Apr 12, 2012
me+ME: A little more on my
I saw this morning that Tony Mach has been writing about my writing about the B12 protocol I use. To start with, here is the link:
I will quote some and make some remarks,
mostly to get things straight, and not because I disagree with Tony
Mach, though I suppose I do, on some things, as will be shown below.
Here is the start of the above linked post:
Maartensz is collecting some resources on the Vitamin B12 Methylation
Protocol for CFS.
Well, the last time I followed a protocol (cpnhelp's Vitamin D and N-Acetylcysteine NAC) I got worse – so I am a bit hesitant to try any "protocol" at the moment.
It is true I am collecting such resources, and
also true that I have collected rather a lot more than is on my site on
the moment: More will be there, in ME Resources, in
a short while, probably less than a week.
And I am grateful this is mentioned, because (1) I think it is likely to help some people with ME/CFS, and (2) I think the methylation block hypotheses for, and the proposed treatments of ME/CFS, are worth research by qualified researchers.
As to Tony Mach's hesitancy about following
any protocol: I can understand his skepticism, but the argument he
gives is merely personal - which is fine with me, since treatment
protocols for ME/CFS tend to cost money and tend to involve risks for
those following them.
But he also has reasons for feeling skeptical. First there is this:
And firstly, I need to understand WHAT and how much I should take under this protocol. There are so many B-vitamins (and related compounds) that it is a bit difficult to keep an overview on what exactly to take. There seems to be a lot of fine tuning involved and considering that I feel sometimes better and sometimes worse it is easy to fool oneself. And there seem to be different "schools of thought", which worries me a bit, that there a people "fine tuning" a protocol that does little or no good.
This is fair enough in principle. As it happens, I have been taking supplements since 1984 and have read since then quite a bit about taking supplements, and have meanwhile gathered a fair bit of knowledge about the various vitamins and minerals in supplements. Then again, if one is new to this, it probably seems like a lot of information to acquire, that also may be mostly fruitless for one.
In fact, the best way to proceed for oneself if one is interested in trying some
protocol involving supplements is (1) to read up on it as best as one
can (which for people with ME/CFS means leaving out a lot one can find
on the internet) and (2) when following it, to keep dayly statistics on
what one takes and how one feels. Without the first, one does not
really know what one is doing or why, and without the second one has no
good factual basis to gauge the effects of the treatment on oneself.
As to the "schools of thought" as
regards methylation protocols as treatments for ME/CFS:
There are two, one by dr. Rich van Konynenburg ("Rich") and one by Fred Davis ("Freddd"). These differ mostly about the role of gluthathione and about which form of B12 to use, but they agree on the main ingredients in a treatment protocol based on the hypothesis that there is a methylation block in people with ME/CFS: a form of B12 and a form of folate, and this in conjunction with some further supplements.
I think it needs real scientific research to
establish which protocol based on the methylation block works best, and it is quite possible either
works best for specific sub-groups and not for all people with
ME/CFS. Also, it may not cure but only alleviate, and that not in all
but only in some. I really do not know, but one of the good things about both the methylation block hypothesis and the
protocols associated with these is that the hypothesis and the
treatments can be tested scientifically in a fairly
straightforward way: All that is needed is funding. (*)
As to "people "fine tuning" a
protocol that does little or no good":
Also, I am in my 34th year of ME/CFS; I have a lot of experience with supplements, about which I have read a fait bit; and I cannot "fine tune" something that makes no difference to me. And what I found, empirically, is (1) that the protocol I wrote about helped me, especially since (2) the only reason I can find for feeling somewhat better and being able to do some more while using it is that I am using the supplements of a protocol, also because (3) I have some 28 years of experimenting with supplements that either did not help at all (the usual case) or did not help as much, as long, or as consistently as the protocol I am following now, and so (4) I do not think that it is "the placebo effect", in my case and in others I have read about, though I agree a good double-blinded test of the methylation block protocols would be very nice to have.
But yes: It is
it may be false or partial; one does take a personal risk of some kind
whenever one takes supplements or medicines of any kind (and indeed
also when refraining from doing so, as the case of Steve Jobs shows);
the protocol may not help one and costs money, of which I have very
little; or else the protocol may help one some but without really
curing anything; and also it would be nice to have better research and
more knowledge - but then I am nearly 62 years old and this works
better than anything I've tried the last 34 years, while it also has
the very considerable merits of being based, in the end, on biochemistry and of being relatively easily - apart from
funding - testable by
good scientific experimenting (unlike all psychiatric theories I read,
that are not even properly testable).
