Thanks for the insights mOjoey.
I think if any lesssons about the patient/doctor relationship have become particularly apparent over the past 25 years (with regard to any illness, but particularly with ME/CFS) it is this - listen to the patients and then, just for good measure listen again. And don't just listen in the first consultation - keep listening, especially when you are running clinical trials.
All too often with this illness, as we know, clinical markers may show one thing and the patient reports the complete opposite, (especially during those first few visits to the doctor's office with ME/CFS when the patient is seriously ill, but all tests come back negative). But if the patient is consistently reporting symptoms, then obviously more work needs to be done, more investigation, until answers are forthcoming.
Who could be more important in this relationship than the patient, around whom the entire medical system purports to be constructed (in theory)? Diagnostic tests are supposd to be merely tools which aid the physician in addition to his/her clinical experience, in coming to a reasonable diagnosis, and once treatment is underway, in monitoring progress.
But there is absolutely no point in asking the patient how they feel and then ignoring the answer whenever it appears to deviate from the one expected, or because it contradicts some dearly held theory and especially so if we are in completely new territory here, as we are, where, let's face it, the patients are actually the only ones that have the full experience of an illness and suffer at first hand the fall out of an inappropriate drug regime.
I am therefore particularly concerned to read that even Dr Peterson (hero of our times) appears to be dismissing the experience of some of his patients. To quote from the article above:
"He said the upshot about the other 30% is that no one gets worse and refutes reports from patients saying they got worse because the clinical markers don't reflect that. I have no way to know if hes 100% right, but I think people may definitely feel worse from the inflammation. I thought maybe some felt worse because they could no longer tolerate the drug (i.e. Andrea Whittemore at one point), but he said it takes on the scale of 10 years for that to happen."
1. If the clinical markers don't match the patients' experience of deterioration on a particular treatment then I would suggest that the physician is missing something - perhaps a vital element of the disease process which could benefit from investigation.
2. The 10 years figure is presumably gleaned from drug treatments in HIV/AIDS and may not translate neatly to effects of the same treatments in ME/CFS (for a start its a different retrovirus which effects the body entirely differently).
3. If patients report deterioration and the doctor does not listen and react accordingly, then we may be missing a VITAL clue to the disease process which may benefit from further investigation and open up whole new channels of treatments and understanding.
For goodness sake doctors - listen to your patients and don't contradict them. They are probably right.