There are numerous ME/CFS researchers who have identified nutrient deficiencies and imbalances in ME/CFS patients. It makes sense to try to bring these lab values to normal and see if symptoms retreat. With my doctors, I have methodically gone through the research, run tests to see if I have similar deficiencies or imbalances and supplement as the results suggest, and it had led to improvements. I also have used a number if pharmaceuticals to support hormones, immune function, to tackle autoimmune symptoms, and to fight infections. Without these interventions, I would not have been as successful. We are all individuals, it is important to find our unique issues, driven by genetics and environmental factors, there are do many flavors of this disease, that it is highly unlikely the protocol used by one patient will work on another, making randomized double blind placebo studies rather useless in making any conclusions about effectiveness.
Rather, the 2015 IOM report suggested a systems biology approach using individualized medicine and one of the stated goals of the OMF currently is yo look into personalized medicine approaches.
What I meant was why one person’s ME supplement protocol doesn’t work at all for most other people.
Good point - agreed.
There should be huge disclaimers on every thread and every post about supplements or other non-treatments saying, “This is not a treatment for ME, it will almost certainly not work for virtually all of you, beware before wasting money on this!!!”
ok, let's also put disclaimers on antivirals, immunomodulators, steroids, spinal surgery, Ampligen, HBOT and any other treatment discussed in this forum.
We need to be bold and say supplements cannot treat ME, otherwise we are doing a disservice to the community. Just because a protocol might work for a very small sliver of ME patients does not mean it’s a treatment.
There are a great number of patients benefiting from various supplements. However, treatment is more successful when comprehensive treatment is done and comprehensive supplement protocols are developed and used, rather than trying an individual supplement just because someone else said so.
That can be said about drugs too (like Abilify), but supplements are far weaker than drugs, and given the severity of this illness I believe a very weakly acting compound has far less chance of helping on a broader range of people, than drugs might. That’s why ME researchers don’t do many of any studies on supplements, they do them on drugs.
This is absolutely not true. I have had great success with my POTS symptoms using Huperzine A. I tried it whenn I couldn't get pyridostigmine (Mestinon) compounded anymore and I couldn't take the FDA version due to allergens. It is cheaper, equally effective, and lacks the unpleasant side effects of pyridostigmine. And, it gas a little ngrr half life than neostigmine, which I also tried.
Conversely, I have also had good results from Kuvan, which used to be a cheap supplement, now an orphan drug after BioMarin patented it, making it more expensive and out of the reach of most patients. It increased my energy by 30%.
There are no ME/CFS studies on either, yet they're effective on me. Come to think of it, I've also had success with other substances that have been studies in ME/CFS and have been found to be ineffective....IVIG and Rituximab... Studies are nit very useful unless there are very specific criteria for subsets of ME/CFS patients and they are done in context.
As a patient, I am very aware that my genetics, health history, and comorbidities make me extremely unique, so much do that I would never be accepted into any ME/CFS study, and likewise, I cannot have faith in the results of any ME/CFS study. The best I can do is compare my situation, genetics and labs to what I read in various studies and make educated guesses on what I can try, with my doctors' help.
I believe a thread on supplement pro/cons is a bit pointless because we will always hit a wall in the discussion without efficacy data! It will all just be hearsay. Just because one finds 30 users that say something helps that number is meaningless, and without knowledge as to why it helps certain people and not others (so that the others don’t have to waste the time and money) then it’s even more meaningless.
It is very meaningful to discuss whatever treatment in the context of who it's working on, what their genetics, environmental factors, symptoms, length and severity of illness, and comorbidities are.
Most FDA approved drugs aren’t curative either, for me that’s not the main problem with supplements. It’s that drugs generally have a much more significant effect on disease symptoms over a broader range or people with the disease or disorder than even highly tweaked supplements derivatives
As someone who has permanent damage from 3 FDA approved drugs taken as prescribed and was almost killed by a fourth, I have learned the hard way that UNINTENDED consequences can happen from these drugs when they are myopically prescribed for a particular indication without any thought to the possible effects throughout the rest of the body.
A good test for supplements is to push yourself past your energy envelope such as going to the gym or swimming a decent distance to see if PEM won't kick in and surface.
As
@Mary pointed out, BCAAs can have a good effect. I have found that taking glutathione and BCAAs can help me avoid PEM and have on multiple occasions been able to pull myself out of PEM using them (once it occurs to me to take them in my funk..)
You wouldn't tell someone with late stage of motorneurone disease or locked-in syndrome to take a pile of vitamins and a handful of seaweed so don't do it with CFS.
I'm not sure what the seaweed would go, but nutrients have been found to be effective in neuroligical diseases.
It is prudent in any case to determine if a given body needs a particular nutrient before using it. With a need. And sufficient co-factors, success is more likely.
Every time somebody mentions improvement they personally feel from a supplement, they are putting another nail in the ME coffin of neglected research and scientific scrutiny?
I disagree. The researchers have definitely been researching nutrients - Gkuge and Mella, Maureen Handing, Robert Naviaux, Neil Nathan, Chris Armstrong, Neil McGregor, Ron Davis, and many more.
Have supplement advocates got any idea how soul destroying to be confined in a small dark room for most of your existence only for people you rarely see or here from, to suddenly visit you because they have read in OK magazine ( an example ) that horny goat weed or seaweed from the South Coast of New Zealand has miraculously moved a patient into remission.
This is a fallacy. This is why I have argued here in many occasions with a certain prominent member who has a penchant for asking members if a particular intervention had moved them up one level of the scale from severe to moderate to mills. My experience is that this is ridiculous, that the best success cones from thoughtfully combining treatments for this complex, multi-organ system disease.
Ive nearly bankrupt myself and my family through unproven treatments and ridiculous alternative therapies. 35 years and well over $250,000. And guess what? I'm still severe.
If other people won't say it, I will. "To the desperate and naieve, save your money".
One other thing i will add. There is nothing better to obtain a placebo effect than spending money you haven't got. People are desperate to see improvement and don't like to be told ( or admit ) they have just wasted another small fortune.
I have spent that much and have improved. I participate and share what I've learned because I hope you provide knowledge that can save others time and expense in this painful process. I've done some things wrong along the way, and out of optimal order, and only began to improve when my treatment plan encompassed both supplements and pharmaceuticals customized to my needs. I'm very sorry that you have not been equally successful, but encourage you to keep trying. In every patient that hasn't improved, there is a great deal of opportunity, of problems missed, problems mishandled, or very good interventions tried unsuccessfully when the proper groundwork wasn't laid. I've learned the hard way that things must be fine in order that's not entirely obvious up front, but that doing the groundwork up front lays the stage for later successful interventions.
Many people approach supplements with the idea of using anti-oxidants, supporting mitochondria, and boosting methylation which doesn't work. Strong anti-oxidants raise cancer risk and weaken cancer defense .
This is exactly what I've been doing, successfully, along with other interventions. I am a stage 3 cancer survivor and have no interest in more cancer. Using a balance of antioxidants to work synergistically with one another and mitochondrial nutrients has been very useful. I've attached a paper explaining this approach. There are no large scale studies, so any protocol should be customized to the individual.
