Livestream: Ron Davis to speak at Columbia University

Sunshine3 said:
Did anyone else listen in? I'm feeling frustrated after it! I don't even sense any urgency from Dr. Davis. The something in the blood is on the go since 2016. I'd have thought that would be more worthwhile investigating than still looking for infections and pathogens. It seems obvious that it's a hit and run on the immune system.
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I am sure he feels a strong sense of urgency. Because of his son.
 
rvallee said:
Our knowledge of physiology is still very superficial. I'd be curious to know what % of all there is to know most physicians think we have achieved? 40%? 50%? I doubt many would estimate it at above 50%. We still have a whole order of magnitude to go by until we can comprehend the many active processes in the body. A blood draw is such a crude measure, like taking a photo and trying to decipher movement without any references but most diagnoses still depend on this crude measure.
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Thanks @rvallee posting this important point. I agree with @butter. that our current understanding about human biology is less than 5%. After doing post-doctoral training in mammalian biology, then devoting most of my waking life to understanding biology as a professor, I came home so many days wondering why do we even try to do this work? There is SO so much we don't know. It makes so much more sense to be an engineer.

This is why the arrogant attitude of many practicing MD's is laughable to me. I wanna say, "you know only a tiny fraction about human pathophysiology," and you should have an attitude of embarressment, or at least humility with your patients.
 
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Jaybee00 said:
Yeah not so positive.... at one point he said something about focusing on prevention rather than treatment....
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I think he said that if they don't understand the disease well enough to cure it, they should also focus on prevention (as well as finding a biomarker, treatments and gaining a better understanding of the disease). If you have a cure, I suppose prevention isn't entirely necessary, although it would probably still be better not to get the disease in the first place.

Their priorities, in order, are:

Biomarker
Treatment
Cure
Prevention

An effective treatment could be tantamount to a cure, except that you might have to take a pill or something everyday for the rest of your life. This is the case with a lot of diseases.

Prevention implies that you know the risk factors for the disease and that they are addressable. There is no cure for diabetes, but you can take steps to lower your risk of getting it in the first place. We don't really know how addressable the risk factors for ME are. Perhaps some people may be at a (genetic?) risk following a strong infection. If such people could be identified, then maybe some kind of prolonged recovery protocol could be recommended for them following a bad infection.

 
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I think using the term cure bothers me more than anything. There are many illnesses without a cure, managing specific symptoms with medications is a more realistic approach. As for prevention, pacing can prevent worsening (for some).
Some of us have progressive M.E.
 
Sunshine3 said:
Is there evidence of progressive ME... Where does it stop? Mine has been progressive from the start.
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My dear best friend passed away in 2016 from progressive M.E, he developed severe dysautonomia, severe gut issues, diabetes etc. His CNS was slowly shutting down over the course of 18 years, he never improved despite trying many treatments. I don't experience many of the symptoms he had. Is there a type I and type 2 M.E? I wonder.
 
Mij said:
My dear best friend passed away in 2016 from progressive M.E, he developed severe dysautonomia, severe gut issues, diabetes etc. His CNS was slowly shutting down over the course of 18 years, he never improved despite trying many treatments. I don't experience many of the symptoms he had. Is there a type I and type 2 M.E? I wonder.
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So sorry. It's so awful.
 
Someone on the CFS subreddit made a summary of the talk and it has convenient timestamps so here goes. Many thanks for that.

TLDR:
  • Research has uncovered several promising leads for both root cause & the corresponding treatment.
  • An effective diagnostic test has been prototyped (the nanoneedle).
  • Several other diagnostic tests are also in progress.
  • There'll be a "bake off" to select the best diagnostic test.
  • No treatment or cure identified yet.
  • However, some promising treatment options have been identified (using lab tests only).
  • These treatments use already-available products.
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Highlights are referenced in the video timeline like this: [@ 30:00]

Introduction:
  • "Almost never get over this disease, once it starts"
  • Often triggered by an infection, such as mononucleosis/Epstein Barr Virus
  • Not a rare disease; estimated at impacting 1% of the population.
  • 80% of sufferers are undiagnosed. This because they give up on getting a formal diagnosis, due to the difficult and lengthy process required.
  • Work in England around "False illness belief" mentioned. [And very politely dismissed by Ron throughout the presentation]
  • Corresponding treatment of forced exercise (GET) made people worse & has only recently been removed from treatment.
  • Research work funded by patients. Institution funding was difficult to secure.
  • Research focused on 20 severely ill patients, with 10 healthy controls.
  • Home visits made to collect samples for lab analysis.
  • Illness often misdiagnosed as depression. (Which ironically... is depressing!)
Research:
  • Research took a "Big Data" approach.
Measured Cytokine levels:
  • severely ill patients had a significantly different profile from healthy controls.
  • maybe causing phenotype & fatigue symptoms
Used Metablome to measure metabolism:
  • Severely ill patients had severe disruption over many metabolic pathways
  • The Citric Acid (TCA) Cycle severely disrupted.
  • Suggests the inputs to mitochondria are disrupted (hence mitochondria dysfunction)
  • TCA disruption is probably a symptom of the actual root cause.
Measured metabolites: [20:05]:

