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Jun 30, 2011           

me+ME: MECFS Alert 2 + psychiatrist with ME (?!) + forums + B12
 

Back to me with ME with a number of brief ME-related items:

Sections

1. Llewellyn King made MECFS Alert 2

Mr. King made another video on ME/CFS (I assume on Youtube the "/" drops out because it is a marker of directories on Windows) and it is good and clear:

His theme is the lack of money for funding (bio-medical) research into ME/CFS in the US, a theme I treated myself here: The mother of invention), and indeed that is a very important theme, since to get good rational scientific explanations of and treatments for ME/CFS good rational scientific research is necessary, and this being expensive needs money from governments and pharmaceutical companies (and the latter may get seriously interested only if there is a rational bio-medical explanation they may use to design some drugs that can be patented).

This being so, Mr. King considers the fact that per patient with MS (not ME) there is annually some 400 dollars made available for scientific research, and for patients with ME (not MS) annually.... around 1 dollar 25.

Also, either disease as yet has no good and medically accepted scientific explanation.

So... while this is not an argument to invest less money in MS research, it is an argument to invest considerably more into - real, bio-medical - research into the possible - bio-medical - causes of and treatments for ME/CFS, and indeed there are quite a lot of bio-medical options. (See my:
Some speculations around ME and XMRV - part I)

And I am grateful to Mr. King for making the case eloquently and clearly.

2.
A US psychiatrist with ME submits objections to the DSM-5

As I said yesterday, I am a psychologist with ME, though indeed not a clinical psychologist or psychotherapist, for if I had been healthy, and had been able to do my Ph.D. in psychology, it would have been in mathematical logic as it relates to psychology. Also, I have never been seriously interested in psychotherapy or psychiatry, other than as fields of pseudoscience, but as I also said yesterday, I do not believe all psychiatrists are frauds, and I do believe people can get and be quite mad or disturbed, and society and especially medical people should help such persons, for that's what human society and human medicine are for: To help each other and to take care of protection and help for the ill, the old, the weak, and the young (and not defraud them with quakery and doubletalk).

As it happens, I do know of some more psychologists with ME, and also know of some medical doctors with ME - dr. Speedy, dr. Deckoff-Jones, to name just two with interesting websites -but Bill Woodin M.D. is the first psychiatrist who stepped forward and says he has ME/CFS, at least that I know of - and no: ME/CFS is not "a psychiatric illness", in his opinion (and that of the "esteemed psychiatrist" - I quote him - that he consulted).

He had the courage and character to write a submission for the APA about the DSM-5, which I found on Phoenix Rising, that starts as follows:
I applaud the letters that have been written to the DSM V Committee working on Complex Somataform Disorders. I have written my own.

I am a psychiatrist who practice 32 years, developed CFIDS/FMS in 2004 and ultimately had to close my practice due to profoundly low energy.
I may copy it later and make some remarks, and while I don't agree with all Dr. Woodin writes, I am quite pleased to see a man with his medical specialism, who has the same disease, or at least many of the same symptoms, as I have, have the personal guts to speak up against the APA, which is his own professional organization: That's real courage and character, that I do appreciate (indeed just as I do appreciate the stances of the chief-editors of earlier editions of the DSM, doctors Spitzer and Frances, to speak up against the DSM-5: I probably disagree with them on rather a lot concerning "the human mind", but I admire moral courage and personal character).

3. A year of my absence on forums for ME-patients

I had reason to look back on my presence
on forums for ME-patients, and realized that in 2010 I have written some 3 1/2 months for Phoenix Rising, and then left, mostly because of unfair and biased moderation, and in 2010 I have also written a little over 1 month for the MECFS-forum, the owners of which kicked me off because I lack the talent to lick ass and have the talent to see fallacious reasoning - since when they have falsely accused me of doing the bad things they themselves did, after which things are totally finished for me: That's a level of degeneracy or stupidity I do not forgive.

Since I have been kicked off, I can't inspect that forum to see whether they still sport that disgusting slander of me, but then also, if that's the level the owners of that forum operate on, then anything is possible for them, except whatever is fair and rational.

