Ecoclimber
Senior Member
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Yes, I'll PM You.
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.
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Criticl Mass Needed!!
For the patient community to succeed, CRITICAL MASS is needed to overcome the forces the arrayed against this community. Tom Hennessy advocated this strategy. Throughout the decades, this patient community had to the endure the psycho-somatic label placed on this illness. You had to suffer from the marginalization, scorn and disdain from the medical profession. We have the historic record on how the NIH and the CDC view this illness!
Unfortunatley to date, there is not enough Critical Mass from this community to overcome the directives that are being initiated to redefine this illness. Statistics over the last couple of weeks prove this. Since the majority of scientific research is generated within the scientific community of the United States, this contract with the IOM will affect the worldwide ME/CFS commmunity.
There is an extreme faction in Congress that wants to impose extreme austerity measures on social services. In reaction to these powerful groups, legitimate but controversial medical illnesses are being reclassified as psychiatric in nature so costly medical treatment and disability will be nullified.
The ME/CFS researchers/clinicians who signed the open letter to Secretary Sebelius was unprecendented. They preceive the inherent consequences of the IOM contract. They knew that urgency was critical. We were all blindside by this IOM contract. This came out of left field.
To date, only few hundred from the ME/CFS community have generated an interest in contacting various organizations. That's not going to cut it! The ME/CFS patients must send their objections by the thousands, or this cause will be lost. If the IOM can reclassified the definition of GWS to CMI over the objections of the powerful veterans group and a Congressional mandated scientific Research Advisory board, you can observe what the consequences will be for this community.
What is needed is sending your objections to Office of the President, Obama, Vice President Biden, Secretary of DHSS Sebelius and to the board of directors of CFIDS, Pandora and Offer. I am not asking you to contact your representatives as their attention is fully focused on ending the budget deadlock and have no time to consider this issue. Most of their staff are on furlough.
More important, members must contract other worldwide patient communities, patient advocates and forums in other disease categories soliciting their help. This would mean registering in their forums worldwide and posting a solicitation for help and linking back to this thread. I specifically asking you to contact the Gulf War Veterans, Lyme, Fibomyalgia, Lupus, MS, communities. You must impress on them that eventually, they will be affected as well. We need a coalition of patient groups to impact the decision makers. I know that many patients are too ill to perform these actions but if you can enlist family and friends to help.
The social media must be inundated on Twitter, Facebook and the blogosphere.The pressure must be continuous. Otherwise, if the ME/CFS label is changed to CMI, then all funding for future medical research will be curtailed. This illness will not be treated by medical doctors or covered by medical insurance.
If you post in other patient communities link to this thread or other threads that have pertinent information. I believe this is an excellent thread discussion on fallout from an IOM contract which is headed in our direction.
http://www.mecfsforums.com/index.php/topic,17879.msg154981.html#msg154981
We will not relent until we have guarantees in place that this illness will not be redefined as psycho-somatic and that the CCC or ICC-ME criteria be adopted. This is a serious as it gets.
The future is in your hands. Critical Mass!
Eco
Patients please post on Huffington Post Canary in a Coal Mine, the more you comment, the more the blog will be reviewed by HP and they might consider further articles on ME/CFS. Huffington Post is #69 on Alexa Top 100 sites so they get alot of exposure so please make a comment about your own personal account so thousands who read her blog will have a better understanding of ME/CFS
https://tinyurl.com/nur23rk
Patients please post on Huffington Post Canary in a Coal Mine, the more you comment, the more the blog will be reviewed by HP and they might consider further articles on ME/CFS. Huffington Post is #69 on Alexa Top 100 sites so they get alot of exposure so please make a comment about your own personal account so thousands who read her blog will have a better understanding of ME/CFS
https://tinyurl.com/nur23rk
How does one use Reddit ? Thanks
Just go to REDDIT.com click on CREATE NEW ACCOUNT: USERNAME PASSWORD then type in the capcha word and your done! Just click on the reddit link in my previous post and it will take you to the comment section.How does one use Reddit ? Thanks
I emailed it to my rheum. although he likes journal papers. kinda a snob that way ! but i get the reasons for it.
Here you go. Some people are having difficulting logging in or creating an account with HP. I don't know the reason for it. You can Log In using your FaceBook, Twitter, AOL and other accounts without having to create another account.I just realized that is a Huffington Post article about exercise making us worse (per Enlander) and I could have liked it on Facebook. Anyone know where the Huffington article is.
Here you go. Some people are having difficulting logging in or creating an account with HP. I don't know the reason for it. You can Log In using your FaceBook, Twitter, AOL and other accounts without having to create another account.
Critical Mass
I agree with the comments here. Wally's posting regarding Critical Mass is the best I have read so far. We desperately need a Critical Mass in the USA and all other countries. This must include all patients and their families and their advocates. The protest marches planned for this month are a good start. We also need to set up one focal point or coordinating center for international opposition to the IOM contract. This could include setting up a new Facebook group titled "ME/CFS - All Organisations and Persons opposed to the IOM contract ". This would invite all ME and CFS organisations to join, and enable coordinated US and international plans and events to be put in place to stop the IOM contract. This would enable us to see who is for us and who is against us. It would also identify those who are too lazy, too apathetic, too disinterested, too distracted, too uncaring not to support us.