Wow TEna, you are tough!!!


Mike is in a unique situation. With his star status, he must be on guard against those who would use his notariety. How many of us have raised $140 million for research??? We all are forever in his debt.

My MDS told me that they spend half the day bringing up patients "to speed" when when patients are included. This severely impacts the time available for meaningful discussion. I think given that mindset, professionals do not "hear" us. DO I have an answer to this? No, I don't.

PErhaps if patient advocates could have scheduled question periods???
A perfect time for the professionals to take a "potty break".............

Ceregene did not make its endpoints and the Cere 120 gene therapy trial was abruptly canceled. MJFF made a valiant effort to keep this trial moving quickly after the GDNF failure.

One of the areas in which many of us feel we should be involved in is the process and rationale of setting those endpoints. I was never as excited about neurturin as GDNF because i was told from the begnning by a researcher I trust that it wasn't as good as GDNF.

We know that some people are helped and some aren't - so how do you set endpoints? Doesn't the criteria need to be modified for certain subtypes? That's what collecting patient information is all about - finding subtypes, bio markers, what could work with one but not the other.

I think direct communication - questioning and answering - of patients is imperative in developing these subtypes. Lots of patients - not just the few they see in practice, if they even are in practice. They are in labs, with no contact with patients most of the time.

Are you aware that most of the Parkinson Udall centers do not have patient clinics? They don't see patients.

I'm not ungrateful for what MJFF does; I am tired of being left out of the process as one treatment after another FAILS. I'm tired period, but still forcing myself to try to come up with a way to contribute that might lead to a success.

i guess i just won't anymore. I'll just say thanks and let them do all the work.

paula

dear charlie,
I being born in the midwest -USA
actually in missouri our nickname is the "show me" state
their is a greatly humorous quote that fits -
so too this is my Answer!

I never did give anybody hell. I just told the truth and they thought it was hell.
Harry S. Truman

Perhaps those with connections to researchers could inquire how THEY think patient involvement could best be incorporated. They need this, because as we all know, PD is so different for everyone and probably no one drug is going to be "the" drug that fixes all PDers. They need the sub-set groups... in fact, now that I think about it, one neuro we went to insisted my husband get tested for the PARKK2 gene, told us he needed to know this because in his (we found out later, limited) experience with PD, inherited PD did not respond as well to the traditional meds as idiopathic PD. We did not know this...and this is the type of info. these research guys could use.

Plus, I agree with Chasmo, I can see terrible bog downs with the wrong kind of patient involvement, myself included...so some questions that, if addressed, might help bridge this chasm, are (IMHO):

-how can patients best help the researchers? ask THEM that, they surely cannot possibly respond that patients can be of no help whatsoever-in other words, there is SOMETHING or SOMEWAY we can help them, let them tell us what it is (doesnt' mean it'd have to be done, we just what to see what their idea(s) is/are on this issue)

-what kind of input, and in what format, could they best use?
(there is already some of this on patientslikeme.com, maybe something like that)

-could patients respond to some of the points raised in the upcoming online discussion we are currently excluded from? Maybe not in a live chat, as an active participant, but could we post questions that could be answered later, at perhaps a designated time? There are probably many folks who would pose similar questions, and they could be combined so as to be as efficient as possible.

There are others, but these are my main ones. I do think it would be interesting to hear from the researcher's directly how we could best help them. Perhaps it if were their idea...as the saying goes.

lfac,


I agree and have written to MJFF twice and MJF himself once informing them that we were ready to collect information and asking what they might need. This isn't something that one does overnight - that I understand. I received a reply from Katie Hood, thanking me for reach out and asking that I keep in touch as we develop our project. It was taking shape almost exactly as theirs was..great minds. I'm not sorry they are doing it......but no patient participation is just not cool, not acceptable.

I called Bill Bell, from the Northwest PDF who had concerns of his own , gave plenty of word glue to help me from becoming "unglued." [my terminology ....truly i am interestingly medicated..]..i have so much i could say about how my mind works and the various connects and disconnects within my own flesh.

