This is a google command. Judging from the context, i guess an accelerator is anything that speeds up the search process or the transfer of information that you want to go out. tag words and html used to the tools i used as "accelerators." if i am wrong , please correct.

This post is revisiting the orgs. It was probably about a year ago that Todd started the infamous thread about the orgs and we tried to organize to develop a database. patients need help when they are advanced, but let's look at where we are a year later.

there has definitely been progress made with MJFF. i would like to think that debi, and others, are really getting to know the illness, thru us. The fuss started over this pdonlineresearch being announced as coming and that patients could read it but not participate. That poor first guy who came in. But the forum has always been a tough place in it's own way.

Then we were surveyed, and i' m not sure if it was used, no results announced that i know of. so here we are ..with it online. i tried to register, thinking i needed to. now i see we are permanent guests, which i resisted at first, but revisited. It is enough for now, i think watching and asking questions is good. And appreciate the efforts.

But i am very disappointed at the prevailing attitude by researchers that patients cannot be at the MJFF therapeutics conference. A group of us, who have been here for 10 years and are very knowledgeable and advancing, should be there. The reasons, in my opinion override the researchers assertions that patients interrupt with questions and slow the conference down. If that is true, the wrong patients are in attendance.

we let our posts out in here dripping with paranoia and emotion because this is a forum set up for those emotions and providing support for them. But we still clean up real good and know how to be professional. And we have a need to know the very latest, hot off the press, or get a DBS.

The orgs have yet to recognize a patient group, no, PLM is not a patient group - it's a business and things are getting very interesting as they set up a "new kind of research." But they are not a patient group, patient advocates don't get to speak for themselves quite often, most of the time, as portrayed in a meaningrful analogy by jackie christianson. The pipeline projecct has been recognized by two orgs and heavily supported by PDF, but it has never been given the credit for how much advocacy it has done, because we all have advanced pd and are not easy to work with.

Yet, i ask you, what other patient advocacy group has met weekly for phone conferences for 7 years and still has active founding members. Most of us don't blow our own horns. We support others with our work. i shared everything with this forum.

We are qualified and should be viewed as visual models, with everything going physically with pd and mentally with meds. We are who you are meeting about talking about- trying to help? we know what trials are going on, what is preclinical, we know the pipeline. we know the insincerity level in a person's forecast. by the way did mike fox know dr. oz was going to say that about skin cells? that was awkward and he predicted under ten years. not a given at all .
i'm posting before i lose it and will continue.

paula

starting off quickly saying that i am not asking that all the pipeliners [ and no one else] be permitted to attend the therapeutics conference.

i am saying that we are a group of advanced patients who have each come into our own, and have remained loyal in spite of much criticism and no vote of confidence in the community. we have multiple issues, have never been big stem cell advocates, and changed the way clinical trials respond in research.

Amgen just felll into the net we were weaving to watch out for just that.
But credit given...heck no, not all patients are advocates or activists and just d on't pay
that much attention. that's an individual choice. and the orgs? they jjust don't when it feels really important.

i like many in the orgs and have called them friends. this isn't personal at all. but i need to point out that they are slow, they slow things up too. ironically, what we are told we do,

i am not trying to put debi on the spot. i wouldn't post this if i felt she could not handle it and she can. i've been trying for two nights, lost some here, then moved to email. i'm hopelessly careless and clutzy now. i need to know if there is reason to not get a DBS. I want to talk about this with those who know what's going on both here and overseas.

A group of us met in mgh chat ten years ago. that group included tena, peg, [she mostly missed mike as she wasn't in good shape then i don't think] but he knows her know. mike talks about all the good things that happen to him, but he rarelly mentions the people he met online like it or not , my inspiration from that period still drives me, altho it is not mike generated. In my eulogy, i think it needs to say,
"Nana had the most peculiar habit of talking to michaeljfox online and emailing him. She finally recovered after he went two years without answering. this is parkinsonian behavior, but i was making progress and i kept him updated whether he liked it or not lol.

i know othrs there might have gotten a chuckle rfrom the emails finally, there really isn't anything more to say. i'm glad he is positive, have a hard time relating, as i do with most things these days it seems.

truth is we all have done as much as we could. since i am saying this publicly, i will not engage in a struggle over this upcoming conference, i like having debi here and who would have guessed she would be here. i trust debi.

welll we talked about a video, a few faithfuls helped, it could have been a multi group cause but it wasn't. with their patient collaboration, i am not sure it remains accurate. this wasn't mentioned to me. again, patients are very connected, we aren't just going to give up our community as we know it. this needs some sensitivity.

ok i have said enough. i ask all of the orgs to let patients at the table. you would be surprised at how well we handle ourselves. pd and med deblitation need to be sitting at the conferences, as they certainly can be accelerators.


thank you, maybe in another year we.......anyone care to finish that sentence?

tired , will fix typos later.