As it is, I am told there are a few there who engage in all manners of verbal aggression (of course covered by their own moderators who are partial to that level of shit: a really free forum they dare not run), and that now the level of rational thought there has risen to signatures like "In Judy we trust" and "
I trust in Judy M. and it's very easy to trust Judy as she couldn't lie for toffee." ("Judy" of course being Dr. Judy Mikovits.)

I have been exhausted, in pain, miserably poor and discriminated for decades, all because of having ME/CFS and being denied help, so I can very well understand the anger of patients with ME, and since anyway I have no high opinion of the rationality or reasonability of human beings on average, I am not really amazed.

As it happens, I think Dr. Mikovits did very well, so far as I know, and indeed whatever the truth about XMRV will turn out to be, and I have no reason to distrust her - but pray: Doesn't this look like the Catholic Church, and the adoration of saints, or at least a bit childish or over the top?

Also, the main issue is not whether one trusts Dr. Mikovits but whether she is mostly right about XMRV - and she may be an excellent person while being mistaken, or indeed also a person who is capable of speaking untruths, and who may, in real fact, not be so nice to know, while she still may be quite right about XMRV.

In any case, as I remarked before, quoting Hume: "A wise man proportions his belief to the evidence", and indeed tries to avoid wishful thinking (which is quite difficult, I grant you, being quite human myself).

4. Freddd's B12 protocol helps me

As I mentioned before, the B12 protocol that Freddd - the man who calls himself thus on Phoenix Rising - established as helping him to get a lot better with ME/CFS, also has turned out to help me, so far, and strikingly enough to report it here.

In case you are interested, here are the main references

The first is a very long thread - currently with over 2000 posts - where most of interest, such as Freddd's protocol, is at the beginning, in the first 100 posts or so, though the thread has rather a lot of interest if B12 works for you, but then  it requires a lot of persistent reading to read all, while the second link is a recently revised version of Freddd's protocol, that I am mostly following.

I will later give the details of what I use in the way of that protocol, and also will give prices (which must be approximate, but at least provide some indications).

At present, I will merely by way of introduction say something about supplements and how I arrived at Freddd's protocol.

I became first aware that supplements might help me in 1984, in my fifth year of ME, before I knew of its existence, when I found that rather large doses - then called:  megadoses - of B-vitamins, E-vitamins and C-vitamins did make a considerable difference to how I felt, in making me feel more energetic than I had for a long time, and indeed also without my having any prior belief in the taking of supplements (and in fact, being of a scientific, skeptical and non-superstitious bend of mind, with considerable doubt, then, about the whole notion of food-supplements).

It made a quite noticeable and clear difference, the most in the beginning, but also later, though less pronounced, for I had the vitamins I had found useful flown in from England, since very few took any food supplements in Holland at the time, and vitamins in large doses were simply not for sale in Holland.

I also tried to find out experimentally what helped and what didn't, and compiled over a year of data on how I felt at various points in the day, and what I had taken that day, and tried to account for my findings, which led to my formulating the mitochondria-theory also articulated by Dr. Myhill, in 1987.

Then I collapsed, not because of the supplements, but because the mayor of Amsterdam gave permission to a number of drugsdealers to deal drugs from the bottom floor of the house where I lived (not from his house, and not from the houses were the Amsterdam aldermen and council members lived), who kept me awake for four years on end, without the mayor, aldermen, council-members, municipal police, district attorneys, or indeed anyone who worked for the City of Amsterdam doing anything to help me sleep, to help me with my illness, to protect me, or indeed to defend me from the dealers' threats of murder and attempts on my life because I protested against this. (Since very few Dutchmen dare to protest such things, it was "obvious" I "must" be "mad", and hence, just as in the case of ME/CFS, the authorities refused to investigate the matter - probably also in part because of my background, and that of the mayor, who knew my parents superficially, because they were heroes of the Dutch Resistance against the Nazis.)

At long last, after nearly 4 years, and with the help of my excellent GP, I managed to escape to another house, but since that time, that is, for the last 20+ years, my ME has been much more serious than in the first 10 years.

