Pay it Forward For ME

Apr 03

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!

Mar 19

(Source: gamzeemakarababy, via neptunesummer)

chronicillnesscat: [Image: 6-piece blue colored background with a Siamese cat.Text reads: “Every healthy person knows exactly how I should fix myself.”]

chronicillnesscat:

[Image: 6-piece blue colored background with a Siamese cat.Text reads: “Every healthy person knows exactly how I should fix myself.”]

(via lifewithautoimmune)

neptunesummer: YES. OMG. I’M ON SPRING BREAK RIGHT NOW AND I’VE LITERALLY DONE NOTHING.

neptunesummer:

YES. OMG. I’M ON SPRING BREAK RIGHT NOW AND I’VE LITERALLY DONE NOTHING.

(Source: chronicillnesscat)

(Source: thechocolatebrigade, via neptunesummer)

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.

its-a-spoonie-life:

When you get excited cause you’re seeing a new specialist cause they might actually be able to help you, then you realize you should stop kidding yourself cause they’re all as arrogant and inconsiderate as each other.

(via neptunesummer)

d3ssins: untitled on Flickr.

d3ssins:

untitled on Flickr.

(via diary-of-a-chronically-illkid)