Article: The Obama Promise on Chronic Fatigue Syndrome
- Thread starter Phoenix Rising Team
- Start date
This is one of those rare moments when I wish I was an American. 
Please note that we can't merely state CFS is being underfunded. We need to explicitly compare the NIH funding of CFS to that of other diseases and compare the economic costs as well as the impact of the disease and poor quality of life due to lack of treatments. In your letters you need to state that the disease prevents yourself/patients from working and functioning as a parent.
See:
http://www.iacfsme.org/BULLETINSUMMER2008/Summer08DonalekLivingWithAParent/tabid/283/Default.aspx "Living with a Parent with Chronic Fatigue Syndrome"
http://www.dynamic-med.com/content/7/1/6
http://www.ncbi.nlm.nih.gov/pubmed/21251294
http://report.nih.gov/rcdc/categories/
An example of previous economic comparisons by me:
Please note that we can't merely state CFS is being underfunded. We need to explicitly compare the NIH funding of CFS to that of other diseases and compare the economic costs as well as the impact of the disease and poor quality of life due to lack of treatments. In your letters you need to state that the disease prevents yourself/patients from working and functioning as a parent.
See:
http://www.iacfsme.org/BULLETINSUMMER2008/Summer08DonalekLivingWithAParent/tabid/283/Default.aspx "Living with a Parent with Chronic Fatigue Syndrome"
http://www.dynamic-med.com/content/7/1/6
http://www.ncbi.nlm.nih.gov/pubmed/21251294
http://report.nih.gov/rcdc/categories/
An example of previous economic comparisons by me:
It should be fine for non-Americans to write to Mr. Obama. This is an issue that has implications outside our border. Each of our health authorities effects the others. Simply explain when you write why you are interested in what he and NIH do. He isn't responsible to you as your elected official, of course, but he might be interested in world opinions.
As I'm sure you all realize, this is not going to work unless slews of us take the time to write in, and also include some information that will counter the glossing over that the NIH will most likely do. Because otherwise, all that's going to happen is Obama's staff will contact NIH and NIH will tell them they doing everything they can but can't afford to short-change more important illnesses. Or they will say they are on top of the XMRV research, or there were not enough decent applications. And that will be that.
right, NIH will point to SoK and the BWG studies. We need to be able to argue that, one-time and occasional events aside, the ongoing allotment is the important part.
Talking points (you may want to pick just one; it's advised to keep it short and sweet but in any case not to run over a single page with normal margins)
compare less than $6 mil (her figure, which is a bit high) to $144 for MS (still underfunded) and $500 for Alzheimers (similarly complex, debilitating, and not well understood, but unlike the other two, not disproportionately affecting women). meanwhile, MS and Alzheimers have FDA-approved treatments, while ME does not.
Intramural research (CDC) is spent on chronic fatigue, not CFS, but published under the title of CFS, and also some funds are unable to be accounted for. Also some of the research is pejorative towards patients.
Exramural research (NIH grants) are approved by a committee which normally has no experts qualified to assess the biomedical research needed, and some of the members hold pejorative views towards patients. Indeed, the NIH recently invited one Dr. Myra McClure, who doesn't even know how to use controls. (She left when it became apparent she wasn't wanted, but this is what NIH thinks of us.)
Talking points (you may want to pick just one; it's advised to keep it short and sweet but in any case not to run over a single page with normal margins)
compare less than $6 mil (her figure, which is a bit high) to $144 for MS (still underfunded) and $500 for Alzheimers (similarly complex, debilitating, and not well understood, but unlike the other two, not disproportionately affecting women). meanwhile, MS and Alzheimers have FDA-approved treatments, while ME does not.
Intramural research (CDC) is spent on chronic fatigue, not CFS, but published under the title of CFS, and also some funds are unable to be accounted for. Also some of the research is pejorative towards patients.
Exramural research (NIH grants) are approved by a committee which normally has no experts qualified to assess the biomedical research needed, and some of the members hold pejorative views towards patients. Indeed, the NIH recently invited one Dr. Myra McClure, who doesn't even know how to use controls. (She left when it became apparent she wasn't wanted, but this is what NIH thinks of us.)
I'm pround to be un-American.
???????????????
I agree - really a great job by Courtney! We should hire her
Robert Miller Facebook's page -
Asking us to send a letter to President Obama:
http://www.facebook.com/note.php?note_id=10150237459325539
(Sorry if this was already posted.)
Proud?
I'm an American and I'm not proud how this government has purposefully ignored, ridiculed , belittled and basically let us suffer and die for the past 25 years.
SO the president fielded a question and said he would look into it?
Is this all it takes to be proud to be an American from members of the ME/CFS community
Talk about easy to please. Personally 3 bucks a patient does not make me proud to be an American.
I'm an American and I'm not proud how this government has purposefully ignored, ridiculed , belittled and basically let us suffer and die for the past 25 years.
SO the president fielded a question and said he would look into it?
Is this all it takes to be proud to be an American from members of the ME/CFS community
Talk about easy to please. Personally 3 bucks a patient does not make me proud to be an American.
Done
I sent in a note through the website and also faxed one in through
www.faxorama.com (free fax)
You can also call or write to the President:
The White House
1600 Pennsylvania Avenue NW
Washington, DC 20500
Please include your e-mail address
Phone Numbers
Comments: 202-456-1111
Switchboard: 202-456-1414
FAX: 202-456-2461
I sent in a note through the website and also faxed one in through
www.faxorama.com (free fax)
You can also call or write to the President:
The White House
1600 Pennsylvania Avenue NW
Washington, DC 20500
Please include your e-mail address
Phone Numbers
Comments: 202-456-1111
Switchboard: 202-456-1414
FAX: 202-456-2461
I sent my letter....but, I cannot imagine he would even remember the question. As for the letter, I do hope he gets it, but......being in the health care field for a long time, and now with Obamacare.....very much doubt we are on the radar, we are $$$ drain. Unfortunately it comes to that. With the Obamacare, pharmacuetical companies will not have the incentive to do clinical trials for most diseases, and certainly not for people who they consider "tired."
Any news yet of the President following up with his promise?