• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Take Action on the P2P Workshop

J

jspotila

Senior Member
Messages
1,099
For months, I've been documenting everything wrong with NIH's planned P2P Workshop on ME/CFS. A number of people have asked me what they can do about it. Here's one way:

Last week, Mary Dimmock and I sent a 38 page package to Dr. Francis Collins documenting all of the reasons why the P2P Workshop will not advance the field of ME/CFS research. We requested that he cancel the meeting, and reexamine how to best collaborate with the ME/CFS research and clinical community. You can read more about our letter here: http://www.occupycfs.com/2014/06/02/collins-please-cancel-p2p/

The P2P Workshop will use a panel of non-ME/CFS experts, selected by NIH, to make recommendations on case definition, research direction and possibly treatments. You can read more about P2P and what I’ve discovered through FOIA requests in the posts gathered here.

If you are worried about what P2P could produce . . . if you think this is bad science . . . if you want to voice your opposition to using non-ME/CFS experts to advise NIH on the direction of ME/CFS research . . . here is your chance.

Fax or email Dr. Francis Collins today and request that he cancel the P2P Workshop.

I've posted a template that you can use to fax or email Dr. Collins today at 301-402-2700 or email him at collinsf@mail.nih.gov.

I hope you will take a few minutes and add your voice to our request. The P2P Workshop is not the right way to move forward!
 
Nielk

Nielk

Senior Member
Messages
6,970
Thank you, Jennie and Mary.

I just sent in my e-mail. It took about two minutes.;)
 
catly

catly

Senior Member
Messages
284
Location
outside of NYC
jspotila said:
For months, I've been documenting everything wrong with NIH's planned P2P Workshop on ME/CFS. A number of people have asked me what they can do about it. Here's one way:

Last week, Mary Dimmock and I sent a 38 page package to Dr. Francis Collins documenting all of the reasons why the P2P Workshop will not advance the field of ME/CFS research. We requested that he cancel the meeting, and reexamine how to best collaborate with the ME/CFS research and clinical community. You can read more about our letter here: http://www.occupycfs.com/2014/06/02/collins-please-cancel-p2p/

The P2P Workshop will use a panel of non-ME/CFS experts, selected by NIH, to make recommendations on case definition, research direction and possibly treatments. You can read more about P2P and what I’ve discovered through FOIA requests in the posts gathered here.

If you are worried about what P2P could produce . . . if you think this is bad science . . . if you want to voice your opposition to using non-ME/CFS experts to advise NIH on the direction of ME/CFS research . . . here is your chance.

Fax or email Dr. Francis Collins today and request that he cancel the P2P Workshop.

I've posted a template that you can use to fax or email Dr. Collins today at 301-402-2700 or email him at collinsf@mail.nih.gov.

I hope you will take a few minutes and add your voice to our request. The P2P Workshop is not the right way to move forward!
Click to expand...

Thanks for all your work on investigating this and for keeping us informed. I sent an email today.
 
J

jspotila

Senior Member
Messages
1,099
Nielk said:
Thank you, Jennie and Mary.

I just sent in my e-mail. It took about two minutes.;)
Click to expand...
Hurray! Thank you Gabby!

And thank you @catly!!!!!

Encourage others to join in! I would love to see Collins get 100 faxes/emails about this by the end of the week. That will elevate the priority they give to reviewing our letter and supporting materials.
 
You must log in or register to reply here.
Back