Paula,
Are you talking about the Therapeutics conference in New York in Sept/Oct?
I am thinking of attending and I posted a message here assuming someone from this forum would surely be attending. If its the same one as you mentioned, I didnt see anywhere in the application where it says its only for scientists. I am surprised to hear that it is a closed and an exclusive conference. Please let me know which conference you are taking about, I will do my share of complaining to them. It may not change their minds, at least makes them notice the population they are working for and ignoring them at the same time.

thanks
Girija

hi girija,

you will qualify as a researcher and lucky for us that you do. this is the third one and the MJFF policy is, as far as i know, in effect. Patients should not be in conferences with high level scientific language going on. IT's hard to explain that those of us who do literally daily, even tho we don't understand the chemistry, daily read scientific articles, can follow it enough to get the gist of it. I'd sooner drop dead than interrupt with an annoying question. it's a priviledge; and should be respected.


but did you say you filled out an application? i don't apply for any conferences that i have attended. that sort of speaks for itself. They also need the slots for the scientists, but we are scientists too and have to take the risks. i see some of us, not all, as qualified.



thanks girija,
paula

Have you read the oath that doctors must state before they receive their doctorate M.D. degree. It reads very much like a Mason or Knights of the Columbus oath. It is not just the Hippocratic Oath, but the promise to work "with their brothers" and to never betray them.

Although I chose not to advocate, I admire your efforts. I feel as though the patient advocates have bent over backward providing revenue for the Parkinson's foundations, only to receive a plaque and little credit for their efforts. Many drag their entire family into the process, and get credit on paper but little credit for their input. Many have lost their partners, who were trying to make a living and still have the American Dreams, and were tired of carrying the anchor their PD spouse had become around their neck .

I have a suggestion for a new Parkinson's emblem. The PD tulip surrounded by the words, "Don't tiptoe through the tulips!"

Miss. Vicky

Well, in my view, NOTHING is going to be advanced for Parkinson's patients until we get loud, demanding, and in the way. Nothing. I mean, we're worried about decorum or being threatening with our questions, when the researchers don't even want to look at us, let alone listen to our experiences and concerns???? Whose interest is any of this work being done for anyway? The lack of respect and even basic humanity is just appalling.

Doctors from the period where AIDS patients really united have related how they were just barely able to organize all the information their patients were giving them, so much was coming from the patient side. AIDS patients demanded a lot, they were politically totally abrasive, and had no worries about being polite. They didn't get a cure, but they did get the possibility of not dying immediately and possibly having a life still. But it took civil disobedience and basically a major power struggle with the status quo to get that.

I know the model for our disease is different - we have less in common, our disease is slow, we tend to hide and be ashamed, and we're not young people dying rapidly....But this whole thing is inescapably political, inescapably about money, and we've been jerked around a whole lot.

When I hear about endless conferences with "ideas being brought to the table", and possibly considering a tiny bit of patient input, or tolerating some patient observation - at this point, I am ready to lose it. We don't have that kind of time and the whole process, the whole model is seriously, seriously broken.

Yes, I know there are many well-meaning doctors, researchers, even pharmaceutical guys and god bless 'em. But no matter how good their intentions are, or what fine people they are personally, they need to start facing the fact that the whole system of clinical trials, of collecting data and evidence, and even of diagnosing and recommending treatment, has been greatly, greatly compromised over the past decade or two. No matter how good individuals are, they are serving a system that is not working for us to say the least, and to be more honest, is basically corrupt.

We should be storming the gates of Amgen and demanding that they at least release the licensing rights to GDNF, and restore compassionate use to the people that participated. At the very least. Instead, we kind of collectively say, "oh, well..." and move on???? We're worried about stepping on researchers' toes? Why? How does that possibly serve us, unless we want a few more dopamine agonists with ridiculolus prices in the world, and call it a day.

It has not been good enuf, the lack of progress, the lack of transparency, the lack of urgency, and the underlying greed behind the whole thing. There's no way to be polite about it.

It's hard to organize. I don't know how. But at this point, I have had it with negotiating within the existing system. I, for one, would be interested in joining any initiative that demands some answers, that proposes entirely new models, and steps fearlessly over all those in the way. I don't have time for or interest in anything else.

