Bhupesh Prusty: "we are on a perfect path for identifying potential transferable factors in ME/CFS blood that can cause mito dysfunction..." GoFundMe

[Rufous McKinney]

I now believe that the Blood Sugar problems were due to Mitochondrial Dysfunction which stop the ability to transfer or utilize Glucose and Oxygen.

I would agree...that some of our troubles stem from difficulties obtaining energy from glycolysis, etc. From there- list all body processes requiring energy to operate....

which cause changes to things like Gut Motility simply through increased metabolites and gasses directly affecting autonomic dysfunction,

The breakdown of collagen processes...is an important component of- our decline in my view. I have had a relatively low level of antibiotic exposure over my lifetime....my gut is often not ok despite major continuous work on it. Body does not seem to rid itself of toxins well. They seem to accumulate.

I think the gut barrier and blood brain barrier weaken...allowing increased permeability and related problems. So the hunt for protein in the body to run on...is also a factor. I have few muscles left, tendons weak. Neck is popcorn. Fingerprints gone. Skin crepe paper. The outside view may reflect the inside conditions.....don't like to contemplate that one.

Im not quite yet up to figuring out- how the neurological component shows up: but clearly it does.

 

[MonkeyMan]

I have had a relatively low level of antibiotic exposure over my lifetime....my gut is often not ok despite major continuous work on it. Body does not seem to rid itself of toxins well. They seem to accumulate.

Same here. In fact, poor detoxification is perhaps my biggest problem (and I think this is true for a lot of other ME/CFS patients too). I took loads of antibiotics years ago.

And to tie this back to the topic of this thread: hopefully mitochondrial fragmentation is at the root of our detoxification problems.

 

[Rufous McKinney]

hopefully mitochondrial fragmentation is at the root of our detoxification problems.

Certainly it must at least play. a major role.. There must be a big COST to removal toxins.

 

[gm286]

I’ve been following this thread for the past few weeks — don’t mean to divert the conversation — but I would like to second what was said above that I think the body is unable to rid itself of toxins, and that there is collagenous degradation. The neuro-immuno-endocrine system is disrupted. I would say ever since I found this website, around 2018, the journey has been a mixture of better understanding my gut, my ‘toxicities’, and my weak ligaments.

Latest progress for me has been beginning the Cutler protocol after testing toxic for various metals. From only just getting on the diet corresponding to his protocol (low thiol; avoiding sulfurous foods in people with ostensibly high cysteine) has been a marvel for my mind and body (less fibromyalgia and brain fog flares) in addition to the core supportive elements (zinc, C, E, magnesium).

I had trialed prednisone for three weeks before this and had responded very well to it (adrenal fatigue?). I’m not sure if this supposedly disqualifies me from having ME/CFS, but I would say that the ME state has very largely defined me for the last decade.

I guess this is all in a mixture of a ‘thank you’ Phoenix Rising and hope that the research continues to advance...!

 

[Avenger]

I’ve been following this thread for the past few weeks — don’t mean to divert the conversation — but I would like to second what was said above that I think the body is unable to rid itself of toxins, and that there is collagenous degradation. The neuro-immuno-endocrine system is disrupted. I would say ever since I found this website, around 2018, the journey has been a mixture of better understanding my gut, my ‘toxicities’, and my weak ligaments.

Latest progress for me has been beginning the Cutler protocol after testing toxic for various metals. From only just getting on the diet corresponding to his protocol (low thiol; avoiding sulfurous foods in people with ostensibly high cysteine) has been a marvel for my mind and body (less fibromyalgia and brain fog flares) in addition to the core supportive elements (zinc, C, E, magnesium).

I had trialed prednisone for three weeks before this and had responded very well to it (adrenal fatigue?). I’m not sure if this supposedly disqualifies me from having ME/CFS, but I would say that the ME state has very largely defined me for the last decade.

I guess this is all in a mixture of a ‘thank you’ Phoenix Rising and hope that the research continues to advance...!

Hi Rufus and gm286,
I have come in late in terms of collagen and you are the second person in this thread who also has reported joint and ligament problems.

I am really interested in this thread;

because although I was diagnosed with D-Lactic acidosis, I am also riddled with joint problems and muscle tears, pains at ankle and knee ligaments and a lot of recorded joint damage. A disc in my lower back has now fully disintegrated and the vertibrae are bone on bone and are now leaking marrow. I also have two torn shoulders, with large tears off the bone. One shoulder was repaired where they found a torn bicep tendon, but when I was given a further MRI they found new tears. I also have neck pain and pain in knees with osteoarthritis also in shoulders and problems with ankle ligament and frequent sore joints.

I had put this all down to frequent high acid levels or the toxicity of D-Lactate causing both gastrointestinal and systemic dysfuntion of all systems. But collagen degredation would also explain a lot.

Although I used a lot of Non Steroidals (Fenbufen) for severeal years just before I fell ill in 1999, my joint, muscle and ligament problems have continued to worsen since I fell ill with ME. I later researched NSAID's and found that they virtually turn off the healing process by suppressing inflammation. Some of the effects of NSAIDs on the articular cartilage in OA include inhibition ... glycosaminoglycan synthesis, collagen synthesis and proteoglycan synthesis.

I was a sculptor, but also did a lot of weight training and building work and rather naively put my faith in Doctors prescribing NSAID's long term. One of my Gastroenterologists has written that he believes that D-Lactic acidosis was caused by the action of NSAIS's on my Gut (turning off Cox1 and COX2). Many thousands of people take these analgesics every year without understanding their side effects.


It looks as though we are going to have to unpick many threads of biological processes in order to fully understand this disease.

What can I use to try to reverse these problems?

 

[MonkeyMan]

So that leaves only SS31/Elamipretide. Because it stabilises the mitochondria without the need of Drp1. Another reason to finally get my hands on it.

Good news as far as elamipretide:
https://www.biospace.com/article/re...nce-development-of-elamipretide-and-pipeline/

 

[Badpack]

@MonkeyMan sound sweet, i just really really hope that rons secret treatment trail is ss31 too. It would be such a simple no brainer to me. Its the safest, best working ones he found in his electric measurements. He said its cheap to make. Just get a medical partner and try it for 10 ppl. I would take it today. Just hand it to me. I would even pay for it.

 

[mariovitali]

I find it very interesting that , given the fact that a lot of ME patients say they have detoxification problems, not one single researcher is looking at the one and only detoxification organ of the human body.

 

[Rufous McKinney]

What can I use to try to reverse these problems

I do traditional chinese herbal medicine and made some dietary changes which seemed to help joints...at least.

I tend to have too much "wind" which expresses as odd pains, sometimes cold feeling, inside various joints...and I Literally feel this wind at times...my gut issues...(IBS-d type)....are described as too much wind, also....

So I went on warm, oily cooked foods especially at nite, bone broths out of lamb or beef (collagen source), no bitter greens, (stopped salads)..lots of roasted root vegetables which are grounding. Fennel root. I don't eat very much raw food.

THis of course does not solve- all our various issues but its helped me...

 

[Rufous McKinney]

what was said above that I think the body is unable to rid itself of toxins, and that there is collagenous degradation. The neuro-immuno-endocrine system is disrupted. I would say ever since I found this website, around 2018, the journey has been a mixture of better understanding my gut, my ‘toxicities’, and my weak ligaments.

I just experienced a mild injury to my rib cage from lifting the baby wrong.....breathing now hurts, its likely that I pulled or stretched the- connective tissue in my ribs.

And so: I'm pretty intensely now PEM. Really really tired, out of it, with other aches and inflammations blowing up here and there...It doesn't seem like- slightly pulling something..should trigger this AWFUL yuck feeling.

But it has. So I think its possible that, like a massage, or acupuncture, or walking a bit further than normal- any of those things seem to trigger PEM and feeling poisoned. So it feels like a toxin dump.

 

[Avenger]

I find it very interesting that , given the fact that a lot of ME patients say they have detoxification problems, not one single researcher is looking at the one and only detoxification organ of the human body.

I still think that a lot of the problems with toxicity and gastrointestinal symptoms are due to organic acids produced in bacterial overgrowth such as IBS/D, D-Lactate and an inability to detoxify, which is more about stopping the production or reversing the overgrowths. I would bet that frequent high levels of these organic acids are causing much of the damage to all organs including collagen production, bone, cartilage, muscle and ligaments and disrupting all healing processes.

I can only go on what I experience when my symptoms return, which is much like feeling poisoned, which stops when I use antibiotics.

 

[Avenger]

It might be the treatment mentioned in this article:

https://m.facebook.com/story.php?story_fbid=2528086370786601&id=1931542240441020

If you follow the webpage it appears that this is all to do with Lactic acid and they are talking about a better secret treatment to reverse cellular damage, that possibly we could copy (need to translate). https://www.vardfokus.se/webbnyhete...ukj4EaF2nhjyrPlOlbF5jbU#.Xo7gpP6Bncx.facebook

''People with ME also have higher levels of lactic acid, lactate, in the tissue and an impact on the mitochondria - the cells' own power plant.''

Article;
As researchers learn more about the disease, the possibilities of finding treatment alternatives increase. This autumn, a secret drug study is underway for the time being. Several studies are also in progress on various biomarkers that could facilitate diagnostics.''

ME researcher: "I am hopeful"

In many ways, the situation with ME / CFS is similar to what it was with MS (multiple sclerosis) 30 years ago, says Jonas Bergquist.
Large knowledge gaps increase the suffering of people with ME. In Uppsala, Jonas Bergquist leads a unique research center where studies at both the cellular level and patients provide hope for the future.
Despite the fact that ME / CFS has been diagnosed for over 50 years, much is still unknown. It is not clear what causes the disease, although it is often activated after an infection. Without causal relationships, it is difficult to find effective treatments and cures.

One of three centers in the world
In many ways, the situation is reminiscent of what it was like with MS (multiple sclerosis) 30 years ago. It was before discovering autoimmunity to the myelin sheaths around the nerve cells that the damage was caused. This is stated by professor and medical doctor Jonas Bergquist at Uppsala University.
Since 2019, he is the research leader for the world's third ME / CFS center. With support from Harvard and Stanford University, the Swedish Center contributes research that focuses on the neuroinflammatory process that is common in people with ME.
Affects energy production
What we know today is that the aftermath of an inflammation leaves its mark in the nerve cells of the patients and can cause problems with, for example, the regulation of energy, headaches and impaired cognitive functions. People with ME also have higher levels of lactic acid, lactate, in the tissue and an impact on the mitochondria - the cells' own power plant.
As researchers learn more about the disease, the possibilities of finding treatment alternatives increase. This autumn, a secret drug study is underway for the time being. Several studies are also in progress on various biomarkers that could facilitate diagnostics.
Important with sampling
Simplifying the sampling is especially important for those patients who are too ill to go to care.
- Right now, for example, we are testing how we can analyze dried blood stains on paper to enable more home tests in the future, says Jonas Bergquist.
As a fellow human, he finds it difficult not to accept the suffering of the patients. Many are abandoned for their situation, says Jonas Jonas Bergquist.
- But I hope that our research can show our commitment and that there are actually things going on that can help them. I want to get rid of that hopeless feeling, because I feel hopeful.

 

[raghav]

HHV-6 encoded small non-coding RNAs define an intermediate and early stage in viral reactivation

Human herpesvirus 6A and 6B frequently acquires latency. HHV-6 activation has been associated with various human diseases. Germ line inheritance of chromosomally integrated HHV-6 makes viral DNA-based analysis difficult for determination of early stages of viral activation. We characterized early stages of HHV-6 activation using high throughput transcriptomics studies and applied the results to understand virus activation under clinical conditions. Using a latent HHV-6A cell culture model in U2OS cells, we identified an early stage of viral reactivation, which we define as transactivation that is marked by transcription of several viral small non-coding RNAs (sncRNAs) in the absence of detectable increase in viral replication and proteome. Using deep sequencing approaches, we detected previously known as well as a new viral sncRNAs that characterized viral transactivation and differentiated it from latency. Here we show changes in human transcriptome upon viral transactivation that reflect multiple alterations in mitochondria-associated pathways, which was supported by observation of increased mitochondrial fragmentation in virus reactivated cells. Furthermore, we present here a unique clinical case of DIHS/DRESS associated death where HHV-6 sncRNA-U14 was abundantly detected throughout the body of the patient in the presence of low viral DNA. In this study, we have identified a unique and early stage of viral activation that is characterized by abundant transcription of viral sncRNAs, which can serve as an ideal biomarker under clinical conditions.

