Hope for a better tomorrow with more respect of human beings, either PwP’s or their families ,
all this brings joy and raises best motivation,
So first, big thanks for such a great thread and congratulations for all the great ideas for a great Alliance…
and for all the long and thoughtful posts.
Here are few comments and suggestions, questions and requests, too,
about the Alliance, if ever they may contribute to build the whole entity together.
See pdf for a much better presentation
1. The Alliance has been said it should/could/might or must be an international worldwide union of PwP’s,
the one voice to support and defend common interests
○ All the time, worldwide
○ and each time anywhere in the world when and where it is more particularly required
Questions :
Do you see the Alliance as a US non profit organization PwP’s from other countries would join,
or is it too be built as a network with no border?
What about advocacy/defense out of USA?
2. The Alliance must support the most open-minded and respectful dialogue
○ With physicians and neuroscientists involved in PD and their collaboration
○ in multidisciplinary groups with participation of other professionals from from social sciences (psychology, sociology, philosophy, epistemology;ethics, anthropology, economics, education,) … as such a chronic disease with multiple disabilities is unfortunately far from raising ‘only’ medical and scientific problems …. all of these professionals would enrich the global vision and understanding of PD
3. The Alliance must support the worldwide respect of international and national laws and of humanistic ethical values
○ One voice from one allied international force to fight for respect of PwP’s et al.* basic rights and ethical values everywhere in the world
○ One voice to defend the international laws and rules of humanistic medical care and of good science and its applications to PwP’s, life and its quality
○ One voice to ask for support and fight against
○ One voice to give information and fight against conflicts of interests, cheats, lies and at final quackery of very few but extremely powerful searchers introducing 'bugs' forever in the theories, an unbearable damage to knowledge of humanity
○ One voice to denounce the violation of rights and of PwP’s behaviors as in the problem of dopaminergic agonists.(*families, friends),
one voice to claim for neurobioethical rules defined and have them respected
5. The Alliance internet database for advocacy, action and research must define clearly
its goals as a specificworldwide PwP’s database
About research, an internet database for research is an excellent idea …BUT.
○ Concerning data gathered from PwP’s : if testimonies, reviews of litterature, works or even trials had ever been required, we would most probably have been asked for
○ This means in no way they are not valuable but that currently not many in this world have ever had the idea or felt enough confidence to work for an evidence-based demonstration about the interest of PwP’s data from a scientific point of view.
○ Indeed no scientific group, no medical society and of course no lobby and no firm is ready or even half open to the idea of patients or e-patients empowerment, otherwise we would not discuss about it right now.
What’s more, habits and rules do not really allow such possibilities.
Yet, there is very low probability for us to be accepted as reliable partners in the rows of research
In order to avoid harsh desillusion, to have legitimacy recognized and to reach our goals and change our future, we must talk about and work upon the reasons, ‘how and why’ PwP’s have been asked far too merely to give their own contribution to collaborative works this, at a worldwide extended scale.
6. The Alliance must afford a real enrichment in all fields ,
and developp new strategies to change the way we and our testimonies and works are looked at
• We must not look for recognition of the value of what we may know, think or believe from our readings, scientists will not go for this knowledge because in these fields they are the masters and we will always be considered as subjective amateurs.. so no trial for mimicry, it is a too risky choice.
• Our strength lays too in our difference, in the specificity of our experience, about what we may live, feel through/from our bodies , and then link together and understand with the help of our knowledge.
6.1 We must change the current medical and scientific vision about our illness.
o Because for most scientific searchers working in their labs an illness means nothing else than a bunch of definitions given by medicine and the choice of the required experimental models -this is no criticism, scientific searchers are not supposed to be involved in our lives, and when we discuss scientific data we ourselves ‘play’ a very interesting intellectual ‘game’ and forget easily we talk about what is devastating our lives-,
○ Because only medical points of view are applied and current theories still
focuse upon the “dopaminergic neuronal loss in substantia nigra” as the main problem/interest/cause
Well, for all these reasons, indeed one of the major goals for a PwP’s scientific database should/could/might be to offer the most continuous updated integrative vision upon PD, a/the reference of the most global vision one may have about the illness , assessed by our multidisciplinary partners and us
This is something that no one would find anywhere else, a very useful “tool” for many, built with all data and among them PwP’s ones, in same database, their “natural” place.
6.2 More we must certainly not remain focused upon PD, to cross frontiers between chronic diseases is then an important goal, very serious reasons for this assertion
o 1 because a bunch of illnesses that look very different when seen through their specific clinical features are somehow sisters or even twins when comparing several fielss of their underlying process.
o 2, because it is only unbearable to learn that an important piece of knowledge, one of the lacking key to an illness has been known in another field or research actually for 10 or 30 years
o 3 Because research upon PD is particularly far behind other illnesses in several fields concerning mechanisms, multidisciplinary cross exchange of data between sufferers and professionals are the most fruitful –own current and on going experience to be described later –
o 4, because we are all human beings, witih same asks, same sufferies and
same types of daily problems, so better share searching and findings here too
To finish…….
○ A question We exchange a huge amount of free informations here in the forum, what about fees for copyrights when it will be from publications database to our database?
○ A comment :PwP’s on Neurotalks are mostly US citizens and, as so, very many, well organized and efficient, big big thanks to all of you ..........
and a request
for non US ones, to understand most of the details among your posts requires to learn or update datailed knowledge about US laws, FDA, US organizations, Advocacy database….Thanks to explain sometimes more..or to avoid when useless details
○ A suggestion: I propose to non US participants from non –english countries to join forces to reach other e-patients groups you know or I may as to spread the news and be able to be full partners
(inded, spanish -, portuguese-, german- and french-speaking with motherlands of these languages and Northern Africa, Northern and Southern America……..;-) it looks like UNO in its good days!)
○ Friendly thoughts to my two partners PwP’s
in a very tiny and informal group we would call at times the Tripartite Allied Forces. Guess why..
We have worked hard together from early 2006 to end of 2007 upon two beautiful projects about research and scientific data.
Unfortunately, various reasons have stopped us before total achievement but I have no doubt they will agree to present them the new Alliance .
Let’s ask them.
Dwight? Winston? Charles asks for contact.. .
(Secret names of course….)
They’ll answer..no doubt, they are thoughtful, committed.........and as so both on this thread
Hugs to the two of them and to all
Anne.