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June 24, 2010

 

ME + me :  Updates on ME and XMRV-2

 

    "The mild and the long-suffering may suffer forever in this world. As long as the patient will suffer, the cruel will kick."
     -- Sidney Smith
      "The only thing necessary for the triumph of evil is for good men to do nothing."
    -- Edmund Burke
    "A person may cause evil to others not only by his actions but by his inaction, and in either case he is justly accountable to them for the injury."
    -- John Stuart Mill, On Liberty

After the good news about XMRV I just related yesterday, I am still not well at all and also still sad, but here are a number of links that help clarify the news:

I start with Mrs. Annette Whittemore and Dr. Judy Mikovits, in an interview in March this year on Nevada TV - which, amazingly, is even (more or less) decent TV (apart from senselessly turning logos and bombastic music, that is, for this non-TV-owner since 1970):

Note one especially hopeful point for many, especially those who have been ill for decades: Dr. Mikovits expects there may be medicines against ME/CFS soon, using what's known from the medicines that have proved effective against HIV (another of the three known human retroviruses).

Then here is an excellent video by a woman who calls herself StarryEyes, condemned to spend most of her life in bed, to show how the good news about XMRV I just related yesterday effects people with ME - and also note that the video is in fact quite rationally measured, and is not assuming more than has been shown so far:

As to the implications, possibilities and rational caveats concerning the new findings (that have not yet been publicly reported, but may be taken for granted, although a full scientific report of course is best), here is first a link to a thread on Phoenix Rising, that also shows how excited people with ME got about this

from which I pick - from presently over 400 posts! - one good sum-up by someone with real scientific qualifications who calls himself CBS:

 Originally Posted by usedtobeperkytina
Well, I wasn't saying what I wanted, I was saying what I thought might be the case.

I thought WPI was sharing their samples to be independently tested, also considered verification.

So are you saying that if WPI sent samples to another lab and that lab saw it at same rate, in the same samples, that wouldn't be independent replication or verification?

I am sorry, I thought that was part of what WPI was doing.

Tina

Hi Tina,

This is a bare bones description of the process but independent replication would mean that the samples hadn't come from, or been through, the WPI labs as that wouldn't address the issue of possible cross contamination of samples (I know that this question has been beaten to death but not crossing this 't' would severely weaken a "replication" study). The preliminary step of validating a methodology might involve samples from the WPI (eg. "we found what the WPI found using the same/similar techniques in the same samples"). At this point (having shared positive samples and answering questions about their methodology and cohort selection) the WPI has done all that it can. The next step of using that methodology (assuming that methodology was validated in this manner) to independently confirm the prevalence of XMRV in CFS or controls would require a new set of independent subjects (strengthening the conclusion that XMRV was in either the CFS or healthy/asymptomatic population at large - not just those in WPI samples). All of this gets you to confirming an association. Then its on to assessing the nature of that association, perhaps causation or co-infection.

That seems to me to be about where it's at (as far as my knowledge reaches, that's certainly not as far as that of Mrs. Whittemore and Dr. Mikovits), except for one more point, also born out by my first two links from the Nevada TV-news:

  • Thanks to the existence of the internet - the one thing the pseudos and psychos lying about "CFS" did not reckon with, when they started their 22 years of continued lying and posturing and misleading and defaming and denigrating, indeed combined with sectioning and medically murdering patients with ME by stunningly sick medical sadism that much better fits the Middle Ages or the German concentration-camps than this supposedly scientifically enlightened era - Wessely, Reeves, Van der Meer, Bleijenberg and their choir of pseudo-scientific medical and psychotherapeutical sadists have NOT succeeded in killing of excellent scientific research into the causes of ME/CFS again, as they succeeded doing before with the research of dr. Elaine DeFreitas, and as they tried with the pseudo-scientific lying morally sick and degenerated trash  produced by McClure & Wessely and by Van Kuppeveld and Van der Meer.

It's important to get this last point about the power of the internet!

Next, here is a visual bit that clarifies the feeling of very many patients with ME, including my own. Ur is an image doctored by one of the contributors to the new forum (not myself), and you see the two sickening sadists (SSers) KCL-professor Wessely to the left and CDC-doctor Reeves to the right:

And this depicts a kind variant... - o: in case you disagree: I have now over 22 years of nearly continuous pain, and I am rather well off when compared with those with severe ME, as the last link will show. I am not against expressions of justified anger or Juvenal's "wild indignation, nor am I against due punishment and retribution: In fact, I am strongly for freedom of expression and the due process of rational and reasonable laws, in a free state.

