International Canadian ME/CFS Conference May 3-5, 2018

[Kati]

@Kati There are no FDA approved drugs for ME/CFS. So, you can wait until one is developed and approved, or you can look at tge copious metabolomics research that shows biochemical abnormalities that can be addressed by nutrients.

Fluge and Mella found patients, especially women, burning amino acids for fuel.

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5161229/

Naviaux, Nathan, et al, found deficiencies in B12, B2, sphingolipids, etc.

http://www.pnas.org/content/113/37/E5472

Maureen Hanson, Ian Lipkin, etc al found biochemical abnormalities including nutrients that overlapped with the above. As did Christopher Armstrong and his team in Australia.

And Alain Moreau and many others have noted issues with the one carbon metabolism (methylation).

Nutrition is a promising avenue and something that can be used in treatment today.

Or, you can wait for an FDA approved drug.

Dear @Learner1 drs Davis and Hanson’s children are still sick. At least one of them is tube fed and unable to communicate. If it was this easy, we’d have people leaving this forum and living their lives.

It is important in my eyes that patients hear about the lack of evidence of diet influence on the disease. As the dietician said in Montreal, eat varied food that you tolerate, from all 4 food groups.

 

[Learner1]

Dear @Learner1 drs Davis and Hanson’s children are still sick. At least one of them is tube fed and unable to communicate. If it was this easy, we’d have people leaving this forum and living their lives.

@Kati I don't feel its my place to comment on the medical condition of the children of these researchers. I know nothing about their genetics, nutrient status, or other environmental factors, comorbidities or treatments.that led to their current situation. It would be quite surprising if you were well informed enough on these topics to make an educated comment.

No one said this disease is easy to cure. It is a multi organ system disease, with a plethora of biochemical abnormalities, many of which are unique to each patient.

I have been fortunate enough to have doctors who ran comprehensive lab work and found numerous nutrient deficiencies that match what the metabolomics researchers have been finding.

And have experienced marked positive changes in cognitive and physical function and sleep with the addition of MB12, folate, glutathione, NAD+, NADH, BCAAs, tyrosine, ornithine, melatonin, etc. These changes have taken place within minutes of ingesting these substances. They have gotten me significant improvement.

They may not offer a complete cure, but I believe it would be very difficult to get better without addressing nutrient deficirncies that are causing symptoms.

It is important in my eyes that patients hear about the lack of evidence of diet influence on the disease.

There is a plethora of research from the Friedman School of Nutrition at Tufts, from Harvard, Columbia, Cornell, Johns Hopkins, Oregon State, University of Maryland, etc. demonstrating how nutrition can impact health and influence disease. May be your eyes could spend some time reading it, and then you might change your beliefs after finding how patients can and do benefitvfrim nutrition.

As the dietician said in Montreal, eat varied food that you tolerate, from all 4 food groups.

So, if you have the PDH blockade and are burning amino acids for fuel, how exactly eill you get adequate fuel when your need from amino acids has substantially increased?

If you are severely deficient in folate and B12 as some patients have been shown to be in studies having been eating all 4 food groups, how do you ever cstch up by doing the same thing?

If you are deficient in vitamin D and live on the northern US, Canada, or Europe, how exactly do you get vitamin D between October and March where the sun is at too low am angle to allow vitamin D to me produced by the skin?

Or, if you're 17 standard deviations below the norm 8n a lab, as one ME/CFS patient was reported to be, how does one correct this?

And about 50% of ME/CFS patients have foid allergies/intolerances which may compromise normal ability to ingest nutrients and limit food choices and possibly nutrients.

All of these may indicate supplementation is needed, over and above a high quality, nutrient dense diet.

 

[Kati]

These changes have taken place within minutes of ingesting these substances

Placebo response would be my first guess. It usually takes 30 minutes for a drug to be absorbed when taken orally. That may make you mad for me to suggest this, and I apologize. It’s just that many of us have tried supplementation and have not found instant improvement upon popping the pill or even months afterwards.

May be your eyes could spend some time reading it, and then you might change your beliefs after finding how patients can and do benefitvfrim nutrition

Maybe you have done too much reading yourself and too much interpreting. The science for ME is not that advanced. Only a handful of clinical trials have been performed. Right now we are still at the hypothesis and describing finding phase. This research is promising and interesting, however this is research and there is so much more to uncover.

So, if you have the PDH blockade and are burning amino acids for fuel, how exactly eill you get adequate fuel when your need from amino acids has substantially increased?

It has not been proven that amino acids will correct the problem or will give you energy. No paper has been published in that regard. The paper only described what they saw. At this point more research is needed to understand the problem or problems, and what causes that. Also, we need to find out whether it is a cause or an effect.

If you are severely deficient in folate and B12 as some patients have been shown to be in studies having been eating all 4 food groups, how do you ever cstch up by doing the same thing?

