What constitutes healing of ME/CFS/FMS?

[Freddd]

Hi Valentijn- Dr. Ben lynch, who has a bachelor of science degree in Cell and Molecular Biology and a doctorate in naturopathic medicine. Has been researching MTHFR variations, there effect on people and treating patients with MTHFR variations for years, and researches almost daily.

He says that the science does not support 1298 as a problem, but his personal experience has been just the opposite. He has seen and treated many people with the 1298 variant that are profoundly ill.

I believe this is a case where science hasn't caught up to reality and what is happening in real life, ie: people having the 1298 mutation, being profoundly ill from under-methylation, being treated for under-methylation and returning to good health. Dr. Ben lynch says he see's this "all the time" in his practice, people being very ill with the 1298 variant and returning to good health once they are treated for under-methylation.

When I add my own personal health breakthrough treating methylation, I am more convinced than ever of how methylation problems can absolutely devastate ones life. I am not here to try to change your mind, I just have a different view of the 1298 variant and the problems it can cause. All the best Jim.........

Hi Jim,


When I add my own personal health breakthrough treating methylation, I am more convinced than ever of how methylation problems can absolutely devastate ones life.

You can say that again. The methylation breakdown via insufficient folate one way or another then leads to methyltrap and partial ATP block.(mito dysfunction). The deadlock quartet breakdown can be triggered by any number of causes. It can take decades for these things to break down and do damage.

Here is a folate problem to contemplate. Research speaks of unconverted folic (and folinic) acid can accumulate and it is suggested that this can block the needed l-methylfolate. For decades it has been known that there is a physiological maximum of conversion each day, 800-1000 mcg for about 50% of people, 1 to < 800 for 30% and for 20% about zero conversion. So there are at least 3 different speed ranges at which unconverted folic acid accumulates. Further the 400mcg suggested MDA had nothing to do with what people actually need but rather to protect people from something that could fix the blood results while allowing the neurology to be damaged.

This suggests that anybody might be affected by folic acid problems but some would have to take a lot more than others to cause a problem. Then there are a host of other ways to get to folate problems. I'm sure it isn't as simple as one or two gene variants.

The scientific community has never done that which seems obvious, map nutrient response pattern of these nutrients in people recovering from these deficiency diseases The closest they came was terminating people from B12 studies if they got hypokalemia instead of correcting that hypokalemia and seeing what happened next. There is a disgraceful lack of basic research on the active b12s and folate and what they need to support healing.

Of course the answers we need are not in the body of peer reviewed journals. If they were most of us wouldn't be sick (that includes me with SACD at least) because in most of us such diseases would have been prevented.

 

[ljimbo423]

Hi @Freddd -First I want to say thank you for blazing a trail for people like me to be inspired by and follow. Your story played a big part in me seriously delving into methylation. It has been a huge inspiration to me getting to where I am today in my health and I am very grateful.

It can take decades for these things to break down and do damage.

Yes it did me, I didn't bottom out with cfs/fm until I was about 47 years old and mostly bedridden. That's when I stopped eating sugar and junk food and that was enough of a change to reduce my FM symptoms and slowly come off morphine for the pain.

As far as folic acid goes, I completely avoid it. I think it can block folate receptors and cause problems.

The scientific community has never done that which seems obvious, map nutrient response pattern of these nutrients in people recovering from these deficiency diseases

I would love to see a study like that done and the results, I think that would be fascinating.

I knew I was very ill but, I had no Idea how broken down and unhealed my body was until I started making significant progress with treating methylation! Anyway, thanks for all the time and effort you have put in here. I can tell you without a doubt, it has not gone unheard or unappreciated. All the best..... Jim

 

[whodathunkit]

That's nice, but there's a reason that science values published research over what some guy thinks. As human beings we tend to perceive things in a manner which isn't always objective. Using the scientific method, and controls, and other basic principles means that we can be sure that what we think we're seeing is really what's in front of us.

That's nice, too, but worth noting is one reason why completely objectively science based medical treatments for complex diseases (note the qualifier complex rather than straightforward problems like infections, and we're even losing the battle with bacteria these days) are frequently unsuccessful is because they overlook the human factor and disregard what people perceive about their own bodies and illnesses. Which is interesting, because most "objective" studies, esp. drug trials, rely more or less heavily on self-reported symptoms when collecting data.

I have personally encountered this appalling attitude in medical professionals before, and it's extremely annoying. I even had one endocrinologist tell me I needed to be quiet and listen to him because my symptoms didn't mean anything over my lab values and that I was being irrational (i.e., it was all in my head). Needless to say, I left his office after a few choice words, and never went back.

Personally, after my own lack of success with the "objective" science-based treatments that "objective" medical professionals foisted upon me, and then having all the success I have had using alternative methods that are "unproven by objective methods" (i.e., mainstream doesn't like, says is poison, or just doesn't work), I'll take subjective until objective starts getting a little more right.

That just being my subjective opinion, of course.

 

[SeaShell]

Did you have tests to identify this need? If not, how did you figure it out?

Hi MeSci,
No, I haven't done any tests in relation to methylation. I cannot afford doctors and tests so I rely on myself. I am happy to share with you how I am working through my needs and protocol...... if you are interested.

 

[sregan]

Two maximal cardio pulmonary exercise tests, performed 24 hours apart. Healthy and sedentary controls, as well as those with other diseases who have been tested in this manner, do slightly better on day 2 than day 1. ME patients do significantly worse on day 2..

That still doesn't identify a causative agent. Remember a couple of years ago when they thought the XMRV was the cause. If it was then removing the XMRV and being able to test for that would indicate a cure. I want that smoking gun. Maybe it's even a combination of things who knows. I have bounced around from Mercury, to Lyme, to CPN, psychological. Lyme probably comes the closest to those who can identify a causative agent and eradicate it for those that recover going that route.

 

[dannybex]

It's my understanding that it usually takes genetics AND lifestyle (epigenetics) to causes symptoms. So if someone leads a very healthy low stress life they are much less likely to become ill. Lifestyle certainly played a big role in me getting ill, but I don't believe it was the only cause.

Epigenetics is the key. These aren't genetic defects (at least that's my limited understanding) but polymorphisms that can be switched on and off -- by stressors, which can include regular stress, but also chemical, viral, bacterial, environmental and other types of insults. Although very complicated and easier said than done, improving methylation should help in varying degrees to address these 'insults'.

 

[dannybex]

That still doesn't identify a causative agent. Remember a couple of years ago when they thought the XMRV was the cause. If it was then removing the XMRV and being able to test for that would indicate a cure. I want that smoking gun. Maybe it's even a combination of things who knows. I have bounced around from Mercury, to Lyme, to CPN, psychological. Lyme probably comes the closest to those who can identify a causative agent and eradicate it for those that recover going that route.

I think it's likely to be many 'causitive agents'. Or else it wouldn't be so complicated, and we'd have more answers than we have now. Also, the people who have recovered (and yes, they're out there), needed to treat multiple things, and change their "lifestyle", in order to do so...