Review A Perspective on the Role of Metformin in Treating [...] (ME/CFS) and Long COVID (2025) Fineberg et al

[Kitty]

I don't think it matters whether you call it an intervention, advice, common sense, or anything else. What matters, in the sense of whether or not it should be trialled, is whether or not it is treatment.

And it isn't, it's a normal self care behaviour.

It may appear to be an extreme version, but that's only because activity capacity in ME/CFS is vastly lower than in healthy people. Recognising the need for rest and recovery in order to stay well, and being willing to prioritise it over other demands, is still a normal behaviour. It only needs to be managed by others in young children and adults who lack self care capacity.

 

[DMissa]

But do they? Most of the so-called co-morbidities seem to be made up stuff from fringe private practitioners - like MCAS. And surely the question is more about how you 'identify a strategy' for treating ME/CFS when we haven't got enough information to start with, let alone consider the implications of heterogeneity. My experience with treating root causes of heterogeneous diseases is that all the different festures resolve pretty well with one agent.

POTS? Managing POTS seems to be one of the most common pathways by which people gain some improvements in quality of life. I'm not saying it's addressing the other features but it does help.

Edit: I see there was more discussion on this. Fine, whatever you want to call it. Orthostatic intolerance. I know people with ME/CFS who have gained improvement in this domain and it has helped them. They still have other issues, especially PEM, but the OI can be treated and it does help them. And no it's not just salt and water used to do so.

This gets dangerously near the BPS arguments that if we have examples of something sometimes helping, eg some people improving at the same times as exercising, then we should be doing exercise and that it is not acceptable to leave people without any treatment (even if we do not have good evidence for any treatment).

We're not saying it's either-or. We can, at the same time, acknowledge that there is no mechanistically-targeted, effective treatment and that things that are probably safe to try might be able help some people with particular symptoms such as OI. It is not a replacement.

I was going to reply to the thread in sequence but the discussion has gone too long and wide to do this.

Yes, we need trials.

 

[Eddie]

POTS? Managing POTS seems to be one of the most common pathways by which people gain some improvements in quality of life. I'm not saying it's addressing the other features but it does help.

Edit: I see there was more discussion on this. Fine, whatever you want to call it. Orthostatic intolerance. I know people with ME/CFS who have gained improvement in this domain and it has helped them. They still have other issues, especially PEM, but the OI can be treated and it does help them. And no it's not just salt and water used to do so.

Agreed, it does feels like there are treatments for OI/POTS that do frequently help people even if they didn't work for me. Here is a small trial of Ivabradine that seems to provide positive results.

https://www.sciencedirect.com/science/article/pii/S0735109720381316