FROM MED HELP - RE: THANBEY

[CGTMHI]

Teresa Hanbey is the Executive Director of "Hepatitis C Outreach Project". I have personally spoken with Ms. Hanbey and find her to be extremely knowledgeable. Some of you said that she posted something on Med Help claiming to be a doctor.  I have searched through as many postings as I can find in our Hep. Forum and do not see that she has ever made such a claim.  
In addition, some of you are concerned that she is trying to somehow get you to leave Med Help and go to her website.  For the record, she doesn't offer online Forums or Chat areas on her website. A number of you have posted threats and extremely nasty comments such as:

EXAMPLE 1) Concerns re: thanbey:  "Right I've had enough of this lets shoot thanbey. It'll only take 2 bagsey the grassy knoll!"

MED HELP WILL NOT TOLERATE DEATH THREATS AGAINST ANYONE AT ANY TIME!
-----------------------------
EXAMPLE 2)  "...She is condecending, a know it all troll, and quotes clinical studies that only her web site can link to."
------------------------------
How dare you call this woman a "troll"?  Ms. Hanbey spends every single day doing her best to help people with Hepatitis. You are entitled to disagree with her ideas, but you are NOT entitled to viciously attack her in an open Internet forum!
How many of you come here expecting everything to be free and then have the audacity to attack Ms. Hanbey for her $17K salary! I think she deserves 10 times that amount! How long will resources like Ms. Hanbey's & Med Help be around if the very people who USE THEM aren't willing to support them?

Med Help Int'l.  

[Tallblonde]

Finally!  A voice of reason.  Please review the postings from PeeBee, Revenrie and TnHepGuy for more examples of abusive behavior toward Theresa Hanbey.

Thank you for stepping in.  I hope it makes a difference.

Susan

[Revenire]

This is the site >> <a href="http://www.womens-health.org/0javascripts/dropinnav.htm?/policy/Coalition/whrcmembers.htm">Society for Women's Health Research</a> where thanbey WAS listed as a doctor (and a search on Google comes right up with it too -- they have been contacted too):

Society for Women's Health Research
1828 L St., NW Suite 625
Washington, DC 20036
phone: [phone]
fax: [phone]
e-mail: [email protected]

This is where thanbey was listed as a doctor. I called them today (all by my little self) and had it changed to reflect her "real" title: MSW = Master Sophist & With-money-hungry-eyes.

[CGTMHI]

To:  Tallblonde:

We hope it makes a difference too, otherwise we'll have to take further action and WE HATE to have to do THAT!!

Cindy

[mikesimon]

I want to amplify the idea of contributing to this board. I wonder how many of us have even thought of donating here and I think it's clear that this board is not soliciting or dissuading or persuading or advertising anything. It has provided a forum for us patients and support people to exchange ideas, information and experience as well as give us the opportunity to seek and get support. Life ain't free for the most part. Mike

[cuteus]

don't be surprise if your comment dissappears as mine did.  I guess there is a little censorship here too.  The dissenting posts are removed and Tallblonde's remain.  Disheartening to know this.

[twotells]

Thanks for ruling out disrespect on the forum.  Some comments, even by people I value, were over the edge.

MedHelpInternational and Teresa Hanbey's organization are hardly in the same league.  MHI has been and will continue to be a valued resource.  MHI's fundraising is tasteful and appropriate.  MHI is up front, doesn't misrepresent the facts, and doesn't promote itself in a self-serving manner.  I will continue to enjoy MHI as a resource.  The director of MHI may actually deserve $170,000 in salary (10 x $17,000 as you suggested).

Thank you for providing this valuable resource.

[jg2001]

You should be proud of your accomplishment!  You should be proud to be able to afford to donate or even consider to donate.  This disease, obviously does not care who you are, female, male, age, creed, religion, financial status, grandmother, father, sister, mother, grandfather, or WHOEVER YOU ARE!  It is people like you who should be congratulated for your contribution to research!  There are people who have money that could be donated for research and choose not to.  I applaud you on your compassion and SELFLESSNESS!

[Southernboy]

Hi all,

I don't usually get involved in these discussions but I just had to say;

Lets just drop this and get on with our real business....Helping each other get through this horrible disease, and horrible treatment if that is the route we are forced to take, each in his/her own way and according to his/her own beliefs.

Remember, RIBA RAGE EXISTS.

