Leopardtail
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Given @Jonathan Edwards context here, I do understand his point. If the OI is caused by low blood volume, we need to know whether that results from Aldosterone deficient, ADH deficit, or some form of other polyuria. If it's not blood volume we need to establish whether it's of Nervous origin.From what I recall in the research, it's something like 95% of ME/CFS patients have NMH and/or POTS. So not just "many" but rather nearly all of us.
It can show specific blood pressure reactions to orthostatic challenge, which can give relevant specialists a good idea of what to try for treatment. Additional testing can also then be ordered to find a more proximate cause of the OI, such as norepinephrine levels, blood volume, certain auto-antibodies, diabetes insipidus, etc etc.
Most ME/CFS patients actually have NMH, not POTS. But POTS is better understood and easier to say, hence a lot of people with NMH talk about their "POTS" when it's not what they actually have. But that's a somewhat irrelevant matter of terminology, despite doctors often liking to shut down if a patient uses a technically incorrect term at any point
With appropriate followup testing, it should be somewhat straightforward to decide on effective treatments to try. I think it's also a bit ridiculous to completely withhold treatment for a severely disabling symptom on the excuse that it might cause unexpected problems.
OI can and has left me bedbound for weeks at a time. Being forced to lie down all day is painful, frustrating, and really really boring. It's well worth trying a reasonable treatment based on trustworthy test results, when that treatment can cause a drastic increase in quality of life.
Indeed, requiring that we KNOW the cause and KNOW exactly how the treatment will and won't effect us is a rather extreme requirement which I don't think is present in any other illness or even idiopathic and uncomplicated cases of OI. And it's that mindset which is leaving us untested and untreated for extremely debilitating symptoms.
Treating my OI has made the biggest difference to my symptoms thus far, and I only wish I was able to do it with active assistance and oversight from a local doctor.
What we actually need is a NICE (or other national) guideline that states "if an ME patient shows symptoms of OI, then the GP should first test as follows" based upon that results the next action should be: In other words a proper structured pathway for diagnosis.
As he also states for each 'root cause' we need to know what level of which treatment is right for an ME patient. Julia Newton has made a good start on that one, but more work is needed. That however requires the MRC and NHS (here) to stop wasting money testing infective treatments and focus some finance on what does have a chance of working.