Supplements do not have any real effect on symptoms

[Valentijn]

'Bottom line for me as a pragmatist, with the ball of string getting shorter, if this sort of 'synergy protocol' gets the job done today then why choose the purity path and suffer for uncertain better health in the future, when I have experienced a downward functional health progression, beginning ~30 years ago - after a vacation at Lake Tahoe?

The first problem is that this sort of "synergy protocol" does not get the job done in ME/CFS patients, today or any other day. The trial showed that it was a failure, despite Cort's bizarrely optimistic spin in describing it.

The second problem is that the payback for using stimulants isn't something mild or something which might slowly accrue after several years. It comes in the form of a PEM crash a day or two later. It's simply not a sustainable option for most ME/CFS patients, though some may still choose to use such a method for infrequent events where they want a bit more pep, and are willing to pay the consequences afterward.

 

[Stretched]

If you're going to be a critic how about some legitimizing?

You quoted me and categorically denigrated my personal success in using a remotely similar variation of the published ‘Synergy Trials’, apparently without a deeper understanding and awareness of other supporting facts.

Rather than debating the real issues and timing or further relating my progresses I offer the following published authoritative information to correct your otherwise obtuse assumptions:

1. Regarding your opinion that the ’Trials’ were a failure (though I was in no way proselytyzing that specific protocol) please refer to the following excerpts from the reporting of an authoritative source which does NOT reach your ‘failure’ conclusion(s):
(http://solvecfs.org/preliminary-results-from-synergy-trial-released/)

Introduction to Synergy Trials, etc… .

Per-Protocol Analysis: The Per-Protocol analysis included all study subjects who completed the 12-week study and were at least 75 percent compliant with taking the study treatment:
• The patients in the KPAX 002 Treatment Group experienced an average 22-point decline in their CIS total symptoms score.
• The patients in the Placebo Group experienced an average 13-point decline in their CIS total symptoms score.
The company says that, although the KPAX 002 group experienced almost twice the improvement as the patients taking placebo, the difference between the two groups did not achieve statistical significance, primarily due to the relatively small sample size—87—of the Per-Protocol population.
Intent-to-Treat Analysis (ITT): The ITT analysis included all study subjects who were randomized, took at least one dose of the treatment, and completed at least one post-baseline evaluation. This group included both study dropouts and non-compliant patients and is a much more rigorous analysis:
• The patients in the KPAX 002 Treatment Group experienced an average 17-point decline in their CIS total symptoms score.
• The patients in the Placebo Group experienced an average 13-point decline in their CIS total symptoms score.
The company says that due to the large improvement seen in the placebo group, the difference between the two groups did not achieve statistical significance.

Etc.

2. As to why you and some followers likely find it gratifying to indulge in such officious and omniscient statements relative to the above (and in others of your some 8,500 posted opinions), consider another authoritative report, excerpted right here from today’s post on phoenixrising.me, i.e. today being Mon, Aug 3, 2015, :
Discussion in 'General ME/CFS Discussion' started by deleder2k, Today at 11:19 AM.
This was published in the biggest newspaper in Norway today by the therapist and former journalist Live Landmark. She has been "educating" and "curing" patients with Lightning Process for years. She was recovered from ME herself by doing the "process" herself.

Headline: the ME community can harm patients
Published in VG 2015.08.03 (Norway’s largest newspaper)
Original headline: Research Based ME debate


…Unfortunate polarization

ME-society prevailing view is that ME is primarily a "physical illness". Members spreads information that matches their understanding of reality and criticizes research that do not.


One advantage of internet forums is the feeling of being united. The challenge is that it reinforces a group identity, where the consequence can be a devaluation of "the other side". This means that those who participate in the ME community can come to look at those who have a different view as real "opponents". This forms the basis for an unfortunate polarization, affecting researchers, clinicians and patients.


Your playing the role of such a critic reminds one of the opening lines of Theodore Roosevelt’s great speeches. I suggest you give it a look.

THE MAN IN THE ARENA
Excerpt from the speech "Citizenship In A Republic"
delivered at the Sorbonne, in Paris, France on 23 April, 1910
download PDF of complete speech:
http://www.theodore-roosevelt.com/images/research/speeches/maninthearena.pdf

 

[Valentijn]

You quoted me and categorically denigrated my personal success in using a remotely similar variation of the published ‘Synergy Trials’, apparently without a deeper understanding and awareness of other supporting facts.

