Through clinical observation. Most of the treatments I've had have been prescribed off-label. In fact, most drugs typically prescribed by doctors are prescribed off-label, because it costs too much for the drug companies to do RCTs for every possible indication for their drugs.
It is prudent to read case studies, results of clinical trials, etc. But at best, ANYTHING is just a guess by the clinician.
We are not discussing marketing a new drug for disease X and getting an FDA approval. There are dozens of treatments out there doctors prescribe to patients with ME/CFS, based on their clinical experience, and the copious literature already available on a given drug, a given condition, and interactions with other factors.
I don't know how old you are, but I simply don't have 20 or 30 years to wait around for perfect RCTs to be done on all the genetic and environmental variables in subsets of patients with ME/CFS.
It just seems to me that this is a false way to go about this.
The 21st Century Medicine White Paper I provided (did you happen to read it??) points out the fallacies of RCTs and suggests a different way of finding solutions for patients. That is to take a careful inventory of all the symptoms, the health history, and to do testing to identify treatable problems that work toward "normalizing" the body.
This can be a far more successful approach than the "cookbook medicine" approach common to conventional medicine, where we look for what pill treats what disease. As I've pointed out, you can give someone the "correct" pill for a certain disease, but they can be damaged due to their basket of genetics and environmental factors that make them different than the widget patients that the clinical trial was done on for that drug. (Or maybe they match up with patients in the clinical trial group who had the bad side effects.)
I have 4 doctors who use a functional medicine approach, but also have training in conventional medicine. They take the time to understand my history, they sequenced my genome and are aware of some of the "gotchas" involved (like heriditary hemochromatosis, Factor II, COMT, CYP1B1), and most importantly, they are excellent at ordering and interpreting tests that we base our decisionmaking on. I provide ME/CFS research articles that relate and my doctors and I discuss the points pertinent to my labs, my symptoms, and my genetics. Then, they put together a coordinated and comprehensive treatment plan that has included these elements, with dosing based on the labs:
And that is exactly the same here. I have found that ICD codes G93.3 or R53.82 merit no treatment or tests. However, the other 16 ICD10 codes that apply are far more useful in getting everyone's attention applied to problem solving. If you read through the document with all of the ICD10 codes, you'll find many that apply to many of us with ME/CFS. The 2015 IOM/NAS document clearly stated this is no longer a diagnosis of exclusion and that all comorbidities should be treated.
And, while we wait for the scientists to tease out a perfect solution, this is the only path I know of to get better, and so far, though it's been tedious and expensive, it has been working for me, and I know of other ME/CFS patients who are quietly approaching this the same way with their doctors with a similar slow but positive path to success.
Agreed. But I sure feel safer having people who have gone to years of medical school prescribing them vs. ordering bulk powders from large Asian countries and experimenting on my own at home. I also make sure to keep my doctors apprised of what the others are suggesting, and actively solicit risks and concerns, and work to mitigate them. I have also been able to talk directly to researchers at conferences, which has offered helpful insights. And, though I have excellent help, no one on earth knows all there is to know about this disease, and both doctors and clinicians have freely admitted that they don't have all the answers and we are on the bleeding edge of science. So, there will be some pitfalls, and I find that working with a team gives me more treatment options and more knowledge and more hope.
It is prudent to read case studies, results of clinical trials, etc. But at best, ANYTHING is just a guess by the clinician.
We are not discussing marketing a new drug for disease X and getting an FDA approval. There are dozens of treatments out there doctors prescribe to patients with ME/CFS, based on their clinical experience, and the copious literature already available on a given drug, a given condition, and interactions with other factors.
I don't know how old you are, but I simply don't have 20 or 30 years to wait around for perfect RCTs to be done on all the genetic and environmental variables in subsets of patients with ME/CFS.
It just seems to me that this is a false way to go about this.
The 21st Century Medicine White Paper I provided (did you happen to read it??) points out the fallacies of RCTs and suggests a different way of finding solutions for patients. That is to take a careful inventory of all the symptoms, the health history, and to do testing to identify treatable problems that work toward "normalizing" the body.
This can be a far more successful approach than the "cookbook medicine" approach common to conventional medicine, where we look for what pill treats what disease. As I've pointed out, you can give someone the "correct" pill for a certain disease, but they can be damaged due to their basket of genetics and environmental factors that make them different than the widget patients that the clinical trial was done on for that drug. (Or maybe they match up with patients in the clinical trial group who had the bad side effects.)
I have 4 doctors who use a functional medicine approach, but also have training in conventional medicine. They take the time to understand my history, they sequenced my genome and are aware of some of the "gotchas" involved (like heriditary hemochromatosis, Factor II, COMT, CYP1B1), and most importantly, they are excellent at ordering and interpreting tests that we base our decisionmaking on. I provide ME/CFS research articles that relate and my doctors and I discuss the points pertinent to my labs, my symptoms, and my genetics. Then, they put together a coordinated and comprehensive treatment plan that has included these elements, with dosing based on the labs:
- Immune system - IVIG, antivirals, antibiotics, LDN, zinc, vitamins A, C, and D, HBOT
- Dysautonomia - beta blockers, cholinergic substances (Huperzine A, neostigmine)
- Mast cells - cromolyn, ketotifen, ranitidine, quercetin, diphenhydramine, ondansetron
- Hormones - T3, T4, hydrocortisone, pregnenolone, DHEA, testosterone, estrogen, progesterone
- Blood - phlebotomies, bromelain
- Mitochondria - mitochondrial cocktail, phospholipids, oxidative and nitrosative stress reduction, BCAAs, FAD, NAD+, methylation support
- Metabolism - amino acids, B5, trace minerals
- Gut - probiotics, prebiotics, and mast cell meds above.
And that is exactly the same here. I have found that ICD codes G93.3 or R53.82 merit no treatment or tests. However, the other 16 ICD10 codes that apply are far more useful in getting everyone's attention applied to problem solving. If you read through the document with all of the ICD10 codes, you'll find many that apply to many of us with ME/CFS. The 2015 IOM/NAS document clearly stated this is no longer a diagnosis of exclusion and that all comorbidities should be treated.
And, while we wait for the scientists to tease out a perfect solution, this is the only path I know of to get better, and so far, though it's been tedious and expensive, it has been working for me, and I know of other ME/CFS patients who are quietly approaching this the same way with their doctors with a similar slow but positive path to success.
Agreed. But I sure feel safer having people who have gone to years of medical school prescribing them vs. ordering bulk powders from large Asian countries and experimenting on my own at home. I also make sure to keep my doctors apprised of what the others are suggesting, and actively solicit risks and concerns, and work to mitigate them. I have also been able to talk directly to researchers at conferences, which has offered helpful insights. And, though I have excellent help, no one on earth knows all there is to know about this disease, and both doctors and clinicians have freely admitted that they don't have all the answers and we are on the bleeding edge of science. So, there will be some pitfalls, and I find that working with a team gives me more treatment options and more knowledge and more hope.
