Dr.Patient
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Okay, I read through the International Consensus Criteria, and here are my thoughts-
Here's the link for the ICC for ME: http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/pdf?forumid=331851
First of all, EXCELLENT description, and incorporation of postexertional exhaustion!
Item 1. The term 'myalgic' 'encephalo' 'myelitis' picks up only the criteria in B, excluding the sine qua non criteria A. Also excludes C and D.
Item 2. Suggest alternate terms APPEALS and APPEALS SYNDROME. APPEALS stands for Abnormal Prolonged Postexertional Exhaustion And Low Stamina - this is for patients who have just criteria A. The APPEALS SYNDROME includes criteria A, and one or more of B, C, D.
Item 3. The above terms I believe accurately portray the condition, but perhaps don't sound as serious as 'myalgic encephalomyelitis'.
Item 4. I wouldn't call the postexertional exhaustion 'neuroimmune' or 'neuroendocrine', since we don't know those yet. The exhaustion may be mainly mitochondrial or due to abnormal production, storage and distribution of ATP molecules.
Item 5. Some people are considering they have a different illness if they have criteria A,B,C,D. and excluding people who have just criteria A- calling them CFS or post viral fatigue. I have had criteria A in 2011, and after just exerting myself physically by jogging (not catching a new infection or any other insult) in 2012, now have all criteria A,B,C,D. I believe these all represent a spectrum of the same illness, based on the severity.
Let your thoughts flow now!
Here's the link for the ICC for ME: http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/pdf?forumid=331851
First of all, EXCELLENT description, and incorporation of postexertional exhaustion!
Item 1. The term 'myalgic' 'encephalo' 'myelitis' picks up only the criteria in B, excluding the sine qua non criteria A. Also excludes C and D.
Item 2. Suggest alternate terms APPEALS and APPEALS SYNDROME. APPEALS stands for Abnormal Prolonged Postexertional Exhaustion And Low Stamina - this is for patients who have just criteria A. The APPEALS SYNDROME includes criteria A, and one or more of B, C, D.
Item 3. The above terms I believe accurately portray the condition, but perhaps don't sound as serious as 'myalgic encephalomyelitis'.
Item 4. I wouldn't call the postexertional exhaustion 'neuroimmune' or 'neuroendocrine', since we don't know those yet. The exhaustion may be mainly mitochondrial or due to abnormal production, storage and distribution of ATP molecules.
Item 5. Some people are considering they have a different illness if they have criteria A,B,C,D. and excluding people who have just criteria A- calling them CFS or post viral fatigue. I have had criteria A in 2011, and after just exerting myself physically by jogging (not catching a new infection or any other insult) in 2012, now have all criteria A,B,C,D. I believe these all represent a spectrum of the same illness, based on the severity.
Let your thoughts flow now!
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