Last Chance to have your say - US Gov - Tickborne diseases working group

I sent a public comment to this group a year or two ago. I"m not sure if it gets seen or heard? I don't remember getting any response.

Thanks Quin

i had just cut and pasted from the Facebook page and hadn't checked the link copied correctly

Can we use expletives?

Garzie said...

Lymie24 said...
I sent a public comment to this group a year or two ago. I"m not sure if it gets seen or heard? I don't remember getting any response.

yeah - i would assume they get thousands of comments emailed in - and cannot reply to all of them - but take a selection as examples to feed into the meetings

at least it is a channel where the policy makers - or at least recommenders of policy - get direct input from the suffering patients - so i still think its worth forwarding remarks - or stories of how the medical system treats patients with Lyme etc

I leaned in hard on the emotional aspect when I made my comment.

To be honest, I'm not a nationalist nor am I one who romanticizes military service, however, I was in the military when all of this happened to me and chronic illness forced me out of my career. I was an intel analyst with a Top Secret security clearance and I really emphasized that to try to appeal to the patriotic American viewpoint many people have and also to appeal to those concerned with national security. Of course, national security is fine.They simply replaced me with the next drone but I was really trying to deliver gut punches. Never heard anything back so don't think any of my punches landed lol.

I encourage everyone to keep at it. Write to this group and let them know your experience. It's a cruel joke that those who are often too sick to advocate for themselves are easily brushed aside, but the only way Lyme and associated illnesses will gain more recognition is via people being relentless.

bluelyme said...
doesnt the cdc report to and get orders from the isda ? i think the 6000+ posts i have made on healing well will testify more and stand longer than any well crafted dissertation i cound send to wormser and his cronies ....i understand your sediment here but only can trust as far as i can throw em...wasnt lymedisease.org doing a collection or petition a while back?

the Tick Borne Disease Working group is a group of independent medical doctors ( including LLMD's - Horowitz was on one of the committees), biologists, epidemiologists, patient advocates, etc -
as i understand it their recommendations are to government who are supposed to make policy based upon them - not to the CDC.
i do not follow the USA political process very closely - but i was under the impression that some bills had been passed into law already.

carlnpa said...
I responded.
My name is Carl xxxx

I have tested positive for the Tick Borne Diseases Borrelia, Babesia, Bartonella.

Conventional treatment has not been successful in clearing my infections.

To understand the magnitude of the National problem, the raw testing data (ie number of requested tests for Tick Borne Disease regardless of outcome) should be compiled from the lab companies such as Quest, Labcorp etc.

The current Tick Borne Disease tests themselves are not accurate, for example my Babesia immune response tests show negative but microscopic examination of my blood sample readily reveals parasitic Babesia infection in the blood cells.

Accurate, readily available Tick Borne Disease tests need to be developed.

Sufficient research money needs to be appropriated to develop successful treatments.

Thank you for your consideration of these issues.

good point on pooling existing data from private testing labs Carl :up

astroman said...
Well I know doctors in my state are supposed to send Lyme disease diagnosis into the CDC.

Problem is I’m assuming that means they have to test positive with a simple, not accurate FDA approved lab test vs diagnosis by symptoms alone.

Yup - I bet you’re right.
I was negative with the Canadian test. If I’m remembering correctly - there were just two bands they were accepting .
I was negative.
Did Igenex and I was positive.

It was 2013 when I first tested… here we are almost 10 years later and not much has changed.

P.S. I have a relative who resides in France. There are placards posted at park entrances with pictures of ticks and description of Lyme disease. Kudos to the French for putting LD on their radar and alerting their citizens.

loski01 said...
Do they just give public verbal comment slots to anyone? I applied after seeing this when originally posted.

I’m one of 9 people randomly selected for verbal comment from the looks of it. Or just only 9 applied?

Either way.. I got 3 minutes to talk if anyone wants to suggest a good messaging approach.

I read their 2020 outline and they do seem to be much more up to speed than the cdc, so I don’t wanna hammer points they already know.

I might just tell my story and the failures the medical system had in my case and continues to have.

