Embedded Files
LYING & STILL ATTACKING PATIENT ADVOCATES
UPDATE- March 28, 2018
Let's make this clear...
MANY people know already, due to a long history of these same problems, and many others are starting to notice the lies, omissions, trashing and/or twisting of information being done by Allison Caruana (Mayday Project), Jenna Luche-Thayer, Karen Forschner, Susan Green (NatCap Lyme), Monte Skull (NatCap Lyme) and/or a few others.
Their collective goal has been to discredit and push out of existence the national Lyme Disease Association, LymeDisease.org and anyone and everyone who supports them in any way.
Some of them have been on this attack wagon for years (decades) and it has been VERY ugly with attack after attack after attack. A few others have joined them more recently to help push their agenda.
All of them now, in my opinion and in others opinions, are nothing more than trouble makers who spend more time on the attack trying to destroy than they do carrying out an honorable mission to help others.
If they can't help you or our situation without first smearing others and/or lying to do so, they shouldn't be acknowledged or heard.
Please, before you share anything coming from them and their associates you need to carefully do your own research, check all of the facts, then decide if you want to share something that they are setting you up for, which is to share their shameful propaganda in order to discredit the many long time volunteers and organizations who are truly dedicated to helping you.
WHY they do this we don't know, but they do.
It's time to take out the trash, remove these road blocks and let those who can and have worked well together to move us forward continue to raise awareness and educate the masses about Lyme and TBD as they strive to make all things better.
The dedicated, hard working patient advocates and organizations need to be able to continue their volunteer work without interruption and the craziness that this small handful of people brings to the table as they continuously attempt and often succeeds in sabotaging countless good projects.
The ones they can't sabotage they have been known to jump out at the last minute in the public's eye and proclaim- LOOK WHAT I DID, LOOK WHAT I DID! [DONATE! DONATE! DONATE!]
You'd be much better off, we all would be, if you could get them out of everyone's faces and put them back in the corner where they belong until they learn to behave themselves- IF being civil is even possible for them at this point.
This is my opinion, and I thank you for your consideration.
Lucy Barnes
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
March 19, 2018
Link Here To Original Post
Mayday comments from their FB page is in plain font.
My responses addressing this SLYME is in bold font.
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 Jackson Jones condones or promotes “Anti-patient Lyme Guidelines”? It doesn't.
Every indication, document, website post, FB page, blog post, and those who know her, knows full well that she absolutely doesn’t promote anti-patient (IDSA) guidelines.
For example, find out who Paula recommends patients see when sick? Answer- http://www.mldse.org/p/blog-page_29.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 report was to be completed on an annual basis. The 2018 report is the tenth report from the committee. It is located at the link below.
2017 Report- http://www.maine.gov/dhhs/mecdc/infectious-disease/epi/vector-borne/lyme/documents/Lyme-Legislative-Report-2017.pdf
2018 Report- http://www.maine.gov/dhhs/mecdc/infectious-disease/epi/vector-borne/lyme/documents/Lyme-Legislative-Report-2018.pdf
Paula Jackson Jones is a member of this Maine CDC Working Group (See Appendix 7 in link provided below.)
[LINK POSTED BY MAYDAY PROJECT IS NOT WORKING]
Working Link Here- http://www.maine.gov/dhhs/mecdc/infectious-disease/epi/vector-borne/lyme/documents/Lyme-Legislative-Report-2018.pdf
Please notice Paula is the only one who isn’t a state/government employee, business or University representative in this group. She is listed as a representative from a well respected, very active and very solid Maine Lyme Disease Support Group that she founded.
There are basically two reasons a patient representative is included in government groups like this, and/or task forces, etc.
1st- government groups are now designed (due to pressure) to have a "token" patient representative. The government needs to be able to say (and show) they “worked" with patient reps (stake holders) in their official reports so they appear to be inclusive, reasonable and fair.
2nd- The government unwillingly includes these patient reps, and at the same time stacks the deck against them. The structure is set 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 Lyme patient representative. That's stacked big time against us and Paula, don't you think?
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.
First, many have asked me- why did Karen Forschner (and Susan Green) quit? When given the opportunity to help improve our situation they left us all down and out. I have no answers, but I do have some opinions if anyone is interested.
Second, I say bless Paula's heart for volunteering for this miserable and difficult job, and I thank her for taking it on!
Not many people take a stand to protect us, as we’ve seen when Susan Green and Karen Forschner quit- with, by the way, both quitting the group 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. Not many people have the skill, patience and knowledge about Lyme and tick borne diseases to do well when tossed into this kind of situation, but it seems Paula does. At least she is willing to try.
Got to wonder- did the Mayday Project leader and staff (if there are any), or some of these others (rose buds) that are kicking the dedicated support group leaders on a daily basis, try to get on the federal working group? Were they rejected? << THAT, to me, at least makes some sense, but I don’t know if that is what has happened. And in terms of "making sense", well, for maybe for a 3 year old.
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.
It appears Paula’s group has received, as many Lyme groups in 20 other states and two foreign countries have, educational grants to help raise Lyme and TBD awareness. I mean, hey... that IS our goal, right?
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 large Civic Center.
The line-up of Paula's conference speakers looks REALLY good to me, not IDSA at all.
