ME & Metformin Use ?

[Aldebaran's Star]

Good day everyone,

I hope that you're having a decent day.

I've read that metformin is a 'miracle' drug, that can be used for people without diabetes. People -non-diabetics- that have taken it say they feel better, they have a boost of energy, and that off-label metformin could be given to people with ME/CFS.

Naturally, I looked at the drug profile. There is a black box warning that accompanies the drug for risk of lactic acidosis.

Having read all kinds of literature and random studies, people with ME/CFS already have higher lactic acid in their body. Though the thought of a medication that is generally well tolerated helping with an energy boost is exciting, what about the risk?

Has anyone tried metformin? What was your experience? I know and understand that everyone responds differently but I thought I'd reach out, I am truly hesitant. My daughter was prescribed metformin, based on help with energy (?) but not tested for the current levels of lactate in the blood.

As always, your responses are greatly appreciated and very helpful. Have a great day as best you can.

 

[Kitty]

I can't answer your question, I know nothing about pharmacology...

I've read that metformin is a 'miracle' drug

...but that's where I'd stop reading. Everyone has their own point of view, of course, but mine is that this kind of experimentation is for clinical trials, not individual doctors trying stuff out on patients.

people with ME/CFS already have higher lactic acid in their body

We don't really have much evidence of that, and I wouldn't see it as the main issue anyway. The problem is that nobody knows whether metformin is safe or useful until it's trialled properly.

I'm sorry if that doesn't sound at all helpful! I just find it worrying that doctors are doing this.

 

[Aldebaran's Star]

@Kitty . Thank you for your reply. I read a study where every person in the CFS study had higher lactate in their CSF. Maybe it's not in their blood stream?

 

[Wonko]

I am also not a pharmacist but I have on metformin for several years.

It did not do anything for ME.

I came off it because I became intolerant of it, fairly significant gastric issues.

 

[Jonathan Edwards]

I would echo Kitty's comment. And add that as a general rule something that might produce a useful benefit is always going to have the potential to produce equal or greater harm - which may only be apparent yers later. We had that with steroids, practolol, thalidomide, Vioxx...

 

[Aldebaran's Star]

@Wonko Did it make you worse in any way? Thank you for your reply .

@Jonathan Edwards Yes, indeed. I just do not understand, but Kitty said it correctly and I guess that's what it is, that it seems that the doctor is trialing, on my child, after maybe reading one study. Thank you for you reply.