Tuesday, April 02, 2013

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 (this FDA link keeps going out. I can't figure out why. If the link doesn't work for you, try the one in this OccupyCFS post - that's the one I used, too, but for some reason it works there and doesn't here).

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 notice for 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 and the 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!

P.S. I believe the CFIDS Association survey is open to patients all over the world, not just in the US. Questions on the survey will ask where you're from so that US data can be pulled out, but the more responses, the better! If the FDA gets on board with focusing on ME/CFS, it will help make treatments more available all over the world.

5 comments:

  1. Can I copy and paste this post into my blog and give you credit?

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    1. Yes, absolutely, Elizabeth! Thanks for helping to spread the word.

      Sue

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  2. Thanks, Sue! PS: that first link doesn't seem to be working.

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    1. Thanks, Elizabeth - I've fixed that link twice already! It must be a problem with the FDA's website. I will try again.

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  3. 14 years ago, I was diagnosed with Fibromyalgia. After being totally disabled, I have now been out of pain and off meds for the past 13 years. I have no pain, good energy, the anxiety went away, and my sleep is good without medications. My brain fog also lifted to the point that I retrained as a nutritional consultant. I didn't happen over night, but it did happen. I did it by balancing my hormones, initially balancing brain chemistry (dopamine and norepinephrine were low, not just serotonin), cleaning up my diet, and clearing some toxins, which is likely something you won't hear in your doctor's offices.
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    Here is a hug to each of you. I want you to feel well again.
    Patricia Stephens, Certified Nutritional Consultant

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