That is what I call common sense psychological support. Doing whatever you think you can to make life bearable. I guess it shows sympathy. And I have always thought one could be 'optimistic' without any need for a 'spin'. It helped a lot when my sister in law, who had once had to do the caring I was having to do, just said 'hang in there, you will get through', which could have meant anything, but picked me up off the floor. But I agree that the canned stuff is lethal.
With optimism being considered as compassionate support then I am in agreement with this. Keeping away from spin is critical in my view. More and more patients see through spin from doctors. We are becoming better educated in medical matters. So when doctors use spin and more spin what they really do is destroy trust.
Its always acceptable, in my view, for a doctor to say "I do not know" or "I think this might be the case but we cannot be sure".
I think the way to think about many ME treatments is like diets. There are fads. I have seen poor treatments come and go. They become fads. They attract a cult following. I have debunked one (privately, don't ask) and been involved in criticizing a few more in private research forums. I have also been on the receiving end of medical authorities shutting down treatments
that were working. My own 1999 hypothesis was partially disproved (but not totally, another story).
Yet its also important to realize that a lot of progress arises from patient involvement. According to one expert on H. pylori, who I mentioned in a blog, what got antibiotic treatment accepted rapidly was patient insistence. We have a role to play. However with H. pylori the science became more solid over time, and it was medical inertia and interference from pharma who stood to lose billions that delayed uptake of the new treatment.
How many here use guaifenesin? How about high dose antibiotics for long periods even in the absence of Lyme or other pathogens? These have been tried, and are still used. Yet the science is lacking. Its one thing for patients to try these things, we are often desperate and the only way to find if most things work is to suck it and see, the Lemon Rule, but we also cannot say we are sure they are effective treatments for any disease entity until we have the science.
I was also involved in the early debates on things like ONOO and red blood cell deformability. There are flaws in such research. There is uncertainty. It doesn't mean they are wrong, it means we haven't done enough science. So such treatments are experimental.
Yet sometimes progress comes because people experiment. Gosh, I have done it myself, to myself. Its a matter of experimenting with open eyes, choosing safer treatments and protocols, learning the side effects and risks, and not mis-stating any results. Its about honesty, not faddish preaching. The danger with faddish slavish praise for a treatment is that sick patients who are not aware of risks may do things that are dangerous.
One of the best pieces of advice on using more experimental treatments is "Start low and go slow". I have seen this many times, indeed I was promoting it from about 1999, though not stated so succinctly and eloquently.