I didn't say a damned thing about your personal experience. I pointed out that the trial showed there was no statistically significant improvement in CFS patients in the trial. I was responding to your response to Leokitten's comments about the trial - and the trial showed that the protocol was a failure.

Since you're still trying to say that the trial somehow supports such a protocol, obviously both of our comments in that regard were topical. The problem with interpreting it to mean that the patients improved a bit more than placebos is that those numbers are not certain things. They are mathematically correct, but they also represent approximation and uncertainty, just like in any trial.

And like in any trial, there is a chance that those numbers do not reflect reality. The p-value is used to reflect this, by creating a threshold for statistical likelihood. A typical p-value would be about 0.01, or a 1% chance that the effect was due to random chance or other non-treatment factors. The more sloppy one widely used in psych research is a p-value of 0.05, or a 5% chance that the results are wrong. A few brave souls have even ventured to use a p-value of 0.10, though I would imagine they have trouble obtaining jobs or research grants afterward.

But even when results barely achieve those lower thresholds, the effect size tends to be quite small unless the results go considerably beyond those thresholds. So even if we were to give the Synergy trial a huge benefit of the doubt, and assume non-significance was significant, the effect size would still be quite unimpressive. As I've said before, the very best that can be said about this trial is that maybe a bigger trial will provide a more definitive answer. But the answer for now is still that the protocol failed.

 

[alkt]

@Kati I very much appreciate what you wrote, but I honestly do think people are being judgmental in their posts. They are being very negative in their choice of words and saying that I have a lack of understanding, when in reality they are failing to understand that everyone's situation is different, everyone's illness is different, that what happened to them might not happen to others, and that some people's life situation mean that certain choices could actually be far worse.

People with milder ME/CFS are really underrepresented on PR and it's dominated by people with more severe forms that didn't go on aggressive treatment early in their illness when they were still working. So they really don't know what it is like for people like me.

at many times it is possible to see the exact same article and come away interpreting the article differently depending on our altered perspective. perspectives being subject to moods and our present cognative levels.which for many can be very up and down in the amount of time it takes to read and also formulate a reply. in my case i can be quite abrupt but with no intention of being rude.

 

[evatious]

This is something I’ve been addressing in recent weeks as my health fluctuates.

For me, it’s critical to keep a health diary (or extensive notes) about my supplements, nutrition and symptoms.

I’m tracking *everything* that goes in my mouth and whether I have a specific symptom (either physical or neurological/psychological.)

I have a theory that many of my problems are largely caused by (or perhaps just exacerbated by) dietary malnutrition. I’m less convinced about genetically controlled deficiencies - although my primary disease (Graves’) is certainly playing a huge role.

The one thing I do know I’m deficient in is vitamin D. My holistic GP suggested testing for this but all my other doctors and specialists just said “just take some Vit D, it’s cheaper than the test.” I did the test anyway because I wanted a definitive answer and; lo and behold, low Vit D, even after supplementing.

I’m still skeptical about the science (and methodologies) behind genetic nutrition, even though I’ve done genetic testing and am open to trying supplements based on this. My concern lies with the people profiting from it, promoting it as a cure-all. I find that to be particularly non-persuasive. Often my perception of it is that it’s simply yet another [exploitative, mostly woo] ‘holistic’ treatment. Desperate people often fall for the ‘holistic/complimentary/functional’ approach when looking for answers, because something that is ‘holistic/complimentary/functional’ can only be a good thing. And not snake oil, which it sometimes [often] is.

I think the initial improvement in symptoms is likely just placebo effect (which is an actual slight improvement) but then things settle back down with no actual consistent change. One of my genes showed that I might be more susceptible to placebo effect though, but I’ll take what I can get.

 

[Kathevans]

I've been looking into vitamin D lately as my levels test below range. I came across some information about the need for Vit K2 in order for D to be properly absorbed: http://articles.mercola.com/sites/articles/archive/2012/12/16/vitamin-k2.aspx

I'm doing both, but haven't been retested so the jury is out!

There was some other more interesting information about all sorts of health problems and vitamin d in a series of YouTube videos posted somewhere on PR. They're of a neurologist who initially has no interest in vitamins and is all about CPAP machines for sleep apnea. If you take the time to watch all 5--each about 12-15 minutes--you'll see her come around to another view entirely, one that discusses not only sleep, but all sorts of medical problems... The first You Tube video:
Dr. Stasha Gominak Discusses Sleep and Vitamin D Pt. 1 ...
▶ 15:14
www.youtube.com/watch?v=h7cbBB1c0IM

Good luck...