Wow! - Loski - that's amazing to hear you got a slot to speak - i suspect there were many many applications.

you kind a won the lottery there i think - but also the short straw - and now you need to speak

so, i wanted to help if i can -

in terms of what to advocate for
these people are the professionals that know the subject inside out and have done lost of work to zero in on where the biggest roadblocks are (i have spoken to some of their leading members and it impressed me - they are a fact based and highly professional organisation)

https://invisible.international/

at the top level view - the biggest current issues driving why so many people are suffering are twofold
1, Diagnosis - all currently available tests are poor at diagnosing lyme (so people are never diagnosed - or diagnosed too late when treatment is much much harder) and people are left high and dry by the health system - because they have what is currently seen as a contentious diagnosis

2, Treatment - so even if diagnosis is made - the treatments are poor in terms of efficacy, lengthy, very hard to tolerate, and cause excessive suffering, health care costs, loss of earnings etc etc

there are other issues of course - but if these two key ones were fixed - diagnosis would no longer be contentious
and health care providers and insurance companies would be forced to act, and, if they had good treatments, that action would be effective.

however - the key roadblock right now is that almost all the government research funding - over 95% is going into what they call "basic research" - and for example - only a tiny fraction is going into human treatment studies and a similar v small percentage into effective diagnostics.

eg "The National Institutes of Health allocated only 0.24% ($420,558) of its total Lyme research budget for human
treatment studies from 2013 to 2020."

this point and more like it here https://invisible.international/research/

the reasons for this is that academics are in control of the funding decisions - and academics always want more basic research - and they are not the ones lying in bed in constant pain - or losing the years of the prime of their lives.

whereas the millions of people affectedly this disease - patients, their families and Lyme literate doctors want practical accurate diagnostic tests and effective treatments - NOW - not in 20 years when stuff finally starts to filter down from the academics' dogmatic pursuit of basic research.

if it were me - this is what i would bang the table about.

i would:
*use the numbers from invisible international - as reliable facts on where the research money is currently going

*emphasise why we need that to change - as there is so much suffering RIGHT NOW
-maybe something from the official figures on the scale of the problem and how its escalating - 400,000 cases per
year in the last statement from the CDC i think - up from 30,000 official cases - then 300,000 - now 500,000 -
-of which its accepted over 20% or more fail current treatments - and become part of a huge population of long
term sufferers.
-ITS THESE LONG TERM SUFFERERS THAT NEED THIS HELP THE MOST - not the acute cases - as if
caught early and treated most of those will recover - even with existing drugs. its the large and growing
chronic population that has been ignored and disbelieved and mistreated and is suffering year after year - RIGHT
NOW

*colour it with a picture of the real personal impact of pain and suffering, isolation, rejection by the health system and insurance co's etc in your case and others you know of

*highlight the huge costs involved on a personal basis - not only treatment cost - but loss of earnings - not to mention costs to the state etc etc

i'm sure the academics will argue they need the basic research to come up with diagnostics and treatments - but this is not entirely accurate - its actually imperative to work the problem from both ends at the same time - again people like invisible international and other advocate groups have plenty of ideas of how this can be done today already - there is no shortage of ideas - funds are the main roadblock

another good set of data points


the more they hear these same points repeated from all quarters, patients , doctors, advocates etc - the better

hope its of some help

i appreciate you are doing this for the many who cannot - well done!!! - i would like to help so please do reach out to me if i can help further in any way - my email is in my profile

Post Edited (Garzie) : 11/19/2022 11:47:59 AM (GMT-8)

MargaritaLyme said...
P.S. I have a relative who resides in France. There are placards posted at park entrances with pictures of ticks and description of Lyme disease. Kudos to the French for putting LD on their radar and alerting their citizens.

I have also seen this posted in Wisconsin and Minnesota trailhead parking lots, but this was near more populated areas. The further out you get you do not see any information posted. And this is where it really needs to be! Apparently California does this at all kinds of trail head parking areas.

Northwestern Wisconsin is very transparent to the public when It comes to the dangers of ticks. That area is also tick central! Way more ticks than the UP/Mich just north of it for some reason. In the past it was mentioned on a few smaller communities / towns webpages. I think many rural US north-central people are aware of this, and probably know somebody who has/had it. it’s the people that come visit / vacation in these areas that don’t think about it.

loski01 said...
I’m one of 9 people randomly selected for verbal comment from the looks of it. Or just only 9 applied?

Either way.. I got 3 minutes to talk ......

Wow! Maybe you should try to start playing your local lottery too!

As far as what to say, just what Garzie said.

Your general experience with lack of knowledge from conventional doctors, being kicked around from doctor to doctor, and those totally oblivious to the fact that this can be a chronic condition. Emphasize on the chronic part of late or never diagnosed tick disease patients, And complete lack of care from the conventional medical community.

And of course - conventional doctors need to know the truth about its chronic condition now , not years from now!!!

Post Edited (astroman) : 11/19/2022 1:34:07 PM (GMT-8)

for sure the immune system is a factor

for instance - you can go to an event where someone has COVID and many people will get sick afterward - but not everyone gets sick - even if they spend time sat next to someone who was infected and contagious.

so there is the immune system variable

but we don't turn people with covid away at the hospital if they need a ventilator - because we are not sure if they got ill because their immune system was weaker or just slightly different than the next persons.