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Nederlog

 

 March 7, 2011

 

me+ME: On a new misnamed HGRV-Association



Sections:

1. The lying, dishonest owners of ME-F
2. A new ME-Association
3. Why is it not called the HGRV-Association?

There is a new "ME Association". The owners of it have chosen to call it "International ME Association."

It seems to have sprung from the site owned by two liars, viz. CFS_Since_1998 and Patricia Carter, a site that has been locked to me ever since I criticized the complete bullshit they allow, so I first pay attention to these two, who I dislike, because they very impertinently, falsely and sadistically have accused me of their own sick and dirty tricks:

1. The lying, dishonest owners of ME-F

Let me first explain that last point.

In July 2010, Patricia Carter and Awol invited the members of the socalled ME-forum, owned by the liars Carter and CFS_Since_1998, to put their pictures, their facial likenesses, on line, and did so themselves first, after which many followed.

As soon as I learned about that I warned against that, because I know, in my 33rd year of illnesss without help, how cruel and unreasonable health-bureaucrats may be - and indeed Patricia Carter and Awol after a few days removed their pictures, having enticed others into giving up that modicum of personal security, and thus having succeeded in giving e.g. English bureaucrats the facial likenesses of anonymous persons who criticized the English ME-scene on the internet.

A few months later, the moral degenerates CFS_since_1998 and moderator Flo Benson, known as Advocate on Phoenix Rising, had the sickening cheek to accuse me in the followng terms:


cfs since 1998 [Administrator]

Maarten was banned permanently after ignoring the rules despite repeated attempts by email to ask him to follow them. He kept reposting forum messages on his blog (i.e., violating copyright as well as trust and privacy) and even forum members' pictures. I'm sure he likes it that way because he kept telling us that he wasn't capable of being around people (us) so much less intelligent than him, and wasn't going to participate anymore anyway.

M: What is in red is a lie, but then CFS_since_1998 apparently finds writing falsehoods and deceptions a nice passtime (Slaughterhouse 11)


Flo [Moderator] (Advocate on PR-F)

When this forum was smaller, some people posted photos of themselves in a thread in the lounge here. I did not like it when Maarten copied those photos and put them on his own website.


I did no such thing, you degenerate liar; I warned against putting one's facial likeness on line; and I do not want to be accused by moral and intellectual degenerates of the sick trickery and betrayals of honest people they perpetrated themselves.

Also, when I protested, I got no reply - so I am much interested in learning the name of CFS_Since_1998, who is, at least by my standards, intellectually a moron, morally a degenerate, and a liar as shown above, and is besides someone who is grossly impolite and a disbeliever in any democracy on the internet, by his own public admission in June 2010, for I want to warn anybody who may get anything to do with this character that he is a rotter, as the Brits say: Malicious, for those who want latinisms.

Also, I recommend anyone with or without ME to stay away from persons with lying methods as displayed, and I certainly will, except that I will continue to speak the truth about persons who dare to lie about me in this utterly sickening and false manner, and warn anybody who may get in touch with them that they are in touch with persons who lie and deceive on purpose, and who may easily blacken and defame one, if that seems to serve their interests.

2. A new ME-Association

There is an ME-Association already, but it is not international but British. Now if one wants to set up an organization to help persons with ME, "ME Association" will quite naturally come to mind, so it is not so amazing or worrying that the new association calls itself by that name too, but with the prefix "International".

Here is a relevant mail I received, quoted without changes, except for deletions at the end of email addresses and some empty lines in the original:


NEW M.E. ASSOCIATION (IMEA)

The IMEA (International ME Association) is a new organization for ME patients, their caretakers, families and friends.

CEO:  Louise Gunn, United Kingdom

DIRECTORS:

Keith Baker, United States

Patricia Carter, United States

Robyn Erland, United States

I. J. Pedersen, Norway

Gethin Price, United Kingdom     

MISSION

The mission of the International M.E. Association is to provide information and support for people with Myalgic Encephalomyelitis(M.E.) and other HGRV-related illnesses, along with their families and caregivers. It is  also our mission to support research into the biomedical causes of M.E and other HGRV-associated illnesses. This includes research into HGRV retrovirus and other HRV's.

M.E. is a multi-system disease adversely affecting the heart, brain, immune system, nervous system, circulatory systems, and muscles, including post-exertional malaise and neurological/cognitive manifestations.

We encourage research into the HGRV retrovirus and other HRV's.  We include  in our organization those people who present or have been diagnosed with M.E. or Chronic Fatigue Syndrome (CFS) regardless of whether they have HGRV or other HRV's.

At this time we favor the use of the Canadian Consensus Criteria (CCC) for diagnosis and research, but we are hopeful that new research will yield new guidelines.

