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Hi - I hope this doesn't sound too simplistic but does this make any sense? There are a number of hypothesis about exactly what is going on in any particular CFS/ME patient. Its not clear if there are a couple of mechanisms or one with multiple appearances. Plus there are other conditions with very similar symptoms. I would say it would help to be more specific about your exact family of symptoms and what tests you have had that point in on direction or another to get the best direction. I bet the people here combined can synthesize better than just building the list. A list would be nice but it a big project depending on the definition of a CFS/ME specialist. Where are you coming from? What stage of diagnosis are you at? Has almost everything else been ruled out or do you need to finish the "rule out" list. Your specific situation and stage is I believe critical to finding the best specialist or best set and in which order.
The reason I say this is that I've encountered CFS/ME self proclaimed specialists many of which seem to come from the Alternative Medicine world and at the other end of the spectrum are the more mainstream doctors/PHDs from the research world and everything in between. Some are into very broad more alternative therapies, some more metabolic oriented, immune system focused, viral/infectious focused and immune/viral/infectious focused.
The Immune/viral/infectious seem to lean toward anti-virals like Valcyte and or the new Valomaciclovir, the B cell agents like rituximab or immune modulators like Rintatolimod/Ampligen trying to address the root cause. These tend to be heavy duty and expensive but are supposedly trying to tackle the problem at the state of the art and near the root cause. There are only a handful of clinics working in this area so if your symptoms, testing and desire are too follow this road, there are maybe 10 people.
The alternative doctors are not typically so deep at the research and theory level but often will prescribe some of these drugs but also all sorts of supportive type treatments that rarely address the underlying cause. They are however many more in this category but they may not really understand the latest immunological testing for example. Many double as Lyme disease specialists and CFS/ME which share many symptoms but are very different.
If you were to provide some idea as too what you knew about based on tests like NK cell function etc.. what conditions have been ruled out... where you are coming from.... what your expectations are...... do you need symptom relief like pain, sleep etc.. There are those that focus on areas like the Methylation cycle blocks and other metabolic areas that look similar but are completely different conditions with overlapping symptoms.
My sense is every doctor is unique at what the believe in and whether they are the alternative supportive with supplements etc...but lean away from most drugs and the type or heavy into anti-virals and immune modulators but shy away from helping with specific symptoms and then some I haven't found that can do it all.
It goes on and one but can you see what I'm saying and how it might help you get more focused since its not going to be easy to travel and the more homework and specific you can get plus the more phone conversations or email exchanges the better before making the plunge to go see say Dr Klimas in Florida or Dr Peterson in Incline or Montoya at Stanford or Dr Kogelnik in Mountain View etc.. etc... Then many of these doctors and or clinics have long waiting lists.
If you were to write up your situation, you could try and send it to some of these people and see if you can get their opinion on who to see if they are not too busy. Even though they are somewhat competitive on some level, they do know one another along with strengths and weaknesses from a different viewpoint than patients.
The reason I say this is that I've encountered CFS/ME self proclaimed specialists many of which seem to come from the Alternative Medicine world and at the other end of the spectrum are the more mainstream doctors/PHDs from the research world and everything in between. Some are into very broad more alternative therapies, some more metabolic oriented, immune system focused, viral/infectious focused and immune/viral/infectious focused.
The Immune/viral/infectious seem to lean toward anti-virals like Valcyte and or the new Valomaciclovir, the B cell agents like rituximab or immune modulators like Rintatolimod/Ampligen trying to address the root cause. These tend to be heavy duty and expensive but are supposedly trying to tackle the problem at the state of the art and near the root cause. There are only a handful of clinics working in this area so if your symptoms, testing and desire are too follow this road, there are maybe 10 people.
The alternative doctors are not typically so deep at the research and theory level but often will prescribe some of these drugs but also all sorts of supportive type treatments that rarely address the underlying cause. They are however many more in this category but they may not really understand the latest immunological testing for example. Many double as Lyme disease specialists and CFS/ME which share many symptoms but are very different.
If you were to provide some idea as too what you knew about based on tests like NK cell function etc.. what conditions have been ruled out... where you are coming from.... what your expectations are...... do you need symptom relief like pain, sleep etc.. There are those that focus on areas like the Methylation cycle blocks and other metabolic areas that look similar but are completely different conditions with overlapping symptoms.
My sense is every doctor is unique at what the believe in and whether they are the alternative supportive with supplements etc...but lean away from most drugs and the type or heavy into anti-virals and immune modulators but shy away from helping with specific symptoms and then some I haven't found that can do it all.
It goes on and one but can you see what I'm saying and how it might help you get more focused since its not going to be easy to travel and the more homework and specific you can get plus the more phone conversations or email exchanges the better before making the plunge to go see say Dr Klimas in Florida or Dr Peterson in Incline or Montoya at Stanford or Dr Kogelnik in Mountain View etc.. etc... Then many of these doctors and or clinics have long waiting lists.
If you were to write up your situation, you could try and send it to some of these people and see if you can get their opinion on who to see if they are not too busy. Even though they are somewhat competitive on some level, they do know one another along with strengths and weaknesses from a different viewpoint than patients.
