something rotten going on!! Grrrrr!!!

Bumping for our weekly review of how the Lyme "system" is incredibly dysfunctional and information really needs to be shared to help the public help themselves!

Thank you Jenna Luche-Thayer!

Read...share your thoughts...

-p

Heh whaaaa happint?????? (any Fred Willard fans out there??)
/youtu.be/4xHPzEERuGA

-p

I really think of it like when HIV first started to be a epidemic the government denied then you must be gay then gay or use dirty needles now look how far it has come hoping one day lyme is like this also when Magic Johnson was infected I watched a interview were he had a black market type doc for treatment fastforward hes way better now reminds me of llmd and how they are like black markets doc who has to be careful I mean jeese we cant even say there name something is broken when it comes to lyme

And... it's very likely that if Ryan (remember the adorable kid who contracted HIV through blood transfusion--died from AIDS) hadn't come along to put a straight, white, innocent face on HIV, that fight would have been much, much worse.

It was the gay community that exploded in the public eye that tossed enough negative publicity (shade!!) onto the front steps of the CDC, NYC Mayor's office, and other government bldgs in DC that very publicly threatened .gov to take action. It worked... and low and behold! Big Pharma rec'd millions to develop drugs...

So the Lyme scene is a little different in that there was a gigantic capitalistic opportunity in the HIV drug market. That's what drove the development of the Lyme vaccines but they can't figure out the science. You know, the bio-engineered science...to make the vaccines successful (yet they are still developing vaccines with the same science). And likely why we'll never see financial investment in Lyme treatment.

-p

Heh "available rage". Couldn't we write a book on that subject, alone...

Ranting can be cathartic. And everyone needs a release. Through rants, others can sometimes learn... so - rant away!

-p

Sad, sad. I rant but it's not like you can say "I have TICK AIDS," and expect not to be ridiculed, stigmatized. The orders of magnitude of 30k to 300k might tip the scales of funding. Good news/bad news is that more and more, cuter younger women are getting it and all of a sudden people pay some attention. And there are so many that already have Fibro, MS, ME, MSIDS, ALS, CFS, Alz, Parkinsons, Dementia...(like Borreliosis United or somethn) can't we just call it the same thing and get some practical solutions science & help together?