That is, if the methylation block theory to
account for ME/CFS is mistaken, as it well may be, in the existing
forms, or altogether or in part, then at least that can be established by good research,
that also is not difficult to
do - and if it is at least partially correct, that again can be established by good research,
that again is not difficult to
do, in principle: The problem is
Next, here is another problem or set of problems posed by Tony Mach:
The second thing is I want to understand WHY. I want to know the rationale behind it all, I want to understand the mechanisms, I want to understand the metabolism pathways, I want to see (at least) partial evidence, objective measurable values. As far as I know, the mechanisms behind the "methylation block" are purely speculative – the protocol may (or may not) help, for a few or some (or even most) of the ME/CFS patients, but I call quack BS on the putative mechanisms. Without a proper test that can distinguish ME/CFS patients without methylation blockage from ME/CFS patients with methylation blockage – and subsequential test whether the methylation protocol helps this subgroup! – I am a bit worried about this "one size fits all" approach.
I always want to understand why, so I agree
with that desire - but then dr.
Rich van Konynenburg and dr. Neil Nathan have provided rather a lot
in the way of "the rationale behind it all" and as explanations
of "mechanisms", "metabolism
partial evidence" and "objective
measurable values": That is in
fact why I wrote my
Dr. Van Konynenburg does provide a lot of what Tony Mach desires; he did do experiments with dr. Nathan; he does have a plausible biochemical theory; and he proposes a lot in the way of "the rationale behind it all" and as explanations of "mechanisms", "metabolism pathways", "partial evidence" and "objective measurable values" that is all many orders of magnitudes better science and better research than any I have read of psychiatrists on the subject or indeed by others.
Also, it is rather misleading - in my opinion
- to say that "the mechanisms behind the "methylation
block" are purely speculative":
Much of it, quite unlike all the bullshit I've read by psychiatrists about the evil influences of the internet on "the dysfunctional belief systems" of people with ME/CFS, is solid basic biochemistry, that makes sense as bio-chemistry. It may be false, but it is a plausible and testable hypothesis, again unlike all the psychiatric bullshit I read, that was all most implausible and apparently intentionally designed and formulated so as to be not properly testable.
Furthermore, saying "I call quack BS on the putative mechanisms" does not seem fair to me to dr. Van Konynenburg and dr. Nathan: It is neither quackery nor BS. They formulated a decent biomedical bio-chemical theory, that may be false and can be tested, and that has the great merit of being formulated in terms of bio-chemistry:
As to Mr. Mach's further worry that there is no "proper test that can distinguish ME/CFS patients without methylation blockage from ME/CFS patients with methylation blockage": In a perfect world, this would be nice to have, but then in a perfect world no one falls ill with ME/CFS (other than psychiatrists, clinical psychologists and purveyors of political or religious bullshit).
In fact, there is not even a proper test "that
can distinguish ME/CFS patients"
from patients with other diseases! Again, while it is true that I much
like to see the outcomes of good research on the methylation
blockage hypothesis, in the mean time I have almost always pain; I feel
almost always exhausted; I can do far less than healthy people; and I
can get no help that other people with other diseases get as a matter
of course - so if I find something that does help some, that is based on
what seems good science, and
that involves taking supplements with
very low risks of endangering me, I do not wait until I am 120,
in 2070, briefly before the secret ME-documents of the British
Government become unclassified, and almost everything will have been
meanwhile revealed about the real cause of and best treatment for
But yes: Two of my reasons to write about it on my site is to help others with ME/CFS and to stimulate funding for biomedical research into the hypothesis of methylation blockage being involved in ME/CFS and into the associated treatment protocols of Rich van Konynenburg and of Fred Davis.
And finally about the last quoted paragraph by Tony Mach: It does not really appear to me as a " "one size fits all" approach ". There are two different protocols, based on differences as to the role of gluthatione and as to which B12 to use in treatments, and the two proponents of the two protocols both insist that their protocols are experimental, need more research, are probably sub-optimal, and often seem to need some personal tweaking and experimenting depending on one's symptoms, health and dosages.
as to the last paragraph of Mr Mach (where "He"=me):
made a new version of his collection of ME/CFS resources, were he
tries to exclude pseudo-science (like XMRV), for which I applaud him.