The supplements I kept taking helped some, but did not undo most of the damage that was done. I kept taking them but was much worse from 1991 onwards, since when I also got actively discriminated by the Amsterdam bureaucracy, because I had protested against being threatened with murder and being, very literally, gassed by the drugsdealers the Amsterdam mayor Van Thijn protected, in the name of the heroic deeds my father and grandfather had been sent to concentration-camp for, because in Amsterdam illegal drugs are dealt in the name of The Ideals of the February Strike, and invalids who dare protest it are gassed by the dealers and their menials, all protected by mayor, aldermen, council members, municipal police and district attorneys. (Currently, as in a police state, the co-responsible chiefs of police - personal protectors of the Amsterdam drugsmafia - are members of parliament, and the co-responsible district attorney is secretary of justice in the government, and illegal drugs are still, extremely profitable for all who protect it, dealt publicly in Amsterdam and Holland, with protection of the dealers and the mafia by police, mayors and aldermen (*)).

Fast forward to 2009-2010:

In 2009 I had - at long last: I am poor and ill, and am the least likely of anyone in Amsterdam to get any help whatsoever from its municipal authorities - succeeded in getting fast internet, and in October at long last found two persons who - almost for the first time since I had fallen ill, on January 1, 1979 - spoke about ME/CFS in the moral and scientific terms that made real sense to me, namely Hilary Johnson and Malcolm Hooper, whom I had not known about before, because the person I relied on for my scientific information about ME/CFS chose not to tell me about them (for personal reasons: professor Hooper, I assume quite justifiedly, had tried to have her license as clinical psychologist terminated).

That new knowledge set me on a track of reading and some writing (see section 3), and taught me rather a lot about ME/CFS (see the NL-index for 2010), and indeed also about human evil and moral degeneracy and about medical sadism (see ME-resources and the NL-index for 2011).

As it happened, I had tested quite a few vitamins in high doses in quite a few combinations in the 1980ies, but the one vitamin I had not tested in high doses was B12, and that for a simple reason: These had not been available in high doses for me (and meanwhile my excellent GP had given up on medicine ca. 2000, being thorougly sickened of the bureaucratization of medicine in Holland, that since then has only grown much worse, while the insurance-premiums kept much rising: Somebody is profiting a lot, but not patients, and not good GPs).

So when I learned on Phoenix Rising in November last year that there was a preparation in Holland of B12 in a high dosis - Bloem's "Recovery Power", being lozenges of 10 mg hydroxycobalamin - I decided to try out that, as I had also learned, from the same source, that about 1/3rd of around 100 patients with ME/CFS had said it helped them, while B12, in that form, also has no known level of toxicity.

This I tried starting December 1, 2010, and immediately found helped me some, in terms of energy, possibly also in combination with the other supplements I took, but quite clearly so.

I had by that time also found the B12 thread linked above on Phoenix Rising, and learned that Freddd claimed hydroxycobalamin is far less effective than methyl-cobalamin, but at the time I had very little health to try to find a supplier in Amsterdam, and anyway I was doing better with what I took.

In February 2011 I decided to stop eating bread, trying not to consume gluten, since I had been having belly-aches for at least 4 years then, off and on, and had read this again may be related to ME/CFS and gluten, and replaced it by rice.

This helped against my belly aches, though slowly, and perhaps also otherwise, for in any case, I did slowly improve with it and with hydroxycobalamin, indeed to an extent that I could organize the supply of Freddd's protocol, linked above.

So on June 1 I started with methylcobalamin and adenosilcobalamin supplemented to my morning dosage of hydroxycobalamin - and in case you wonder: cobalamin is B12, and these are three different kinds of them. (There also is cyanocobalamin, which one should avoid taking in large doses.)

The felt difference was immediate, indeed at least as clear as earlier felt differences when starting with B-supplements, and this was again the case when a week later I got all of the necessary ingredients of Freddd's protocol, and added these, notably B-Right, metafolate, and potassium.

