snowathlete
Senior Member
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As I understand it, some people believe that ME is a different disease from SEID. Believing (as I understand it) that myalgic encephalomyelitis is an accurate term describing their disease pathology and that the description of SEID in the IOM report is an inaccurate description of their disease.
I've been playing that through in my head and considering some hypothetical situations such people might find themselves in in the future and I'm wondering what you might do in such circumstances.
I'm interested firstly in how you arrived at the conclusion, personally, that you have ME and not SEID? Particularly, I am thinking about encephalomyelitis (brain and/or spinal cord inflammation) here.
Some other people consider themselves to have the disease described in the IOM report, yet disliking the name SEID, will continue to use the label ME to describe their disease. How will you distinguish yourselves from these other people with "ME"?
Where might you stand if research into SEID results in findings of brain and/or spinal cord inflammation in SEID patients? Perhaps, or perhaps not, resulting in the name SEID being dropped in favour of ME, once backed by this evidence. Specifically I'm wondering whether you would then consider the two diseases (ME and SEID) to be the same disease after all? Or still different?
Where might you stand if research into SEID results in a treatment being approved for patients with SEID? As an example, let's consider Rituximab. Let's assume it is found to work well in ~60% of patients, but no solid data on subgroups and why it works in some but not others. With a mortality rate from treatment of between 2.4-10.4% (as in this mortality study).
Where might you stand if research into SEID results in a bio-marker, (such as a blood test) for the disease? I would imagine you would get tested, if it was safe and affordable, but I don't know if that assumtion is right?
If you did get tested and were positive, would you then consider yourself to have SEID? Or still ME?
I've been playing that through in my head and considering some hypothetical situations such people might find themselves in in the future and I'm wondering what you might do in such circumstances.
I'm interested firstly in how you arrived at the conclusion, personally, that you have ME and not SEID? Particularly, I am thinking about encephalomyelitis (brain and/or spinal cord inflammation) here.
Some other people consider themselves to have the disease described in the IOM report, yet disliking the name SEID, will continue to use the label ME to describe their disease. How will you distinguish yourselves from these other people with "ME"?
Where might you stand if research into SEID results in findings of brain and/or spinal cord inflammation in SEID patients? Perhaps, or perhaps not, resulting in the name SEID being dropped in favour of ME, once backed by this evidence. Specifically I'm wondering whether you would then consider the two diseases (ME and SEID) to be the same disease after all? Or still different?
Where might you stand if research into SEID results in a treatment being approved for patients with SEID? As an example, let's consider Rituximab. Let's assume it is found to work well in ~60% of patients, but no solid data on subgroups and why it works in some but not others. With a mortality rate from treatment of between 2.4-10.4% (as in this mortality study).
Where might you stand if research into SEID results in a bio-marker, (such as a blood test) for the disease? I would imagine you would get tested, if it was safe and affordable, but I don't know if that assumtion is right?
If you did get tested and were positive, would you then consider yourself to have SEID? Or still ME?