Has this been posted previously ?

http://www.academia.edu/Documents/in/Non_coding_RNAs

 

[raghav]

We have to do all the hard work digging out the information on what OMF is doing and even then there is no response from them. The purpose of a newsletter is just for such information. We need a treatment for fatigue not today but yesterday. They seem more interested in writing an encyclopedia on ME/CFS whereas we patients are asking for a survival manual. They dont seem to get this simple fact.

 

[keepontruckin]

I am sure there is a reason they are lying low right now. Give them the time they need. I have trust in their reasons for being quiet. They can do no wrong in my mind. We will see.

 

[MonkeyMan]

We have to do all the hard work digging out the information on what OMF is doing and even then there is no response from them. The purpose of a newsletter is just for such information. We need a treatment for fatigue not today but yesterday. They seem more interested in writing an encyclopedia on ME/CFS whereas we patients are asking for a survival manual. They dont seem to get this simple fact.

Agree completely. They should have a spokesperson whose responsibility is to keep patients informed on a regular (i.e., weekly) basis on how things are coming along in terms of (1) finding out "what's in the blood" and (2) testing treatments. This is urgent. As much as I applaud (and have helped fund) their research efforts, they are not stepping up to the simple task of keeping patients in the loop.

This is not a knock on Ron, who I continue to believe is a brilliant scientist. Keeping patients in the loop should not be his responsibility. He should focus his energies on the research and not worry about communicating with us. But for God's sake, OMF, hire someone who can help us patients to understand what's going on, on a weekly basis. You can afford to hire a true spokesperson (as opposed to a "rah rah" fundraiser/cheerleader).

And (this is crucially important), this spokesperson should be available to answer any questions that we patients have, and serve as a liason with the OMF, so that we don't have to speculate and ask why things have been so quiet and start to lose hope every once in a while.

 

[Badpack]

@raghav well lets be fair, Ron clearly knows whats on the line. He only needs to look into his sons bedroom to know. For his age he clearly gives it all. If i look at my grandparents, they cant even use a smartphone and Ron is out there swinging it at zoom conferences and youtube interviews.
On the other side, i donated 2 times by now but they lost me on the way tbh. The email with the big announcement that "PhD student joins the ME/CFS research team" with a big donate button at the bottom, yeah, that was a bit to much for me. Im a doc myself, and lets be clear here, a PhD student is nothing to really brag about. Especially when they use the money i gave them to pay for it.
Also i dont understand why so little time and money is spend on the nanoelectronics assay. This article from stanford is now 1 year old. https://med.stanford.edu/news/all-n...-for-chronic-fatigue-syndrome-identified.html
Since then i heard 3 times during rons speeches that its so easy and fast to make a $300 version of it to test 300 samples a day to find out whats in the blood. But i feel like it just died of. That would be my first go to with all money and force. Create the machine. Partition the blood in different KDalton and extract the miracle "something in the blood".

 

[MonkeyMan]

Also i dont understand why so little time and money is spend on the nanoelectronics assay.

I don't either. Utterly baffled by this.

 

[perrier]

"As researchers learn more about the disease, the possibilities of finding treatment alternatives increase. This autumn, a secret drug study is underway for the time being. Several studies are also in progress on various biomarkers that could facilitate diagnostics.''

Can someone please help me out with the grammar on this one (I know the confusion is likely in the translation: Does this mean that this PAST autumn (2019) the study began, or does this mean this COMING autumn 2020 (in 5 months) the study will begin. Thanks.

 

[perrier]

I find it very interesting that , given the fact that a lot of ME patients say they have detoxification problems, not one single researcher is looking at the one and only detoxification organ of the human body.

Yes, the liver is entirely overlooked. Forgive the pedestrian question but do you think that yellowish tinged skin could signal liver issues. I do note this in some of the patients I have met. Thanks