junkcrap50
Senior Member
- Messages
- 1,335
I have an interesting situation that many people with CFS don't experience: diagnosing and catching CFS very early in its progression.
A friend of the family has asked us to help their kid who seems to have CFS or is in the very early stages of it. From what I know, his history/illness presents like this:
-Concussion with post concussion syndrome symptoms (which he apparently recovered from)
-EBV infection (not long ago, from which he is now still sick)
-Depression and brain inflammation
-Fatigue
-Not himself anymore
Now, I understand this does not mean he has CFS/ME. I don't have the entire history/picture. Or any labs or what other doctors have said. His family seems like they are desperate and that his "illness" started with his EBV infection. There are lots of directions I can point them to, but I would like for them to be aware of and understand CFS as that can save tons of time and expense for them. Also, from what i understand, if the CFS is caught and treated aggressively early, patients are more likely to be cured.
I am going to start by sending them literature about CFS and the many criteria and definitions to see if they meet more of them. But I would also like to provide some doctors and clinics that they might put in appointments in now because of the long waiting list.
What would be some good doctors and clinics as a starting point for them? They are considering the Amen clinic as they believe it is all head injury related (which it may be). But I'd rather they rule out or treat CFS first.
I have come up with a list below:
Dan Peterson (because he does thorough testing and looks beyond just CFS and is very aggressive with antivirals)
Neil Nathan
David Kaufman
Bela Chheda
Jose Montoya
Lucinda Batement
Susan Levine
Nancy Klimas
Does anyone know of any other good doctors? I'm going to have them go to their own, local infectious disease doctor for thorough testing first obviously.
I would also be very appreciative if any knows of some "tried-and-true" CFS review papers that are popular for educating people on CFS.
What would you do if you had an early case of CFS and know everything you do now?
A friend of the family has asked us to help their kid who seems to have CFS or is in the very early stages of it. From what I know, his history/illness presents like this:
-Concussion with post concussion syndrome symptoms (which he apparently recovered from)
-EBV infection (not long ago, from which he is now still sick)
-Depression and brain inflammation
-Fatigue
-Not himself anymore
Now, I understand this does not mean he has CFS/ME. I don't have the entire history/picture. Or any labs or what other doctors have said. His family seems like they are desperate and that his "illness" started with his EBV infection. There are lots of directions I can point them to, but I would like for them to be aware of and understand CFS as that can save tons of time and expense for them. Also, from what i understand, if the CFS is caught and treated aggressively early, patients are more likely to be cured.
I am going to start by sending them literature about CFS and the many criteria and definitions to see if they meet more of them. But I would also like to provide some doctors and clinics that they might put in appointments in now because of the long waiting list.
What would be some good doctors and clinics as a starting point for them? They are considering the Amen clinic as they believe it is all head injury related (which it may be). But I'd rather they rule out or treat CFS first.
I have come up with a list below:
Dan Peterson (because he does thorough testing and looks beyond just CFS and is very aggressive with antivirals)
Neil Nathan
David Kaufman
Bela Chheda
Jose Montoya
Lucinda Batement
Susan Levine
Nancy Klimas
Does anyone know of any other good doctors? I'm going to have them go to their own, local infectious disease doctor for thorough testing first obviously.
I would also be very appreciative if any knows of some "tried-and-true" CFS review papers that are popular for educating people on CFS.
What would you do if you had an early case of CFS and know everything you do now?
Last edited: