Hopeful1976
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Indeed it is hell...
I need something to happen next year. I need hope and to see an escape. I hate this illness.
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Research update from Prof. Ron Davis (video!)
- Thread starter Ben H
- Start date
I need something to happen next year. I need hope and to see an escape. I hate this illness.
neweimear
Senior Member
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@Janet Dafoe (Rose49) that is super news Janet. Treatment is what we all want so badly, so great to hear of these pilot trials, thank you
MonkeyMan
Senior Member
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Neunistiva said: ↑
This is such wonderful news.
While it is encouraging to read about more and more researchers being involved in ME/CFS, and I follow all their work and updates with extreme gratitude, most others work only on figuring out the basics of ME/CFS and speak of timescales of half-a-decade and more. As far as I know Dr. Davis and his collaborators are the only ones looking for a cure in this way.
In order to keep hanging on we desperately need hope that there is at least some chance that we might be pulled out of this hell sooner.
Agree 100%. Neunistiva sums things up perfectly.
This is such wonderful news.
While it is encouraging to read about more and more researchers being involved in ME/CFS, and I follow all their work and updates with extreme gratitude, most others work only on figuring out the basics of ME/CFS and speak of timescales of half-a-decade and more. As far as I know Dr. Davis and his collaborators are the only ones looking for a cure in this way.
In order to keep hanging on we desperately need hope that there is at least some chance that we might be pulled out of this hell sooner.
Agree 100%. Neunistiva sums things up perfectly.
@Nickster
"The sepsis theory could be true. My adult son with severe me/cfs says that when he eats and as the food moves thru his system, he feels something gets released and than the fibro pain, over sensitivities and more come out"
In my opinion, another way to view ME/CFS is an alternative variation of the CDR- Cell danger response theory. Instead of the CDR, the ADR - Autonomic danger response may explain why many of our feel worse after eating a meal. An insult or trigger such as a viral illness, bacterial infection or toxin exposure may trigger an autonomic danger response but ME/CFS may be a manifestation of perpetual autonomic danger response or autonomic danger response loop ADRL.
I often try to describe to my friends that living with this disease is like chronically fighting the flu while having a severe hangover. It is relatively easy to endure these symptoms for a week but what about years or even decades. I am not sure why more children and adolescents manifest with POTS but I suspect it may fall under the spectrum of autonomic nervous system derangement.
The challenge is figuring out what is causing this autonomic danger response loop. Many of us have read about the vagus nerve theory. Perhaps further research in this area may prove to be fruitful but I also worry that from a tissue level, the autonomic nervous systems is difficult to study (ie brain stem, spinal cord, sympathetic ganglia, autonomic nervous system of the gut.) Also what is the interplay between the immune system and autonomic nervous system.
"The sepsis theory could be true. My adult son with severe me/cfs says that when he eats and as the food moves thru his system, he feels something gets released and than the fibro pain, over sensitivities and more come out"
In my opinion, another way to view ME/CFS is an alternative variation of the CDR- Cell danger response theory. Instead of the CDR, the ADR - Autonomic danger response may explain why many of our feel worse after eating a meal. An insult or trigger such as a viral illness, bacterial infection or toxin exposure may trigger an autonomic danger response but ME/CFS may be a manifestation of perpetual autonomic danger response or autonomic danger response loop ADRL.
I often try to describe to my friends that living with this disease is like chronically fighting the flu while having a severe hangover. It is relatively easy to endure these symptoms for a week but what about years or even decades. I am not sure why more children and adolescents manifest with POTS but I suspect it may fall under the spectrum of autonomic nervous system derangement.
The challenge is figuring out what is causing this autonomic danger response loop. Many of us have read about the vagus nerve theory. Perhaps further research in this area may prove to be fruitful but I also worry that from a tissue level, the autonomic nervous systems is difficult to study (ie brain stem, spinal cord, sympathetic ganglia, autonomic nervous system of the gut.) Also what is the interplay between the immune system and autonomic nervous system.
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Nickster
Senior Member
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- Los Angeles, CA
@RYO Yes my son Nick has this multi symptom response. When he was first diagnosed the docs brought up the vagus nerve theory and said there is no help for that issue. I think your correct about a cell endangering response and the body tries to repair itself, but, it can't and gets caught in this never ending cycle. How do we stop the agony?
The analogy of the "hangover" and "flu" is so true. He feels the chills, hot, nauseous, aches and pains, cognitive impairment, sensitivities to temperature/food/supplements and more. But, it never goes away. My son says that he suffers more than a cancer patient and the catch is that nobody knows what he has and nobody can help him. The nightmare just keeps reliving everyday.
I beleive there are far more sufferers, but, they have not been properly diagnosed.
My son and all of the me/cfs sufferers are the bravest and strongest people I know!
Ron Davis does give us hope to think outside of the box and really find a solution. He never gives up!
The analogy of the "hangover" and "flu" is so true. He feels the chills, hot, nauseous, aches and pains, cognitive impairment, sensitivities to temperature/food/supplements and more. But, it never goes away. My son says that he suffers more than a cancer patient and the catch is that nobody knows what he has and nobody can help him. The nightmare just keeps reliving everyday.
I beleive there are far more sufferers, but, they have not been properly diagnosed.
My son and all of the me/cfs sufferers are the bravest and strongest people I know!
Ron Davis does give us hope to think outside of the box and really find a solution. He never gives up!
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@Nickster
I recently finished reading When Breath become Air about a neurosurgeon's struggle with advanced cancer. I believe that the debilitating symptoms that occur when a patient undergoes chemotherapy may be similar to what ME/CFS patients experience. The level of actual debilitation is certainly the same. Doctors often use zofran to help nausea associated with chemo. Small doses of Zofran along with analgesics help me get through my worst days. (constipation is a significant side effect of Zofran)
Zofran selectively antagonizes serotonin 5-HT3 receptors. https://en.wikipedia.org/wiki/5-HT3_receptor
"This ion channel is cation-selective and mediates neuronal depolarization and excitation within the central and peripheral nervous systems.[1]"
Wikipedia - alcohol is an agonist to this receptor.
@Janet Dafoe (Rose49)
More ramblings...
Could there be an autoantibody or certain cytokine that is acting as agonist to this or similar receptors? (Which results in making us feel poisoned?) Could research on cancer related fatigue also help ME/CFS?
Could PEM be explained as a reaction to stressor to autonomic nervous system?
I recently finished reading When Breath become Air about a neurosurgeon's struggle with advanced cancer. I believe that the debilitating symptoms that occur when a patient undergoes chemotherapy may be similar to what ME/CFS patients experience. The level of actual debilitation is certainly the same. Doctors often use zofran to help nausea associated with chemo. Small doses of Zofran along with analgesics help me get through my worst days. (constipation is a significant side effect of Zofran)
Zofran selectively antagonizes serotonin 5-HT3 receptors. https://en.wikipedia.org/wiki/5-HT3_receptor
"This ion channel is cation-selective and mediates neuronal depolarization and excitation within the central and peripheral nervous systems.[1]"
Wikipedia - alcohol is an agonist to this receptor.
@Janet Dafoe (Rose49)
More ramblings...
Could there be an autoantibody or certain cytokine that is acting as agonist to this or similar receptors? (Which results in making us feel poisoned?) Could research on cancer related fatigue also help ME/CFS?
Could PEM be explained as a reaction to stressor to autonomic nervous system?
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- Messages
- 96
@RYO - "I often try to describe to my friends that living with this disease is like chronically fighting the flu while having a severe hangover."
This is EXACTLY what I have said for many years!!!!
This is EXACTLY what I have said for many years!!!!
charityfundraiser
Senior Member
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- SF Bay Area
Prof. Davis mentioned that he was surprised that they haven't found a microbe yet and mentioned looking for viruses. I recently saw a chart of diseases with the closest gene expression to CFS in which SIRS (systemic inflammatory response syndrome) was #1 and disease caused by parasite was #2. I am wondering if they have looked for parasites in addition to viruses, bacteria, etc. since the data suggests that disease caused by parasites more closely resembles CFS than diseases caused by viruses, bacteria, or other microbes. Incidentally, I can't find the chart now so if anyone knows where it is and which paper it is from, I would really appreciate it!
P.S. I found a chart in this video at 13:59:
P.S. I found a chart in this video at 13:59:
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- Messages
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- Netherlands
Could anyone on this forum deliver the following message or question to the scientists like Ron Davis, Mark Davis etc...
Can pd-1 checkpoint pathway be involved in me/cfs and explain the starting point of this disease. Low pd-1 expression on T cells lead to overactivation of immunesystem and possible ongoing inflammation.
Recent article in Japan shows mice without pd-1 checkpoint(pd-1 knock out mice) having alteration in metabolomics. In serum of these mice was found depletion of amino acids, T- cells changed. Possibly also 8+cd cells.
http://www.riken.jp/en/pr/press/2017/20171024_1/
In addition, what is known on these mousemodel https://www.jax.org/strain/021157
Also Known As: PD-1-, Pdcd1-
PD-1-/- mice display an increased infiltration of inflammatory cells in models of atherosclerosis, allograft vascular disease, encephalomyelitis, cardiomyopathy, and sepsis. They may be useful in applications related to the downregulation of T cell responses and inflammation.
Pd-1 is also found on endothelialcells ...
Janet Dafoe
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One of his earlier tests looks for parasites sequencing pieces of DNA and none matching parasites were found. He is working on developing a PCR method for detecting specific parasites from cell free DNA and it should be more sensitive and specific. He has SO MANY irons in the fire and more all the time.
I found this section as well as the presentation by Mark Davis regarding T-cell clonal expansion pattern very compelling.