There are 6 doctors from our side (ILADS and others), the President & CEO of our two biggest and longest running Lyme disease organizations, a speaker addressing PANS/PANDA and an author.
Paula's financial sponsors/donors, including LDA, 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 and get the facts, or go along with and support the screw-lose rose buds...
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 (in both positions) doing what she does so well, and AS A VOLUNTEER too! Bless her heart! Not many I would trust to be in her position.
Having been forced to work with the idiots over the many years has given her the knowledge, and hopefully the ability to not throw up, when she has to meet with them to push our agenda.
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 actually, but have heard many good things about her. So, if I may speculate (and use some common sense)...
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. Source- http://www.mldse.org/p/rockport-lyme-disease-support-group.html
With these efforts she is obviously trying to make a difference! She is hanging in there year after year sharing our views so we are at least represented at the government's “stacked” table.
I don't see the rose buds offering to take time away from themselves, their families and/or their life to do these jobs.
This can’t be fun for her, not at all. This type of work takes guts, determination and a true recognition and love of people who are hurting who need our help.
Take a look at her group's website if you doubt in any way that she is not sincere. Link Here- http://www.mldse.org
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 talk 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 for their accomplishments).
The rose buds are on a mission to purposely discredit the LDA, LDO and anyone who helps them, and you know what? They are just plum crazy. (Of course that’s my unprofessional, non-medical opinion.)
This Mayday post and Jenna (whatever her name is) and Karen, et. al.. with their so-called important messages and dramatic, rush rush posts, sound like an old Smothers Brothers routine.
Smothers Brothers were good in the world of comedy, but that tip of approach is tragic when it comes to dealing with our lives and the lives of our children.
Smothers Brothers
https://www.youtube.com/watch?v=02bjjs6QPII
Tommy Smothers clip imitating Johnny Carson- rather appropriate to this topic. It's in part about lying.
https://www.youtube.com/watch?v=oghxf-HS6go
It appears these so called patient advocates putting out this trash are NOT looking out for the Lyme patient’s welfare or futures 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? And what makes them trash people year after year?
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! HELLO! 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, according to the report, a volunteer member and no where does it say she endorses any of that group's views. I like ice cream, but I am not responsible for the milking of the cows and can't take credit or the blame for it when my wishes aren't followed.
So why is Paula suddenly being held responsible for 44 other people's views and that of the CDC, IDSA, insurers and all who work against us? Come on!
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.”
HA! 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 that are destroying so many lives.
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 in actually knowing, why don’t you ask her directly?
Oh, that’s right- gossiping and falsely accusing others of being corrupt is more familiar to you, more fun for you and in your eyes it’s a better way to slyme someone else. Cowards.
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 and/or have another motive in mind 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.
It 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 super 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, like it or not.
Example- look at how Lyme was discovered…
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/
The government wants/needs (or feels they need) to monitor diseases such as HIV/AIDS, the plague, ricin poisoning, rabies, anthrax, botulism, gonorrhea, tuberculosis, syphilis, etc.
They have set up state regulations allowing them to take action (legally) to identify threats brought about by these and many other diseases. We don't, for example, want someone with tuberculosis running around infecting others, right?
This Mayday post & Jenna Lucus Thayler forgot to mention in their hate speeches and propaganda that the document actually says….
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..."
QUOTE- "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.” [End quote.]
These rules are necessary to protect public health. Period.
To twist them around so hard that you feel it is acceptable to tell others "Lyme patients who refuse IDSA treatment can be reported” is not being responsible or truthful.
The rose buds obviously aren't informed (smart) 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. And sad. And very, very 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 20th Edition, published in 2015, or any subsequent edition..."
Were these rules set up nation wide to address people who have Lyme disease for fear they will be a public health hazard and 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 me! It would also be nice if you hadn't blocked me from your site so I could share the facts with others. Having multiple patients upset and contacting me about your trash is getting old. How about giving them a break?
And stop slamming patient advocates and Lyme groups using this garbage in order to purposely mislead people and turn them against those who are more dedicated, a thousand percent more honest and hardworking than you'll ever be!
The above is my opinion...
Lucy Barnes
March 19, 2018
LYING & STILL ATTACKING PATIENT ADVOCATES
Let's make this clear...
MANY people are starting to notice the lies, omissions and twisting of information being done by Allison Caruana (Mayday Project), Jenna Luche-Thayer, Karen Forschner, Susan Green (NatCap Lyme), Monte Skull (NatCap Lyme) and a few others.
Their goal is to discredit the national Lyme Disease Association, LymeDisease.org and anyone and everyone who supports them. Some have been on this attack wagon for years (decades) and it has been VERY ugly. Some have joined them more recently.
All of them now, in my opinion and in others opinions, are nothing more than trouble makers who spend more time on the attack than they do carrying out an honorable mission to help patients.
If they can't help you without first kicking others who do, they shouldn't be heard. Please, before you read or share anything coming from them you need to carefully do your own research, check all of the facts, then decide if you want to share something that they are setting you up for, which is to shamefully hurt the many long time volunteers and organizations who are truly dedicated to helping you.
It's time to take out the trash and let those who can and have worked well together continue to raise awareness and educate the masses on Lyme and TBD. They need to be able to continue their volunteer work without interruption and the craziness that this small handful of big mouths brings to the table.
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