K2 for Hope
ALways Hoping
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In regards to the real question the IOM is asking of the "stakeholders", it needs to read from the original email as they have not requested our input on whether they maintain the contract, but the following, which we, as a community, need to respond to. We can argue all we want about the contract. The fact is they have it and if we do nothing, don't complain about the results. If we present our most important aspect or information to the IOM, then, whether we like the results or not, we have done the best we can. (In the email, it is my bold and my underline.)
They have never asked how we feel about the contract or whether we like it. All of that is covered under several other threads. So, if you have an opinion about what you feel is the most important aspect or information for the presentation, please state it. Otherwise, if you would just like to challenge how the American system works, please take it to another thread.
(Please see Jenny Spotila's blog about this here)
http://www.occupycfs.com/2014/01/20/at-the-microphone/
The IOM Question:
“What is the most important aspect or information that this committee should consider throughout the course of the study?”
Original email:
Dear Ms. Luoto,
The Institute of Medicine (IOM) has been asked to convene a committee of experts for a consensus study on Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. More information about the study can be found in the attached Statement of Task. The committee will meet several times throughout the course of the study and the first meeting will be held on January 27-28, 2014 in Washington DC. On the afternoon of January 27, the committee will hold an information-gathering session that will be open to the public, both in-person and virtually.
This open session is one of the many processes that the committee will use to gather information and assemble evidence that it will examine and discuss in the course of making its findings, conclusions, and recommendations. The objectives for the committee during this open session are to clarify the scope of the charge (as outlined in the Statement of Task) with the study sponsors; learn more about separate yet relevant research efforts in the field of ME/CFS; and to seek input from patients, caregivers, health care professionals, and other stakeholders.
We recognize that many people are interested in this study and would like to provide input or share their concerns, so we plan to provide multiple avenues for participation. Interested individuals may register for and attend the open session in-person in Washington DC or participate virtually (details for virtual participation will be provided closer to the meeting date). We cordially invite you, as a representative of Phoenix Rising, to speak to the committee during the afternoon session. If you are interested, we ask that you prepare 5-7 minutes of remarks in response to the following question: “What is the most important aspect or information that this committee should consider throughout the course of the study?”
Karen Luoto
President
Phoenix Rising an NEID Corporation
They have never asked how we feel about the contract or whether we like it. All of that is covered under several other threads. So, if you have an opinion about what you feel is the most important aspect or information for the presentation, please state it. Otherwise, if you would just like to challenge how the American system works, please take it to another thread.
(Please see Jenny Spotila's blog about this here)
http://www.occupycfs.com/2014/01/20/at-the-microphone/
The IOM Question:
“What is the most important aspect or information that this committee should consider throughout the course of the study?”
Original email:
Dear Ms. Luoto,
The Institute of Medicine (IOM) has been asked to convene a committee of experts for a consensus study on Diagnostic Criteria for Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. More information about the study can be found in the attached Statement of Task. The committee will meet several times throughout the course of the study and the first meeting will be held on January 27-28, 2014 in Washington DC. On the afternoon of January 27, the committee will hold an information-gathering session that will be open to the public, both in-person and virtually.
This open session is one of the many processes that the committee will use to gather information and assemble evidence that it will examine and discuss in the course of making its findings, conclusions, and recommendations. The objectives for the committee during this open session are to clarify the scope of the charge (as outlined in the Statement of Task) with the study sponsors; learn more about separate yet relevant research efforts in the field of ME/CFS; and to seek input from patients, caregivers, health care professionals, and other stakeholders.
We recognize that many people are interested in this study and would like to provide input or share their concerns, so we plan to provide multiple avenues for participation. Interested individuals may register for and attend the open session in-person in Washington DC or participate virtually (details for virtual participation will be provided closer to the meeting date). We cordially invite you, as a representative of Phoenix Rising, to speak to the committee during the afternoon session. If you are interested, we ask that you prepare 5-7 minutes of remarks in response to the following question: “What is the most important aspect or information that this committee should consider throughout the course of the study?”
Karen Luoto
President
Phoenix Rising an NEID Corporation
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