 

[Stretched]

The following link leads to a published report in a credible journal re K-PAX Pharmaceutical's supplement contribution to the CFS Synergy Trials:

Int J Clin Exp Med 2015;8(7):11064-11074 www.ijcem.com /ISSN:1940-5901/IJCEM0010510

Irrespective of interpretations of the trial results (acknowledged, debatable), note the good descrptions and information on the supplements used [for the most part addressing mitochondrial (dys)function), and Drs. Myhill, et al].

My point: Relative to the title of this thread serious people do take supplements seriously.

 

[mtnbibliophile]

Replying to the very first post in this thread: One reason supplements may be helpful to some people with ME but not to others is the existence of allergic reactions to some of the contents in the pills (no idea whether it's the active factor or other contents that I am reacting to). I have just discovered I am allergic to myUbiquinol (CoQ10), DHEA, NADH and L-Carnitine, all of them highly recommended for alleviation of symptoms of ME. Unfortunately, they make me feel worse, not better. I hope future tests of the efficacy of supplements take this possibility into account.

 

[wastwater]

I have very low vitamin D levels and can't decide if my body keeps it low as a protective measure,probably something to do with keeping calcium low.
I did boost my vit D and think on the whole felt better so I plan to try boosting again

 

[halcyon]

I have very low vitamin D levels and can't decide if my body keeps it low as a protective measure,probably something to do with keeping calcium low.
I did boost my vit D and think on the whole felt better so I plan to try boosting again

KDM claims that this is due to overactivity of the enzyme that converts 25OH into 1,25OH.

 

[Stretched]

FPE, I have been upping my D-3 for the last 2-3 months and currently at 50k per
day (20k am, 30k,pm); simultaneously upping b-2, b-complex, k-2 and Mag.
(and drinking more water, amap w/in limits, but not huge volumes).

So far, no extra toes nor otherwise color changes anywhere. Anecdotally, I'm down 1-click on the severity level (e.g. from 8/10, worst, to ~7). To date, no negative side effects discerned, re research readings.

I still plan an additional up 20k (for weight correlation). If all is still intact after a few more weeks of upping dose I'll look towards the North Star and decide how to proceed - or give up the ghost.

If this regimen actually helps I'm going squirrel hunting at Lake Tahoe!

 

[taniaaust1]

Hello All

I read at this site often the last two years. I have suffered for 20 years with this illness --came down with a horrible viral flu in November 1994 and was still in bed all day 8 months later. My HMO finally threw his hands up in the air and reffered me to a psychiatrist. Lost everything. I have been homeless. Now I support myself by working two weekends a month as a home health aid --praise God-- because being in a homeless shelter with CFS/ME is hard to endure.

Have embarked on so many supplement protocols in 20 years! Nothing made a difference that I could feel. Some things, like Methylation and SamE made ME feel worse, and unbalanced. SamE makes me angry --weird but true-- I temporarily got fired from my job while taking it. Had to go crawling back and apologize. Most things, highly recommended things like chlorella, ingestible aloe vera, "super foods", did nothing that made a difference that I could feel or measure.

Recently, however, something has made a huge difference to me: It is simply taking lots and lots of B-12 sublinguals every day. I am talking about the very common little 500 mcg sublinguals (yes, cyanocobalamin) you can get anywhere inexpensively. I started taking them every night about four months ago because they calmed me and helped me get a good night's sleep. I started noticing I was able to work longer hours and even do some weightlifting. Usually weightlifting puts me into a crash for one to four days, but I started being able to (carefully) complete an every-other-day weightlifting routine, working one body part per session. (I also take several grams of Vitamin C, Omega 3, and glucosamine for their anti-inflammatory effects. I also take Vitamin E with Selenium.) My calendar for April 2015 shows that I worked out 18 out of 31 days --for me this is absolutely incredible.

