Reversible widespread brain 18F-FDG PET hypometabolism in [CFS] treated by hyperbaric oxygen therapy, 2021, Guedj et al

This is all I have at the moment. It is noted as being "Image of the month".

Paywall, https://link.springer.com/article/10.1007/s00259-020-05122-0

 

hyperbaric oxygen therapy was recommended to me by a friend when I got ME, and there's somewhere local where I could have it. I looked into it and decided not to for some reason. Can't remember why, but my past self will have done just a good a job of looking into it as I could do now, so I'll take his word for it.

 

Here’s the paper

 

It's an interesting case study, but we can't judge the value of the finding until a proper study is done.

 

Thanks. Unhelpfully there is no indication if any criteria was matched.

 

Is this promising enough to do a proper study?

The brain imaging was done before and after treatment. That means the improvement in hypometabolism could last only for a short time. Treatment is not cheap but it would be worth it if it gives long lasting benefits.

On the physical subscale of the SF36, the patient's initial score was 57 and at the end of treatment 70.
On the mental function subscale it was 48 and 69. Could be all down to placebo but who knows.

 

Considering that more invasive treatments tend to produce a stronger placebo effect, it is indeed very likely that it is placebo. Then again who knows, I've heard of many people reporting improvements from HBOT. We need a proper, placebo-controlled study to know for sure.

 

I did a little reading on this yesterday. My understanding is that it's very difficult to do placebo-controlled trials of HBOT. Sham treatments cannot mimic the impact of air pressure changes on the inner ear and the participant is very likely to know they are in the placebo group.

 

I think it could work as there is often not any sensation in the ears.

I went to HBOT for 25 years and it was not a cure by any means but it helped with pain and sleep. I would describe it as feeling an uplift like a day at the seaside.

HBOT works by saturating the plasma so that oxygen can reach where blood cells can't go. Its greatest benefit is healing wounds and its use in MS reflects that.

I have not been able to go since lockdown in March and I am definitely not so well. My toes are often white and the neuropathy in my feet is much worse.

It is a treatment but any benefit has to be offset by the physical effort to get it. An ME centre could give it lying down and that would make it more accessible.

 

My experience: I did 8 weeks of 1 hour sessions of Hbot at 2.4ATA in hospital setting.. did nothing at all for my ME sadly.

 

I've been having HBOT recently so will briefly share my experience. I did it specifically in order to try to test Rob Phair's metabolic trap theory as I have a confirmed damaging IDO2 mutation (assessed via Whole Exome Sequencing) and he mentioned that HBOT might be able to reverse the trap in his talk he gave in Australia a couple of years ago (specifically from about 34mins in):

https://www.youtube.com/watch?v=Quh-77gvw4Q

I've had ME (presumed post infectious) for 18yrs, moderate case (4/10 Bell scale) and have tried lots of therapies (including Valcyte under the care of Martin Lerner) but no improvements at all from anything.

I underwent HBOT (2.2atm; 100% O2; 90mins - 45mins x2 with 5 mins air break, for 10 days (Mon-Fri only) back in October 2019. Much to my surprise, on the first day following the end of my treatment, I had ONE (only) near-normal day (say a 9/10), felt great and was able to walk up stairs with no symptoms, do housework etc, so a definite improvement. But it only lasted one day unfortunately... but at least we thought we were onto something!

I was due for further treatment when covid struck and it's taken me a while to organise more HBOT as most of the chambers are currently closed. However, I've recently been able to undergo treatment at the centre at Tameside (nr Manchester) though I couldn't replicate the precise protocols I had before.
http://tamesidehbotcentre.co.uk/

In the autumn I had: 6 weeks (Mon-Fri) of HBOT, with pressures of 2-2.5atm but only 60 mins at depth
Just last week I had: 1 week (Mon-Fri) of HBOT, 2 sessions on Mon/Wed/Fri and 1 session (but prolonged) on Tues/Thurs
Unfortunately, neither of these protocols gave me any improvement in my symptoms as I'd had previously. This may be due to the different protocols, the extra travelling / commuting / exertion involved in getting to Manchester which was pretty brutal (I live in Yorkshire) or the fact that my one near-normal day was simply a spurious result (could it have been placebo?? I'm not sure but I think less likely as I've not had a placebo effect with any other treatments and such effects do tend to happen early in treatment rather than later). So we need to have a think about whether it's worth proceeding with more treatment or not...

Unfortunately, the case report in this thread doesn't state the precise HBOT protocol nor the time frame for the subjective improvements - most HBOT papers I've read on ME / FM etc have no data on long-term effects of treatment which is frustrating. Prof Efrati in Israel seems to do a lot of work on HBOT and this is his paper on FM (which also discusses their use of the 'crossover approach' to overcome the lack of a true 'sham' treatment (p4), as mentioned in this thread):
https://pubmed.ncbi.nlm.nih.gov/26010952/#:~:text=Conclusions: The study provides evidence,related areas of FMS patients.

Of note, Rob Phair's theory suggests that any response to HBOT via resolution of the metabolic trap should lead to a full and permanent recovery (hence why I was so keen to give it a try!) but I'd not read of any such responses from ME/FM patients in the literature and the improvements in SF-36 scores in both the Efrati paper and the case report suggest that the mechanism is probably not via the kynurinine pathway, most likely via reductions in neuroinflammation I presume.

I also found this presentation by Dr Scott Sherr useful when I was researching HBOT, ME is briefly mentioned in the Q&A:

https://www.youtube.com/watch?v=z6qy1hq2zqM

So in summary, for the first and only time in 18 years of having ME, HBOT gave me a near-normal day but I can't fully explain this and, unfortunately, I haven't (so far) been able to reproduce this clinical improvement. But the chamber at Tameside is relatively cheap (compared to prices I've seen at London clinics) so others in the area may feel it's worth a try? There are other HBOT protocols I'm looking to explore so will update you on any progress I make.

 

Welcome to the forum Chris, and thanks for letting us know your experience of HBOT.

 

Thanks for the warm welcome @Andy and @Trish