24
Oct

"There’s sixteen million dollars in male pattern baldness

and we got three million and we got three million bucks

going to Chronic Fatigue Syndrome.”  Dr. Nancy Klimas 

referring to our lackadaisical  government’s funding toward Chronic 

Fatigue Syndrome/ Myalgic Encephalomyelitis or ME.

Brilliant work. If you or a loved one has ME/CFS please

help the filmmakers help us by helping them. 

Do it for us! Do it in the name of science advancement!

Just Do it!

Lizzie

3
Apr
Article courtesy Sue Jackson
http://livewithcfs.blogspot.com/2013/04/two-ways-to-help-mecfs-treatment-move.html
Two Ways to Help ME/CFS Treatment Move Forward



On April 25-26, the U.S. Food & Drug Administration (FDA) will be holding its first-ever FDA Workshop on Drug Development for Chronic Fatigue Syndrome (CFS) and Myalgic Enchephalomyelitis (ME) in Bethesda, Maryland. This is our big opportunity to teach the FDA all about the severity and effects of ME/CFS and our urgent need for effective treatments.The meeting is open to the public, though of course, many ME/CFS patients are too sick to attend. However, even if you are bedridden, there are two ways that you can help in this momentous event. Two different surveys have been launched to collect patient data, and the more patients that respond, the more impact we can have in convincing the FDA that there is an urgent need for medications designed specifically to target the unique complexities of ME/CFS.The CFIDS Association is conducting a survey based on the questions FDA posed in the Federal Register noticefor the Workshop. Responses to the survey will be collated and presented at the workshop. It consists of open-ended questions (full sentences not required - brief responses or bullet points are fine) and will take between 30-60 minutes to complete. Follow this link to begin the CFIDS Association survey.The second survey has been designed by Dr. Lily Chu and Dr. Leonard Jason, who will be participating in the FDA workshop. Dr. Chu will present the results of this survey to help teach the FDA about ME/CFS from the patients’ point of view. This survey is multiple choice with some room for additional comments and should take about 30-40 minutes to complete (mine only took 25 minutes to complete). Responses are needed by April 17 to be included in the FDA meeting, but the survey will remain open until May 10, and all responses included in a report.Follow this link to begin the Chu/Jason survey. If you can manage both surveys, great - they are different surveys and they can use all the patient input they can get andthe more responses they get, the more meaningful the data will be. If you can only manage one, just choose one  - your participation will be helpful either way.You can also participate directly in the meeting in person or by giving public comment. This blog post from Occupy CFS provides details and links (I also borrowed heavily from another Occupy CFS post for the survey information above since I haven’t been feeling well lately - thanks, Jennie!)This FDA workshop is a big deal, so help out however you can!

Article courtesy Sue Jackson

http://livewithcfs.blogspot.com/2013/04/two-ways-to-help-mecfs-treatment-move.html

Two Ways to Help ME/CFS Treatment Move Forward

On April 25-26, the U.S. Food & Drug Administration (FDA) will be holding its first-ever FDA Workshop on Drug Development for Chronic Fatigue Syndrome (CFS) and Myalgic Enchephalomyelitis (ME) in Bethesda, Maryland. This is our big opportunity to teach the FDA all about the severity and effects of ME/CFS and our urgent need for effective treatments.

The meeting is open to the public, though of course, many ME/CFS patients are too sick to attend. However, even if you are bedridden, there are two ways that you can help in this momentous event. Two different surveys have been launched to collect patient data, and the more patients that respond, the more impact we can have in convincing the FDA that there is an urgent need for medications designed specifically to target the unique complexities of ME/CFS.

The CFIDS Association is conducting a survey based on the questions FDA posed in the Federal Register noticefor the Workshop. Responses to the survey will be collated and presented at the workshop. It consists of open-ended questions (full sentences not required - brief responses or bullet points are fine) and will take between 30-60 minutes to complete. Follow this link to begin the CFIDS Association survey.

The second survey has been designed by Dr. Lily Chu and Dr. Leonard Jason, who will be participating in the FDA workshop. Dr. Chu will present the results of this survey to help teach the FDA about ME/CFS from the patients’ point of view. This survey is multiple choice with some room for additional comments and should take about 30-40 minutes to complete (mine only took 25 minutes to complete). Responses are needed by April 17 to be included in the FDA meeting, but the survey will remain open until May 10, and all responses included in a report.Follow this link to begin the Chu/Jason survey. 

If you can manage both surveys, great - they are different surveys and they can use all the patient input they can get andthe more responses they get, the more meaningful the data will be. If you can only manage one, just choose one  - your participation will be helpful either way.

You can also participate directly in the meeting in person or by giving public comment. This blog post from Occupy CFS provides details and links (I also borrowed heavily from another Occupy CFS post for the survey information above since I haven’t been feeling well lately - thanks, Jennie!)

This FDA workshop is a big deal, so help out however you can!
19
Mar

 

neptunesummer:

When you have an illness, sometimes you have to be selfish and just focus on yourself. It takes so much energy to try and please everyone else and it’s not worth all the emotional and physical stress. You have to do what’s best for you, even if other people are critical of you or don’t understand. You know your body better than anyone else and you can decide what activities you can and can’t do.