Since then I have been quite a lot better than I have been for a long time - and the reason to write this out at such length is that it gives good probabilistic grounds to assume that, for me at least, Freddd's protocol is helpful, also in being more helpful than standard supplements of B, C and E in considerable doses; more helpful than hydroxycobalamin with said supplements; and also more helpful than methylcobalamin, hydroxycobalamin and adenosil-cobalamin with said supplements - for as far as I can see, the recommended vitamin C, metafolate and potassium, that I added last, made that last positive difference.

I feel considerably better, and have more energy to spend without relapse, and indeed have done more the last few weeks than in a long time, in terms of being up and about and walking, than in a long time (years). For perspective: I still am ill, still have pain, still have problems getting enough sleep, and still have a lot less energy available than a healthy man does. But I feel better and can do more than I have done and been able to do for years.

Here are ten concluding considerations for today, on the assumption that this may inspire some to try the same:

  • First, unlike some with (supposed) ME/CFS I have and had no MCS (= multiple chemical sensitivities) that I am aware of, and never had problems with supplements or medications. (And most supplements and medications I have taken in connection with ME have neither helped nor harmed that I could see, and I have tried quite a lot since 1.1.1979, when I fell ill with EBV, that never disappeared, or grew into ME/CFS.)
  • Second, I have been taking supplements, in large doses, of various brands, kinds, qualities and prices since 1984, for which and other reasons:
  • Third, in my case it is not "a placebo-effect" and not "a dysfunctional belief": This protocol works better, for me, than any I have tried, against the symptoms of ME.
  • Fourth, as I said: While it definitely helps me, I definitely am not healthy.
  • Fifth, the beneficent effects may not persist nor definitely cure, even if the protocol may continue to help: I have to find out and learn as I go.
  • Sixth, I have no guarantees or certainties of any kind - except that you won't find out things if you don't try out things.
  • Seventh, it very probably is a fairly subtle and personal thing to get a proper balance of helpful supplements, supposing supplements help: The combinatorial possibilities are very large, and there definitely are personal differences that are relevant. One has to experiment, and keep records.
  • Eighth, it is not cheap: What I take at the moment costs me ca. 6 Euros a day. It probably can be done for 3 to 4 Euros a day, but not less, in Holland, unless one can get serious discounts.
  • Ninth, it helps a lot if you know some about supplements, chemistry, medicine and science. (But by and large this is not a dangerous protocol to try. If it doesn't work for you, you'll loose money, but very probably not more.)
  • Tenth, I am myself a realist about pain and many other things: I stop doing things if they hurt and I also cease taking supplements in large doses for specific purposes if they do not make a difference. (I trust my body that it tells me something if doing something hurts or doesn't help, namely to stop doing what may hurt or may not help, unless I get very good rational reasons to persist in doing it, and causing myself more pain or more financial loss.)

Note

(*) The reason to write this out is here: I have been threatened with murder, by dealers in illegal drugs; I have handed in all the evidence, and more, that any reasonable man could do; and the mayor, aldermen, municipal police and bureaucracy of Amsterdam all rather help each other and the Amsterdam drugs mafia - that makes billions of profit every year: these things have human-all-too-human  motives - than that they help an individual like me, and there are many drugs-related murders every year in Amsterdam, that never get solved.

And the only cure is to legalize drugs, instead of the current criminal, insane but very profitable Dutch schema of "tolerating" the dealing of illegal drugs by permission of mayors and aldermen, and also instead of the presently intended immoral idiocy of making drugs more criminal, and of "tolerating" the selling of illegal drugs to registered Dutchmen only, from September 2011 onwards.

See my

 


P.S. Corrections, if any are necessary, have to be made later.
-- July 1, 2011: Made some corrections and added some links and text.

 




As to ME/CFS (that I prefer to call ME):


1.  Anthony Komaroff Ten discoveries about the biology of CFS (pdf)
2.  Malcolm Hooper THE MENTAL HEALTH MOVEMENT: 
PERSECUTION OF PATIENTS?
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)
9.
 Maarten Maartensz
ME in Amsterdam - surviving in Amsterdam with ME (Dutch)
10.
 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 understands 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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