Thank you all for the new posts re: my question about ion transport being listed in the ICC criteria and I apologize for my slow reply! I wanted to add that I am very interested in ion channelopathies but I have absolutely no political agenda re: these different ME/CFS criteria and it was not the purpose of my question (just to clarify).
The ICC is the evolution of the CCC, and the ICC Primer is the largest and most detailed document on ME. Therefore, it is still incomprehensible to me why it is not used.
Thank you for explaining and I did not know the sequence of the different criteria or that the ICC was the largest or the most recent of the bunch. Upon learning that, it is interesting to me as well why it is not the criteria that is used. I think (but am not certain without checking) that the CCC criteria was used to select patients for the Rituximab studies and am now wondering why the ICC criteria was not used?
but you can see for decades, as the health authorities to dilute the ME diagnosis. first with the euphemism "CFS" and most recently with SEID. Strangely enough, this doesn't bother anyone on phoenixrising. Why?
I can only speak for myself but I do not know the history of the different criteria. I was given an ME/CFS diagnosis in 2013 and 2014 by about six different doctors and whole-heartedly believed it to be my diagnosis which is how I found PR.
As of 2016, my ME/CFS specialist did not feel that it was my diagnosis after all and I agree w/this. However, he said that I was one of the sickest patients that he had (at that time prior to my treatments) and it turned out from several blood panels done by Mayo's Lab that I have an (autoimmune) ion calcium channelopathy (among several other problems). It was not until last week that someone told me that the ICC lists "ion transport issues" which shocked me and made me want to learn the origin of how this symptom came to be included in the ICC.
It reads as if it isn't necessary to show evidence of an ion transport impairment; just at least one symptom of such (and the symptoms, of course, are common to a number of conditions and can have multiple causes.) I don't know whether it's deliberately vaguely worded or not, though.
First
@Moof, I love your new avatar
... Now back on topic, I understand what you mean re: that it isn't necessary to show evidence of an ion transport impairment (like I have with the Mayo Panels) but if that is the case, why are those words included at all? Why not just list the symptoms (cardiac, respiratory, temperature regulation, etc)? I am so confused by how those words came to be included by a panel of so many ME/CFS experts?
Similarly regarding the topic of this thread: the ICC section entitled Energy Metabolism/Ion Transportation Impairments: I don't think there is any solid evidence to indicate that the symptoms and conditions listed in this section are caused by either energy metabolism or ion transport dysfunction.
But if they are not caused by either energy metabolism and/or ion transport dysfunction, why is that the title of the section?
Incidentally, in the
original ICC paper, that section is labelled not
Energy Metabolism/Ion Transportation Impairments, but
Energy Metabolism/Transportation Impairments.
So if you remove the word "ion" and just call it "transportation impairments", what kind of transportation do they mean if not "ion"? (I am asking for real because I don't understand their intention).
Also, I met (almost) every single criteria in that section prior to my successful treatments (orthostatic intolerance, hypotension, POTS, palpitations, dizziness, air hunger, labored breathing, fatigue of chest wall muscles, subnormal body temperature, cold extremities, and intolerance of extremes of temperature).
There were only three symptoms in that section that I did not meet: light-headedness, sweating episodes (and I had the opposite which was a lack of ability to sweat), and feverishness.
I am mentioning this b/c whatever illness I had was a near perfect match for the section of the ICC titled "ion transport issues" and I have a proven ion transport issue. (I also have MCAS, POTS, Hashimoto's Disease, severe chronic neck pain, and other stuff that is probably not related).
Generally speaking, many ME/CFS symptoms can be exhibited by patients of channelopathies. In fact, it can be devilishly hard sometimes to distinguish the two.
That is really interesting and I belonged to a private medical group on FB in which everyone has a (proven) calcium channelopathy and almost 100% of the people in the group also have POTS. I cannot explain why this is the case. Many had been given an ME/CFS diagnosis at some point in their medical history as well.
Sure matches what I have seen and learned. POTS, for instance, is surprisingly (?) common in PP.
@duncan, so most people with PP (periodic paralysis), which please correct me if I am wrong, is a Potassium ion channelopathy also have POTS?
I'm out of the discussion. no energy to constantly discuss such nonsense. I sometimes get the feeling that some people in this forum are taking preventive action so as not to push ME research forward. ICC are the evolution of the CCC and the CCC are from 2003. 16 years old. many studies are not included there. we would have been far more advanced in research if every researcher were to take on the ICC. instead, researchers use fukuda or SEID to recruit people with depression. so we will never find a treatment if not even the patients manage to pull together!
I don't think that you should leave the discussion but I did want to reassure you that my purpose for starting this thread and posing the question re: the history of "ion transport" issues in the ICC was NOT for political reasons re: which criteria was superior or what things should be named, etc.
I think we are on the same page that I would also LOVE for ME/CFS to be solved because it does not help for anyone to be misdiagnosed (in either direction) meaning someone with ME/CFS is told they have something else or someone who truly has something else is told that they have ME/CFS. No one gets the right treatment when that happens and it also confounds the results of research studies.
I am confused myself why the most recent criteria (ICC) would not be used for the research studies? Also do you know (Peter Pain) why they included "ion transport" issues in the ICC but not in the other criteria? Was it b/c of the research on calcium channelopathies being done by the ME/CFS team in Australia?