We are not exactly sure it is relevant but one would hope your doctor would test for these. i believe the CCC recommends testing for B-12.

If you are deficient in vitamin D and live on the northern US, Canada, or Europe, how exactly do you get vitamin D between October and March where the sun is at too low am angle to allow vitamin D to me produced by the skin?

The Vitamin D supplementation is still being debated. Some physicians (in the wider community) say we need supps. and other teams say not. Then you know, it is available over the counter, and patients make the decision for themselves. The debate is still out. For one, it is one vitamin you can be tested for and easily correct, but does it correlate with the disease, I do not think it has been cornered as one huge problem. So I am not entirely sure why you are bringing this one up.

And about 50% of ME/CFS patients have foid allergies/intolerances which may compromise normal ability to ingest nutrients and limit food choices and possibly nutrients.

All of these may indicate supplementation is needed, over and above a high quality, nutrient dense diet

Each and everybody is different and their needs should be assessed by a competent physician and with serious nutritional concerns, should be seen by a registered dietician. Allergy and intolerances should be assessed, including assessing gluten sensitivities and milk intolerance. Patients who are not absorbing food and who have major digestive problems should seek out medical care.

As I said, typically ME is not a nutritional deficiency disease. It is a biological process and cause needs to be researched further, and large studies will need to be carried out before recommendations and policies be established. If you review prior interviews with Naviaux, he made sure to mention that the amino acid usage within the cells could not be corrected by amino acid supplementaton. Heck we are still sick.

 

[Learner1]

Placebo response would be my first guess. It usually takes 30 minutes for a drug to be absorbed when taken orally. That may make you mad for me to suggest this, and I apologize.

I was talking specifically about my reaction to injectible or IV nutrients. Like the Benadryl I get with my IVIG, the effect happens within minutes.

However, I do feel sublingual NAD+ or NADH within 15 minutes.

And I have found that taking BCAAs has caused my PEM to go away within an hour rather than lingering for days, and that taking glutathione and BCAAs before and after exercise has prevented fatigue.

And taking ornithine has given me back the ability to sleep through the night after 2 years of insomnia.

I'm not mad, just am surprised at this lack of knowledge. The effects I am referring to are not placebo, there have been different reactions to different substances, and many times, I haven't known exactly what the doctor has given me but only find out afterwards, because we didn't want me to know and have my knowledge confound my reaction.

It’s just that many of us have tried supplementation and have not found instant improvement upon popping the pill or even months afterwards.

Randomly supplementing may or may not have an effect. It would be like randomly taking pharmaceutical drugs, and saying, with the same broad brush, that drugs don't work.

Targeted supplementation, personalized to the individual can make a huge difference. Basing it on tests of what the patient needs and updating it as the patient's status changes is critical.

My sister was given magnesium and potassium in a hospital, in just this way. Hospitals also provide Aminosyn and TPN. Doctors prescribe B12 injections to patients showing signs of dementia and have severe B12 deficiency which has been linked to dementia.

Some of us have hereditary hemochromatosis, a genetic condition of iron overload, which, left untreated, can cause organ damage. So removing the excess iron is ordered by doctors for this condition.

There are no drugs for mitochondrial disease patients borne with various defects in mitochondrial function. The only treatments today are cocktails of "mito nutrients".

So, yes, manipulating nutritients, when based on good lab work indicating genetic issues, deficiencies, or imbalances, can work quote well, and is even prescribed and accepted in conventional medicine.

Maybe you have done too much reading yourself and too much interpreting. The science for ME is not that advanced. Only a handful of clinical trials have been performed. Right now we are still at the hypothesis and describing finding phase. This research is promising and interesting, however this is research and there is so much more to uncover.

A key finding the ME/CFS clinicians agree on is oxidative stress. Several researchers have found amino acid depletion.

My ME/CFS specialist has tested me for several nutrients, and has recommended B vitamin, amino acid and glutathione supplementation. He is in touch with the top researchers and I trust his judgement.

Additionally, as Ron Davis has said, we are all different. We all have different genes and different environmental factors, like diet, water supply, exposure to toxins, and cell danger stressors which affect our nutrient status. Identifying deficiencies and imbalances and ensuring our nutrient status is optimized likely will not provide a complete cure, but it can definitely move us up the scale in functionality and improve our quality of life.

It has not been proven that amino acids will correct the problem or will give you energy.
No paper has been published in that regard. The paper only described what they saw.

Sure, no one has said that giving an ME/CFS patient amino acids will directly result in more ATP production, either through the Krebs cycle or the electron transport chain.

But depletion of amino acids can cause biochemical processes to be starved and to malfunction. Lack of tyrosine, tryptophan, and GABA can affect mood. Lack of methionine can affect methylation. Lack of lysine can encourage herpes viruses. Lack of ornithine can affect urea cycle function and sleep. Lack of BCAAs can keep one in PEM.