From Impure Science by Steven Epstein, which I found at:
http://www.escholarship.org/editions...;brand=ucpress


..."As treatments activists followed, or contributed to, the debates surrounding AZT, they also devoted increasing attention to new drugs, such as ddI and ddC, that appeared likely to be the next additions to the therapeutic armamentarium of HIV antivirals. Since these drugs were chemically related to AZT, few thought that any of them would be an ideal therapy; but nothing else was anywhere near approval, and ddI and ddC at least showed promise. Perhaps they could provide alternatives for those who couldn't tolerate AZT's toxicity or for those who, over time, had stopped benefiting from AZT. Or perhaps some combination of these nucleoside analogues would prove more effective than AZT alone. Throughout 1989 and 1990, as AIDS treatment activists pursued the approval of these drugs as well as others that treated opportunistic infections, they became ever more enmeshed in the minutiae of clinical trial design—a set of topics that, increasingly, they would debate face-to-face with researchers and officials from the NIH and the FDA. This direct engagement with the terms of clinical research would both establish the scientific credibility of the activists (or certain of their representatives) and ultimately alter the pathways by which specific treatments came to seem credible in different quarters.

As with the parallel track initiative, a turning point came with the Montreal conference in the summer of 1989. ACT UP/New York had distributed an AIDS Treatment Research Agenda blasting the ACTG program and detailing the activists' demands: more compounds in clinical trials, an end to placebo-controlled trials that required "body counts" to prove efficacy, greater access to clinical trials by all social groups affected by the epidemic, and more flexible protocols with broader entry requirements. Susan Ellenberg, the chief biostatistician assigned to the ACTG trials at NIAID, recalled seeking out the ACT UP/New York document in Montreal in response to her own curiosity: "I walked down to the courtyard and there was this group of guys, and they were wearing muscle shirts, with earrings and funny hair. I was almost afraid. I was really hesitant even to approach them. …" But after picking up the document, Ellenberg quickly found herself "scribbling madly in the margins." Though most of her marginal notes reflected dismay at activists' failure to understand, "there were many places where I found it was very sensible—where I found myself saying, 'You mean, we're not doing this?' or 'We're not doing it this way?'"[51]

Ellenberg brought the ACT UP report back to Bethesda and shared it with her colleagues in a working group of statisticians who had been meeting to discuss challenges posed by the AIDS epidemic. "I've never been to such a meeting in my life," said Ellenberg. According to David Byar, the chief of the biometry branch of the Division of Cancer Prevention and Control at NCI: "I think anybody looking at that meeting through a window who could not hear what we were saying would not have believed that it was a group of statisticians discussing how trials ought to be done. There was enormous excitement and wide divergence of opinion."[52] Soon afterward, with Fauci's consent, Ellenberg expanded her Statistical Working Group by inviting representatives from ACT UP and other community-based organizations to participate"....

thanks vicki, and you've had the nicest things to say lately. i emailed my friends after listening to the news and said,"forget everything i said, the world is so scary that i think we should become.....optimists." of all things.

it's the only way there is if you want to survive. giving it a try now please refer to me as paula -ana, which is close enought to pollyanna.

sorry if i confused you vicky, buy there is some real testing going on.
we can't talk about the bad stuff anyway. one week all postive statements....no too long? we could have a contest forum wide..who can collect the most positive statements in 24 hours and no negative commrnents allowed during that 24 hr period? manipulation? how would i know...lol escaping reality might be the preferred exit. the sky needs to take a deep cleansing breath. Cable tv tone it down, mainstream channels tell the truth at least once a day,you know, what you learned in Sunday School.

i could probably break a few habits by talking positively for 24 hrs. i'm extending the challenge into your homes....

paula-ana

Well said Fiona!!!!!

Activism to me means active and what remains for the cure of Parkinsons and Als as well as many other diseases is precisely that ............becoming active.

Billions are effected the world over and yet we still discuss whether we should be angry enough to have a say in our very lives or remain............talking.

Cooperating is not going to work and neither is sitting and waiting for MJFF and his organization to find a cure.

We have to take the initiative and cure ourselves. No silly slogan is going to make people care only the fact..............and fact it is that one day they or their loved one will definitelly be a victim of one of these diseases.

Bringing it home to roost so to speak is all we can do and while we have the web what better way to make it be an instrument for good rather than what it is now.

If Tena can find AArdvark and he comes here surelly we can find our own home on the web to make the change we all need.

I love the thought You want a cure than go for it.com

just seeing yours fionia, i seem to cry much easier these days but for many reasons [remembering my vow just two minutes ago] but i cry the tears of a smilie face who brings sun shine to Florida.....Fiona, which grows the flora and fauna in Florida Fiona. happy times happy tears as i begin 24 hrs of potential optimism. what the heck\but not before rating your posts above with my mystery symbol - you can't see it, but it means as good as it gets.

i just wish we could save afew steps and just whoa - hard to remember the optimism but it could be fun. Funny words, fun with words. I wishyou all love and i'm going to go get that bobby darren dvd,

totally pulling your leg and am smiling - for 24 hr? what do u think? or juat ignore it i'll get over it
paula -ana..lol