• 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 (FM), 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.

One petition, one thank you, & one voting competition - get involved

Bob

Senior Member
Messages
16,455
Location
England (south coast)
There's quite a lot of info being posted on the forum at the moment, and I thought that some folks might have missed some easy activities to get involved with...


Key:
ME/CFS = Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
FM = Fybromyalgia
DHHS or HHS = Department of Health & Human Services (USA)
IOM = Institute of Medicine
CCC = Canadian Consensus Criteria



Petition:
Tell DHHS: We have suffered long enough.
"On May 12th, 9 ME patient organizations and 26 advocates sent a joint letter to the Department of Health and Human Services (DHHS) calling on them to stop using the term “chronic fatigue syndrome” with its vague case definitions and start using the Canadian Consensus Criteria, which requires the hallmark symptom of post-exertional malaise seen in ME.
If you do one thing this month, join us and sign this petition to DHHS to change the definition - and the name!"

http://www.thepetitionsite.com/255/349/958/fatigue-is-not-a-disease/
http://forums.phoenixrising.me/index.php?threads/petition-to-stop-the-iom-contract.25604/


New Petition:
Stop the HHS-IOM contract and accept the CCC definition of M.E.
"We, the undersigned people suffering from Myalgic Encephalomyelitis, along with our families, carers and friends hereby ask Secretary Kathleen Sebelius to cancel the contract HHS signed with the Institute of Medicine (IOM) to develop “clinical diagnostic criteria” for ME/CFS. We further urge Secretary Sebelius to respect the consensus reached by a group of experts supporting the adoption of the Canadian Consensus Criteria (CCC) as the research and clinical case definition for ME/CFS."
https://secure.avaaz.org/en/petitio...act_and_accept_the_CCC_definition_of_ME/?copy


Thank you:
Thank you to our ME/CFS experts.
"We applaud these experts for showing exactly the kind of leadership and courage that is needed to change the future for ME/CFS patients. Please join us in sending them a note to thank them and show them our support."
http://www.thepetitionsite.com/898/238/310/thank-you-to-mecfs-experts/
http://forums.phoenixrising.me/inde...me-cfs-experts-for-their-letter-to-hhs.25632/


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Voting competition (paused):

Congratulations to everyone who got involved in the voting competition.
We were successful in the first round!
'May12th Awareness Day for ME/CFS and FM' is a semi-finalist.
The first round for this competition has finished, and the competition is currently paused until it is re-opened for the next round.

May 12th Awareness Day for ME/CFS and FM
"This contest gives us a chance to fund a nation wide awareness campaign for 2014, the 22nd Anniversary of May 12th Awareness Day."
http://www.avivacommunityfund.org/ideas/acf17388
http://forums.phoenixrising.me/inde...nd-a-year-of-me-fm-awareness-in-canada.25603/


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Ecoclimber

Senior Member
Messages
1,011
Not sure what you mean? I was bumping the thread to get it back to the top. I signed the advocates letter with my full name. Please clarify!
 
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