I don't understand the relevance of neurological, immunological and cardiac issues since we do not have any good reason at present to attribute objective abnormalities in these systems to ME. Various functional differences have been reported in research studies but nothing that would warrant being part of research classification criteria and certainly not a requirement for clinical diagnosis. Lots of people have ME without specific neurological (unless you include brain fog and sleep disturbance), immunological or cardiac problems so they cannot be required criteria.
A bit more clarification about the patient experience will hopefully clarify for you why it is HIGHLY relevant that the neurological, immunological and cardiac issues are included in a criteria our doctors use when they are evaluating us in preparation for being our medical care providers.
1. If a criteria does not list neurological abnormalities then a doctor will have no idea that a neurologist (who understands the changes seen in ME patients) should be included in the patient's care. We need a neurologist not only to rule out MS (and other issues that can cause similar symptoms), we need neurologists to help monitor cognitive changes/deterioration. To better understand what patients should be getting from neurologist, the NC/Ohio Support group put together a cheat sheet for neurologists based on IC Primer information and patient experience. See here:
https://drive.google.com/file/d/1iZcQ14VaqkHXDb7Dim1VG1qLt8cYZOSz/view
2. If a criteria does not list immune dysfunction then doctors won't understand they should be on high alert for cancers (especially lymphoma), they won't realize that we don't present normally with infections (I have had raging infections with no fever), or even know to look for low NK cell function etc. To better see what immune issues should be part of medical care see this cheat sheet:
https://drive.google.com/file/d/1GBIwpy4GIaFDIAY4cJ-JYtIdYS71cOlJ/view
3. If a criteria does not list cardiac issues in the criteria then doctors are not going to be prepared to understand how dangerous those issues are or watch for the elevated heart rate. See cardiac sheet here:
https://drive.google.com/file/d/1eWNB_-sw9tZmANcE-FMTY1OQQbXLaAgd/view
While nothing in the NC/Ohio support group can be considered "medical advice", the information can help doctors quickly get to the information that is medical advice from our experts.
My point being - doctors who understand how to diagnose ME should have a basic understanding that included in that diagnose are immune, cardiac, and neurological issues.
However - it sounds like you are saying that you don't recognize those three issues as being part of an ME diagnosis. Which raises the question of which patient group are you referring to when you say "ME"?
ME as described by the ICC includes those issues.
ME/CFS as described by the IOM does not include those issues.
So this statement: "Lots of people have ME without specific neurological (unless you include brain fog and sleep disturbance), immunological or cardiac problems so they cannot be required criteria." does not make sense to me.
What would make sense in that sentence is for the label "ME" to be replaced by "ME/CFS".
That brings us right back to the crux of the issue about demystifying criteria. Demystifying the criteria for WHAT patient population?
This debate keeps being waged under a misunderstood premise. "This disease" means different things to different people. But the disease labels HAVE criteria attached to them.
The original document had a paragraph that included this statement: "Generally speaking, when referring to the disease, #MEAction uses ME; however, these diagnostic criteria are not the same, and calling the conditions they describe by the same name would be misleading. If and when we refer to disease names, we will refer to Oxford as describing idiopathic chronic fatigue; Ramsay as ME; Fukuda as CFS; CCC as ME/CFS; ICC as ME; and NAM/IOM as ME/CFS (though SEID was suggested, it was not adopted)."
That statement was one I agreed with (although I don't think we should use ME/CFS for two different criteria). Using this statement, ME refers to either the Ramsay or the ICC patient group. (We can argue another day about whether these capture the same patients.) But I agree with the premise that the ICC is the criteria attached to the label ME. That is the patient group who are recognized as having neurological, immunological, and cardiac issues.
My question for the admin and the bigger group - how, as a science based forum, are we to make any headway if the labels we use aren't clarified. If someone is talking about the science for ME/CFS as if it applies to the science for ME won't we impede the scientific endeavor we are aiming for in this forum?