The fact that patients are not up to speed is easily manageable. Guidelines could be established to keep patients from asking irrelevant or unnecessary questions. Patients would need to follow these guidlines....or not be able to participate.

Bill asked about a patient forum where these people could go to get patient perspective. Well that is what we already are but even more so with what we are trying to develop. But professionals are not going to participate in ours when FOX is doing it and I don't blame them.

So - We could join their research project and read about the research discussion as permitted by MJFF and start am email listserve asking questions about the discussion that pertain to something that a patient could add information about. Researchers should be questioning patients all the time. Email would be after each discussion and assistants or grad students could be appointed to respond for the researchers if possible.

We could put together that global email database beginning immediately so that these discussions can be joined by as many pwp the world over. Discussions are held; we get to read them; we are given an email listerve method of communication that includes all in the discussion and ask questions throught the list. We expect to be answered.

by the way, Bill Bell is a good friend to pwp - there's no better. He will help us do this if he can.

paula

it is unfortunate that the introduction to this valuable resource seems to scream, "Patients need not apply!" evoking some understandably negative responses from dedicated patient advocates. Perhaps the project could have been publicly introduced in a more inclusive way?

I think it is okay in a forum like this to limit scientific discussion to the scientists, but what about including a structure for communications with and by patients. The ALZ Forum (http://www.alzforum.org/ )is cited as a model (really a wonderful resource) states :

" We very much welcome our readers' participation in all aspects of the web site. "

http://www.alzforum.org/abo/mis/default.asp

So if you look at their scientific discussions -- transcripts or web casts are available online - therer is an opportunity for anyone to make comments or ask questions -- and you will see patient advocates included along with the scientists. for example: http://www.alzforum.org/res/for/jour...asp?liveID=167

Hopefully the Fox rresearch forum will follow this model, and also be open to new ways of involving patients in the research process.

There is more information on the Fox project at: http://www.pdonlineresearch.org/about.html

one of the issues discussed here is the slowness of traditional scientific communication and cliinical trial results- somethiing patient advocates have complained about for years. This forum will address these problems.

"The speed and quality of these decisions are limited by the way scientific knowledge is communicated today: new findings come to light through the slow scientific publication process, and are analyzed by the scientific community in small conference sessions and private discussions. Funding and investment decisions are likewise based upon limited discussions with handfuls of experts. "

"To increase the efficiency of these processes, in the spring of 2009 The Michael J. Fox Foundation will launch PD Online Research, a web community of scientists, industry professionals, grantmakers and financial investors dedicated to advancing the treatment, prevention, and cure of Parkinson’s disease"

If they can meet these goals, what more could we ask.... only that we also be recognized as members of the community ?
linda

How many CEOs do you think have a couple of million people world wide who could be doing research for them for nothing along with stating their status medically, psycologically - let's change that to mentally - at practically any time of the day or often night. Full availabiity. How could that not make connections and discoveries?? Come on.....we can no longer stand quietly for this......how arrogant does one get than to leave people out of something that could save lives because of money. Get a partner, but please include patients.

I 've certainly done enough damage for one afternoon - so glad to see you Linda; now i am having a mood shift to the positive side and let's see what we can create.


see Jean Burns signature line = Margaret Meade, first one I used on Grassroots Connection - it's pops up all the time because there is a group of people here who repeatedly have experienced it.

I think its time to do it again - Everyone just do the right thing, Abusers will be given time out. Patients do not go where you don't belong and if you do keep quiet. Physicians, heal theyselves..you are malfunctioning with attitude. I am losing faith in doctors. Patients, don't type crazy emails , especially to MJF -[ oops that slipped out lol]. A walking case study, and know you all are too! ha

For ex: I think i saw a user name that read - fisherman and bikergirl. That's another whole story - nothing normal about their lives. But what a life....cyberworld means so much to me. iT's great to have my real world familiy "get it".

OK now I'm drifting. Would like to hear from a lot of you. Act immediately or we won't even deserve it. You must be good and ready to do it.

paula

I understand the need for constraints on patient participation. One does not need a daily stream of newbies asking basic questions in that environment.

I also understand the need for patient involvement. One does not need a steady stream of neurologists asking the same questions from their limited perspectives. There are things I could ask that they would not.

