Open Medicine Foundation (OMF)

I had a OxyMark Panel done that was sent to an international center for metabolic testing.

It measured everything from OAT,amino acids, antioxidants, oxidative stress, essential fatty acids and iron metabolism. The conclusion was that I was not converting nutrients/food into energy. I have a 3 page report discussing the citric acid cycle.
I have low citric-cycle intermediates which RD mentions regarding Whitney.

The biochemist knew my illness was real without a diagnosis.

I'm sure there are many studies out there. This is what biochemist study.

 

So sorry to hear about your family’s suffering. I was just implying that ME/CFS is unlikely to be autoimmune. My understanding is that B cells have been researched in depth and nothing has been found. That, combined with failure of Phase III ritux trial makes it an unlikely hypothesis. I don’t understand why Davis thinks this is autoimmune; there doesn’t seem to be any evidence of that as far as I can see.

 

Dear Mij
You say you are at "a loss for words" reading the item: ("Davis had discovered that the processes in each cell that convert food to energy were not working correctly in his son. The scientists had “found scientific proof of ME/CFS,” clearing a major hurdle for a disease that many still today deem imaginary").

And I do understand very well, but what I would like to add is that we have to be alert when we read journalist renditions, of illness, and of events, or whatever. As in any profession, there are many different levels of journalists, some extremely brilliant, highly informed, some competent, and others who are not really informed in any profound way, but who sort of pick up stuff in their interviews without any deep knowledge and have deadlines and have to get their story out.

The latter can make an awful lot of mistakes, and misrepresent things, not intentionally. Of course, then there is also bias, which you need to look at--but I'll leave that aside. I did research (in another life) about how print media presents past historical events. So, the option is either to write the journalist a note, or to just leave it. I think you have contributed enormously (as you always do) by highlighting the Oxymark panel, which I suspect Dr Davis is aware of.

 

This is so vaguely worded that it's not clear what is meant. Rather than a new discovery, it could just be how the journalists describes the reduction in the citric aid cycle (also known as TCA or Krebs cycle) that has been found in Whitney. Davis showed this years ago at a conference.

 

There are a lot of auto-immune diseases that don’t respond to rituximab like type 1 diabetes and lupus.



Fluge & Mella believe there is an auto-immune component to ME/CFS—from the cyclophosphamide paper

 

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Editors. Freaking editors. Most news is infotainment, has to feature a bit of that click bait crap.

 

Cyclophosphamide didn’t work either. It was an unblinded study with modest improvements well within the range of the huge placebo effect we saw in the rituximab studies.

 

It is certainly true that not all autoimmune disease show useful benefit from rituximab. However, lupus does benefit - as now confirmed after 20 years with a large controlled trial. Type 1 diabetes may not strictly be autoimmune. There is certainly not much evidence of B cell mediation. It does fall under a wider umbrella of immunological disease, however, so if 'autoimmune' is being used loosely it makes the point that rituximab may not be relevant.

I don't think Oystein Fluge and Olav Mella believe anything particularly. They have always been very cautious about proposing hypotheses and emphasising that they are speculations being tested.

As @Sid mentioned, the original impetus for looking at autoimmunity has largely fizzled out with failure to find anything replicable in terms of B cell changes as well as the lack of effect of rituximab. I now think of it as unlikely to be what we are looking for. There may be a few people with autoimmune diseases like lupus effectively misdiagnosed as ME, that is about all.

 

I guess he has redefined the word “prove”. Meanwhile, in the rest of the world, patients are getting sectioned and forced into exercise precisely because there is no published replicated proof of anything.

 

We have a few newpaper / online magazine articles every year with headlines saying scientists have finally proven ME is real.

 

Public Facebook post from Millions missing global, yesterday, seems to indicate it’s the biomarker for which they’ve made a breakthrough.

Could this be related to, or talking again, about the stress test with salt?

“Davis has developed four diagnostic tools he is currently testing and believes he will soon be able to announce a breakthrough in confirming biomarkers”

 

Things are changing for ME patients!

Years go by... nothing changes

Things are changing for ME patients!

Years go by... nothing changes

Turns out doing nothing about a problem and making stuff up instead is not very effective. Shocking.

 

Can you provide a link to that comment?

 

Yep

 

I do not know what he is thinking, but my guess is this is yet another hypothesis. There are plenty floating around, even with Ron.

 

The first study I can recall showing evidence for mitochondrial impairment, aside from ragged red fibres which was inconclusive, was from Wong et. al. in 1996, although there are possibly other papers out there. I no longer recall the name of the paper, and its not an important paper. Two things arise from this. First, they concluded the problem was glycolysis was running too fast. I tried to point out to a few people that one of the reasons this could be was in fact mitochondrial impairment. The second issue is that its been 24 years since that experiment, and we are still struggling to get data. That is what starving research of funds does.

 

I have said this many times over the years in various ways, but its worth repeating. Our scientists keep making hypotheses that fail. Again and again. This is how science is supposed to work. From time to time there will be one that succeeds, advancing our understanding, but figuring out which fail also tells us something, and we can shift research to the next question.

Ron may have a bunch of hypotheses that will fail, or one could be successful, but either way we want our scientists to investigate . . . it would be really bad if some scientist had a good idea and did not pursue it, resulting in delays of years or decades on the way to understanding, treatment or cure. This is why I supported XMRV research back in the day, and also why I told everyone to pay attention to Lipkin's test of the hypothesis. Once ruled out we can move to the next hypothesis. A failed hypothesis is only a small advance, but its still an advance.