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Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of, and finding treatments for, complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia, long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.
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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
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.
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”?
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.
@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.
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.@raghav have you had any effect from kuvan?
It could. We are all different. D-lactic acidosis can be related to microbiome composition.Why could Mitochondrial dysfunction simply be due to toxicity from D-Lactic acid or other organic acids?
Agreed. But again, this is individual. Doing an OAT test every so often can help one work the problems found.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.
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.. 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.
Yes, it could.Forgive the pedestrian question but do you think that yellowish tinged skin could signal liver issues.
@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.
They either want a guarantee or want to invest and want returns. Prusty does not want to take that route
@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.
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.
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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.