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

[Badpack]

@perrier i read 2020. Coming autumn.

 

[Grigor]

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

@mariovitali Hanson does:

Some more stuff on the liver by Maureen Hanson et al.:

"Primary bile acids such as sulfoglycolithocholate (13) are synthesized in the liver and the major bile salts result from its conjugation with taurine (28) and glycine, forming taurochenodeoxycholate and glycochenodeoxycholate (21), respectively, which are all numbered metabolites found to be significantly reduced in ME/CFS patients. Reduction in these compounds is suggestive of damage to the liver. A study from the FDA National Center for Toxicological Research (NCTR) was able to identify liver injury biomarkers as the result of drug-induced hepatotoxicity in rats25. Strikingly, several other metabolites identical to our findings were also identified in their report, namely 5-guanidino-2-oxopentanoic acid (12, also named 2-oxoarginine), sebacic acid (60), along with energy metabolites from the glyoxylate and dicarboxylate metabolism. These biomarkers could be used to define a serum metabolic signature by creating a panel for hepatotoxicity prediction25. Whether ME/CFS patients actually have liver damage as a result of the disease is not known, as it also could be a consequence of medication toxicity in this patient group, which often uses prescription or over-the-counter pain relievers. Abnormally elevated levels of fatty acids 72, 73 and 74 (Table 2) could be a sign of hyperlipidemia and could also be related to a deficiency in liver activity."

https://m.facebook.com/story.php?story_fbid=2275914906003750&id=1931542240441020

 

[mariovitali]

@Grigor


I really wish Dr. Hanson was. I am saying this because i followed up with her and she never got back to me although she found the theory (meaning the importance of Liver involvement) "quite interesting". To the best of my knowledge nothing has been followed up Liver-wise despite the numerous mentions on "Liver involvement" on the paper you are referring

@perrier what you mentioned about ME patients appearing yellow, this could be a sign that the Liver does not function properly. It is known as "Jaundice". Note that we cannot say that this is indeed attributed to Jaundice. Has any doctor followed up with these patients?

Jaundice” is the medical term that describes yellowing of the skin and eyes. Jaundice itself is not a disease, but it is a symptom of several possible underlying illnesses. Jaundice forms when there is too much bilirubin in your system. Bilirubin is a yellow pigment that is created by the breakdown of dead red blood cells in the liver. Normally, the liver gets rid of bilirubin along with old red blood cells.

In other words, it is possible that impaired Liver function is responsible for this.


https://www.healthline.com/health/jaundice-yellow-skin

I am not suggesting that all ME patients have liver issues but i strongly believe that not enough attention has been given to it.

 

[Hopeful1976]

I contacted omf today and they said that Chris armstrong has been working closely with Dr Prusty:

Hello. We are aware of Dr. Prusty's work and our Science Liaison, Dr. Chris Armstrong has been in touch with Dr. Prusty for quite some time. We plan to keep the community updated as more information becomes available... stay tuned for more updates'.

Sounds positive!

 

[raghav]

EDITED - I apologize for posting this information which I read in a facebook page. I thought it was genuine but Prusty confirmed that it is not so. Please ignore this post. Thanks.

 

[Wally]

@raghav - Sorry if I missed this question being asked and answered in another post, but do you know the date of the resubmission to the Journal? Do you know which Journal is reviewing the paper? Do you know the new estimated time frame that Prusty believes his paper might receive final approval and be ready to be published both online and/or in a “print” copy?

I realize we are in the middle of an usual worldwide event that has disrupted many businesses, but it does appear that many scientific journals are still publishing papers. It was my understanding that Prusty’s paper had been reviewed by the Journal and only a few changes/additions were added that would need an additional review.

Prusty seemed to express some level of frustration with the length of time it was taking to get his paper published and he had set a deadline for this wait period to end or he would go ahead and publish it himself thru BioRxiv. Then when the additions/revisions were requested and a resubmission was made the timetable for publication seemed to become a bit more nebulous to pin down with words being used like “soon” or in “2 - 3 weeks”.