Robert Erdman's book, "The Amino Revolution" is a classic. It provides good info on what the amino acids do for the human body.

At this point more research is needed to understand the problem or problems, and what causes that. Also, we need to find out whether it is a cause or an effect.

Yes, we definitely need more research. But we can sit around and wait for it to be funded, carried out, and published, which will take years, if not decades. Most of us don't have that long to wait, so making educated guesses seems like a pragmatic approach, given the circumstances

We are not exactly sure it is relevant but one would hope your doctor would test for these. i believe the CCC recommends testing for B-12.

The doctors I see are sure how they are relevant and do test and treat folate and B12 deficiencies. And for cofactors they work with, like magnesium, B6, B2, and amino acids.

The Vitamin D supplementation is still being debated. Some physicians (in the wider community) say we need supps. and other teams say not. Then you know, it is available over the counter, and patients make the decision for themselves. The debate is still out. For one, it is one vitamin you can be tested for and easily correct, but does it correlate with the disease, I do not think it has been cornered as one huge problem. So I am not entirely sure why you are bringing this one up.

Here are some resources so you can learn about it:

https://www.healthline.com/nutrition/vitamin-d-deficiency-symptoms

http://www.meresearch.org.uk/our-research/completed-studies/vitd-status-and-vascular-health/

https://www.vitamindcouncil.org/mem...ology-chronic-fatigue-syndrome-and-vitamin-d/

Each and everybody is different and their needs should be assessed by a competent physician and with serious nutritional concerns, should be seen by a registered dietician. Allergy and intolerances should be assessed, including assessing gluten sensitivities and milk intolerance. Patients who are not absorbing food and who have major digestive problems should seek out medical care.

Agreed. Preferably a competent doctor trained in functional medicine.

As I said, typically ME is not a nutritional deficiency disease.

This is not true. Numerous significant deficiencies have been found in ME/CFS patients.

It is a biological process and cause needs to be researched further, and large studies will need to be carried out before recommendations and policies be established.

There are numerous biological processes involved. There is a great need for further research.

However, since you're a chemotherapy nurse, do you also believe that cancer patients should sit around waiting for all the research to be completed before pursuing treatment?

And, even when there are well established cancer protocols, do they guarantee patients success?

The answer is no, response is highly individual. As it was in my case, where the well-researched standard of care triggered my ME/CFS....

Science can inform the process of diagnosis and treatment, but in the end, we are individuals and must be treated as individuals.

If you review prior interviews with Naviaux, he made sure to mention that the amino acid usage within the cells could not be corrected by amino acid supplementaton.

There are many layers to this disease. As stated above, amino acids can benefit patients in many ways. They may not completely cure ME/CFS, but they can improve our quality of life while pursuing other interventions. I find that avoiding PEM and getting a good night's sleep are tremendously helpful in my ability to function.

Heck we are still sick.

That may be, but diet and nutrients can make a big difference in our ability to function and our quality of life.

 

[GreyOwl]

Davis said they've found lower levels of TT virus in patients than controls perhaps from chronic immune activation.

Sorry if I missed this, what is TT virus?

 

[Learner1]

Sorry if I missed this, what is TT virus?

Could it be the torque teno virus?

https://academic.oup.com/jid/article/210/4/668/2908601

 

[Gemini]

Sorry if I missed this, what is TT virus?

@GreyOwl, Lipkin also found Anelloviridae [family TT virus belongs to] in ME/CFS cited by @Simon in 2014:

http://forums.phoenixrising.me/index.php?threads/hunting-down-the-cause-of-me-cfs-other-challenging-disorders-lipkin-in-london.33604/#post-519980

Then, working with Dr. Jose Montoya, Lipkin moved on to high-throughput sequencing that can detect any pathogen, but again they found no specific microbes linked to ME/CFS. They did find that a large but poorly-understood group of viruses - anelloviruses - were less common in patients than controls, but the significance of this is unclear.

Wikipedia background on the virus:
https://en.wikipedia.org/wiki/Transfusion_transmitted_virus

 

[Gemini]

Could it be the torque teno virus?

https://academic.oup.com/jid/article/210/4/668/2908601

@Learner1, could be.

A question might be, has Ron Davis' team "replicated" the earlier Lipkin/Montoya finding regards this virus?

 

[Murph]

I wish people stopped foicusing so much on food. This is not a nutritional problem. It has been made very clear.

I 100% agree with you - MECFS is not a simple nutritional problem. But thinking of food only as nutrients is kind of a "modern" 1960s approach. That was when they thought you could replicate everything people were getting from food with a few pills.

These days we can see that while yes, food is full of important nutrients and the discovery of all those vitamins was doubtless important, it plays another role too.

