Why NOT To Protest the Federal Bill
There are a few people considering a 2019 May Awareness protest in Washinton DC. Recently, after being questioned about this action, they determined what their goals would be. Below is their "official" explanation. Facebook page.
💥💥💥After consulting with advisors The Lyme Army decided to make some important changes to our rally. It’s important that our efforts HELP the lyme community and not harm us. 💥💥💥
There is a proposed lyme Bill by Chris Smith HR 5878. This bill, if passed will put money into the same hands of those who have mocked and denied the lyme community. Our presence without a clear message could push this bill through. We don’t want this to happen, so we made changes to the rally.
1. One day event: Friday May 17th we will March the Halls of Congress. Then hold a candlelight vigil that evening.
2. Our message: Kill the Lyme Bill, No more money until they tell us the truth & call a congressional hearing to investigate Lyme disease!
If you have any questions please feel free to contact us & please spread the word of the changes. We want to make this as simple and easy for everyone as possible. Our rally will be documented by a film crew.
It has been shared by others as noted below.
Mirenda Campirano shared a post.
The Lyme Army to Lyme/Chronic Illness Rally in Washington, DC
💥💥💥After consulting with advisors The Lyme Army decided to make some important changes to our rally. It’s important that our efforts HELP the lyme community and not harm us....
Please! Save your energy, time and money!
Read these five simple reasons why this is not a good idea.
(More reasons provided on request.)
1. The "advisors" guiding this effort (posing as patient advocates) are the same ones who have fought the Lyme Community behind the scenes over the years and in some cases destroyed months to years of hard work we've done to try to get all of us the help we need. (I truely don't understand why they do this- jealousy, revenge, glory-hounds, power hungry, money hungry? I just don't know, but they do. Don't let them suck you into this mess.)
2. Think about it. Approaching Congress at this point to try to "kill the bill" many of us nationwide have been working hard on for a couple of decades is really stupid. The advisors or supporters of this effort obviously haven't read the bill or don't understand it, or are just up to their old tricks. You can't, as suggested by those promoting this action, stop movement of a Congressional bill or its funding until the government bows to your demand to "tell the truth". It doesn't work that way.
3. Make no mistake if you participate in an attempt to kill the bill your efforts will be seen for what they are- the "nut cases" who are there to undermine legitimate, long-standing, non-profit organizations and respectable patient's sincere efforts. You may be heard if you are there (as is required), but you won't be listened to. Congress has been through this same thing before- basically each time a Lyme bill comes up. They know who is behind the ongoing nut case movements, are already prepared for it, and truthfully- if you "Storm the Halls of Congress" or plan to engage legislators, you don't stand a chance to do anything more than to make yourself look crazy.
4. One of the demands the protest leaders are making is to have a hearing before moving the Lyme bill forward. That sounds fine and dandy, but did they tell you we've already had a Congressional hearing- one with global reach? It wasn't easy to do, but it has been done. You can watch it here. You really need to follow the suggestions of those who have some knowledge of this process.
Press Release- https://lymediseaseassociation.org/congressional-activity/blumenthal-chairs-senate-lyme-hearing-2/
Press Release- https://lymediseaseassociation.org/federal-legislation/legislative-session-2011-2012/blumenthal-a-gillibrand-focus-on-lyme/
5. The sponsors of this movement want to stop research funding from going to the wrong people. I agree 100%. And that is exactly what this bill was designed to do! So why try to kill it? The bill is long and complex. But, if you have any doubts or don't believe me, please read it for yourself (or at least some of the notes I've shared below). You'll see exactly what we've been needing is in this bill.
Congressional Bill
H.R.220 - National Lyme and Tick-Borne Diseases Control and Accountability Act of 2019
https://www.congress.gov/bill/116th-congress/house-bill/220/text
NOTES- (2) an assessment of all federally funded programs and activities related to surveillance, diagnosis, treatment, education, or prevention with respect to Lyme disease or other tick-borne disease, an evaluation of progress and performance based on mission and purpose, and a description of significant challenges or barriers to performance, including an assessment of Federal grants awarded; [a review of all the bad money spent on research and who it went to]
(3) a strategy for improving diagnosis, treatment, and prevention, including increasing the impact of grants awarded by the National Institutes of Health, the Centers for Disease Control and Prevention, and other agencies and offices of the Department of Health and Human Services;
(iv) expand the number of collaborative multi-institutional research grants related to tick-borne disease; and
(E) GRANTS.—The Secretary may award grants to, or enter into contracts or cooperative agreements with, public or private nonprofit entities to carry out activities under this paragraph.
(D) PHYSICIAN EDUCATION.—The Secretary shall carry out a physician education program that addresses the full spectrum of scientific research related to Lyme disease and other tick-borne diseases and disorders, including—
(i) the role of clinical diagnosis; [no need for positive tests to be treated]
(ii) the limitations of serological diagnostic tests; [FINALLY]
(iii) enhanced, validated diagnostics available from laboratories certified under section 353 of the Public Health Service Act (42 U.S.C. 263a) that may aid the physician; [IGeneX & Galaxy for example]
(iv) guidelines available on the National Guideline Clearinghouse; [all guidelines, not just IDSA]
(v) the voluntary nature of clinical practice guidelines; [so they can't be held against us or used to deny insurance coverage]
(vi) the complexities presented by coinfections relating to symptomology, diagnosis, and treatment, including prudently acting in the patient’s interest in non- or low-incidence States; and
(vii) the identification of significant research gaps most impacting diagnosis and treatment, and significant research being conducted to address those gaps.
Press Release- “Having knowledgeable people at the table will put the focus on the research, and there is a huge amount of brand-new research that shows there are (Lyme) cells that are left over after regular treatment,” said Pat Smith, who was involved in drafting the language establishing the working group.
In addition, she said, the Cures Act “will cause these federal agencies to have to talk about all of this in public.” For both Pat and Chris Smith, it marks a victory after prior attempts to create a national task force were rejected.
“My original legislation ensured the individuals impacted by federal policies would have a seat at the table when the decisions are made,” Chris Smith said. “It has taken many years and several drafts, but thankfully today’s Cures package includes similar language that will begin the process of addressing the great unmet needs in the Lyme community in an open and transparent manner.”
2013
Washington, Feb 12 – Gearing up to renew the fight to improve Lyme disease research, diagnostics and treatments, earlier today, Rep. Chris Smith (R-NJ) and Rep. Collin Peterson (D-MN) formally registered the bipartisan Lyme Disease Caucus in the 113th Congress and introduced legislation to establish a federal Tick-Borne Diseases Advisory Committee.
Under the legislation, H.R. 610, the Advisory Committee would be tasked with enhancing communication among federal agencies, medical professionals, and patients/patient advocates and to ensure that a broad spectrum of scientific viewpoints is represented in public health policy decisions. The bill also requires that the information disseminated to the public and physicians is balanced. There has been great concern over the last several years that meritorious analyses and opinions regarding “chronic” Lyme have been withheld from doctors, patients and insurers.
The Lyme Disease Caucus is dedicated to educating Members of Congress and staff about Lyme and other tick-borne diseases, as well as advancing initiatives that are designed to help the estimated 275,000 Americans who develop Lyme disease each year and all of those living with the disease.
NEWS: Congressman Gibson re-introduces federal Lyme bill
https://www.lymedisease.org/772/
NOTE- I will probably be deleted, blocked, unfriended, trashed, or whatever by those who don't want you to know this information. It has happened in the past.