Please,
Steve

[twotells]

Your post deserves to be repeated 4x.  Dave

[nurse12hr]

Personally, maybe I am wrong, but it seems thanbey stopped posting some time ago.  You are all keeping this debate alive long after it should have died a natural death...

I don't agree with a non-treatment approach, but I do appreciate the chance to read about different opinions.  

Of course, not being a "patient", just a spouse of a patient, I may not have a right to post, some here have suggested in the recent past.

[Nann]

This criticism of eachother has to stop. This is the legacy Thanbey has left with us.  And if she "hopes this helps" she is mistaken.  We all have huge issues to deal with besides the disease. Personally, I have a 90-year-old mother, and an alcoholic, mentally ill brother.  I have my sweet son being shot at every day in Iraq. But it still hurts to see well-meaning people sniping at eachother. Cindy, I wrote my views personally to the web site for your attention.   Mike, I was glad Dallas opened up about contributions as it will make us all think of what we can do.  Tallblonde, cast the first stone.  Codependence is not necessary in Thanbey's case.  She is perfectly capable of coming down to earth on her own.
    This is such a great group of human, caring people and everyone has a right to be territorial. Let's be reasonable though.

[thanbey]

I receive no salary.

I have in the past, and anticipate the possibility in the future, receiving  payments (hopefully a salary one day) from grants that permit that expense. The dollar amount that is bandied about hardly compensates for the costs of doing this.

HCOP has, in the past, had employees who were patients re-entering the workforce. We no longer have the funds to do that. We rely totally on the volunteer efforts of those who come forward and those I can twist the arms of, like my husband.

No one at HCOP currently receives compensation. The travel expenses are used for me, speakers and others participating in cross country projects (some DO pay their own freight) This has allowed patients who otherwise could not afford to go to a conference to participate. We have funded costs associated with self help efforts, community outreach and community awareness, meetings, advosiry boards and the like and I hope to continue to do this in the future.

We have also funded, on a very small scale, participation in research, including working with a team at the NIH in neurovirology research on "brain fog" in hope of finding help for patients.

My comments regarding HCOP have been largely in response to misrepresentations and misstatements. I have initiated almost none of the discussion about HCOP that some have critisized. For example, we have not yet even filed our 2003 IRS reports because our fiscal year ends on March 30!

When the mistake on ANOTHER organization's website listed me as Dr., I took immediate steps to have that corrected. I believe it has been corrected. I am not, and have never claimed to be, a medical doctor. EVER. Likewise I have no authority, control or responsibility for any message board anywhere. I have no power to ban anyone from anything, even from HCOP's site. I hope I never have to put software in place to do that.

I am delighted that some of you have contributed to HCV research. I agree that Medhelp deserves every dime raised to help defray the costs associated with this site, but whoever you choose will put the donation to good use, I am certain. Give generously, please.

HCOP's site is not primarily a fundraising site any more than this one is. It is primarily an information site. I can't understand the kafuffle about this because even if it WAs a fundraising site, you have a choice about whether to donate or not. The site is there to use for free to anyone who wants to use it. There are no ads and there are no products. NONE.

And while I did not initiate MedHelp's involvement in this matter I am very glad Cindy contacted me about the concerns that were raised to her.

My intention is to continue to offer information here and elsewhere. And, I have and will continue to take the research offered here and put it into the database on my site for easy, future reference. Use it for that purpose or not, as you see fit.

Please seriously consider sending a donation to MedHelp. Since you have benefitted from being here, why not support the costs associated with this service? It's only fair.

peace,

thanbey

[hepcbilly]

You dont need these peoples permission to post. Dont feel intimidated. This is for you, me, my wife, your husband, was not founded or paid for by any of these current folks on treatment. Rules were made long before current posters came here.Is this what treatment does to folks? or are they like this to begin with?

[twotells]

As long as I've been here, there have been family members here looking for support and information.  Not one of the persons who took exception to Thanbey has ever suggested that family members don't have a place here.  This is a wonderful forum for all of us who are looking for support and information and to help eachother.  Take care,  Dave

[honey1616]

Hey there Lady...Good to see ya!  I don't think this whole "thanbey situation" is really anyone in particular taking up for her because I totally agree with your comments..That she can do this all on her own.  Its a matter of 90% of us are just tired of this being the topic day after day.  We can't really move on here and get to the real reason why we all come here in the first place.  I would like to see for the 10% that want her to live on...to email her because we just really don't care anymore.