A very valuable solution presents itself. There are a large number of people who have the dubious distinction of being in both worlds. A background in science and having PD as well. On our little forum alone, we have almost a dozen. Could there be a more valuable subset to serve as a bridge? And maybe not just for MJFF alone but available to any org or funding source that met its requirements?

It should be possible to put together a hundred such PWP with little trouble. And not just a limited number of disciplines either. We know from experience that a chemist can contribute as much as a neurologist although in a different area. That, in itself, is very valuable in broadening the base. Perhaps MJFF should fund such a group, but as a independent entity, and limit its membera to those researchers who either have PD themselves or who have a loved one who does.

Yes, I think that's great, Rick, having people with PD or caregivers more involved, because they would be truly motivated to find a cure/neuroprotection out of love, not money. And we all know what money does.....

And also, there are so many people on this forum alone who could help so much, all of you with scientific backgrounds, heavens, sometimes I have to go get a medical dictionary to understand much of what is posted (yes, we now have one). How could this not be an incredibly valuable resource? The only downside I see is that because of urgency (who wants PD one moment longer than necessary?) that burning desire to be free of the pain, shakes, depression, etc. could skew one's perspective, but the docs/researchers without PD could be on the lookout for that.

Great ideas and suggestions. I don't really believe MJF intended to "exclude" patients in the true sense of the word, rather, I think his hope was to get this moving as fast as possible and he probably felt, as many might, that including the millions with PD in the chats would be counter-productive...but perhaps with the ideas presented here, we can find a happy medium.

get up off the floor, wipe the dust off myself and put in a few words here, even though I feel like i have no right to for various reasons.
First, you can't criticize anyone who has raised that much cash for PD research, no,no you just can't. Personally, I am sick and tired of being told by my family that I should be doing better because "MJF has had PD for longer than you and look at how well he is doing". It makes me wanna puke so I won't get into it, but I think that most of you know what bugs me about this.
Secondly, and it's been said before, PD has a hundred or more "modifications" and "manifestations" of the disease. What is useful to one patient may be poison to another. For instance, we have all seen some of us rave about Mirapex or Ropinirole, and others say it almost cost them their lives. There are different things happening in the forebrain and the midbrain dopaminergic compartments. Different brain structures can be involved in the overall factors that contribute to a case of PD. This, to me, means that the input of each individual who has PD can give clues to the overall etiology of PD. Some PWP are very compromised in certain areas of the brain that contribute to their overall "case" of PD, and their personal experiences with the treatments that they are given, lead to clues about the differences seen in the various "types" of PD (if you can group PD by "types). Researchers can not generate the "data" needed to characterize The differences in PD by any "models". They cannot just say "loss of SN neurons is the hallmark of PD". It is descriptions by PD patients that give clues as to what is happening where in the brain that leads to the overall diagnosis of PD. These "clues" are generated by giving patients many different drugs to try over a long period of time, and then "crunching" the feedback. As a specific example, PWP who have tried Amphetamine, can report a "beneficial short term effect on their symptoms" a "negative long term effect on their symptoms" or "not much of an effect", long or short term treated. Or they can report other experiences from being treated with amphetamine while they are afflicted with PD. The overall "crunching of the data" could suggest to researcher that in some forms of PD, the effect of amphetamine upon long term dopaminergic effects in the nucleus accumbens (the midbrain structure said to be responsible for the observed physiological effects of amphetamines), could contraindicate or reinforce the use of amphetamine in the average PD patient.
That was just one specific example that leads to "patient driven" results as to the clinical pharmacological usefulness of a specific drug for the treatment of PD. Researchers cannot arrive at the overall result of the usefulness of ANY treatment for PD, without the input of the patient. All the theories that would seem to suggest a useful GENERAL pharmacological treatment paradigm for PD are NOTHING without the input of a whole lot of patients experiences. PWP who generate data by their experiences with new treatments are the only thing which will lead to any type of "cure" or any better "amelioration of symptoms" in PD. A bunch of scientists, no matter how well studied they are in the field, cannot come up with useful PD treatments out of thin air.