worldbackwards
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- 2,051
Coyne blocked Kennedy. Click on the tweet and you can see the whole thing
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A supportive view of Wallit from CortJohnson.org
- Thread starter ScottTriGuy
- Start date
No less than Ian Lipkin has suggested something along the lines of "patients need to be more proactive", in order to force funding for proper research. When would be the proper time for that, if not now? What would be the proper target, if not the NIH...sitting outside the local grocery store with a petition?
I entirely agree that Coyne should be left out of this. It's not a fight that I think he's interested in, or in which he can do us much good. His interest is clearly in data sharing and analysis of psychological research.
I entirely agree that Coyne should be left out of this. It's not a fight that I think he's interested in, or in which he can do us much good. His interest is clearly in data sharing and analysis of psychological research.
She didn't include any screenshots. All allegation and no evidence. Very odd.Coyne blocked Kennedy. Click on the tweet and you can see the whole thing
worldbackwards
Senior Member
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Yes, you're quite right and I understand that Kennedy can be a spiky personality herself. To be honest, God only knows.
Ecoclimber
Senior Member
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- 1,011
See my post here:
http://forums.phoenixrising.me/index.php?threads/details-on-nih-study.43076/page-22#post-701001
I believe PR should have a seat as a patient advisory providing feedback with NIH as it's the largest patient community but must be U.S. led.
http://forums.phoenixrising.me/index.php?threads/details-on-nih-study.43076/page-22#post-701001
I believe PR should have a seat as a patient advisory providing feedback with NIH as it's the largest patient community but must be U.S. led.
alex3619
Senior Member
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- 13,810
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- Logan, Queensland, Australia
One of the problems I see in the world, and growing in significance and magnitude, is a decline in proper governance. Its pervasive in countries that we used to see as leaders in good government. The writers of the laws, regulations and constitutions of these countries understood the need for checks and balances in organizations, including government. I regularly see more and more of those protections sidelined or removed.
If the NIH establishes a good raport with a working group of patient representatives, and those representatives have a broad base, then this will be good. IF they have any influence. They do need to be US based though. To do otherwise may undermine their legitimacy.
The cautionary tale here is CFSAC. Lots of doctors and researchers, some very knowledgeable, have put considerable time into CFSAC and generated many recommendations. Typically those recommendations have just disappeared without comment or action.
Just because we have a seat at the table does not mean we will have any impact. The devil is in the details.
Its also important to recognize that though we look deeply into issues, examining many things normally overlooked by academia, we take a very long time to do so. My guess is we will not fully understand the impact of things until long after they are done. This can work both for us and against us.
If the NIH establishes a good raport with a working group of patient representatives, and those representatives have a broad base, then this will be good. IF they have any influence. They do need to be US based though. To do otherwise may undermine their legitimacy.
The cautionary tale here is CFSAC. Lots of doctors and researchers, some very knowledgeable, have put considerable time into CFSAC and generated many recommendations. Typically those recommendations have just disappeared without comment or action.
Just because we have a seat at the table does not mean we will have any impact. The devil is in the details.
Its also important to recognize that though we look deeply into issues, examining many things normally overlooked by academia, we take a very long time to do so. My guess is we will not fully understand the impact of things until long after they are done. This can work both for us and against us.
Large Donner
Senior Member
- Messages
- 866
I think alot of it stems from the need to grow their own branded version of "CFS" and then it filters down to quackery. "CFS" is a good coverall for insurance companies and disability payouts and also for previous bad management and a good cover up for all and everything that governments may suddenly find themselves in a pickle over.
My personal belief is its about growing the brand of "CFS" whilst making a disease called ME and many others all magically disappear. It is also useful to have it in place to blanket over any future potential "new illnesses" just as they did with GWS.
More and more cell towers, more and more wifi, more radiation, unkown effects of more and more vaccines on the never tested overal schedule, more and more aspartame, more uranium, no problem, just get a catch all label in there in advance and if needs be it can be rolled out regardless of the science either way, if needs be.
I personally feel that based on what @alex3619 showed me yesterday about the politics in CFS/ME from the 80s and 90s if we dont do something drastic soon we may loose many more years to politics and insurance companies.
I persoanlly believe that if a major stand, like something similar to the AIDs movement does not take place while all these major things are happening in the ME/CFS Community such as the IOM Report, P2P, NIH Grandrounds, OMF Study, than these things may be just gone with the wind if no significant findings are made.
This is a time of hope for the community but it is also a time when serious pressure I feel should be put on the governments etc. We need to unite, have a common goal as to what that looks like and gather all the resources we have to execute it, people, technology and media.
We as a group seem to produce great documentaries but these have limited exposure.....time to figure soemthing else out?
It will take the bright minds of ME/CFS'ers, The Drs, Our CFS groups and the rest of our suporters to come up with something that will gain substantial exposure and have a serious impact.
The ingnorance lies in believing people that have provided little support and aknowlegment into the severity of the disease from the get go.
Whats changed over 30 years? Money, power and polotics are probably stronger than they have ever been.....(I can provide countless examples from my provinve and country)
Just my rant....if you have idea ill do what i can from my house
I persoanlly believe that if a major stand, like something similar to the AIDs movement does not take place while all these major things are happening in the ME/CFS Community such as the IOM Report, P2P, NIH Grandrounds, OMF Study, than these things may be just gone with the wind if no significant findings are made.
This is a time of hope for the community but it is also a time when serious pressure I feel should be put on the governments etc. We need to unite, have a common goal as to what that looks like and gather all the resources we have to execute it, people, technology and media.
We as a group seem to produce great documentaries but these have limited exposure.....time to figure soemthing else out?
It will take the bright minds of ME/CFS'ers, The Drs, Our CFS groups and the rest of our suporters to come up with something that will gain substantial exposure and have a serious impact.
The ingnorance lies in believing people that have provided little support and aknowlegment into the severity of the disease from the get go.
Whats changed over 30 years? Money, power and polotics are probably stronger than they have ever been.....(I can provide countless examples from my provinve and country)
Just my rant....if you have idea ill do what i can from my house