What's Wrong With These People?

Shameful Attempts to Trash A

Lyme Patient Advocate & A Support Group Leader

March 19, 2018

Link Here To Original Post

https://www.facebook.com/TheMaydayProject.org/

How can a Patient Representative on the Tick-Borne Disease Working Group (TBDWG) Advocate Patients’ Priorities While Condoning Official Reports Promoting Anti-Patient Lyme Guidelines?

Where does it say- anywhere- Paula condones or promotes “Anti-patient Lyme Guidelines”? Every indication, document, website, FB pages, blog post, and those who know her, knows that she absolutely doesn’t. For example- http://www.mldse.org/p/rockport-lyme-disease-support-group.html

In 2008 the Maine State Legislature passed a law that allows health insurance companies a critical role in Lyme disease treatment and reporting.

In response to the law, Maine CDC formed a ‘Lyme and Tick-Borne Disease Working Group’ to issue an annual report to the Maine Legislature.

This was to be done on an annual basis. The 2018 report is the tenth report from the committee.

Paula Jackson Jones is a member of this Maine CDC Working Group (See Appendix 7 in link provided below.)

Please notice she is the only one who isn’t a state/government employee, business or University rep. She is listed as a representative from a good, very active and very solid Maine Lyme Disease Support Group.

There are basically two reasons a patient representative is included in groups like this, and/or task forces, etc.

1st- the government groups are now designed to have a "token" patient representative. The government needs to be able to say and show they “worked" with patient reps in their official reports so they appear to be reasonable and fair.

2nd- The government includes these patient reps and at the same time stacks the deck against them. They set it up in advance to make sure patient reps voices or votes don't carry any weight. Case in point, this group has 44 OTHER members (government, etc.) and only ONE patient representative.

This same patient representative, Paula Jackson Jones, is on the federal TBDWG ‘Subcommittee for Access to Care Services and Support to Patients’. This Subcommittee has a current Co-Chair vacancy after the resignation of patient advocate, Karen Forschner.

I say bless her heart for volunteering for this miserable job, and thank you! Not many people take a stand to protect us, as we’ve seen when Susan Green and Karen Forschner quit- with both quitting once it got past the glitter announcements and down to the actual “working” part. If Paula wasn’t standing up to the idiots for us, our voices would be drowned out totally in that arena. Got to wonder- did the Mayday Project leader and staff (if there are any). or some of these others that are kicking them on a daily basis, try to get on the federal working group and were rejected? << THAT, to me, at least makes some sense, but I don’t know if it is what has happened.

Jones is the President of Midcoast Lyme Disease Support and Education of Maine. Known as MLDSE, Midcoast is an affiliate of Lyme Disease Association (LDA) and receives funding support from LDA.

Paula’s group has received, as Lyme groups in 20 other states and two foreign countries have, educational grants to help raise Lyme and TBD awareness. According to the record (posted on the LDA site), it appears in the last three years Paula’s group received 5 educational grants- ALL of them in support of their educational conferences. This year will they will have their 4th conference- an all day event (8-5) held in a Civic Center.

The line-up of conference speakers looks REALLY good, not IDSA at all. There are 6 doctors from our side, the President/CEO of our two biggest and longest running Lyme disease organizations, a speaker addressing PANS/PANDA and an author. Their sponsors/donors, including IGeneX, Maine Association of Naturopathic Doctors, Lyme Disease.org, etc., all look really good to me and are not IDSA supporters at all.

See for yourself...

2018 Conference- http://conference2018.mldse.org

Pat Smith is the President of LDA as well as a voting member of the federal TBDWG and Co-Chair on a Subcommittee.

And thank God she is there doing what she does so well, and AS A VOLUNTEER too! Bless her heart!

QUESTION ONE

WHY is a ‘patient representative’ from one of the federal TBDWG Subcommittees participating in a CDC Working Group that fully endorses the Infectious Diseases Society of America (IDSA) Guidelines dictating testing and treatment for Lyme and tickborne diseases?

