Hi waiting, for any piece of medical research to be of any use in distinguishing one illness from another, it has to fulfil two criteria first it must be done on patients that all have the same disease, and the tests must also be done on all other similar diseases to find out if these results are also found in any of these other diseases, and the findings have to be verified by other researchers.
Both the Pacific fatigue lab testing and the work of the Lights is done on patients diagnosed with CFS by using the CFS criteria, CFS is not ME, and it is not a disease it is a group of symptoms that could be caused by hundreds of different conditions. Neither the Pacific fatigue labs or the Lights extensively test their patients to make sure that every other possible illness is ruled out in the way that Dr Hyde dose, his patients have also been diagnosed with CFS by other doctors who are convinced that this is what they have, Dr Hyde finds that about 80% of these patients are misdiagnosed and have another known illness.
The findings of the Pacific fatigue Lab and the Lights has also not been tested on all other diseases that could be mistaken for ME to see if they are findings common to other diseases!
So what we have is research based on using CFS diagnostic criteria, which shows a lack of understanding that CFS is not ME, the patients that they are using have not been extensively tested to rule out all other diseases, raising the strong possibility that the research is being done on mixed cohorts, and research has not been done on all other conditions that could be mistaken for ME to see if these results can be found in other conditions. And none of this work has been verified by other researchers.
This work is interesting, but that is all, at the moment it means nothing, it will be at least a decade before enough research has been done to prove what if any relevance it has to ME, or if it will turn out just as it has been with NK cell, RnaseL and Mitochondrial dysfunction, etc, etc, all of which have been said to be exclusive to ME and then turned out to be common findings in many conditions.
The point that Im trying to make is that PEM the group of symptoms explained in the likes of the CCC is not exclusive to ME, it is a common symptom found in many conditions and this is not just my opinion it is a medical fact, and none of the writers of the CCC or any other definition have ever said that PEM is exclusive to ME they have said that it is a Cardinal not Exclusive symptom and have laid out an extensive list of other diseases that can cause it. Im not saying and nor are any of the diagnostic criteria that something like a CPETs test is or is not a measure of PEM or ME because the research has not been done to prove what relevance this has yet.
Please dont take this the wrong way, everyone is intituled to their own opinions, but you are saying that these findings are only found in ME based on a small amount of unverified research, with some serious potential flaws in it, that is going to need years of additional research to back up these claims and see if they do have any meaning for ME.
My concern with this is that a lot of people read what is written on this forum, if they have PEM and read your post without a full understanding of how unproven this research is, it may convince them that they could only have ME and stop looking for other potential causes, if their PEM is actually caused by something like Addisons, hemochromatosis, cancer, lupus etc, etc, which can and do cause PEM it could be disastrous for them. Please be careful about the way things are written peoples lives are at stake and the research has not been done sufficiently for anyone to be making definite claims about what it means yet.
All the best
Both the Pacific fatigue lab testing and the work of the Lights is done on patients diagnosed with CFS by using the CFS criteria, CFS is not ME, and it is not a disease it is a group of symptoms that could be caused by hundreds of different conditions. Neither the Pacific fatigue labs or the Lights extensively test their patients to make sure that every other possible illness is ruled out in the way that Dr Hyde dose, his patients have also been diagnosed with CFS by other doctors who are convinced that this is what they have, Dr Hyde finds that about 80% of these patients are misdiagnosed and have another known illness.
The findings of the Pacific fatigue Lab and the Lights has also not been tested on all other diseases that could be mistaken for ME to see if they are findings common to other diseases!
So what we have is research based on using CFS diagnostic criteria, which shows a lack of understanding that CFS is not ME, the patients that they are using have not been extensively tested to rule out all other diseases, raising the strong possibility that the research is being done on mixed cohorts, and research has not been done on all other conditions that could be mistaken for ME to see if these results can be found in other conditions. And none of this work has been verified by other researchers.
This work is interesting, but that is all, at the moment it means nothing, it will be at least a decade before enough research has been done to prove what if any relevance it has to ME, or if it will turn out just as it has been with NK cell, RnaseL and Mitochondrial dysfunction, etc, etc, all of which have been said to be exclusive to ME and then turned out to be common findings in many conditions.
The point that Im trying to make is that PEM the group of symptoms explained in the likes of the CCC is not exclusive to ME, it is a common symptom found in many conditions and this is not just my opinion it is a medical fact, and none of the writers of the CCC or any other definition have ever said that PEM is exclusive to ME they have said that it is a Cardinal not Exclusive symptom and have laid out an extensive list of other diseases that can cause it. Im not saying and nor are any of the diagnostic criteria that something like a CPETs test is or is not a measure of PEM or ME because the research has not been done to prove what relevance this has yet.
Please dont take this the wrong way, everyone is intituled to their own opinions, but you are saying that these findings are only found in ME based on a small amount of unverified research, with some serious potential flaws in it, that is going to need years of additional research to back up these claims and see if they do have any meaning for ME.
My concern with this is that a lot of people read what is written on this forum, if they have PEM and read your post without a full understanding of how unproven this research is, it may convince them that they could only have ME and stop looking for other potential causes, if their PEM is actually caused by something like Addisons, hemochromatosis, cancer, lupus etc, etc, which can and do cause PEM it could be disastrous for them. Please be careful about the way things are written peoples lives are at stake and the research has not been done sufficiently for anyone to be making definite claims about what it means yet.
All the best