The degenerate "human" assholes hung to name and shame above - pictorially! - have denied for decades anyone with ME/CFS was ill, and instead trumpeted the notion, as "professors and doctors of medicine" and "world renowned specialists on Chronic Fatigue" that people with ME "have thought themselves ill" because they have "dysfunctional belief systems". The stark raving cruel malicious impertinent sick MEdical sadism!

Then there is this, from real scientists (and note there are several entries about ME/CFS, mixed with other stuff

Next, here is a world-specialist on deception, spin, lying, manipulating, astroturfing and abusing pseudo-science:

War, said Clemenceau, is too important to be left to the generals. Science is also too serious to be left to the scientists alone. It is, says Jenkins, for "society to decide the direction of research". But windmills and tilting come to mind. Where has Jenkins been living in the past few years? Certainly not on any senior scientific committee or grant-giving body that I have attended.

Science has been socially controlled for most of its existence, in most of its incarnations, and if anything is even more controlled than ever before. Science needs money, often lots of it. That can and does come from governments, which exercise ever-increasing control over what can and cannot be done. Governments, not scientists, now decide the priorities of most scientific programmes - the panoply of committees, institutions and learned societies determine, for the most part, who is technically best qualified to meet scientific goals.

(...)

Science is indeed socially controlled, and so it should be. You cannot sit on a scientific body in this country without knowing that decisions are strongly influenced by the priorities set by elected politicians. Jenkins just does not like the decisions taken. What he wants is for Greenpeace and similar NGOs to exercise that control, on the grounds they would do a better job. Perhaps they would, though I doubt it. And what authority do they have that others lack? Why should we trust them any more than we trust the research councils or R&D divisions of large corporations? At least we vote in our governments.

· Simon Wessely is professor of psychiatry at King's College London

Yes... these words of wisdom and integrity were spoking by this darling of the British Military, shown here sucking up to his paymasters, while smiling and smiling like a villain, having shown by pieces like the one I quoted that he wants to be a reliable puppet, quite prepared to lie about anything:

And here is the same gentleman sadistically demeaning, denigrating, defaming, belittling and just hurting for the sheer pleasure of it first anyone with ME, and next even the family of private Farr, who was shot during the first World War, iin case there is any doubt in your mind whether or not professor Wessely should or would be sectioned in any decent state with good laws:

Finally, here is another piece of relative good news, namely about Dr. Myhill, about whom I wrote here:

Here is a quote by one of her helpers, Craig, on a forum for ME patients, with my boldings:

This was posted on supportdrmyhill.co.uk today:

GMC apology for Dr Myhill

Information Release, Dr Sarah Myhill MB BS statement

The General Medical Council systematically filleted out of their official files all communications from me to the GMC between December 2005 and December 2007. This is illegal under the Data Protection Act. I now have two letters from GMC Information Access Officer Mr Julian Graves and GMC Assistant Director Mr Neil Marshall admitting the offence and apologising “without reservation”.

The GMC did not reveal these missing documents until the day of my Interim Orders Panel Hearing – I did not know until it was too late that these documents had indeed been filleted out of the official record.
All the IOP had to examine was the GMC’s version of events. Since my past history with the GMC has to be taken into account with respect to recent allegations against me, the GMC did not have a complete history that included my side of the story. Since the GMC’s potted version of events is largely incorrect, omitting my version is serious.

The GMC seems to believe that it is fine to remove documents from the official record, show them to whom you see fit, with-hold them when is convenient, then say what you like to suit subsequently. Just this one incident is symptomatic of the GMC investigation of me over the past nine years – run with any old allegation from any old person and when the facts don’t fit ignore them or make up new ones that suit.

The editorial is as follows

In what is an unprecedented move to date, the General Medical Council has apologised ‘without reservation’ to Dr Myhill for transgressions of the Data Protection Act leading up to her IOP Hearing in April 2010.

The apologies proffered by Julian Graves and Neil Marshall represent recognition on the part of the GMC that they are not invincible and can and do make mistakes. This may appear to be a minor victory but it is also a first and significant step in Dr Myhill’s battle to restore her prescribing rights and to defend herself against allegations she faces, all of which is documented on this website.