I can’t speak for Paula, don’t know her, but have heard many good things about her. So, if I may speculate...

First, just to note… example- Paula publicly announced the placement of the ILADS guidelines on the National Clearing House with enthusiasm. She also announced the removal of the IDSA guidelines from the Clearing House site.

She is trying to make a difference! She is hanging in there year after year sharing our views so we are at least represented at the “stacked” table. This can’t be fun for her and she is using her own time and her own funds to do it. That takes guts, determination and a true recognition and love of people who are hurting who need help.

QUESTION TWO

(a) Does LDA know about this patient representative’s support for IDSA’s anti-patient views?

(b) If LDA does know, do they also support IDSA’s anti-patient views?

Whoever came up with this trash and the rest of the ugliness we keep seeing hasn’t done their homework, is jealous, wants to be- as someone recently pointed out- a Queen Bee by killing off everyone else (rather than doing the work required to be recognized). They are purposely trying to discredit the LDA, LDO and anyone who helps them, and you know what? They are just plum crazy. (Of course that’s my unprofessional and non-medical opinion.)

This Mayday post and Jenna (whatever her name is) and Karen, et. al.. with their so-called important messages, sounds like a Smothers Brothers routine.

Smothers Brothers

https://www.youtube.com/watch?v=02bjjs6QPII

Tommy Smothers imitating Johnny Carson- appropriate to this topic

https://www.youtube.com/watch?v=oghxf-HS6go

It appears these so called patient advocates putting out this trash are NOT looking out for Lyme patient’s welfare as much as they are trying to falsely promote that they are the ones who are all wise, wonderful and powerful, and in the meantime it seems they are just trying to crush good, hard working, dedicated people. What’s wrong with these so-called advocates?

The January 2018 Maine CDC report promotes the IDSA Lyme propaganda and echoes IDSA anti-patient views. On page 7, the Report states that, “Nationally, IDSA is the leader in setting the standard for clinical practice guidelines on Lyme disease and other tickborne illnesses.”

Exactly! THAT is what we continue to try to fight! When was the last time these rose buds who promote themselves all over the place, actually did this kind of work with a group that is stacked against them 44 to 1? Paula is a volunteer member and no where does it say she endorses any of these views.

According to the 2018 Report to the Maine legislature, there exists “no convincing evidence for the existence of chronic Lyme infection and that long-term antibiotic treatment of ‘chronic Lyme disease’ is unproven and unwarranted. This recommendation is also supported by federal CDC.”

Where doesn’t it say that? THAT, again, is what we are trying to fight! Obviously, the rose buds here aren’t interested in fighting the bad boys. Instead, they spend endless hours going after the good guys. What’s wrong with these people?

QUESTION THREE

WHY are Jones and MLDSE colluding with Maine CDC’s anti-patient policy and practices?

Get a colluding grip! If you are so stinking interested, why don’t you ask her directly? Oh, that’s right- gossiping and falsely accusing others of being corrupt is more fun for you, and in your eyes it’s a better way to slime someone. Again, what’s wrong with these people?

QUESTION FOUR

WHY have there been no public disclaimers from Jones regarding the Report’s obstruction to access of diagnostic and therapeutic options that have met internationally accepted evidence-based standards?

First, the rose buds obviously know nothing about politics if they ask these types of stupid questions.

QUOTE FROM PAULA’S SITE- "More importantly, we do not slander any physician who refuses to diagnose or treat the people who eventually find their way to us. We realize that, even with these Maine laws in place, there is still a larger need for physician education and we have taken it upon ourselves to foster that here in the Midcoast region, through our events, speaking engagements, and our free community conferences."

Read entire article written by Paula here- http://www.mldse.org/2016/02/

PAULA’S QUOTE- "People with Lyme or tickborne diseases remain misdiagnosed and mistreated in mind-blowing proportions.” Does that really sound like an IDSA supporter to you?