The Canadian Canadian Consensus Criteria is summarized as follows:

* Fatigue

* Post-Exertional Malaise and/or Fatigue
* Sleep Dysfunction
* Pain
* Neurological/Cognitive Manifestations
 
* At least one symptom from two of the following categories
 
   1.  Autonomic Manifestations
   2. Neuroendocrine Manifestations
   3. Immune Manifestations
 
* The illness persists for at least six months


GOALS:

* Continue to assure
M.E. is coded as a neurological disorder in the future

* Obtain funding for HGRV research

 * Obtain blood screening to prevent the spread of HGRV's through blood and blood products

* Present publications that offer effective praise and criticism of HGRV research

* Help to obtain clinical trials for the treatment of M.E. and other HGRV-associated illnesses

* Raise public awareness of M.E. and other HGRV-related issues

* Insist on strict definitions and criteria for M.E. and HGRV in research
        
* Until science provides us with a better name, we recommend the use of the name "Myalgic Encephalomyelitis"   
   (M.E.) for this illness and elimination of the term "Chronic Fatigue Syndrome" (CFS)

* Encourage development of effective treatments for M.E. and other HGRV-related diseases

* Obtain research to determine causation of M.E. and other HGRV-related diseases

* Obtain research to determine pathophysiology of M.E. and other HGRV-related diseases

* Encourage Development of reliable and readily available testing for HGRV

ULTIMATE GOAL:  Cure for ME and other HGRV-related diseases
 

3. Why is it not called the HGRV-Association?

I have arrived at my title, and the intellectually gifted will have seen that my question is quite apt. But I'll explain:

Of the names listed above, I recognize none, in any capacity whatsoever, except that of Patricia Carter, who has upsetting habits with the truth, moral integrity and decency, honesty, and with writing clear prose, and besides seems to be a former lawyer, which is a professional group I tend to feel about as did Jonathan Swift: On lawyers:

Here my master, interposing, said it was a pity, that creatures endowed with such prodigious abilities of mind as these lawyers, by the description I gave of them, must certainly be, were not rather encouraged to be the instructors of others in wisdom and knowledge. In answer to which, I assured his Honour, that in all points out of their own trade they were usually the most ignorant and stupid generation among us, the most despicable in common conversation, avowed enemies to all knowledge and learning, and equally disposed to pervert the general reason of mankind in every other object of discourse, as in that of their own profession."

I suspect Robyn Erland to be a former moderator of Phoenix Rising, but this is merely a guess. The others I never heard of.

Now let me consider some of their prose:

MISSION

The mission of the International M.E. Association is to provide information and support for people with Myalgic Encephalomyelitis(M.E.) and other HGRV-related illnesses,
This is a wrong association, since it involves an assumption of fact that so far has not been proven. It may be so, it may not be so, and anyway (1) HGRV is a recent neologism that hardly anybody knows (2) there is no solid scientific proof it is related to ME, or if it is, as is XMRV, then the association is a correlation that has not yet been clarified, while (3) I fail to see the point of presenting M.E. as if it is certain-sure it is "HGRV-related", especially as this association is not known, nor is the term "HGRV" (comes after XMRV-XAND-MLV).

In brief: I find this very ODD: Why bet on something like this? Where's the common sense in any of these mighty minds listed above? If you want to help persons with ME, why muddy the waters from the start? If you want to further research into "HGRV" - as far as I know the coinage of 1 medical specialist on Lyme Disease, in August 2010: otherwise hardly a standardized medical term or concept - why not much rather set up a HGRV - XMRV-XAND-MLV - Association?

M.E. is a multi-system disease

Why not use the WHO-definition?! That goes back to 1969, with an addition in 1991 it is not a psychiatric but a neurological disease? Why do these anonymous folks I either never heard of or only know of as aliases who claim to have ME and lied to and about me, claim to know it better than hundreds or thousands of biomedical researchers, in research published over 5 decades?!

We encourage research into the HGRV retrovirus and other HRV's. 

This makes sense if one has ME/CFS and read the material of the WPI, although even then I would use "XMRV" rather than another term. But one can - like I do - support research into XMRV without necessarily committing oneself as a patients' organization that this must be the cause of ME/CFS.

We include  in our organization those people who present or have been diagnosed with M.E. or Chronic Fatigue Syndrome (CFS) regardless of whether they have HGRV or other HRV's.

That's very kind, but pray... is there anyone with "HGRV or other HRV's" who has ME/CFS? I ask because I don't know, and if the answer happens to be, as I suspect it is, "those who have tested positive for XMRV", the problem is that, at present, in medicine, this does not count as proof of anything.

GOALS:

* Continue to assure
M.E. is coded as a neurological disorder in the future 
That's fair enough - except that it probably is not "a neurological disorder " if it is HGRV-caused, in some sense these folks seem to be firmly convinced of, for no rational reason I can see.

So this strikes me as just incoherent, if possibly well intended. Brain fog or duplicity? (And having had dealings with Carter and CFS_etc. - see the above lies about me - I have to count with the possibility that lawyers and such may not be truthful.)

