Dr Ron Davis - Updates on ME/CFS research - September 2019 onwards

Hubris said:
He is probably referring to the UK Biobank data - it was analyzed and the IDO2 mutations are not more frequent in ME/CFS patients than they are in controls. This was acknowledged by Janet Dafoe in a tweet, which was something like "yes Ron has looked at the UK biobank and there is no difference between patients and controls". Her justification for this was that in her opinion the patients who participated in the UK biobank study do not really have ME/CFS and so that's why they don't have the mutation.

My guess is that Linda Tannenbaum looked at this and decided the metabolic trap hypothesis was not worth funding anymore, and that is why there has been a huge delay and Ron Davis has to make do with old broken equipment and part time work.
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Just a friendly correction here from Dr. Janet Dafoe: Mrs. Tannenbaum does not makes these decisions. And the funding for this project came from elsewhere. I was unable to get more information because of an emergency interruption. Thanks.
 
Perrier said:
Just a friendly correction here from Dr. Janet Dafoe: Mrs. Tannenbaum does not makes these decisions. And the funding for this project came from elsewhere. I was unable to get more information because of an emergency interruption. Thanks.
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A few years ago, OMF got a $1M donation specifically to be set aside for the metabolic trap so it may be in reference to that.

It seems they are unable to design an experiment to test this hypothesis in patients cells and thus are stuck going an awfully long way around to figure out how to prove or disprove this. They must think it's quicker to test drugs on it and then try those drugs out than to demonstrate the trap in patients.
 
My point was that they've been applying the word 'cure' to their narrative for the last 6 years. It's quite arrogant.

Hope is justified “realistic" when the patient knows and accepts experts’ judgement about the probability of hope fulfillment.

Personally, I'm more in favour of bringing realistic hope that they're moving forward with possible drugs that could improve a patients life. Making things appear bigger than they are is false hope (ignorance). jmo.
 
I still have faith in them, and especially in the metabolic trap theory. And I think in recent months they’ve dialed back the communications. I don’t think it helps that a year ago Whitney was alluding to great things happening and that gets peoples hopes up, but perhaps he just also gets his hopes up.

<edit to delete an inaccurate comment>
 
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Braganca said:
Also really wish they would make committee based decisions around funding projects, and that the committee included patient reps. I believe that right now Ron solely makes the decisions around what to fund. If anyone knows differently, would love to hear.
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I don't think Ron is the sole decision maker at OMF. It has a scientific advisory board who would discuss what to fund.
https://www.omf.ngo/
 
Marky said:
I hear more talk than i read research
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It takes a long time to do research, unfortunately. Remember it took about 15 years for Fluge/Mella to falsify the hypothesis that rituximab can be used to treat ME/CFS. So more than a decade to investigate one potential treatment, and it was a dud.

Patience is something that is needed, but few of us have.......
 
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Jaybee00 said:
Patience is something that is needed, but few of us have.......
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After nearly 4 decades – my adult life – of waiting for medicine to get its act together and having to watch my life waste away in the meantime, I think I can claim to be both very patient, and rapidly running out of the little patience and forbearance I have left, especially after the behaviour from the BPS mob on the NICE guidelines. :grumpy:
 
Jaybee00 said:
It takes a long time to do research, unfortunately. Remember it took about 15 years for Fluge/Mella to falsify the hypothesis that rituximab can be used to treat ME/CFS. So more than a decade to investigate one potential treatment, and it was a dud.

Patience is something that is needed, but few of us have.......
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I know, but they didnt use 15 years to start a phase 1 study.
Hopefully something good will come out of all the funding to OMF, I`m just saying im starting to get skeptical.
 
Tao Fogger said:
Moved posts

The new update seems to be up on youtube now
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Something that's been on my mind is how a trapped cell would be passed down during mitosis? Would the daughter cells inherit this problem?

As we all know.. cells die and new ones are made.

But.. me/cfs does not improve with time. Is anyone here techie enough to explain why the metabolic trap hypothesis would be chronic?
 
Comments from Laurel Crosby


Hi everyone. My name is Dr. Laurel Crosby and I’m the co-investigator on this project. We sampled hair many years ago because patients were concerned about heavy metals exposure. But we found that certain trace metals appeared to be low. We don’t know if this is really a deficiency or if it’s an artifact. (That is, maybe people with ME/CFS don’t go outside as frequently or wash their hair as often as healthy counterparts. The minerals could be low in hair because the environmental exposure is lower.)

When we started to explore this question further, we realized that manganese is an important trace metal for enzymes involved in metabolism. So, we’re actually focused on aspects of metabolism and how people with ME/CFS metabolize various sugars and amino acids. If there is a clear pattern that manganese enzymes are affected, then we can speculate about why this happens. Maybe manganese content is fine in the blood, but it’s not getting into cells or into the mitochondria. These are interesting questions that we’ll pursue in our 3 year study.

Here is what you should know now: Dietary manganese comes from carbohydrate-based foods like cereal grains. There has never been a documented case of manganese deficiency because of low dietary intake. (But that was before keto diets were popular!) Calcium supplements can also bind up manganese in the gut and prevent absorption. So, there are potential ways that someone *could be* deficient, and we’ll be looking at this from many different angles.

The problem with supplementing with a trace metal like manganese is that too much can be toxic. The safest strategy is to get nutrients from whole foods. Please help us keep the ME/CFS community safe by recommending foods over supplements.

Thank you,
-Laurel
 
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