Do you know if Prusty still feels the same frustration as the first go round and if there is a new timeline that he has determined will trigger him to self publish, if the Journal reviewing his paper does not publish by a certain date?

Note - Referencing Reply/Post Nos. 171 and 172 dated 3/6/2020.

 

[raghav]

From Prusty's tweet on April 6th it has been approved for publishing by the journal. He said it will be available for public viewing in a few days. Yesterday he told me there is no delay and that it will be published very soon. I dont know the journal name.

 

[Wally]

Prusty needs around 400k euros to find a complete cure for this disease, including all subgroups. For OMF generating this amount will not be difficult. So lets hope they collaborate and bring this disease to an end. Lets wait for Prusty's paper to be released by the publisher.

@raghav - Current conversion rate for 400 thousand euros to U.S. dollars = $436,192.00. When he publishes his paper/discovery will he be willing to explain how he specifically plans to use these funds in order to “complete the cure for this disease”?

 

[RL_sparky]

@raghav - Current conversion rate for 400 thousand euros to U.S. dollars = $436,192.00. When he publishes his paper/discovery will he be willing to explain how he specifically plans to use these funds in order to “complete the cure for this disease”?

If he is willing to publically stand behind the statement and as you say give some specifics, I would think the community would be mostly committed to help in raising some of this money. This is a pretty bold statement for him to have made.

 

[MonkeyMan]

If he is willing to publically stand behind the statement and as you say give some specifics, I would think the community would be mostly committed to help in raising some of this money. This is a pretty bold statement for him to have made.

Hi @raghav - did Prusty actually use the phrase "complete the cure for this disease"? His words or yours?

 

[Hoosierfans]

Just read through this whole thread....so encouraging!!!!

 

[raghav]

@Wally @RL_sparky Let me put things in perspective. OMF has received 24 million USD in 8 years as mentioned on their website. We all contributed towards that. Did at any stage OMF guaranteed a cure for this disease ? But we all kept donating and keep donating without any guarantee. But all of a sudden when Prusty says he can find a cure in 3-4 years time why are you asking for a guarantee. Prusty has a high degree of confidence that he can find a cure. But if you ask him to give a guarantee he cannot do so. He wants funds and I have been trying to help him. He himself told me many donors approach him but in the end chickened out. They either want a guarantee or want to invest and want returns. Prusty does not want to take that route. So if you want a timetable sorry then he cannot give you. But the funds estimate I gave is roughly what he needs towards this effort. Hope this clarifies any doubt. I told that I got that info from facebook. No that was a diplomatic lie I told to protect a few people on this forum who wanted to fund Prusty but had undue expectatiions which no researcher can meet.

So next time before you donate to OMF or SolveME ask them for a guarantee and they will say "Talk to the hand" I am trying to help Prusty get funds so that he can find a cure. He does not want to take funds from patients. But the reality is nobody else gives a damn. Only patients and their families contribute. So if crowdfunding is the way to go then let it be so.

 

[raghav]

https://twitter.com/i/web/status/1250561247139057665

Those dreams became my wings and I started flying. After almost 35 years of my journey, I have now crossed continents, reached to schools with more than 30 rooms and all sophisticated facilities. But I learned now that science is nothing but a sophisticated business.

 

[RL_sparky]

@Wally @RL_sparky Let me put things in perspective. OMF has received 24 million USD in 8 years as mentioned on their website. We all contributed towards that. Did at any stage OMF guaranteed a cure for this disease ? But we all kept donating and keep donating without any guarantee. But all of a sudden when Prusty says he can find a cure in 3-4 years time why are you asking for a guarantee. Prusty has a high degree of confidence that he can find a cure. But if you ask him to give a guarantee he cannot do so. He wants funds and I have been trying to help him. He himself told me many donors approach him but in the end chickened out. They either want a guarantee or want to invest and want returns. Prusty does not want to take that route. So if you want a timetable sorry then he cannot give you. But the funds estimate I gave is roughly what he needs towards this effort. Hope this clarifies any doubt. I told that I got that info from facebook. No that was a diplomatic lie I told to protect a few people on this forum who wanted to fund Prusty but had undue expectatiions which no researcher can meet.