* Obtain funding for HGRV research

 * Obtain blood screening to prevent the spread of HGRV's through blood and blood products

* Present publications that offer effective praise and criticism of HGRV research
I don't think that is the task of an ME-organization. Also, it is the Silverman-Reeves-Wessely strategy: Invent the disease you want to promote and make money from. Pretend the WHO consists of ignoramuses. Disregard the real science that has been done. Go with what seems fashionable rather than established.

So my question must be: Where is their common sense?! They can be as fanatically pro WPI and pro XMRV or HGRV or whatever under the umbrella of ME/CFS. So what's the point of furthering "HGRV research"? What's wrong with furthering biomedical research into ME/CFS?! Is this mere stupidity or a clever form of malignancy? Also, even if it is - say - XMRV, then ME is most likely one specific bodily reaction to that, possibly modulated by genes.

* Help to obtain clinical trials for the treatment of M.E. and other HGRV-associated illnesses

* Raise public awareness of M.E. and other HGRV-related issues

* Insist on strict definitions and criteria for M.E. and HGRV in research
I am sorry, but this is all based on prejudice. That prejudice - "ME is caused by HGRV" - may pan out, but if it doesn't people with ME still have ME, and the members and leaders of this "International ME Association" put their feet in their mouths based on prejudice and lack of scientific understanding.
* Encourage development of effective treatments for M.E. and other HGRV-related diseases

* Obtain research to determine causation of M.E. and other HGRV-related diseases

* Obtain research to determine pathophysiology of M.E. and other HGRV-related diseases

* Encourage Development of reliable and readily available testing for HGRV

ULTIMATE GOAL:  Cure for ME and other HGRV-related diseases
Why not rather set up the the IHEA?! That is: An International HGRV Association?! As presented, ME seems to be dangling there anyway, as a sort adjunct to or outgrowth of HGRV - which as far as I know is a speculative entity and a very recent terminological invention.

Why act on the basis of what so far is mere guess-work? Why use a term hardly anyone knows? Why make things much more difficult for persons with ME than is necessary?

One may believe as one pleases, and the WPI may be right, and they certainly are not deceiving people on purpose like other researchers or medical doctors are, but so far XMRV and HGRV are just speculative possible causes for ME, whereas ME, if one discounts psychiatric nutters and their bureaucratic henchmen, counts as an accepted if unexplained disease in the medical world.

Anyway... this new organization seems to me a useless organization based on a particular prejudice, to which they are welcome, but not as if it were a fact that merits the building of an ME-association. And since I don't trust Patricia Carter nor CFS_Since_1998, this may well be on purpose: Set up a patients' organization committed to chimeras or mere guesses, and tire out everyone of good will with a good mind.

To me the mission statement of the new "International ME Association"  sounds like a combination of bogosity and brain fog, and if they take their mission statement serious they should rename it to "The International HGRV-Association".

There may be a good reason for such an association, but it seems to me premature, and as stated above a waste of time, energy and resources for persons who feel reasonably sure that what they have is ME.

Indeed, I myself am much more confident that I have ME, and indeed have been diagnosed several times as having ME by qualified medical persons since 1989, rather than that I have "HGRV" - whatever that is, apart from a neologism born 6 months ago - and, like the vast majority of persons with a diagnosis, I do not know whether I am XMRV-positive, since I lack both the money and the energy to get it tested. (*)

In conclusion: Whereas there may be room for an international ME Association, the association I discussed here is not it, for it is lead by the wrong persons, who are, for me at least, proven incompetents and proven liars, while what they propose, whether on purpose or because they simply are not rational, is not so much an organization for persons with ME as one that seeks funds for the study of HGRV.


(*) Besides, if I were tested positive I still wouldn't know what is the case with my ME, since (1) the relation between ME and XMRV so far has not been proven causal and so (2) then I test positive for a retrovirus and have ME, all without having a cure or help for either, in the present circumstances.

P.S. Corrections have to be made later, if any.
--Mar 8, 2011: I corrected some typos and added some links


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 (many 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)

Short descriptions:

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:
   "it is wrong always, everywhere, and for anyone, to believe anything uponinsufficient evidence".
7. A space- and computer-scientist takes a look at psychology.
8. Malcolm Hooper puts things together status 2010.
 


    "Ah me! alas, pain, pain ever, forever!

No change, no pause, no hope! Yet I endure.
I ask the Earth, have not the mountains felt?
I ask yon Heaven, the all-beholding Sun,
Has it not seen? The Sea, in storm or calm,
Heaven's ever-changing Shadow, spread below,
Have its deaf waves not heard my agony?
Ah me! alas, pain, pain ever, forever!
"
     - (Shelley, "Prometheus Unbound") 


    "It was from this time that I developed my way of judging the Chinese by dividing them into two kinds: one humane and one not. "
     - (Jung Chang)

 


See also: ME -Documentation and ME - Resources


Maarten Maartensz (M.A. psy, B.A. phi)

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