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Posted 3/29/18 on Facebook
Coco Lake As always, year after year, decade after decade, Lyme patients have been wooed and lured in to cooperate, with sweet smiles, pretty words and promises—only to be USED to further the IDSA and CDC agenda.
Just at history. It is a long list of promises that raised hopes that ended in disappointment, when patients later realized they had participated in activities which were detrimental to themselves and those in the Lyme Community. Every single promise that brought hope, was broken.
Nothing has changed, except they are more sophisticated and more practiced in accomplishing the same goal, which has never changed. This time, the effects are much more serious because the process of the TBDWG is more official and reaches far beyond the power of CDC.
The NIH controls CDC. The Department Of Health and Human Services, which is running the TBDWG, controls the NIH. This Working Group will eventually be making official recommendations TO CONGRESS, which writes and PASSES OUR LAWS. Laws which control every citizen, including doctors and their patients, across the entire country. This is serious business.
In my opinion, they are obviously not working to help people who are sick with Lyme, and here are the reasons for making this statement:
1.) The sudden disappearance of the patient advocates in the original bill language, two years ago, during Thanksgiving weekend, was the first giant clue. Patient involvement was not wanted and steps were stealthily taken to quietly accomplish this goal. The government was going to be the only advisor to Congress on the subject of testing and treatments for
Lyme disease.
2.) The makeup of the TBDWG membership is unbalanced and favors the anti-patient side. All groups vote on all recommendations.
3.) The requirement that the seven (unwanted) patient voting members sign on as Special Government Employees was the second, very alarming clue. This was never necessary and is not common practice with federal advisory committees. So, why? The entire TBDWG Voting Members are now officially, working for the US government. Anyone who refused—would not get the job. They had to take an oath in a public ceremony, as if—they were testifying in a court of law, or being sworn in as a legislator. As now being government employees, they can also—be fired?
4.) The decision by longtime Lyme patient advocate, Attorney Susan Green, to not participate in the process, after being selected.
5.) The abrupt resignation of one member of the Access to Care Subcommittee was the next clue. She has made numerous comments regarding claimed improprieties she observed during her short term as a member of both the 14-member Voting Group, and also, as a Co-Chair of the Access to Care Subcommittee. No formal statement has been made, but these comments are unsettling.
One of the big issues for patients, is ACCESS TO CARE. Insurance companies have denied access to care ever since IDSA’s Lyme experts became involved with work to develop vaccine that CDC wanted.
They changed the tests and made false proclamations about the effectiveness of the treatment. These false claims were used to deny financial access to care, time and time again. The same claims were used to write the IDSA guidelines which were adopted by CDC.
Physicians who attempted to help patients were brought up before their medical boards for severe disciplinary action because they had given patients ACCESS TO CARE. This is one huge reason why LLMD’s do not accept insurance programs.Attempting to be reimbursed by an insurance company puts a giant target in their backs.
And now, the danger of patients’ being denied access to care (even if they pay for care out of their own packets) is much higher because the health policies regarding testing and treatment are in the process of becoming even MORE OFFICIAL. The decisions made in the TBDWG about access to care (testing and treatment) will eventually be sent to Congress,which has the power to enact laws regarding access to medical care—for both adults AND their children.
6.) The lack of transparency (AKA, secrecy) of this TBDWG debacle is another giant clue. The only logical conclusion for outsiders to make, is that patient members are being instructed to behave as if they are members of a jury trial. They have been SILENT. This is the only explanation—they have been ordered not to talk. To anyone. Maybe, even to each other.
So, this begs the question, WHO IS ON TRIAL?
7.) Patient comments to the TBDWG are not being shared with the members of the Working Group, nor are they made accessible online, citing bogus reasons. Why are these public comments being purposefully withheld from the from the public, and eve worse, from the Working Group? This is the opposite of transparency. In fact, they are braking the law.
8.) Any internal rules, policies and code of ethics governing the members of the Working Group have never been published. These should be documented in written format and therefore, would be easy to make available to the public. In fact, we have reports that citizens who have inquired about this subject have been sent form letters designed to only reassure and assuage their fears.
We have received no information, that even the patient advocates in the Voting Group, nor those in the Subcommittees, have received any of these documents in writing. Why—isn’t anybody talking about this?
Patient inquiries have been met with HHS form letters designed to appease, placate and assure—that they are very busy, but they are working for us. Reality is, no evidence of these vague assurances and promises has been provided to support these claims.
The Mayday Project shared Jenna Luche-Thayer's post.
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