So next time before you donate to OMF or SolveME ask them for a guarantee and they will say "Talk to the hand" I am trying to help Prusty get funds so that he can find a cure. He does not want to take funds from patients. But the reality is nobody else gives a damn. Only patients and their families contribute. So if crowdfunding is the way to go then let it be so.

Hi Raghav, Thanks for the explanation. I was shocked at the statement you posted but figured if he had made that much progress and was willing to say so publically then it would of made it a lot easier to raise the needed funds. I was just responding to your comment. I don't need guarantees from the research projects I get involved with, or nor did I ask for a timeline as you insinuate, but if he had made such a statement then I would want public clarification like I asked about so that it would be easier to raise money for him.
Oh, and a lot of us are trying and raising money for Prusty as we believe in his work also.

 

[Learner1]

It sounds like Dr. Prusty is doing good work that deserves funding.

@raghav have you had any effect from kuvan?

I've been on 10mg of Kuvan daily since early March. It resulted in a 25% increase in my activity level, but I already was on robust 5-MTHF, B12, and C supplementation. I take the 100mg packet, put it in a dropper bottle with 10ml water and dropper out 1ml sublingually every morning. The color changes slightly, but potency seems to last 10 days. If I feel a crash coming on in the afternoon, I take another .5ml or 5mg.

I have genetics predisposing me to low BH4 and have been working on reducing peroxynitrites. I am suspecting that Kuvan is increasing nitric oxide which helps my activity.

Why could Mitochondrial dysfunction simply be due to toxicity from D-Lactic acid or other organic acids?

It could. We are all different. D-lactic acidosis can be related to microbiome composition.

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.

Agreed. But again, this is individual. Doing an OAT test every so often can help one work the problems found.

. 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.

Not all. My lactic acid has been LOW normal or LOW for the past 4 years. Another contributor to high lactic acid is nutrient deficiencies, especially thiamine deficiency.

Forgive the pedestrian question but do you think that yellowish tinged skin could signal liver issues.

Yes, it could.


I think there are multiple mitochondrial issues that are possible. I recently did an OAT test and a Genova Diagnostics NutrEval the same day, then a metabolic test, where one lies down then walks on a treadmill at increasing grades, while wearing a mask with large vacuum hose attached to a machine to collect metabolites as more demand is placed on the body.

These tests pointed to 2 problems. One is that I have a problem with fatty oxidation. I burned carbs at rest and at higher activity levels when I should have been burning fat, and carbohydrates at low activity levels. I run out of carbs to fuel aerobic activity. The second problem is low pyruvate that has dropped as I've been improving. Now, I need to figure out the causes and see if I can improve these.

I've also worked to reduce peroxynitrites from oxidative and nitrosative stress, a known feature of ME/CFS, which damage mito membranes and impair complex I (like metformin does, which is not a good thing, as it is a feature of many serious diseases).

Another issue is oxalates, which are not discussed enough around here, but which many ME/CFS patients have. They are sharp crystals formed from the oxalates we consume in vegetables, fruits, grains, and nuts combine with calcium, and get deposited throughout our bodies. We are susceptible to this by AGXT SNPs and/or use of antibiotics which kill off oxalate degrading bacteria in our microbiomes. They damage mitochondria and fill tissues like the thyroid, thymus, kidneys, heart, lungs, eyes, etc. and deplete minerals, sulfur, and B6.

I am not sure how any of these issues relate to mito fragmentation and fission problems but think they are common enough in ME/CFS patients, happening at different levels in each of us, that a single pill is unlikely to fix us easily.