The ‘without reservation' apology proves that the GMC are at last listening to Dr Myhill, her patients and supporters and are willing to do the honest thing and investigate complaints into their handling of her case. In time, we trust they will also turn their attention to other serious issues raised by Dr Myhill in connection with other investigations over the last nine years - none of which led to to any GMC action.

Those of you who have followed Dr Myhill’s struggles with the GMC since 2001 will be aware that she has frequently claimed that the GMC have withheld information pertinent to her defence, failed to provide information in a timely manner, taken patient records (permissible in certain circumstances) but then failed to anonymise them properly prior to circulation and withheld information from expert witnesses.

The Data Protection Act was designed to ensure safe and proper handling of personal information and it is only right that the GMC adhere to the standards imposed by the Act in the same way that every other organisation is obliged so to do.

It is a small step but a first step.

Quite so.

Later on the day: Here is some more background news, including links to "leading journals" having the news and a bit that clarifies a tiny bit of the science:

  • Chronic fatigue syndrome: suspicion is back on virus

    The above is in today's New Scientist and starts thus:

    "A leading scientist at the US National Institutes of Health (NIH) supports the theory that a retrovirus causes chronic fatigue syndrome (CFS) and says that government researchers have independently confirmed the association.
     

  • Further Evidence of an XMRV-Chronic Fatigue Syndrome Connection?

    The above is in yesterday's  Wall Street Journal - faster than the New Scientist, and also better. (It's rumoured bankers are the smartest people in the world, but this seriously confuses greed and cleverness with benevolence and intelligence: The most intelligent tend to be pure mathematicians, physicists, chemists, musicians, and logicians, and some philosophers if only because they have a sane and healthy perspective on what is a genuine rewarding life - but that's much by the bye, although I did treat the question in Dutch: De crisis-economie grootmeesterlijk "verklaard").

    Here is the final paragraph from the Wall Street Journal, that shows the journalist used her mind:

    "And at the bottom of the slide, in a bullet point that launched all the buzz, this statement: “We (FDA & NIH) have independently confirmed the Lombardi group [which published the original Science paper] findings.” "

    If you don't know: That's about "as official as it gets", in the US, in these sorts of matters.
     

  • Viral size matters

    The above is by Dr. Vince Racaniello, one of Dr. Judy Mikovits's co-workers, and clarifies a tiny bit about how awfully tiny these viruses are. He gives a picture of what is really a loglinear scale, i.e. a linear scale running from 1 cm = 10-2 meter down to 1 Angstrom = 10-10 meter, on which scale the viruses are between 10-7 and 10-8 meter, atoms being of Angstrom size.

    How extremely tiny is that? Racaniello gives a nice and clarifying answer:

    "But even comparisons of this type fall short because they do not provide a readily grasped real-life reference. A better way was suggested by my colleague Karla Kirkegaard: Start by multiplying the size of viruses and humans one million times. A supine human would then extend from California to Colorado. At this scale, a cell would be about the size of a lecture hall. Depending on their size, viruses would either be lemons (poliovirus, 30 nanometers), grapefruits (retroviruses, 100 nanometers), or watermelons (poxvirus, 250 nanometers).

    Peter Palese has a different way of relating the small size of viruses. If you magnify a virus so it is the size of a human fist, then a cell would be about half the size of the Empire State Building."

    Actually, this reminds me of a very nice book I have since many years, by the late D. Houwink, called The Odd Book of Data, published in the 1960-ies by Elsevier (with a sequel), that was given to such comparisons, many of them quite illuminating and useful, and all calculated by slide-rule or (at best) cog-wheel calculator.

    It would be nice to see this book and its sequal in Dover Paperbacks... just wishing...

And here is a little more on yesterday's theme, ME + me :  The tragi-comical human fundamental problem. To enlighten both the problem, here are respectively Miss Carolina Teen 2007, and Miss Universe, or a good candidate for that position:

Have fun - forbidden on Phoenix Rising, mind: My favourite Miss Universe is not properly respectful, no doubt, but she made a fine satirical spoof! AND she too had a top dentist!
 

P.S. And that's were it stood on June 24, 2010, in the evening. (There was an earlier version today.)


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 upon
     insufficient 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


P.P.S. ME - Resources needs is a Work In Progress that hasn't progressed today.


Maarten Maartensz

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