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