Severely ill patients had 63/592 metabolites significantly changed

For example:
  • Indolepropionate - is unusually low.
  • Lysine - is unusually high.
  • Hydroxyproline - is unusually high.
  • About half the metabolites come from the microbiome, rather than the human gene.
With Indolepropionate:
  • Produced by clostridium.
  • Clostridium is missing in all of the patients.
  • It's a neural protectant. This may be a significant factor.
  • Treatment option could be to provide external compound made from tryptophan.
  • A company is making the compound; not yet tested on humans.
With Lysine & Hydroxyproline:
  • Both involved in producing collagen
  • Suggests collagen production is degraded.
  • Could result in collagen connections in neck changing, becoming insufficient to hold head up. Head then falls down until it impacts spinal column & the brain stem.
  • This demonstrated in one patient, who had their blackout & breathing symptoms relieved by adding metal rods to support head.
Plan:

Ron Davies plan:
  1. Biomarker: Find and apply a test to confirm ME/CFS
  2. Treatment: Continue exploring the various treatment possibilities.
  3. Cure: Seek a cure.
  4. Prevention: Seek a way to prevent illness. Prevention is better than cure (...but not for existing patients)
1. Biomarker: [@ 25:37]
  • Standard tests (assays) in patients show normal results (e.g. blood pressure, cholesterol).
  • This does not mean "patient is healthy"; it means the standard tests are insufficient.
Nanoneedle biosensor looks promising:
  • Takes 2,500 independent measurements.
  • Repeats the measurements 200 times per second.
  • Gives millions of measurements.
  • Means test accuracy is much higher than traditional single-shot lab blood test.
  • Also that a large number of different tests can be completed from a single blood sample.
Used nanoneedle biosensor with ME/CFS severe patients [@ 30:00]:
  • Added NaCl (sodium chloride) to blood sample
  • NaCl stresses the blood cells, as they need to pump it back out. This requires energy (in the form of ATP).
  • Severely ill patients consistently showed very different result, compared with normal patients.
  • Swapped blood plasma and blood cells. Abnormal result shows in plasma, not cells.
Red blood cell deformability (RBC):
  • Used engineering techniques to model flow of RBCs through blood vessels.
  • Severely ill patients showed significantly different deformation from healthy controls
  • The deformation was only seen with cells in plasma (vs cells in buffer).
  • Suggests something in the plasma is causing the deformation effect & is a good clue.
Nailbed capillaroscopy:
  • Shows different profiles for finger-tip capillaries for severely ill patients
  • May also be a straightforward diagnostic tool.
Bake off:
  • These & other tests are being considered as useful diagnostics
  • "Bake off" process being applied to see which is the best.
  • Aiming for very high accuracy
Next:
  • Design & build suitable process for bulk fabrication of nanoneedle approach.
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2. Treatment [@ 41:50]:

General approach:
  • New drug development is unlikely to be helpful, given required time (10 - 20 years) and cost ($Bns)
  • Therefore test established drug treatments for their effect on the biomarkers
  • Also test herbal extract treatments effect for their effect on the biomarkers
Copaxone:
  • Used to treat MS
  • When added to nanoneedle test samples, gave results like healthy controls
  • Needs to be injected
  • Single case showed some improvement.
Suramin (low-dose):
  • Used to treat African sleeping sickness
  • Also showed improved results with nanoneedle test.
SS-31:
  • When added to nanoneedle test samples, gave results like healthy controls
  • No side effects at this concentration
Metals and hair samples:
  • Many patients had higher-than-WHO-safe levels of mercury
  • Correlated with patients eating a lot of fish
  • High mercury is associated with low selenium
  • Some patients had high uranium (from well water)
  • Many essential enzymes require selenium, so could be a contributor.
3. Cure:
  • "If you know the cause you can often cure a disease"
  • Cures are available for many diseases caused by infections & genetics
  • Therefore also focus efforts on infections & genetics as possible causes
  • Genome has been fully sequenced for severely ill patients.
  • Genome sequencing would normally be an expensive test.
  • Looking for a fast, cheap method.
Findings with Infections:
  • Not found any new: pathogens, DNA viruses, parasites.
  • Still working on checking for: RNA viruses, fungus, bacterial pathogen.
  • Aiming for a single $10 test to check for all pathogens.
Findings with Genetics:
  • All 20 severely ill patients have non-functional mutations of IDO2 gene.
  • About 75% of population also have non-functional mutations of IDO2 gene.
  • Is statistically significant & a useful clue.
  • Robert Phair's work suggests the IDO2 mutation could be an example of bistability.
  • For CFS/ME this means patients are locked-in to an unwanted stable stage, where the biological pathways are stable in the bad state (i.e. in impaired energy production)
  • Described as the "metabolic trap".

4. Prevention:

Not covered in this presentation.
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Mij said:
My dear best friend passed away in 2016 from progressive M.E, he developed severe dysautonomia, severe gut issues, diabetes etc. His CNS was slowly shutting down over the course of 18 years, he never improved despite trying many treatments. I don't experience many of the symptoms he had. Is there a type I and type 2 M.E? I wonder.
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HI.

I am very severe and progressive too. Would you be open to talk about your friend? If so, please PM me.
 
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