[Luke307]

I had a funny thing happen to me today. I had kind of an off day and was shuffling very slowly across a grocery parking lot today when I heard some little kids in a car  yell " hey Dad ,hey Daddy, and then hey old Grampa" when I looked at them again they giggled and hid. They were so cute I just had to smile. I'm not much over forty!
Debbiedoo, are you still out there Hero? You were nice to me when I first posted on this board,and you're going through this alone,too! You must be too busy to post much taking care of old folks huh? Hope you're doing well.
Almost time to feed my little friend.(whistle) "Here boy, come to Papa Come to me,Dragon I have something real nice to feed you!There you go Boy   Hope everyone has a good evening
Luke

[DownThisRoad]

This teresa hanby thing has gotten out of hand.  I keep seeing all this **** on this forum with her defensive postings and others on this forum posting back to her and keeping this 'agree to disagree' conversation going.  This is a medhelp.org forum and should be viewed as such.  I'm actually a little frustrated to see this squabble everyday and back and forth stuff on the same old agree to disagree subject now for what seems like 2 weeks.

I was one of the first who posted to Ms. Hanby after I saw that she was coming on this forum and posting.  I posted to her and everyone regarding that I realized that she was from another forum/website and that I had received good information from her writings and on healthboards site.  I'm not going for alternative treatment, so the alternative treatment deal doesn't interest me right at this moment.  I've seen her website and her organization's material now for the past year. I use her website the same as I do anything else. I gather the information that pertains to me and that I need to know and actually if the information doesn't suit me (as in alternative ways to treatment my disease) then I don't use that information and I don't comment on the good or the bad. I surely can't find the energy to get wound up with her information or anyone else's. I do understand that Teresa has dedication with research and publishing information regarding hepatitis C which as we all now is far and few between.  Maybe someday this will be wider publicized and can be a disease that everyone will be able to know about and know about and this can be a someday 'preventable disease'.

This subject regarding she said/he said is frankly getting quite boring. I come on this forum and I choose this forum so that I can speak to others regarding hepatitis C and treatment (medical) treatment of hepatitis C.  This forum has always been wonderful for me and I appreciate medhelp.org and the members of this forum immensely.

Let's get over this other deal that has been going on and now involves the administration of this forum. Take the information that you can use and don't get involved with information that is not useful for you.

This whole subject is like 'beating a dead horse' over and over again everyday.  Frankly with my situation with the stress of this treatment, having this disease and having to continue to completely strive towards reaching my goal with my extended treatment.....I don't give a damn who gets paid for what and who peddles different ideas. I choose to do what I want to do with my disease...plain and simple.

I love and really depend on everyone here and don't want to loose this continued solid information that we all share and that I can gather and hold on to from everyone here who is doing the same treatment that I am.

[Luke307]

Sorry about that goofy (Comment to;)I posted ,Grin

[DebbieDo]

Hello there,
Yes, I'm still out here....reading daily, things are sort of different here, not too much posting about the subject on hand....sometimes, its like a chatroom here....I will do #12 on Monday......I have alot of fatigue, but, im a strong individual.  I work daily, and its not easy, especially on Tues after the shot.....last night i went to bed at 7 and slept til 7 this morning with numerous potty trips.....lol....The fatigue and the nasil dryness is about all the sides i seem to have that bother me.......im anxious to see what the 12 week bloods results will find .......sometimes i get a slight pain in the liver, and i think the dragon is slowing dying......i hope he dies.......I'm a 1b so we will see......Thanks so much for remembering me, i appreciate it very much.....YES, im at the alone, can hardly believe its been 3 months now......I live in southern CA and the weather has been wonderful here this past week, i love the warmer weather and appreciate it more now.  I seem to always be cold.........Well, take care and let me hear from you again.....PS, i feel 20 yrs older since starting tx

[DebbieDo]

Well said........im tired of all the BS these past couple of months........I need info to help me deal with HEP C/tx....I dont need to hear everyone  complaining about everyone else's issues......Let's stick to the subject at hand, shall we?