I did not fully understand at the time that it was the B-12 helping me. I just thought it was some kind of miracle --some wonderful, beautiful upswing. But when I discontinued the B-12 (because I did not want the added Sucralose in my diet) I found myself in the worst relapse I have ever experienced in 20 years of having CFS/ME: bed-bound for over a week, and unable to work all last month (June 2015). I added the b-12 back in small doses, and started to feel a little better. Last week, when I ran out of B-12 for about three days I found myself feeling terrible. So this time the light bulb finally clicked on and I went to Wal-Mart and got a cart-load of these cheap B-12 sublinguals. It is working. For me, it really seems like the more I take the better I feel. So now I probably ingest about 60 to 70 of these little micro-lozenges per day. Yea this is probably unwise --please do not take this as a recommendation-- but for me, today, it seems to be the thing that is making my life livable again. By livable I mean I can go out and earn a decent living.

Two days ago, after a lot of reading here at PR, I found some Jarrow Methyl B-12 at Pharmica and started using that, as well. Another step up on the upswing. I rode my bike almost 15 miles yesterday (slow pace).

I don't know why this is working. I don't know if it will help anyone else. I don't know if it is the cyanocobalamin or the methyl or some kind of combination. All I know is that two weeks ago I could not remain out of bed for very long. Now I am getting ready to go out and ride my bike through beautiful Napa Valley.

This website has great information --thanks so much for all the good reading

Most of us, I think it was around 75% of us when I randomly studied and did my own research on those here at PR are helped by one of the vitamin Bs or a form of one of the vitamin Bs. 75% That's a surprising high number when we are so different with things with this. (the thing is too that even brands can be different with this). (note.. of cause with some the improvement was only small but I think with this illness any improvement is deemed important seeing its so very hard to achieve).

If nothing else, it appears experiementing with Bs is one thing which should be trialed, nothing else when I studied different ME/CFS people and what supplements helped them.. lived anywhere up to the percent which were helped some by B.

 

[Battery Muncher]

Most of us, I think it was around 75% of us when I randomly studied and did my own research on those here at PR are helped by one of the vitamin Bs or a form of one of the vitamin Bs. 75% That's a surprising high number when we are so different with things with this. (the thing is too that even brands can be different with this). (note.. of cause with some the improvement was only small but I think with this illness any improvement is deemed important seeing its so very hard to achieve).

If nothing else, it appears experiementing with Bs is one thing which should be trialed, nothing else when I studied different ME/CFS people and what supplements helped them.. lived anywhere up to the percent which were helped some by B.

Interesting!

The last time I trialed B vits, I didn't get much of an effect. What sort of dosages are commonly used, and is there any other vitamins you need to take alongside it?

 

[taniaaust1]

Interesting!

The last time I trialed B vits, I didn't get much of an effect. What sort of dosages are commonly used, and is there any other vitamins you need to take alongside it?

I just compared it by itself.. most people were taking lots of other supplements too but attributed improvement to the B. Brands, amounts and ways of taking really varied from IVs, under tongue to just taking it normally by mouth.

 

[u&iraok]

Here is another thought on supplements, one which I have been playing with for years. In fact I started thinking about this kind of thing in 1993, another story I have discussed in several threads.

Our illness can be thought of as a stable biochemical state, whatever it actually is or may be driving it. What supplements can do, if its the right one at the right time and the right dosage, is kick that stable state. It might kick it hard enough to change the state, and hence change the symptoms (though not always for the better).

If the stability of the state comes from its own internal reinforcement you might nudge it into a new permanent stable state. However if there is an external driving force then it will slowly drift back into something resembling the old state. The supplement "stopped working". Whereas, under this model, what really happened is the body pushed back. The supplement is still working but since it was only for a peripheral issue its not enough for permanent change.

This kind of thing is covered by chaos and systems theory.

I've been wondering about this for years. I wouldn't be surprised if it could be explained by physics.

I look at it as our body wanting to go back to that state---either a new state that it mistakenly thinks is stable, normal, or a state that it doesn't think is normal but some of it's processes are so messed up that it's upside-down world in there.

The fact that we can't begin to understand what's wrong (and my miniscule knowledge of physics) makes me believe we know so little and any other belief is the arrogance of little children.

For me, maybe because I'm mild and I've been treating my ME/CFS since I got it in January 2005 because I recognized what it was from reading about it in the 1980's, I see it more that I kick the stable state with supplements or protocols and it works for a while then goes back to a teeny weeny slight bit better than the old stable state so the new stable state is ever so slightly better.

