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  Mar 8, 2012                  

me+ME: Research, X-Rx, Whittemores, mB12 protocol


As it happens, I do not know whether my editions of Hazlitt's books and essays, such as yesterday's "On wit and humour" please many, and suspect not.

Hardly any Dutchman has heard of him, and I'd guess the same applies to most Brits and Americans: He just thought too well and wrote too well to be of interest to the vast majority, academically educated or not, and indeed he wrote no fiction, but almost only essays, while most people who read literature want fiction (aka 'sophistry and illusions'), to pass through the day or get relief from everyday boringness.

Then again, my sites are not intended for mass consumption, and if I had wanted to please many, I should have made a quite different site, written in a different style, and with quite different subjects.

And besides, another reason why I did put another essay of Hazlitt on my site is to get some relief from the horrible nonsense in horrible prose that I spent so much time and space and energy on, the last two years, because  the horrible nonsense I dutifully read and then write about relates to ME/CFS, to the DSM-5, to patients forums, and to more such things - which really are all things I much rather would not write about, and indeed may write considerably less about, since what I write doesn't seem to make much of a difference to others, and all it seems to result in for me, just as it did in the University of Amsterdam, when I publicly spoke the truth about the degeneracy of Dutch education,  in my being sorely  discriminated and grossly abused. Seeing things as they probably are and having the courage to speak up in public are only applauded if what you say is what most believe anyway.

Anyway... here are four brief items that relate to ME/CFS

1. Planned research
2. The X-Rx site
3. The Whittemores
4. My mB12-protocol

1. Planned research

There is a recent article by Cort Johnson on Phoenix Rising with this title

CAA Studies Target New Areas In ME/CFS

which indeed is about what the title says. Here is its first paragraph

The CFIDS Association of America (CAA) released a list $2 million dollars worth of new CAA funded studies last week. There's something of a 'gestalt' to a CAA study; the CAA likes to fund studies that gather enormous amounts of information and then use data mining techniques to ferret out new patterns, they like to 'smush' researchers in different fields together to paint a big picture of CFS, they're very high on finding treatments and they want results quickly.

This sounds like astroturf to me: "something of a 'gestalt'" (what hasn't, o wise be-ing Cort?); "data mining techniques" (already all the rage when I studied, 30 years ago, then called "meta-analysis": throw heaps of journals in a statistical torture machine and hope something (statistically) significant pops out); "'smush'" (does that need sex tools, or what?); "paint a big picture" (how about detailed causal explanations?), "very high" (there are places in Amsterdam where people can get in that state), and more.

Then again, I suppose Cort Johnson wanted to write an upbeat article and it is also true he is not addressing "a community" of scientifically qualified folks, even if many of his members like to falsely pretend otherwise (^) - which is one of the main reasons anonymous patients' forums are totally useless for trying to get rational plans realized, or indeed for having any rational discussion of any - there and then - contentious topic:

The few intelligent and informed, in my experience, always have been demoted by the gross, the stupid, the impolite, the liars, and/or by a whole horde of trolls or wingnuts, pretending or believing they are ill patients, and all totally anonymous as a matter of course.

Besides, I don't want to waste what remains from my life on public discussions with anonymous shits who write loads of bullshit and start getting extremely nasty if one calls their sick bluff or simply inquires what degrees they have.

So... because I don't like the breathless upbeat style, though I do presume Cort means well, I have only skimmed the article, that reports five studies financed (in part, I suppose) by those $ 2 million from the CAA. For what I saw of it, most of the studies do seem worth doing and may produce interesting results.

If you want to know more, and don't mind upbeat prose in the US style, you can use the above link.

2. The X-Rx site

Dr. Deckoff-Jones - a US MD with ME/CFS, and a daughter similarly afflicted - does seem to have her new site going now, and it now has a blog and a forum. Her latest blog has the following title, that's also a link:

Personal Report: Two years on retrovirals

This starts with two paragraphs about the Whittemores and Judy Mikovits Ph.D., who is a friend of dr. Deckoff-Jones, but indeed is mostly about what the title says.

The brief summary is that dr. Deckoff-Jones still thinks as she did before, lists what she takes, and says that she and her daughter are still improving.

It seems likely to me that dr. Deckoff-Jones and dr. Mikovits are mistaken about XMRV, but it does not at all seem impossible to me that some patients with the diagnosis of ME/CFS have something else.

In fact, I think that's likely to be true of a considerable group, but then again Wessely, White, Reeves and co. have for nearly 25 years now been screwing the scientific definitions, criterions and biomedical real science with a will, and consequently there is still no really useful diagnostic instrument in general medical use, and patients with what looks like ME/CFS on e.g. the Canada-criterions are "treated" with psychobabble and refusals to get tested for real diseases.

So the ill Deckoff-Joneses may well be ill with a virus of some kind, and the same applies to others. Then again, I don't think it is XMRV or HGRV, based on what I've read about these, while things may soon be clarified at least a little when the Lipkin-study gets published, that's supposed to be finished this month.