[Luke307]

You will be clear as a bell at your test. I'll be slugging for you. I live in Wyoming and it's been a very cold winter, but nice and sunny today.
Luke

[harley dude]

I had a long post written out and changed my mind, but after reading you'll posts I'm going to say sort of what you'll are saying, when I found this (use to be very infomative HCV forum) 10 months ago I got so much attention and support, love when I asked my very first question I felt better instantly and it was from very concerned and nice people like Galen, Indy, ComDude, OHC, Mike, GIPA, Eat Beef(or something like that), Mr. Bill, New Sojourn(hash in amsterdam,I'll never forget when she use to say that in most of her posts lo) and I'm sorry for all the oldies I've forgotten but you'll were great-I really don't think I could have gone this far without you'll and I really mean that.It was nothing like all this **** that's going on in here now. It's like a stupid AOL chat room now. I'll bet there are alot of newbies out there looking in and reading all this stupid stuff and are high tailing it away from here(do you blame them) and are missing out on a great forum that could be helping them and supporting them tremendously. I'll say it again if you want to insult, hurt, argue start trouble ect. - "Get each others E-Mail adresses, phone #'s, home adresses and do it that way, you'll are scaring off alot of people with you'll stupid **** that relly need help, I guess I'll get my but chewed out for this, but I just hated to see a once (great, helpful, supportive, informative forum turn into a AOL chat room. All you'll newbies "Please don't be afraid to ask a question(any kind of question you want- we will answer you and support you like you wouldn't believe- so come on in Newbies were are here for you. MR. HARLEY DUDE

[Nann]

You are in So Cal.?  I'm in L.A. you know where that's at. The weather has been gorgeous.  And I am constantly cold--so it is great.

[lackalustre]

some of you have asked what you can do in the political arena for HCV.   there is a new bill that is being looked at in congress but it needs more careful evaluation to see that we dont get tacked onto AIDS agendas.   it has long bothered me that AIDS research is getting MUCH more money than HCV research when many more americans have HCV.  many of us in the prime of our lives are devastated by this disease and its treatment.   heres a chance to write to senator warner and your own senators too and voice an opinion.  please read the message below from some fellow heppers:::
    This is from Tricia Lupole>>>>>>>>>>>

Hello my fellow Virginians and members of the movement for hepatitis c
awareness.

This is Tricia, National Coordinator for the movement.

I'm writing you today to ask for your assistance. Most of us in the movement
are concerned with the proposed funding provided for hepatitis c prevention
and treatment in the national acts now before congress.

We feel there is not enough safeguards to make sure the funding goes to
Hepatitis C related awareness. We feel there is not enough grassroots
participation either.

One of our concern is the act calls for Hepatitis C and the 90 million we
receive, to fund HCV/HIV confections.  No other disease is slated for
surveillance.

As Most of you know, Hepatitis C will be placed underneath AIDS management in
the Sexually Transmitted Diseases (STD) branch of the CDC. Despite the latest
10 year study concluding hepatitis C is not a sexually transmitted disease,
preparations are underway to merge. All awareness for Hepatitis C will be
available only through STD clinics.  

The Hepatitis C epidemic is discovering what was. In 1988 242,000 Hepatitis C
infections were reported annually. These high figures were reported
throughout 1980s.  Since 1989 and mandatory heating or washing of blood products, the
annual number of new infections had declined more than 80 percent by 1998. This
follows more efficient testing procedures for donors with tests that existed,
but manufacture patents and FDA delay, prevented distribution.  Universal
precaution guidelines became effective in 1996.

We feel this merge will not insure public safety, helping to identifying the
80% that do not know of their infections. This merge will not avert what is
happening now with new transmission methods discovered yearly. This is happening
because Government's focus for research, treatment and prevention has been
centered on lifestyle choices as the only means to educate.

As you and I both know, hepatitis C has many issues, veterans, prisons,
mental health, the lookback program over bad blood issues, just to name a few. We
have concerns the act does not address many issues and fear what will become of
our funding given the history of the AIDS industry. Without tighter
safeguards insuring this funding will go to Hepatitis C monoinfected patients as well,
we cannot support it.

We have written a consensus statement and requested through Congresswoman
Jackson-Lee, a Government Accounting Office investigation into the Hepatitis C
epidemic and what will be best for Hepatitis C patients.

This is where we need your help.

Please read this statement and if you agree, go to this link
http://congress.org/congressorg/webreturn/?url=http://warner.senate.gov and email Senator
Warner. He is head of the committee where the act resides today.

We believe through a thorough investigation of the GAO, Hepatitis C will not
be lost in the mixing bowl it is headed for and patients will benefit greatly
by focusing Hepatitis C funding on Hepatitis C.