 

[Wally]

@Wally @RL_sparky Let me put things in perspective. OMF has received 24 million USD in 8 years as mentioned on their website. We all contributed towards that. Did at any stage OMF guaranteed a cure for this disease ? But we all kept donating and keep donating without any guarantee. But all of a sudden when Prusty says he can find a cure in 3-4 years time why are you asking for a guarantee. Prusty has a high degree of confidence that he can find a cure. But if you ask him to give a guarantee he cannot do so. He wants funds and I have been trying to help him. He himself told me many donors approach him but in the end chickened out. They either want a guarantee or want to invest and want returns. Prusty does not want to take that route. So if you want a timetable sorry then he cannot give you. But the funds estimate I gave is roughly what he needs towards this effort. Hope this clarifies any doubt. I told that I got that info from facebook. No that was a diplomatic lie I told to protect a few people on this forum who wanted to fund Prusty but had undue expectatiions which no researcher can meet.

So next time before you donate to OMF or SolveME ask them for a guarantee and they will say "Talk to the hand" I am trying to help Prusty get funds so that he can find a cure. He does not want to take funds from patients. But the reality is nobody else gives a damn. Only patients and their families contribute. So if crowdfunding is the way to go then let it be so.

@Ragrav - The questions I raised were based off of information that you provided in yout posts about Prusty and/or his public tweets. I did not nor am I aware of anyone here on the PR Forum saying or implying that Prusty had to guarantee a cure for this illness to receive funding from the ME/CFS community.. I think there may possibly be some confusion on your part on this point.

Researchers have approached the ME/CFS patient community in the past with requests for help in raising funds for research and the patient community has been very generous in trying to contribute funds. OMF and SolveME are only two examples of the many organizations that receive research funds from this community and no guarantees of a cure have ever been asked or expected.

PR Forum members were actively involved in a fundraiser for Dr. Ian Lipkin. I was approached by one of the members spearheading that fundraiser and I advised as to the importance of patients understanding the purpose of the research, a general idea of how the funds would be used, the estimated time frame of the research, if periodic updates on the progress of the research would be provided to donors and if the funds would be used only for the stated research project and how any leftover funds would be allocated in the future (i.e. if to be used only for future ME/CFS research projects).

These type of questions/details turned out to be very important because Columbia University, the institution where Dr. Lipkin works, had not initially set up a separate account for the research project that the community was asked to fund. But we were able to negotiate with Columbia to allow donations to be earmarked for the specific research project rather than going into a general lab research fund. If PR Forum members formed a group to help with fundraising for Prusty’s proposed research, I think it would be likely that the same type of questions would be asked.

I understand that Dr. Prusty has not wanted to nor has he directly asked for patients to fund his next ME/CFS research project, but if you or someone else would like to do so, I think you and Prusty would find people here and in the general patient community to be very supportive of such a fundraiser, should Dr. Prusty’s soon to be published paper reveal significant advancements in understanding this illness.

So, please don’t count out the ability of this community to rally behind Dr. Prusty to help raise funds for his research should his findings live up to the tantalizing hints/hope that he has provided in his tweets. A famous quote from an American movie, “Jerry McQuire” was “Show Me The Money”. In the case of supporting future research through monetary donations, I believe the ME/CFS community would ask to be shown the research before a contingent of patients will work hard to “Show Him Our Money”. 😁 We don’t want him to feel disillusioned because other monetary support has not yet come his way. We are a community that is a bit weary from big pronises being made by researchers who say they can solve or even make a significant impact on the road to trying to solve this illness, so perhaps any perceived reticence is more cautious optimism than an outright rejection of his future ideas/projects.

Also, I believe the questions about publication of Prusty’s paper are a result of information he and you shared about the timeline re publication. It is ok to just say that no specific time re publication is currently available. In the past some researchers have been able to let us know when the publisher has provided them with a publication date. If Prusty does not know this date or it is not something that he can share, then that is ok. But if public statements are made giving a timeframe for publication (i.e. 2 to 3 weeks) and that time passes, it should be expected that questions will be asked to inquire as to an update on the status of publication.

