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

[Peter T]

Yeah they do. POTS is a more common one. Absolutely, the goal is to try identify treatments of ME/CFS which would be a lot simpler if we knew what the mechanism was.

Doesn't mean clinicians can't help now by trying to manage symptoms while identifying and treating comorbidities. At least some direction away from GET or whatever else gets advised. I think there is a spectrum of advice from good to bad, not simply black or white because people try always look to try something.

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).

 

[Jonathan Edwards]

Yeah they do. POTS is a more common one.

I disagree. This is just the sort of confusion the 'ME experts' peddle. POTS is a hypothetical 'syndrome' supposed to be mediated by events in which tachycardia is crucial. There are two problems with this. Firstly, it is very unclear what role the tachycardia plays if any in these people's symptoms. Secondly the 'syndrome' that is supposed to go along with POT (without the S) is pretty much ME/CFS. So ME/CFS is associated with ME/CFS? ME/CFS includes orthostatic intolerance as a common feature, but as ME/CFS Science Blog has pointed out, the role of POT is very unclear.

I think we need to do better than this sort of muddle.

 

[Trish]

The question of what to refer to as a comorbidity and what is part of ME/CFS is confused, I think, because not everybody with ME/CFS experiences orthostatic intolerance, not all experience pain, not all experience gut problems. But many of us have these symptoms as part of our ME/CFS.

So do we say POTS, fibromyalgia, IBS, headaches, are comorbidities? If they arrived as part of the package of symptoms when ME/CFS with PEM started, and fluctuate as part of the person's ME/CFS, then I think they are symptoms of that person's ME/CFS, not comorbidities, and treatment of them, if available, is part of symptomatic treatment of ME/CFS.

I take co-morbidities to mean if someone, for example, also has asthma, or diabetes that also needs treatment. So 'co-morbidities' is a shorthand way of saying this person has multiple chronic conditions with different onset, causes and treatment.

Having written all that, I looked up the definition:

plural noun: co-morbidities
the simultaneous presence of two or more diseases or medical conditions in a patient.

 

[Jonathan Edwards]

the simultaneous presence of two or more diseases or medical conditions in a patient.

Yes, strictly speaking co-morbidity is just the coincidence of two diseases. In that sense it is irrelevant to the management of ME/CFS itself unless there are potential implications of treating one on the other.

People in the ME/CFS advocacy world have come to use the term co-morbidity to mean other conditions with an increased chance of co-occurrence with ME/CFS and, as we have both noted, there seems little evidence for there being any, over and above features that are recognised as part of ME/CFS anyway.

 

[MelbME]

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).

I'm not sure I understand what you mean here.

What is close to that argument?

 

[MelbME]

I disagree. This is just the sort of confusion the 'ME experts' peddle. POTS is a hypothetical 'syndrome' supposed to be mediated by events in which tachycardia is crucial. There are two problems with this. Firstly, it is very unclear what role the tachycardia plays if any in these people's symptoms. Secondly the 'syndrome' that is supposed to go along with POT (without the S) is pretty much ME/CFS. So ME/CFS is associated with ME/CFS? ME/CFS includes orthostatic intolerance as a common feature, but as ME/CFS Science Blog has pointed out, the role of POT is very unclear.

I think we need to do better than this sort of muddle.

Then why does treatments to improve the postural tachycardia improve the POTS itself to a point of being managed?

 

[Utsikt]

Then why does treatments to improve the postural tachycardia improve the POTS itself to a point of being managed?

There is no evidence of sufficient quality that e.g. betablockers, compression garments or increased salt intake improves the OI part of POTS.

Or have I missed some studies?

 

[Jonathan Edwards]

Then why does treatments to improve the postural tachycardia improve the POTS itself to a point of being managed?

Is there any reliable evidence to that effect? Slowing down tachycardia will presumably remove the symptom of a racing heart (and maybe associated anxiety) but what evidence do we have for that impacting on some other 'syndrome'? I didn't think there were any decent trials for 'POTS' much.

 

[MelbME]

Is there any reliable evidence to that effect? Slowing down tachycardia will presumably remove the symptom of a racing heart (and maybe associated anxiety) but what evidence do we have for that impacting on some other 'syndrome'? I didn't think there were any decent trials for 'POTS' much.

The research field is even smaller than ME/CFS but yes specialists say that most people gave milder cases where treating POTS with salt/water/compression is enough for most to resume life quickly. Often the severe POTS patient are those that have comorbid ME/CFS or long COVID. Those are also the ones more likely to be invested on the disease itself.

Salt/water/compression is considered baseline therapy. Beyond that there haven't been completed drug trials (some are ongoing) but all the specialist clinicians use a similar combination of therapies in different orders.

Prof Satish Raj does a good talk on the topic:

 

[Peter T]

I'm not sure I understand what you mean here.

What is close to that argument?

Sorry I probably shouLd not be posting today, I am struggling with my cognitive posting.

Once I had posted I realised that quoting your post didn’t make sense but I was struggling with how to clarify what I meant. Discussions on more that one thread have been veering towards the suggestion that there are some medications that work for some people and not for others, even though we do not have good trial data to support this. Further at times some seem to be suggesting that because we have not evidenced treatments it is some how more justifiable to try medications that some think might work.

 

[Jonathan Edwards]

The research field is even smaller than ME/CFS but yes specialists say that most people gave milder cases where treating POTS with salt/water/compression is enough for most to resume life quickly. Often the severe POTS patient are those that have comorbid ME/CFS or long COVID. Those are also the ones more likely to be invested on the disease itself.

What 'specialists' say is largely salestalk as far as I can see in this area. The body's homeostatic system keeps volume and sodium levels constant for all of us despite wide variations in input. The likelihood that altering salt and water intake can shift things for people with tachycardia for more than an hour or two seems to me slim and I have not seen any decent studies to the contrary. Without careful trials I don't see that we can assume anything much about the physiology.

Raj gives us a pretty rag-bag mixture of data on all sorts of things including a 3 months exercise programme!!