So while it may turn out that some ME has an immune basis we do not as yet have any reason to think immune dysfunction is 'the core of ME'
This really hits straight at one of the main issues with characterizing ME/CFS, i.e., what is causal vs what is a downstream effect. That we don't know yet is frustrating, especially for those of us who are long term sick.
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@Justy , I have immunological markers like low NK cell function, low IgG and am being tested for MCAS. Regardless, I will not know if any of these immune irregularities are secondary to something else, even though I strongly suspect they are. Talking to ANY GP about the implications for just basic life management is maddening.
I can give a non-ME example of my wife, both in terms of differentiating a downstream effect from a primary diagnosis, and in terms of doctors' ignorance. In this case, it is inexcusable because a bit of research elbow grease would spare a patient not just discomfort, but potential harm.
My wife has Andersen-Tawil Syndrome, which is a form of Periodic Paralysis. There is a chinese menu of symptoms sufferers are subject to, but all of these symptoms ultimately revert back to a single mutated gene, KCNJ2, which results in a potassium channelopathy. Her major manifestation is Long QT and cardiomyopathy, both of which nearly killed her a couple of times. She has three cardiologists.
Every medical issue or approach gets funneled thru one or more of these cardiologists. Each of these sees my wife's life thru their prism, and that only casts a particular hue on cardiac issues. Cardiologists typically sit atop the medical food chain, at least in my experience. But in the past 12 months on at least two occasions, these cardiologists gave her recommendations that were ignorant of PP, and could have caused her harm. They were focused on secondary - but essential - cardiac manifestations, but forgot about what the primary cause was.
Once, a cardiologist wanted her to go to monitored exercise. This sounds reasonable on the surface, but Like pwME, PP patients can react differently to exercie, For my wife's form of PP, she is not at high risk when exercising. It is while at rest, sometimes hours after exercise, that an episode can occur. So monitoring her heart while she is exercising, while appropriate for the average cardiac patient, is almost a waste of time, and certainly contributes to a false sense of security for some PP patients.
Most recently, one cardiologist wanted my wife on statins due to elevated cholesterol. I appreciated his logic, certainly, but his advice was made in a vacuum that seemed not to take PP into consideration. On three separate occasions in a few short months she tried different statins, and each time she became bedridden. I found out that statins are frequently contra-indicated in PP patients. I went with her to the cardio. He was giving her still another lecture on why it was essential that she be on a statin, and I interjected that periodic paralysis patients are often intolerant of statins. He glanced at me in annoyance and turned back to my wife and said, "So, ok, statins cause paralysis in you periodically...." My wife does not suffer bouts of paralysis, and she never has. Many PP patients do not. He went on to say he still wanted her to try another stain option. But my jaw still hurts from hitting the floor when he said that as it dawned on me he did not know what periodic paralysis was - and it was PP that is driving my wife's symptoms.
So, I know intimately that getting to the core cause in ME/CFS is essential. Unfortunately, this might take a while. In the meantime, I will take some of those secondary effects such as immune dysfunction and POTS etc, as they are all I have to offer the medical mainstay. But it sure makes it difficult to talk to most of my doctors.