Paul Cheney seminar on oxygen toxicity in ME/CFS

Interesting take on the oxygen extraction problems in ME/CFS. He thinks it's a protective mechanism to manage a redox impairment. The body can't get rid of oxygen metabolites fast enough so it reduces the oxygen consumption to avoid damaging itself.

https://paradigmchange.me/wp/cheney/

 

While Dr Cheney was well known in the U.S. for the compassion and care he provided to his ME/CFS patients over many years, I'm afraid that this presentation is not particularly creditable. He had some early clinical insight - he was able to differentiate between the CFS and the FM presentations essentially based on post-exertional malaise long before that term became accepted or routinely used - but, unfortunately, much of this presentation is given over to wild over-extrapolations from minor, unreplicated research findings, and some of his ideas and treatment suggestions are blatantly pseudoscientific.

 

Valid criticism but I would say in his defence he was an important clinician and did a lot to get ME recognised and taken seriously. Much of his work involved working with patients desperate to find improvement and the tendency in such a situation is to hypothesise and test potential remedies on an n=1 basis where the patient is taking the initiative. This is not lab research and any results will be clouded by, idiosyncrasy, wishful thinking and the placebo effect. I am sure everything Dr Cheney did was based on trying to help people, including passing on ideas which may seem to have worked for some individuals but a clinician cannot hope to achieve research level outcomes, its not fair to expect that and he should be commended for having tried to help.

This is why we need disciplined academic laboratory research into ME and even today, with the nebulous criteria for diagnosis still being used I am afraid even the lab work being done is not reliable and it feels to me like we are still swimming in treacle, in circles, while we cannot define the condition or subgroups so that experimental findings are replicable.

 

His insights into heart problems were very important as he was following up work on diastolic heart failure done by the cardiologist Peckerman at the NIH. Natelson carried on with this at the NIH when Peckerman retired and the feeling was he was finding interesting things then suddenly it stopped and the results were never published and there was no more research.

All Cheney's work should have been followed up with proper research but no money was made available and the ideas just dropped.

The insights from someone who saw thousands of patients are very important. Pseudoscience is not the word to use. He may have been wrong but this is not LP and it was all based on searching for answers from researchers and clinicians and trying to find ways that would help a disease ignored by medicine and pharmacology.

Being wrong is not unscientific.

 

There's a new Natelson paper out now: https://translational-medicine.biomedcentral.com/articles/10.1186/s12967-022-03289-8

 

I am confused and of course disappointed. As some of the comments state this article is not correct in some ways. Can anyone (someone) please clarify which part is incorrect and if there are any correct parts which are they? Thank you

 

Would you please share what other work is being done in relation to the heart? I have moved from Grade 1 diastolic dysfunction to now Grad 2 diastolic dysfunction.

 

Welcome to posting here @mikecunn11.
An awful lot of research for ME is poor quality and the general view of this particular work is that the methods used are not reliable enough for it to be meaningful in terms of clinical care. None of it should be taken as reliable guidance.

Work on the heart in ME is again inconsistent and unclear. There have been studies suggesting small heart volume and changes in filling pressure (Dr Systrom most recently) but I have not yet seen anything I see as reliable evidence. I don't think we know that the heart is malfunctioning or damaged in any way in ME/CFS.

 

Hi Mike & welcome

I cant offer any kind of insight, but FWIW i also am often confused and disappointed about research that sounds good to me, but which when you get a more knowledgeable critique isnt nearly as exciting as it sounds! Its a bummer that the quality of the research is often so poor.

So glad to have Jonathan and so many others here who are more knowledgeable.

Sorry to hear about your heart problems

 

The problem with research into ME is that there had been little to no funding over the years. Small scale projects show promise but then are ignored. The use of the Fukuda definition with its emphasis on fatigue, then the appalling change to that by Reeves at the CDC means that it is difficult to know exactly who was being tested in any trial.

There was also a problem in some trials where results were averaged out to no effects. I think one was about the immune system and many patients had too much and many had too little but it was classed a negative result.

When some researchers found mitochondrial problems but others didn't they got together to discuss it and it was found that the results depended on whether they used patient serum or healthy serum.

If there had been proper funding and a will to elucidate ME discrepancies would have been followed up and small scale trials replicated. Instead we are left with bits and pieces and when patients try to find out if they have any of the problems that may exist we are told there are no reliable findings and taken as proof we are some kind of hypochondriac or overdramatising.

 

Hi Johnathan, Thank you for the input. I seem to have gotten wrapped up in the details since a majority of my care has come from me. Not that I have not tried in the conventional manner. I spent two days reviewing this article only to find it has not been corroborated. I’m a layman just trying to help myself. I appreciate forums and information like these here I just need to consider the source prior to investing the time and effort. Lesson learned ! Thanks again

 

Hi Jem, I seem to have been taught a valuable lesson here in energy spent. My energy envelope is not at normal rate and I cherish any time spent on research. I have learned something so all is not lost! Thank you for your comments and concern.

 

Haven't looked at the above.

One from my small repertoire of stock answers; I assume that there would be clues in Chris Pontings GWAS study i.e. if redox was an issue.

Also, from memory there are some standard tests for redox [Glutathione Peroxidase - GPX?]. So I'd expect something to turn up on those tests.

Dikoma Shungu, Cornell, did an imaging (MRI) study which seemed to pick up something potentially linked to redox [lactate?] i.e. in the brain.

 

Apparently Cheney changed his thinking on oxygen treatment for ME. https://nopostergirl.com/2022/04/14...octurnal-oxygen-in-myalgic-encephalomyelitis/