Personally, as I consider all currently proposed
disease mechanisms for ME/CFS to be – regardless who proposed them
– as either
I am in the process of making a new version: There is a lot that I have
gathered over the last 2 1/2 years of reading about and around ME/CFS I
want to put online, but this is not an easy operation with my state of
health: It takes rather a lot of work, reading, organizing and
I do not regard the XMRV-hypothesis as pseudoscience:
If it did not involve fraud (with
5AZA), it seems like a very probably false but once rationally
tenable scientific hypothesis. I do not know what are the real facts,
other than that it is the fate of most scientific hypotheses to be
found wholly or partially mistaken in fact.
I do regard all psychiatric and psychological theorizing by the schools of Reeves, Wessely and Bleijenberg as pseudoscience, and I do consider each of these gentlemen a fraud, who abuses science, patients and taxpayers to further his own personal career with what he must know are lies and bullshit:
is impossible for someone to lie unless he thinks he knows the truth.
Producing bullshit requires no such conviction. A person who lies is
thereby responding to the truth, and he is to that extent respectful of
it. When an honest man speaks, he says only what he believes to be
true; and for the liar, it is correspondingly indispensable that he
considers his statements to be false. For the bullshitter, however, all
these bets are off: he is neither on the side of the true nor on the
side of the false. His eye is not on the facts at all, as the eyes of
the honest man and of the liar are, except insofar as they may be
pertinent to his interest in getting away with what he says. He does
not care whether the things he says describe reality correctly. He just
picks them out, or makes them up, to suit his purpose.
then I am, in terms of university degrees, a psychologist and a
philosopher and I do not "consider all currently proposed
disease mechanisms for ME/CFS to be – regardless who proposed them
– as either
For me, this only holds for the psychiatric, psychological and LP theories about and proposed treatments for ME/CFS: All of that seems intentional fraud or - in a few cases - stupid delusions.
there has been quite a lot of good and interesing work done over the
last four decades in the field of ME/CFS (and related research, such as
of Fibromyalgia and Lyme disease) by what seem to me to be honest and
competent researchers, who did not
deal only in "unsubstantiated speculations",
as the list below also testifies.
none of this research succeeded in definitely unriddling ME/CFS while a
good part of that research must be - in hindsight - classified as being
mistaken or as only partially true is not
a relevant criticism: That is the way of science.
More precisely: The end of science is knowledge (which is what "science" means), but that end is reached by formulating and eliminating testable hypotheses, and until that end has been reached much and many of these hypotheses will be mistaken, will at best be partially correct, and will have been formulated without the benefit of knowing the truth or even - often, in any field of science - without the benefit of knowing what is relevant to what may be the truth.
And unfortunately for those who are ill with a disease that has no known cause and has no widely accepted effective treatment, such perfectly good scientific research may take generations, centuries or even millenia to land at long last at what seems to be mostly true and useful and allows a technology or effective treatments to be founded on it: It took some 2500 years, from Democritus to Mendelev, to establish the atomic hypothesis; it took about as long, from Hippocrates till Pasteur, Koch and Semmelweiss, to establish the germ theory of disease; and it took some 25 to 75 years of argueing against the medical frauds who are psychiatrists to establish that peptic ulcers and homosexuality are not forms of "dysfunctional belief system" aka insanity.
agree - if one asked - that this is a rather melancholic thought if one
has been ill for 34 years without help and with much discrimination for
being ill, but then it is also true that a hundred years ago or more,
when there was no dole, I probably would have starved in my early
thirties, for lack of health and lack of income.
(*) This may be a thing the WPI might take up: They do have funding; this is a at least a sensible, testable biochemically founded hypothesis or two; these come with treatment protocols that at least benefited quite a few patients - and researching this may restore the WPI's standing among patients.
(**) The source is IAOMT_talks_Rich_Van_K._2011__Part_1R.pdf 1135 Kb
As to ME/CFS (that I prefer to call ME):
Short descriptions of the above:
1. Ten reasons why ME/CFS is a real disease by a professor of medicine of Harvard.
2. Long essay by a professor emeritus of medical chemistry about maltreatment of ME.
3. Explanation of what's happening around ME by an investigative journalist.
4. Report to Canadian Government on ME, by many medical experts.
5. Advice to psychiatrist by a psychiatrist who understa, but nds ME is an organic disease
6. English mathematical genius on one's responsibilities in the matter of one's beliefs:
7. A space-
and computer-scientist takes a look at psychology.
See also: ME -Documentation and ME - Resources
The last has many files, all on my site to keep them accessible.
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