I take stuff, stop the stuff, take it, stop it etc so the body doesn't 'get used' to it, or whatever the issue is, and I've managed to move up a bit on the wellness scale. I wonder if I lost the window for healing when I went back to exercising after I was say, 80% better. I'm working towards that again but it's very slow if I can get there at all.

I would really like to know why the supplements seem to work but then quit. It's strange. But then, like I said, I do have teensy improvements so I continue to plug away.

Here are some things I've accomplished: less aches especially in neck, chronic headache gone except for the cotton-in-head feeling and an almost-dizziness, able to read a little better, think and concentrate a little better, anxiety mostly gone, wired-and-tired not so often, sleep better, digestion almost normal, easier to stand up and can walk more, noise sensitivity better(can actually block it out sometimes, wow, miraculous), much fewer colds and flu, also don't feel 'virusy' like I used to, less in quantity and intensity are my thyroid/endocrine crashes.

HOWEVER, I am resting more and sleeping better (chicken-and-egg, which came first: feeling better so better sleep, or sleeping better so feeling better?), and under less stress so who knows how many improvements can be chalked up to that? Also I felt better after menopause and those deadly hormone fluctuations are gone (thank thank thank goodness!!)

Though I do see specific improvements to specific supplements and protocols so it can't be all from rest and stress reduction.

 

[u&iraok]

Here is another thought on supplements, one which I have been playing with for years. In fact I started thinking about this kind of thing in 1993, another story I have discussed in several threads.
Our illness can be thought of as a stable biochemical state, whatever it actually is or may be driving it. What supplements can do, if its the right one at the right time and the right dosage, is kick that stable state. It might kick it hard enough to change the state, and hence change the symptoms (though not always for the better).
If the stability of the state comes from its own internal reinforcement you might nudge it into a new permanent stable state. However if there is an external driving force then it will slowly drift back into something resembling the old state. The supplement "stopped working". Whereas, under this model, what really happened is the body pushed back. The supplement is still working but since it was only for a peripheral issue its not enough for permanent change.
This kind of thing is covered by chaos and systems theory.

Maybe this is what it is:

When the necessary nutrients are in the body in sufficient quantity and distribution, generalized healing turns on. When any of these are insufficient, generalized healing turns off and goes into a starvation mode of conserving resources and barely getting by. This starvation mode is what has been researched for the past 60 years. [/QUOTE}

 

[flitza]

I've been wondering about this for years. I wouldn't be surprised if it could be explained by physics.

I look at it as our body wanting to go back to that state---either a new state that it mistakenly thinks is stable, normal, or a state that it doesn't think is normal but some of it's processes are so messed up that it's upside-down world in there.

The fact that we can't begin to understand what's wrong (and my miniscule knowledge of physics) makes me believe we know so little and any other belief is the arrogance of little children.

For me, maybe because I'm mild and I've been treating my ME/CFS since I got it in January 2005 because I recognized what it was from reading about it in the 1980's, I see it more that I kick the stable state with supplements or protocols and it works for a while then goes back to a teeny weeny slight bit better than the old stable state so the new stable state is ever so slightly better.

I take stuff, stop the stuff, take it, stop it etc so the body doesn't 'get used' to it, or whatever the issue is, and I've managed to move up a bit on the wellness scale. I wonder if I lost the window for healing when I went back to exercising after I was say, 80% better. I'm working towards that again but it's very slow if I can get there at all.

I would really like to know why the supplements seem to work but then quit. It's strange. But then, like I said, I do have teensy improvements so I continue to plug away.

Here are some things I've accomplished: less aches especially in neck, chronic headache gone except for the cotton-in-head feeling and an almost-dizziness, able to read a little better, think and concentrate a little better, anxiety mostly gone, wired-and-tired not so often, sleep better, digestion almost normal, easier to stand up and can walk more, noise sensitivity better(can actually block it out sometimes, wow, miraculous), much fewer colds and flu, also don't feel 'virusy' like I used to, less in quantity and intensity are my thyroid/endocrine crashes.

HOWEVER, I am resting more and sleeping better (chicken-and-egg, which came first: feeling better so better sleep, or sleeping better so feeling better?), and under less stress so who knows how many improvements can be chalked up to that? Also I felt better after menopause and those deadly hormone fluctuations are gone (thank thank thank goodness!!)

Though I do see specific improvements to specific supplements and protocols so it can't be all from rest and stress reduction.

Excellent idea! A lot of people here have mentioned the need to take a break from some of the things they take. That might support your idea.