Perhaps Dr Derya Unutmaz will also confirm T-cell clonal expansion data.
My understanding too limited on how they can identify the antigen trigger but I hope they make further progress.
What’s the difference between modern day trials of various medications that Ron is planning and Jay Goldstein’s trial and error protocols from the 90’s and 2000’s? What I mean is, Goldstein’s meds were often effective right away but wore off over time, how can Ron ensure that a potentially effective treatment He discovers will last the test of time?
charityfundraiser
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Thank you for this info. It is truly amazing how many irons in the fire Prof. Davis has.
After reading Cort Johnson's latest interview with Prof. Davis where he provides more details about the "Weird Blood Project" in which they are finding slower blood flow from blood vessels to capillaries in ME/CFS patients and hypothesized that the red blood cells could be too stiff and having trouble deforming, I found literature on "The Effect of Sepsis on the Erythrocyte" which does include red blood cells' increased rigidity and loss of deformability and changes in or loss of capillary flow. The paper also discusses some things about glycolysis and ATP that I don't know if relate to any of the findings in ME/CFS. (Sepsis is Systemic Inflammatory Response Syndrome with the addition of documented or presumed infection.)
The Effect of Sepsis on the Erythrocyte
http://www.mdpi.com/1422-0067/18/9/1932/pdf
"We review the effects of sepsis on the erythrocyte, including changes in RBC volume, metabolism and hemoglobin's affinity for oxygen, morphology, RBC deformability (an early indicator of sepsis), antioxidant status, intracellular Ca2+ homeostasis, membrane proteins, membrane phospholipid redistribution, clearance and RBC O₂-dependent adenosine triphosphate efflux (an RBC hypoxia signaling mechanism involved in microvascular autoregulation)."
I am wondering if it might be informative to run the nanoneedle salt stress test on blood from patients with sepsis or SIRS in addition to the other diseases mentioned as planned in the video. I suspect sepsis/SIRS blood might show the same reaction as ME/CFS patients given the "100%" similarity in gene expression profile.
On a related note, I suspect that running the nanoneedle salt stress test on actual deconditioned patients' blood would probably look like healthy controls since deconditioning seems to be from loss of muscle and not at the molecular level. It would really disprove the deconditioning theory if blood from paralyzed people or people who have been bedridden by injury looked like healthy controls.
So many possible irons to put in the fire....
gregh286
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- Londonderry, Northern Ireland.
Sounds familiar.
Dr. Les simpson wrote a book on this. He noticed this almost 30 years ago.
http://orthomolecular.org/library/jom/1997/articles/1997-v12n02-p069.shtml
Hopeful1976
Senior Member
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I do not understand why such research appears to be 'forgotten'? It is obviously an important finding; yet nothing appears to have come of it? It's bizarre! And now Ron is looking at it again 20 years later... can someone please explain why this is.
Learner1
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Because it was in a journal on orthomolecular medicine which mainstream medicine ignores.
Glad its being looked at now.
Glad its being looked at now.
gregh286
Senior Member
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- Londonderry, Northern Ireland.
His first work was submitted mid-80s on cell deformality....over 30 years.
My guess is CFS was hugely dismissed as mental back then and any speculative physical findings or discoveries just petered out. There was no medical drive or pressure to pursue it from any medical bodies with real influence. Too busy with HIV at the time.
Medical technology has evolved somewhat also since this period as well.
Doesnt really explain how symptoms can wax and wane quite dramatically. So one day rbc are worse shaped than others, or stiffer etc.? Finding that immune mechanism that drives this is a tougher part.
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aquariusgirl
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https://www.hindawi.com/journals/jdr/2014/685204/
@Janet Dafoe (Rose49)
@Rose49 I would so like to bring this paper to Ron's attention.
Oxalates & diabetes. I think oxolates connect lots of dots....they are mitochondrial toxins...associated with B6 deficiency..heavy metals...neurotoxins etcc
@Janet Dafoe (Rose49)
@Rose49 I would so like to bring this paper to Ron's attention.
Oxalates & diabetes. I think oxolates connect lots of dots....they are mitochondrial toxins...associated with B6 deficiency..heavy metals...neurotoxins etcc
I don't know about this blood cell thing, I would like to see more experiments, but if it is true then it could explain why beta blocker specifically propanalol seems to help considerably for me, because it is supposed to lower the blood pressure which presumably involves the dilation of blood vessels inc capillary
Tally
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Beta blockers mostly help because they manage tachycardia and POTS. Propranolol specifically is one of the rare beta-blockers that crosses blood-brain barrier so it potentally also lowers hyperreactivity of the nervous system and helps with dysautonomia.
Low blood pressure is a common issue for people with ME/CFS so it is highly unlikely that the part of the action of beta blockers that lowers blood pressure is the part that helps. In fact, many people with ME/CFS have to take extra medication for raising blood pressure when they take beta blockers to counteract that unwanted sideeffect.