Hi Justy, you are very right PEM is found in MS, Lupus and Sarcoidosis, but not only that it is also found in many other diseases.
The belief that PEM is exclusive to ME is nothing more than a dangerous internet myth that seems to have started by people misreading the diagnostic criteria, manly the CCC then somehow this false belief has become established as if it is a fact.
What the CCC says is that PEM is a cardinal symptom not an exclusive to ME symptom!
The CCC also says that this list of diseases must be ruled out because they can cause the same symptoms as ME/CFS I.E. they can cause PEM
Addisons disease, Cushings Syndrome, hypothyroidism, hyperthyroidism, iron deficiency, other treatable forms of anemia,
iron overload syndrome, diabetes mellitus, and cancer. It is also
essential to exclude treatable sleep disorders such as upper airway resistance
syndrome and obstructive or central sleep apnea; rheumatological
disorders such as rheumatoid arthritis, lupus, polymyositis and polymyalgia rheumatica; immune disorders such as AIDS; neurological
disorders such as multiple sclerosis (MS), Parkinsonism,
myasthenia gravis and B12 deficiency; infectious diseases such as tuberculosis,
chronic hepatitis, Lyme disease, etc.; primary psychiatric
disorders and substance abuse
All these diseases can cause PEM and it is far from a complete list of all the possibilities. No Sarcoidosis on this list.
Added to this what is described as the symptom PEM is not a description of a symptom it is a description of a group of symptoms which can vary greatly from patient to patient because they say it can be and/or pain, fatigue or malaise
Post-Exertional Malaise and/or Fatigue: There is an inappropriate
loss of physical and mental stamina, rapid muscular and cognitive
fatigability, post exertional malaise and/or fatigue and/or pain and
a tendency for other associated symptoms within the patient's cluster
of symptoms to worsen. There is a pathologically slow recovery
period.usually 24 hours or longer.
These kinds of symptoms are found in many conditions.
The ICC description is also not one of a symptom but of a group of symptoms that are found in many diseases, Again they say it is a cardinal symptom not an exclusive to ME symptom, and that other diseases that can cause these symptoms must be ruled out although this time they do not attempt to list them.
The truth is that PEM is found in many different conditions that also have the other symptoms being attributed to ME, and no reputable medical source has ever said that PEM is only found in ME, quite the opposite they have said it is found in many conditions.
If PEM was exclusive to ME then it would be one of the easiest diseases in the world to diagnose, but it isnt exclusive to ME it is a symptom common to numerous conditions. As Dr Hyde says on page eleven of the nightingale criteria
http://www.nightingale.ca/documents/Nightingale_ME_Definition_en.pdf
failure to recover rapidly following exposure to normal physical or intellectual stressors occur in most if not all progressive terminal diseases and in a very large number of chronic non-progressive or slowly progressive diseases.
As is being shown by what Gamboa is reporting in this tread
http://forums.phoenixrising.me/showthread.php?17174-My-visits-with-Dr-Byron-Hyde Dr Hyde doesnt just say that the patient has PEM so it must be ME they are given an amazingly intensive investigation and it is expected to take six months before it can be confirmed whether Gamboa has ME or something else.
The unfortunate consequences of this dangerous myth that PEM is exclusive to ME, is that patients believe that having PEM means they have ME and therefore dont push for more extensive investigations to find the cause of their suffering, which can lead many treatable and in some cases fatal diseases being undiagnosed with disastrous consequences for the patient.
Although it is impossible to know exact numbers ME is a rare disease, if all the recorded patients from the sixty epidemics from 1934 to the mid 80s are added up it would be lucky to come to a total of ten thousand people, obviously this doesnt include sporadic cases, but it does show just how rare it has been and all doctors in these times who studied it believed it to be a rare disease. The invention of CFS by the CDC in the eighties has been disastrous to ME research. CFS is not a disease, and not ME, it is a group of symptoms hastily put together by a small group of CDC doctors with almost no experience of ME patients, these symptoms are common to a vast number of diseases, it is a meaningless diagnosis of a none existent disease. Since then it has been promoted as being the same as ME and the numbers of people diagnosed with it has exploded with estimates going as high as 17 million, the majority of these people are misdiagnosed and have another known disease not ME. Dr Hyde finds about eighty percent of his patients dont have ME they have another disease that has been missed by the patients doctors failing to investigate them properly. So it looks as if the chances of having an undiagnosed known disease instead of having ME are far higher.
You are also right that tests that show mitochondrial abnormalities, oxidative stress, low antioxidant levels and high cell free DNA, are found in many other conditions, these tests do not diagnose ME all they show is that you are sick with god knows what, which you already knew.
I dont doubt the likes of Jason and Evans good intentions, but the continual attempts by various groups to re juggle the symptoms of ME to come up with a working criteria are largely a waste of time. The symptoms of ME can vary greatly from patient to patient and overlap with many other diseases it is impossible to write a set of symptoms that prove that the patient has ME, it can only ever mean that ME is one of many possibilities, and the patient will then have to have all other possible diseases ruled out before they can be diagnosed with it. Unfortunately despite the fact that this is a scientific and common sense approach it just isnt happening and ME or CFS diagnoses are being given out at ever increasing rate often with an appalling lack of investigation to rule out other possible causes leading to vast numbers of people suffering needlessly.
On a personal note Justy, Im saddened and disgusted by the lack of investigation you have had, and appalling treatment and really hope you can find a doctor who will take you seriously and properly investigate you to see if any other diseases have been missed!!!!
All the best