My doctor wants me to try “oxygen therapy” after seeing it on a “treatment list” by an “expert doctor” in ME/CFS. I’m aware there probably isn’t any evidence behind this, and am slightly baffled why I was prescribed it given my oxygen levels are normal. What I’m wondering is, could this make me worse? Or if it’s 100% covered by insurance is it worth a go? It’s not the kind that you have to do in hospitals or anything. My caregiver would just pick up a bottle at the pharmacy along with my other usual drugs I can do it in bed, so pacing wise should be okay. [perhaps the wording of my questions are akward given the no medical advice rule, so what I really mean is I’d appreciate if anyone has any anecdotes/knowledge on the subject. Cheers]
What there is I think is about oxygen in a pressure tank like divers. I think there’s a thread on the forum somewhere HBOT. Hyperbaric Oxygen Therapy. Never seen anyone post about standard oxygen bottles someone with breathing problems would have. I would ask them if they have links to the evidence for the use of oxygen. There probably isn’t any so hopefully they will drop it.
What I’m thinking though is both my doctor and the disability agency is putting pressure on me to “try” “treatments”. I’d much rather “try” oxygen than things that will make me worse like GET. I just have no clue if there is a risk of me worsening.
If it actually worked i’d try any drug no matter how dangerous. But we’re at a point where nothing works…
see tag 'oxygen' (I had oxygen on prescription but that was mostly because of breathing problems after pneumonia, but it helped with migraines also.)
If you have to go out for the treatment, or deal with being instructed at home, then there is a risk of worsening. I'd ask the doctor for his/her evidence that oxygen would be more beneficial than breathing air, then read it very carefully indeed.
Maybe "oxygen therapy" wasn't properly defined. Simply breathing in some extra oxygen isn't the same as HBOT, but maybe your doctor isn't aware of the difference? "I saw it on a list, supported by anecdotal evidence" is not a valid basis for prescribing a treatment, especially when PWME risk worsening. If it was free and convenient, I'd try it. How likely I would be to refuse it would depend on cost and inconvenience.
There isn't the slightest reason to use oxygen this way in ME/CFS. The only reports there are relate to hyperbaric, as others have said, and the evidence there is pretty useless. Prescribing oxygen is quackery to my mind - pure and simple. Expert doctors with it on their list are quacks. (Sadly most 'ME expert doctors' probably are.) I think the risk to health is small but remember that oxygen is dangerous. It greatly increases the risk of your house burning down if pure oxygen is being puffed about. Cigarettes can burst into flames and so on.
Thanks for the warning. That would explain the fire brigade car outside our house the other day: our next-door neighbours were hospitalised with what they said was a bad case of flu over New Year, and we've seen oxygen cylinders being delivered. I do hope they don't smoke (we haven't been here that long, and haven't been invited in yet, so I've no idea whether they do).
