Hundreds of bedside one on one interviews with patients.
Because my real life friend tried something in isolation that moved her from housebound to able to work part time with pacing, and yes she deals with PEM and does have genuine ME/CFS.
The point I am making is only that for interventions with negligible risk of harm the smallest possibility of a true cause and effect for some people may not warrant blanket discouragement. I am not talking about guidelines or quack doctors or other third parties getting carried away with thinking that the illness is effectively treatable, I am talking about conversations with patients in the interim.
I will repeat myself:
I will flip this around. If I adapt your comment, BPS folks might say "It (a biological basis of the illness) is seemingly only based on flimsy studies and the judgment of biologists".
If BPS cannot reasonably dismiss biological explanations on the basis of biological studies being mostly inconclusive then I don't know how easy it is to completely dismiss carefully discussed patient testimony. I'm not saying that these things are going to help you or most people, I am saying that I believe that some things that some people that I know have tried have helped them manage particular symptoms (not general malaise & fatigue, not PEM, not brain fog).
Just as there are challenges for mechanistic studies in cohort ascertainment, time-fluctuating features of the illness, and knowing where to look, there are challenges for trials too. Trials failing doesn't mean that:
What it means is that we don't yet know what might help.
A lot of this is dangerously close to absence of evidence = evidence of absence territory.
Yes, we should not put patients at risk of harm or base guidelines on things that are inadequately evidenced. But what if an intervention is safe and may have a chance, even small, of alleviating a particular symptom that an individual is struggling with? Do we adopt a blanket position in individualised conversations of saying "no, you're not allowed to try"?
Nobody reasonable is saying there are effective treatments for core ME/CFS features. Every single paper or grant application I have written has this in the first few lines.
Thank you for continuing to engage with us on these thorny issues, and for your research work. We need more people like you.
I find this situation really difficult to deal with. I accept that there are some symptomatic treatments some people find make a big difference for their quality of life and capacity to function, while not curing the core feature PEM. That seems particularly the case for those who have raised heart rate on standing, commonly called POTS.
I don't think most of us are saying these treatments should be banned for pwME. Nor are we criticising pwME who want to try them. If it is headaches or insomnia, rather than PEM, or POTS rather than PEM that is limiting someone's abililty to function, it seems logical to me from the patent's point of view for them to try whatever treatment for that symptom their doctor recommends.
I don't think that contradicts the responsiblity of doctors to carry out clinical trials of the drugs they are recommending, nor does it contadict our criticism of such doctors for going on for decades recommending unevidenced treatments without bothering to set up clinical trials.
And for many of us, even if we try these symptomatic treatments, our OI is not related to POTS so that treatment is no use. And for many of us PEM and/or cognitive dysfunction and/or OI not caused by POTS are the major factors that limit our capacity to function, so there aren't any drugs that will improve our symptoms or function. Also many of us have nasty side effects from many supposedly benign drugs.
I am wary of muddling up discussion of scientific hypothesis papers with discussion of anecdotal evidence. It's all very well to say 'I have a friend who got a lot better with treatment Z.' Or even 'I know lots of people who improved with treatment Z'. Until treatment Z has undergone double blind clinical trials we can't know definitively whether treatment Z will be of more benefit to pwME than placebo. Look at what happened with rituximab. Look at all the claims of recovery with brain retraining.
Is it really any better for a scientist to tell us they have observed lots of people who say they improved with treatment Z, than a person like the one who joined the forum recently to telll us she knows 'thousands' of people with ME/CFS cured with brain retraining? How do we balance the veracity of those anecdotes?
In the end it leaves pwME in a muddle over what to do, either forever chasing the latest treatment on the basis of anecdote, or giving up altogether and choosing not to get swept along by strings of convincing sounding anecdotes, and to manage our lives as best we can while we hope to be among the lucky ones who improve naturally, and while we wait for doctors to get their act together to carry out clinical trials of the drugs they have been recommending without sound evidence.