Also, if she and her daughter are still being helped, in their estimate, by what they take, one can understand - especially if one has ME/CFS for a long time - why they keep believing and keep taking their medicines.

There also is a X-Rx-forum now, of which I can see 2 sections, and from which I gleaned there now are 108 members. (I am not one of them, and it is very unlikely I will be if the members are the same as I saw on other forums. No way I am going to congregate with a community with monstrous and disgusting folks like Bob and V99 and their ilk, admirers and friends: I do not have the required stupidity or ignorance, and I am not a masochist. I am willing to debate this manner of sick asshole gladly any day, but not if the terms are that folks as sickening, sadistic and dishonest as these are, may vomit their filth  anonymously while being protected by an owner or moderator of a forum. And I do suspect that quite a few who have run into Bob or V99, or just read their prose, and who are themselves scientifically qualified, will shun dr. Deckoff-Jones site for that reason. That may be a pity, but these are truly nauseous nuts, and as long as one can't find their real names to take them down publicly, as they deserve, they will continue to abuse their betters, with fond pervy dedication also.)

3. The Whittemores

From what I was sent by e-mail, it seems the Whittemores are in more trouble. I only provide the link, the title, and the author, who is Martha Bellisle, quoted in my me+ME: Mikovits vs Whittemores vs Deckoff-Jones of seven days ago:

It is dated 6 March 2012, and is in the Reno Gazette Journal (which sounds a bit strange to my French reading person - see Wikipedia's Gazette: "A gazette is a public journal, a newspaper of record, or simply a newspaper.") but then again one of the few nice things about the story is that the folks in Nevada use what seem - to me - quaint but sometimes quite amusing terms.

4. My mB12-protocol

I wrote last about it in January:

me+ME: Whittemores in court + mB12 protocol

and it's more of the same: It still seems to help; it's quite probable, by now, that the problems I ran into with it were due to my taking not enough Potassium aka Kalium (Wikipedia link: useful if you take it or consider taking it), and I am taking a lot more, and am doing better on it.

Another (it seems: fairly common) problem I may have run into with the mB12 protocol is with folic acid: Both the B-supplements and the multi-vitamine supplement I take contain folic acid, that is said to interfere with Metafolate, that I also took, as part of the protocol, but that seemed to have unpleasant consequences for me, such as a stuffed brain.

It turns out that it seems to help if I take it on alternate days: One with metafolate but no folic acid containing supplements, one with those supplements but without metafolate.

So I am still going on with the protocol, but somewhat modified as I said above. In brief: It does help me some, which is quite nice; I have verified that some of the things I read about the protocol on Phoenix Forums (where there are several threads on it) do hold in my case, which also is nice, for I like to have (at least) probabilistic confirmations while experimenting with my health (*); and my main problem with the protocol is lack of sufficient relevant knowledge that would explain why and how it does work.

But then everyone with ME/CFS would like to know that, and there also are some decent explanations, in the note that follows, in the link at the end.

(*) As to "the placebo-effect": I don't much believe in it, mostly because it is a methodologically tricky concept, and not because I do think people cannot convince themselves of falsehoods. To illustrate: Many diseases just go away, if they don't kill, or vary in intensity, for many different reasons, so what might be explained by "the placebo-effect" may be just Nature working her miracles, while the doctors sends in his bills. More specifically, I have used many supplements that came with many promises, and the usual result was that it made no difference whatsoever to me, so far as I could tell, except financially. Also, I have been experimenting with B12 now for over a year, and with the protocol for more than half a year, and I am pretty certain it does help some, though I cannot provide good, specific, scientific explanations, other than the general methylation cycle block theory that seems best explained - from what I have seen - by Rich van Konynenburg Ph.D. Here is a link to a good 7-part survey of his theory on Phoenix Rising:

       Documents by Rich Van Konynenburg: Parts 1-7

This is well done, and also comes with quite a lot of scientific references.

(^) As it happens, I am the only patient with ME/CFS, that I know of, who did say, from October 2009 onwards, that he did not have the sort of knowledge or education to rationally weigh the XMRV-story on its retrovirological merits, and did not wish to read up on it either, because I am ill and it never was in any of my fields of interest.  

Corrections, if any are necessary, have to be made later.


As to ME/CFS (that I prefer to call ME):
1.  Anthony Komaroff Ten discoveries about the biology of CFS (pdf)
3.  Hillary Johnson The Why
4.  Consensus of M.D.s Canadian Consensus Government Report on ME (pdf)
5.  Eleanor Stein Clinical Guidelines for Psychiatrists (pdf)
6.  William Clifford The Ethics of Belief
7.  Paul Lutus

Is Psychology a Science?

8.  Malcolm Hooper Magical Medicine (pdf)
 Maarten Maartensz
ME in Amsterdam - surviving in Amsterdam with ME (Dutch)
 Maarten Maartensz Myalgic Encephalomyelitis

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.
8. Malcolm Hooper puts things together status 2010.
9. I tell my story of surviving (so far) in Amsterdam/ with ME.
10. The directory on my site about ME.

See also: ME -Documentation and ME - Resources
The last has many files, all on my site to keep them accessible.

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