Antares in NYC
Senior Member
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- 582
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- USA
Today we finally learned the findings and recommendations of the IOM report on ME/CFS, including a new term, SEID, that's already fostering a major debate.
The overall tone of the report and presentation was positive, giving this disease the recognition and attention it deserves, and criticizing the serious neglect from the medical authorities for decades. For your reference, here's a link to the Powerpoint presentation:
http://www.iom.edu/~/media/Files/Report Files/2015/MECFS/MECFS_Powerpoint.pdf
The report highlights mostly focused on a concrete number of aspects of this illness, namely post-exertional malaise, physical and cognitive impairments, unrefreshing sleep, and orthostatic intolerance.
This left many serious aspects of our condition, some of which are considered to be at the core of the illness, as secondary for diagnostics criteria.
I would like to start an informal poll to assess what the Phoenix Rising ME/CFS (SEID?) community thinks was left behind from the report, hoping this leads to an eventual response from patient groups to the IOM recommendations. While today's news gave us hope that the tide is turning on how the disease is conceived, it should be a starting point to build on this momentum.
Let's talk about it.
The overall tone of the report and presentation was positive, giving this disease the recognition and attention it deserves, and criticizing the serious neglect from the medical authorities for decades. For your reference, here's a link to the Powerpoint presentation:
http://www.iom.edu/~/media/Files/Report Files/2015/MECFS/MECFS_Powerpoint.pdf
The report highlights mostly focused on a concrete number of aspects of this illness, namely post-exertional malaise, physical and cognitive impairments, unrefreshing sleep, and orthostatic intolerance.
This left many serious aspects of our condition, some of which are considered to be at the core of the illness, as secondary for diagnostics criteria.
I would like to start an informal poll to assess what the Phoenix Rising ME/CFS (SEID?) community thinks was left behind from the report, hoping this leads to an eventual response from patient groups to the IOM recommendations. While today's news gave us hope that the tide is turning on how the disease is conceived, it should be a starting point to build on this momentum.
Let's talk about it.
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