Adster said:
@
Freddd
Here's a different take on it:
If you are practising medicine in
any capacity, which you appear to be, even if not-for-profit, I think it's really important to give realistic expectations of a treatment. In my opinion,if you were to say, for example, "CFS/ME/FMS can be healed or cured" using your protocol, it could create unrealistic expectations, given the typical understanding of those terms.
To say, for example, "In some cases, this protocol can significantly reduce symptoms, or possibly even achieve remission, in people with a CFS/ME/FMS diagnosis" would be more accurate. In my opinion. The ability of sick people to make fully informed treatment decisions is very, very important. Choice of words plays a big part in this.
I agree that semantics are extremely important. It's really important to not create unrealistic expectations. But IMO it's even more important to keep hope alive, or maybe create hope of new possibilities where before hope did not exist.. Striking a balance between the two is frequently very hard.
For example, saying "CFS/ME/FMS
can be cured using XXX protocol" is NOT the same thing as saying "You
will cure your CFS/ME/FMS if you use XXX protocol". I think even sick people are capable of understanding the difference between "can" and "will".
At any rate, "can"-type language is used in medicine all the time. My mother was told that she
could (can) cure her breast cancer using lumpectomy and radiation. She was not told radiation/lumpectomy
would (will) cure her breast cancer, but that her cancer was something that
can be cured if the right combination of therapies was used. She was also told that some tweaking of the regimen might have to occur, based on the results of her initial therapies.
My father was told the same thing when he was diagnosed with lung cancer, although his prognosis was much poorer. But was told his cancer could be cured if everything fell into place correctly. Far from creating unrealistic expectations, this language gave him hope even in the face of almost the worst diagnosis anyone can get.
I see our work with methylation as much the same type of thing as is practiced in cancer medicine. It's personalized, and a variety of therapies may be used depending on the person and the person's condition.
From my perspective, one of the biggest roadblocks we face here in being on the cutting edge of type of "personalized health" is that we don't have much authority to appeal to. Doctors are frequently wrong about many things, but just having them as authority to appeal to is comforting to many people. Not having that authority (like when being treated for cancer by an oncologist) can be a big psychological barrier to progress when the path to wellness is not a straight upward trajectory. Which it's not around here.
The other biggest roadblock I see is that most people inexperienced in alternative health starting doing something like methylation supps, and they expect taking a few supplements to be like taking antibiotics for infection: one smooth course of pills for a projected amount of time and then everything is done. All better! But health in general and alternative health in particular usually doesn't work like that. There is a fundamental misunderstanding of how the course of healing usually proceeds (it's frequently worse than the course to chronic illness). IMHO it's not language that creates unrealistic expectations so much as the
lack of experience and/or lack of understanding.
Speaking for myself, I've had what I consider to be a long, hard battle with my health. Maybe not as hard as some people have had, but it's been bad enough. I've suffered at times from fatigue so severe I could barely drag myself out of bed to use the bathroom. I've suffered from chronic anemia for years and to this day lose over a pint of blood in 24 hours every single month due to female problems. That's always a lot of fun and creates a special type of irritable exhaustion. I've had brain fog so bad i couldn't think. For years I had monthly cramps so bad I would scream and vomit. At times I've lost hope in ever being well, to the point where I've been so suicidal I've actually had a gun in my mouth (more than once). A timely kiss on the leg by one of my dogs saved me from that once. A sudden glimmer of hope filtering into my mind from out of nowhere saved me another time.
Which is my larger point here: hearing that their problems
can be cured gives people hope. IMHO hope is more important than anything else in this process. It can get smashed by unrealistic expectations but still come back if the right language is used to promote it.
Imparting understanding that the course of recovering health is not smooth is the second most important thing in this process.
When I hit this board I had given up hope that my energy problems would ever be cured. What I actually came here for was to maybe find a way to help me regrow some hair that I've lost. But energy and cognitive function? Meh. Pretty much given up on that. I had resigned myself to much reduced functioning for whatever years I have left. Also had resigned myself to the chronic galloping munchies, driving me to eat more than I needed and never being able to lose any weight.
But instead of hair, what I found here was @
Freddd, imparting HOPE that with a lot of patience, hard work, and a willingness to experiment, I might actually *cure* my most pressing problems. I could lose weight! I could regain some energy! His experience was a total inspiration to me. Then as I read more and saw some other people here were having the same results, hope grew. I had my own encouraging results starting out, and hope is now stronger than ever.
It hasn't been easy or a straight upward trajectory for me. I got really sick when I first started the protocol...I was out of work for a week. I've had quite a variety of symptoms, from insomnia to extreme sleepiness, from being very calm to being hyper and hyper-irritable, and my energy still fluctuates up and down, sometimes to a disheartening degree. I still get brainfog...just recovering from a week where I haven't been able to concentrate on anything that requires more than stream of consciousness (like posting here
).
But I now have hope that, with my understanding of how the course of healing goes, I can one day lick these problems. I may never actually do it. I may never achieve my goal of feeling like I'm 25 again. My expectations may be unrealistic. But does that mean I shouldn't try? Does that mean I shouldn't hope for better than I've got now, even though what I've got now is much better than what I had four months ago?
I don't think it does.
So while I believe we should all strive not to create unrealistic expectations, I also believe it's even more important not to squelch discussion of the possibilities. What CAN happen with these supplements, if we persist and don't quit.
Freddd is a good example of what CAN happen. Not necessarily what WILL happen in every case, but what CAN. Personally, that gives me hope.
Just my $0.02.
