That said... I'd like to kindly ask that you remove your post in the General Section immediately. Once the information can be checked out, it may (?) be able to be re-posted.
Please see my concerns listed there.
Thanks!
PS- Yes, I am very protective of the LymeNet folks and our docs. Sorry about that.
Posted by Tincup (Member # 5829) on :
While writing this post above, the sources I checked with wrote back.
Basically, they didn't recommend it for Lyme patients.
It was just removed by the moderator. They are fast today!
Posted by Tincup (Member # 5829) on :
For future reference ...
These points from your post were some of the areas of concern and things that are not recommended for our patients to do, especially when requested by someone unknown who has been here for 3 days.
"The online d-base costs $25 for a one-month subscription."
The request to send someone (unknown) information "... based on doctor's letters, medical history, financial need, describe your ethnic background where appropriate..."
Personal information required... "Do you do any civic volunteering, or did you in the past? How many kids did you raise? Any special accomplishments?"
ALWAYS a no-no here- "Be sure to mention the very competent doc that you have, and your faith in him/her. .. If the doc is well known, be sure to mention this."
Self-explanatory- "... fax in personal statements such as credit cards, bank statements, etc."
Thanks for understanding.
Posted by chiquita incognita (Member # 30381) on :
Hi Friends It surely is your discretion to remove any post you do not feel comfy with. I am sorry for any misunderstanding that may have led to the feeling that this needed to be done.Sometimes the way we are perceived in writing is not always what we think it will be. So when writing, we may have one thought crossing our mind but the way it communicates to others may be a whole other matter.
That said, I was only trying to help. I myself received $9K in medical funding from donors listed on the Foundation Center Library's website, at a time when I truly needed it. This was for alternative medical stuff, other than lyme, which also was of a controversial nature (mercury restoration, a hotly debated topic which similarly got pro-docs/dentists in trouble, inappropriately and criminally too, if you ask me). And it got coverage from several of the granting sources, not just one of them.
In our current economy, people are struggling and those of us who are laid up with Lyme, need medical funding all the more.
Perhaps it was not understood by the website staff that ethnic background can be one qualifier in obtaining a grant. To mention that was not to foster discrimination, instead it was to point out that this can be one granting criteria. In that respect, some grantors do the opposite of discriminating: In fact, they are purposefully serving those cross-sectors which might otherwise be left behind.
However, I appreciate your concerns about protecting the identity of lyme docs. Please keep in mind that I am new to these forums, have been insulated (merely working with my own doc privately) and perhaps this was an oversight, yes. I understand that concern. Certainly that statement can be edited out. I am happy to revise the post to your comfort level, if you like, with staff reviewing it and offering editorial comments prior to posting it again. If you wish. That is up to you.
The funding source I posted is very "For real" and has been established for several decades. I think it is sad not to let your readers have the benefit of funding which they may truly need.
Again your concerns are appreciated however. I do not yet know or understand what informs the politics of the anti-LLMD campaign, and I think this is a horrific crime. Let's not make it any less than what it really is. I will learn more as I read here, I am sure. Thank you for your public service and for all that you are doing to help others. The support people offer/find on this forum surely is a much needed service. What a kind and humanitarian thing to do. I surely have appreciated it. Best wishes to all.
Posted by chiquita incognita (Member # 30381) on :
PS I am not sure why it was not recommended for lyme treatment, given my own experience with funding for acupuncture and the almost as controversial mercury restoration treatment which was funded by donors listed on this site. Just wanted you to know that this was what was crossing my mind as I posted. Thank you for your understanding. I also appreciate that you are looking out for the cause, and understand that. Best wishes and blessings.
Posted by chiquita incognita (Member # 30381) on :
Hello Tincup I have given your public message much thought. I wanted to offer you some feedback as a forum member:
A) "There is no good deed that goes unpunished" offered a friend of mine. I stand accused as a betrayer, based on your message above ("Yeah, we I am protective of our patients and our lyme docs") implying that I had intention to do harm.
