• 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.

Petition linked to the advocacy letter to Sebelius - shouldn't we all sign?

Messages
30
Is this already posted here? - couldn't find it. We should all sign, shouldn't we?

Department of Health and Human Services: Formulate a Strategic, Coordinated and Fully-Funded Response to ME/CFS


Over the past 25 years, myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has devastated the lives of more than one million Americans. But to date, very little has been done to help these patients.


We are asking Secretary Sebelius to convene a meeting between ME/CFS patient representatives and key representatives from across DHHS to better understand our concerns and then work with us to formulate a strategic, coordinated and fully-funded response to the challenge of ME/CFS.


We need your help. We will be more likely to get the attention of Secretary Sebelius and the Department of Health and Human Services if a significant number of people sign this petition. Please do so and ask your family and friends to do so as well.


http://www.change.org/petitions/dep...dinated-and-fully-funded-response-to-me-cfs-3
 

Nielk

Senior Member
Messages
6,970
Yes camilla I think it's very worthwhile for all to sign. I did a few days ago.:)
 

medfeb

Senior Member
Messages
491
If you have not yet signed the petition calling on the Department of Health and Human Services to formulate a strategic, coordinated and fully funded response to ME/CFS, would you please take a minute and do so. For our colleagues outside of the U.S., you can also sign.

The petition can be found here.

Every signature counts. The more people that sign this, the more likely we are to get what we are asking for. Please share by Facebook, twitter and any other social media you use. Also please ask your friends and family to sign as well.

If you have any questions or comments, feel free to PM me or send your comments to MECFSACTION@YAHOO.COM

Thank you in advance. Together we can change our futures!
Mary Dimmock
 

justinreilly

Senior Member
Messages
2,498
Location
NYC (& RI)
I have sent emails to my entire address book. I urge everyone to do likewise, and to send to Facebook friends, etc. I have never sent out mass emails before doing ME advocacy since I hate spam. This may or may not annoy a few, but this cause is so important to us and society in general, that the social benefits way outweigh the social costs of getting extra emails.

So please send to all email and facebook contacts. It's very easy and generates great results!
I have included the text below, and as always, feel free to copy some or all of it. Thanks everyone for the good work.

Subject: Please sign the M.E. ("CFS") petition to the government
Please do me a big favor and sign the below-linked petition for the Department of Health and Human Services to respond adequately to the burden M.E. places on America.
As you may know, I have the Neuro-Immune Disease Myalgic Encephalomyelitis (aka "CFS"). Approximately 1 Million other Americans also have M.E., but the Federal Government has ignored and even persecuted M.E. patients for decades. The situation is hard to believe and, in fact, I wouldn’t have believed it myself if I hadn’t lived it and thoroughly researched it.
Please also forward this message to your friends, or even better, your whole address book as I have. I hate spam, so I have never before sent out mass emails, but this cause is so important, I must bother you with it. : )​
Thank you very much for your consideration!
Yours,
Justin
 

medfeb

Senior Member
Messages
491
Thank you, Justin.

I never do mass mailings either but in this case I did because this is so important to all of our futures. Asking your email and Facebook contacts to sign this petition can make a big difference.

If you haven't signed yet, please take a minute to do so. The short link is http://chn.ge/Mihd3g. And don't forget to ask your family and friends to sign also.
 
Messages
39
I also sent out an email to family and friends, as well as signing it myself, of course. I look at the tally of signatures daily and, frankly, I'm surprised that it hasn't climbed more rapidly.