In Maine, Lyme disease is a ‘notifiable disease’, requiring practitioners to submit very detailed patient information of every case to Maine CDC.

That is the same in all or nearly all states, nothing new or different.

Maine CDC requires that “non-compliant persons ... shall be reported to the Department”, meaning that Lyme patients who refuse IDSA treatment can be reported.

Are you kidding me? That’s a hard twist on top of a twist! The state’s reporting system collects info on many communicable and infectious diseases for the purpose of protecting the public. That’s been the process for decades. Example…

QUOTE- "Lyme disease gets its name from a small coastal town in Connecticut called Lyme. In 1975, a woman brought to the attention of Yale researchers an unusual cluster of more than 51 cases of mostly pediatric arthritis. In 1977, Dr. Allen Steere and Yale colleagues identified and named the 51 clusters “Lyme arthritis.” Source- http://maine.gov/dhhs/mecdc/infectious-disease/epi/vector-borne/lyme/

They want/need (or feel they need) to monitor diseases such as HIV/AIDS, the plague, ricin poisoning, rabies, anthrax, botulism, gonorrhea, tuberculosis, syphilis, etc. They have state regs that allows them to take action (legally) to identify threats brought about by these and many other diseases.

This Mayday post & Jenna Lucus Thayler forgot to mention in their hate speeches….

QUOTE- "The rules specified in this Section shall only be applicable in the event of a declared extreme public health emergency and only then for the duration of the declared extreme public health emergency.”

QUOTE- "These rules govern the reporting of certain diseases, clusters of unusual cases of a disease or outbreaks of a disease, epidemics, and extreme public health emergencies."

QUOTE- "In the event of an outbreak or epidemic of a notifiable disease or condition or of a potential epidemic, the Department shall institute public health disease control measures consistent with national standards as published in the 20th Edition published in 2015 Control of Communicable Diseases Manual, or any subsequent edition, published by the American Public Health Association. … Individuals who are alleged to be non-compliant with these public health disease control measures or prescribed medical treatment shall be treated in the manner prescribed in Section 10-D (above) as expeditiously as possible."

QUOTE- "Any public or private enterprise, utility, lodging area, food market, or other entity which provides food or water which is likely to be or has been determined by either laboratory or epidemiological methods to be a source of outbreak or epidemic may be ordered by the Department to end the use or distribution of said food or water until the source of contamination is found and corrected and the food or water has been proven safe for consumption.”

These rules are necessary to protect public health. Period. To twist them around so hard that you feel it acceptable to tell others… "Lyme patients who refuse IDSA treatment can be reported” is not informed enough to be translating these documents, and/or are trying to use them to mislead you so you fall for their propaganda.” Well, that’s sick. Sad. Wrong.

QUOTE- "Individuals who do not comply voluntarily with these public health disease control measures or prescribed medical treatments and who are deemed by the Department to be exposed to or at serious risk of transmitting a notifiable disease or condition that poses a serious and imminent risk to public health and safety, shall be taken into custody and prescribed care consistent with these standards or standards established by the Control of Communicable Diseases Manual 20^th Edition, published in 2015, or any subsequent edition, which is the official report of the American Public Health Association. Copies of the manual may be obtained from the American Public Health Association, 800 I Street NW, Washington, DC 20001-3710."

Were these rules set up nation wide to address people who have Lyme disease for fear they will infect others? Absolutely not!

Source (see 1st link on this page)- http://www.maine.gov/dhhs/mecdc/infectious-disease/epi/disease-reporting/index.shtml

Furthermore, Lyme patients who do not ‘adequately’ respond to certain drugs can be reported for having on-going symptoms.

See reponse above.

QUESTION FIVE

We find this very DISTURBING … what do YOU think?

Thanks for asking. Now stop slamming patient advocates and Lyme groups using made up trash in order to mislead people.