Thank You for your help and hope to see you in DC, June 11,
http://hcvets.com/forum_public/hma/disc.htm

Respectfully,
Tricia Lupole
National Coordinator
Hepatitis C Movement for Awareness
540 248 7324  

Attention Senator Warner:

CONSENSUS:
The Hepatitis C Movement for Awareness position statement on the Hepatitis C
Epidemic Control and Prevention Act

Government, at all levels in the United States, is doing far too little to
combat HCV. Conservative estimates place the costs of lost productivity and
medical care arising from chronic Hepatitis C in the United States at over $600
Million annually and such costs are expected to increase in the absence of
expanded prevention and treatment efforts.

Legislation was filed in the United States Senate on May 22, 2003, "to direct
the Secretary of Health and Human Services to establish, promote, and support
a comprehensive prevention, research, and medical management referral program
for Hepatitis C infection."

Senate Bill 1143 & Congressional Bill H. R. 3539 (the Hepatitis C Epidemic
Control and Prevention Act) is sponsored by Rep Wilson, Heather [NM-1], Senator
Edward M. Kennedy, of Massachusetts, and Senator Kay Bailey Hutchison, of
Texas.

While the Hepatitis C Movement for Awareness enthusiastically supports most
provisions of the act, we feel there are several provisions in the act that
raise serious questions. Among them is a provision that would link Hepatitis C
with HIV/AIDS and Sexually Transmitted Disease (STD) programs. Hepatitis C must
be addressed separately and apart from HIV and must not be paired with HIV and
STD. A recent, 10 year study has confirmed, Hepatitis C is not a STD.

In the act, the recommendations and guidelines of the National Hepatitis C
Prevention Strategy "provide a framework for Hepatitis C prevention, control,
research, and medical management referral programs." However, the National
Hepatitis C Prevention Strategy states that "the most effective means to prevent
HCV infection and its consequences is to integrate Hepatitis C prevention
activities into existing clinical services and public health programs, such as those
for the prevention and treatment of human immunodeficiency virus
(HIV)/Acquired Immune Deficiency Syndrome (AIDS), sexually transmitted diseases (STDs) and
drug use."

Additionally, guidelines for allocating grants and funding to organizations
and entities professing to provide "education," "training," "outreach" and
other services fail to define the qualifications those organizations and entities
must meet to be eligible for funding through this Act. Instead, the guidelines
are proposed to be set up by the Secretary of Health and Human Services
(HHS). We feel those qualifications and guidelines must be defined in the act and
the Secretary should be responsible for enforcement procedures.

The $90 million being proposed by this act must be spent in the most
efficient and effective manner to make sure the Act serves people with Hepatitis C.
The Act would allow the Secretary of HHS to "award grants to, or enter into
contracts or cooperative agreements with states, political subdivisions of states,
Indian tribes, or nonprofit entities that have special expertise relating to
HCV, to carry out activities..."

"To be eligible for a grant, contract, or cooperative agreement..., an entity
shall prepare and submit to the Secretary an application in such time, in
such manner, and containing such information as the Secretary may require," the
act states.

The Hepatitis C Movement for Awareness, after reviewing the proposed Act,
concluded that the guidelines for all applications must be clearly defined in the
legislation, and voted on by Members of Congress. Defining these guidelines
must not be left up to bureaucrats in HHS.

We also have serious problems with the proposed make-up of a proposed "Liver
Research Advisory Board." In our opinion, as currently being proposed, there
would be too little representation from the grass roots HCV community and
private medical sector.

Overall, however, we support act, but feel sponsors should have reached out
to a broader base of People with Hepatitis C in the United States for input on
developing the legislation. There are, unfortunately, several provisions in
the act that we feel must be amended before we can recommend that our elected
representatives in the108th Congress support of the act.

We have asked several Members of Congress, including United States
Representative Sheila Jackson Lee and United States Representative Chris Bell, to seek a
study or investigation of Hepatitis C by the General Accounting Office. This
study would help Congress better understand the Hepatitis C virus and allow
lawmakers to develop effective and cost effective legislation to "combat." There
is no reason that plan cannot be achieved through amending the act. The
Hepatitis C Movement for Awareness asks that all action on the act be put on hold
pending the GAO study.

We are asking you, Senator Warner, support this measure to insure all
Hepatitis C patients needs are met.

Respectfully,

Your Name