Hope this clears up any misunderstanding about the questions that I or others may have asked you. I very much appreciate all the information that you have provided about Prusty and the research that he is involved with to try to help ME/CFS patients. Since, Prusty is located in Germany, perhaps we could send him a virtual toast with some nice German brew to let him know that we do appreciate all the work he has contributed to solving our illness and we are very excited to hear what else his has learned and what he wants to investigate in the future. 🍺🥨

 

[raghav]

@Wally Somebody from this forum who is watching this thread actively had told Prusty that I was trying to collect funds on his behalf. I had introduced some people on this forum to Prusty who contacted me saying they would like to fund him and I also told them there is nothing in it for me. But whoever this person who told Prusty had told him things like I was trying to make money using Prusty. I have always said and I maintain that I dont get even a penny from Prusty or the donor for what I am doing. I am just helping Prusty so that he can help us find a cure.

I know who that person who is spreading such wrong statements about me. But he or she is hiding under a nickname on this forum. So I dont want to drag this topic any further. If you want to fund Prusty you can contact him directly at his email id given at the beginnng of this thread.

 

[Rufous McKinney]

They either want a guarantee or want to invest and want returns. Prusty does not want to take that route

Guarantees are in short supply in the real world. Nobody can guarantee a future outcome.

 

[Countrygirl]

@Grigor


I really wish Dr. Hanson was. I am saying this because i followed up with her and she never got back to me although she found the theory (meaning the importance of Liver involvement) "quite interesting". To the best of my knowledge nothing has been followed up Liver-wise despite the numerous mentions on "Liver involvement" on the paper you are referring

@perrier what you mentioned about ME patients appearing yellow, this could be a sign that the Liver does not function properly. It is known as "Jaundice". Note that we cannot say that this is indeed attributed to Jaundice. Has any doctor followed up with these patients?


I am not suggesting that all ME patients have liver issues but i strongly believe that not enough attention has been given to it.

Don't forget that a significant number (about one in six) of people with ME have Gilbert's Syndrome. I have this and my face and hands can look quite yellow at times. It is not supposed to be significant.

 

[mariovitali]

Don't forget that a significant number (about one in six) of people with ME have Gilbert's Syndrome. I have this and my face and hands can look quite yellow at times. It is not supposed to be significant.

You are right @Countrygirl , Gilbert's can be the most likely cause. I am trying to see whether Gilbert's syndrome is as benign as some sources suggest. There are many sources saying that it is a totally benign condition but things may not be that simple. Please see below :

Studies of people with Gilbert’s syndrome also reveal they are particularly prone to vague symptoms such as extreme tiredness, headaches, dizziness and nausea, stomach and abdominal discomfort. They often experience anxiety symptoms and insomnia. All of these symptoms occur in most people at some time, so it is difficult to know how they are actually related to the syndrome.

<SNIP>

Jaundice and Gilbert’s syndrome do not damage the liver or have other consequences so there is no treatment that can be justified. Living with the syndrome is a matter of managing your lifestyle so that you feel as well as possible most of the time.

It is sensible to avoid the factors that trigger a jaundice episode, although this is not always possible. If you get flu or an attack of gastroenteritis you then need to take care not to overdo things and to rest and take fluids until your body has dealt with the infection and any episode of jaundice is over.

Do not ignore jaundice that is more serious than usual or lasts for longer as this may be due to a secondary problem that needs investigation and treatment.

People known to have this syndrome also report a greater intolerance to alcohol; if they overdo drinking they end up with exceptionally severe hangovers.

What worries me is the last one. Alcohol intolerance is a sign of impaired liver function (the liver cannot detoxify the body from ethanol). My guess also would be that people with Gilberts should be extremely cautious with certain medications.

So it may not be that easily dismissible. Thank you again for pointing out and reminding me about Gilbert's and ME.