Food shapes your microbiome. The gut bacteria, fungi, archaea and viruses that live in the intestines live and die depending on what come down the pipe. And that microbiome has a clear effect on gut function, metabolism, immune function, and mental health. We are only just beginning to grasp how profoundly symbiotic is our relationship with these little guys within.

Even at this stage of very limited understanding, a a tiny share of MECFS patients can get a big health improvement from changing their diets, and a big share can get a tiny improvement. That counts for something, and I wouldn't be at all surprised if we can wring more benefit out of targeted eating!

 

[Learner1]

As noted above, I believe that nutrition is critical for health, and agree that diet helps shape the microbiome.

However, I eat as nutrient dense a diet as possible, with lots of organic vegetables, nuts and seeds, organic meat and wild fish, with no sugar, grains or processed food, and my testing consistently shows deficiencies in B12, folate, plant based antioxidants, manganese, molybdenum, and most amino acids.

It is simply not possible for me to get the nutrients my body needs from diet alone, so supplementation, on top of an optimized diet, is critical.

 

[JaimeS]

It is simply not possible for me to get the nutrients my body needs from diet alone, so supplementation, on top of an optimized diet, is critical.

I still honestly can't believe how much B vitamins I needed at first to function. It was out of this world. I now take far less than before, much more like a normal dose, but you can pry my suprabiological doses of CoQ10 from my cold, dead fingers.

I also feel a lot better on a pretty specific diet. For me, the fewer grains/carbs, the better; and avoiding food intolerances has also played a significant role in my well-being.

 

[mariovitali]

Speaking of nutrition and its impact, i believe that if an ME/CFS Patient consumes a potent P450 Inhibitor such as Grapefruit there will be an increase of symptoms.

 

[Kati]

Diet would not affect something like this: http://jaha.ahajournals.org/content/7/8/e008351
Which by the way, is hot off the press.

 

[JaimeS]

But it does relate to diet. If you are making multiple kinds of autoantibodies, you may have an increased number of food intolerances as well.

But are we really arguing that diet doesn't matter to health? For everyone / anyone?

No one is suggesting it's curative!

[Edit: Ehhhh even with ME brain I feel we've had this exact conversation before? Let's not beat a dead horse.]

 

[Diwi9]

Speaking of nutrition and its impact, i believe that if an ME/CFS Patient consumes a potent P450 Inhibitor such as Grapefruit there will be an increase of symptoms.

Can you explain this more, I'm curious about the link? Cimetidine has reportedly helped some people with ME/CFS and is a P450 inhibitor I believe.

 

[mariovitali]

Can you explain this more, I'm curious about the link? Cimetidine has reportedly helped some people with ME/CFS and is a P450 inhibitor I believe.

Right, i will try to explain this as much as i can.

ME/CFS is a hypometabolic state. We know this. Since the liver is the main metabolic organ, we do not want to be taking things that slow its metabolic function even further.

Now, regarding what you said about Cimetidine: well spotted... but things are not that simple. different P450 inhibitors inhibit different CYPs in varying levels that may or may not be problematic (ME/CFS-wise) for an individual . To make things worse there are substances that work both as inhibitors and inducers.

My next question for Cimetidine : Of all the people that hve tried it, where there consistent results across time or after some time these people ended up feeling worse than before?

 

[Diwi9]

My next question for Cimetidine : Of all the people that hve tried it, where there consistent results across time or after some time these people ended up feeling worse than before?

It was the first thing that helped me...when I was really, really sick. However, it stopped working after sometime. The effect it had was to take the edge off the absolute flu-like feeling. My doctor said that is because it is an H2 blocker...so maybe MCAS-related? I know that it can potentiate certain drugs that access the same pathway, in this sense cimetidine can be helpful and harmful.

 

[mariovitali]

It was the first thing that helped me...when I was really, really sick. However, it stopped working after sometime. The effect it had was to take the edge off the absolute flu-like feeling. My doctor said that is because it is an H2 blocker...so maybe MCAS-related? I know that it can potentiate certain drugs that access the same pathway, in this sense cimetidine can be helpful and harmful.

Sure, makes sense. The P450 inhibition does potentiate certain drugs since they are being metabolized slower, hence the active ingredient stays more time in your body.

An interesting question would be whether you ultimately ended up feeling worse after this initial positive outcome.

 

[Diwi9]

Sure, makes sense. The P450 inhibition does potentiate certain drugs since they are being metabolized slower, hence the active ingredient stays more time in your body.

An interesting question would be whether you ultimately ended up feeling worse after this initial positive outcome.

I don't have a specific recollection as it was a year ago and I would often overdo it and crash back then when I felt a bit better.

 

[adambeyoncelowe]

Cimetidine makes my amitriptyline work better because of its effects on liver metabolism.