That is slanderous. My intent was to help people. I also have offered professionally trained herbalist's advice to those who posted questions about this. I offered no link to any websites of my own, never asked for anything in return, and gave freely (and joyously) of my time which to repeat, is trained and professional. Researchers have commented about articles I have written in the past, FYI and several top herbalists in teh country cross-posted my articles to their student's forums. Yet I stand accused as one who tries to hurt others. You took the quotes from my post out of context about how to write and obtain grants above, and stacked them up in such a way as to show me down, painting me in a light which neither reflects my character, my intent nor the message of my original post. This is wrong.
B) I have learned that we can "read" people wrong given certain pieces of "evidence" based on which we draw our righteous conclusions. The more we know we are right, the more wrong we usually are. I have seen this many-a-time, from both sides of the fence, as one who has done it to others and as one who has been on the receiving end in this play called Life. WOrds of the wise.
C) If you truly are interested in "protecting" or "looking out for" your forum members, here are a few headsup.
It is illegal, unprofessional and even unsafe for laypeople to diagnose each other. All over this forum, people are asking for diagnoses, going so far as to post personal test information and asking for lay analyses. While it is impressive how much people know on this forum about test readings, it is extremely not-smart to have lay people doing diagnoses. Even doctors won't diagnose without actually seeing a patient. Many symptoms can "mimic" each other---an actual medical term, that word "Mimic"----and that is where it is dangerous for laypeople to diagnose. And illegal, to repeat.
It would be best to write a forum member directly instead of posting a character-slashing message in public.
Again you certainly have every right to take down any posts which conflict with your policies or interest. Some of my writing contained some oversights, and surely I would hope to learn from editorial comments, such as about protecting lyme docs. To repeat, my oversight was just that, an oversight, but not an intent to do harm. Far from it. As before, I have been insulated from this political dynamic because of working one-on-one with my LLMD but not logging on to read much about what has happened politically.
It is my impression that the staff does not know what is involved in grant writing and obtaining a grant. Judgements were made against me based on my full disclosure about this.
It is my ethic to be full disclosure, as I believe this is to everybody's best interest. If I had omitted information, such as about providing personal bank statements as prerequisite for obtaining a grant (after all, grantors have to determine financial need before granting any application) then it would have been unethical of me. My face was slapped and my character defaced, in public, for the very ethic which motivated my full disclosure. If you had used different words than those about protecting your "Patients"----which they are not, it is illegal to call them that FYI---- then it might not have come across as a slanderous character attack. And a public one.
I have reached the conclusion that this forum is not my TinCup of Tea. I am going to withdraw my membership and not offer any further helpful hints for anybody here.
For the future, please consider what you accuse people of.
To be honest, I could have openly accused you of trying intentionally to blockade your "Patients" From obtaining funding that many of them may truly need. I could have accused you as being Of the Other Side, a Government Agent working Undercover to undermine lyme patients, spy on them and obtain information about their docs in so doing. After all, the warrantless wiretapping is a rampant thing, and anybody doing their research will know that first-hand. But I did not accuse you, I am not accusing you. I am using this as an example to point out just how wrong we can be with our conclusions. And just how mad it makes others when we do accuse them, sometimes rightfully, usually wrongfully.
It certainly is a boon to people to have the support of others on this forum. Thank you for that. Best wishes and good luck.
Posted by chiquita incognita (Member # 30381) on :
Here is my last message.
I would question the source which (told you? Is this for real?) that the Founation Center Library would not be recommended for lyme granting leads.
While I was shopping around for health insurance, Blue Cross itself told me that they are seeing more and more lyme disease diagnoses. This is a sign that increasingly many doctors are treating it, a very good sign. Obviously the illness is gaining more recognition, and more funding.
Further, as said above, I myself obtained grants based on leads from the Foundation Center Library for removing and replacing my mercury-containing dental amalgams, another controversial issue for which licensed practitioners have been wrongfully and deliberately (with a political aim in mind)quacklisted, sued, licenses pulled, you name it. The leads I got from the Library also granted me for alternative medical procedures not usually covered by most grantors. I would seriously doubt the source who told you that this is not a good place for Lyme patients to go. Just a headsup.
Can you post the response from the Foundation Center Library? It would be interesting to see it.
Posted by onbam (Member # 23758) on :
chiquita--could you enable pm's?
Posted by sixgoofykids (Member # 11141) on :
It would be better if this discussion were taken to PM's. I'm moving it to off topic until then.
![[Big Grin]](biggrin.gif)