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Nederlog

September 22, 2012

me+ME: Excellent article by Sonia Poulton | ERV | Maartensz | The sadism link | My eyes and M.E.

Sections

1. Excellent new article on ME/CFS by Sonia Poulton
2. ERV on the Lipkin et al study
3. Maarten Maartensz on M.E. on Phoenix Rising
4.
The sadism link

5. My eyes and my M.E.

PHILOSOPHY: But what's your job? There's no harm in asking that.

LUCIAN: I'm an anti-cheatist, an anti-quackist, an anti-liarist, and an anti-inflated-egoist. I'm anti all the revolting types like that - and there are plenty of them, as you know.

PHILOSOPHY [smiling]: Well, well! You're quite an anti-body, aren't you?

LUCIAN: I certainly am. You can see why I've got myself aso much disliked, and why I'm in such a dangerous situation. Not that I'm not an expert pro-body too. I'm a pro-truthist, a pro-beautician, a pro-sinceritist, and a pro-everything that's pro-worthy. But I don't find much scope for exercisting my talents in that direction, whereas thousands of people are always queuing up for the anti-treatment. In fact I'm so out of practice as a probody, that I dare say I have lost the knack of it by now - but I'm a real expert at the other part of my profession.

PHILOSOPHY [seriously]: That's bad. They're opposite sides of a coin, as it were. So don't specialize in one at the expense of the other. They should merely be different aspects of the same fundamental attitude.

LUCIAN: Well, you know best, Philosophy. But I'm so constituted that I can't help hating bad types and liking good ones.

(From: Lucian Fishing for phonies, in de Turner-vertaling, p. 177-8)

Introduction:

There is reformatted the XMRV is dead Nederlog of Sep 18, 2012 (since Sep 19) and also reformatted Nederlog of Sep 20, about the talk of Lipkin and Racaniello, and talk of George Carlin and my eyes (since Sep 21).

The reason for the present format of Nederlog is that  that I DO have problems with my eyes. And I meanwhile considerably improved the opening of my site, and made the background square in the middle light blue instead of white, for that is better for such eyes as I have.

Update of September 23, 2012: I made a number of corrections, and added a few paragraphs at the end.

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1. Excellent new article by Sonia Poulton
Sonia Poulton is a journalist who works for the Daily Mail. She wrote truly excellent article about ME/CFS in May, that I reviewed and quoted here:
Well, she did it again, having learned about the Lipkin study:

And I am again quoting it: Here we have a real investigative journalist writing as a real investigative journalist should.  I provide the link to the article in the MailOnLine in the title. You also will find the comments there.  Every thing between the two lines that follow is by Ms Sonia Poulton:
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19 September 2012 9:03 PM
ME is no more 'in the mind' than Multiple Sclerosis.
When is the world going to get that?
Ever since I first wrote on the subject of Myalgic Encephalomyelitis - or to afford it a more user-friendly title, ME - earlier this year for MailOnline, http://www.dailymail.co.uk/debate/articl...tigue.html I have been overwhelmed by the response from patients and their loved ones.

The over-riding message I have received has been one of gratitude. I can tell you that this is something of an unusual experience for a journalist writing for national newspapers.


These people have Facebook-ed and Tweeted me. I have received calls and e-mails. There have been forums addressing the article and pictures and cards received which outlined a sense of relief for millions of people.

Many of these voices – including some of the greatest scientific, legal and academic minds in the ME world – have echoed a collective sigh to see their illness validated in the media.

The very notion that the media, and the press in particular, can actually serve a positive purpose in society may come as a surprise. But sometimes it does. And my piece, according to the phenomenal response that greeted it, was just one of those times.

Here's why. For decades, people who have suffered the debilitating – and sometimes fatal – condition of ME have been forced into a type of denial.

They have been told that their illness doesn't really exist on the scale that they claim to experience it (due, in part, to it being labelled a 'chronic fatigue syndrome'. A highly controversial description because it creates an image of something substantially less than what ME actually is).

They have been told, repeatedly, to 'pull themselves together' and to 'G.E.T. A G.R.I.P.' (a vile acronym actually used to describe the graded exercise prescribed, wrongly, to ME patients).

In short, it is not enough for people to have to endure serious multi-system issues that can leave them bed-bound for months at a time, but they are also made to feel bad for, well, feeling bad.

What an injustice.

From the insight I have gained into the ME world, I cannot overstate the consequences of such a twilight-type existence. One in which your body responds a specific way but you are told that it isn't actually possible. That it's not really happening. That you are imagining it.

And that myth, of it 'being in the mind' has been perpetuated worldwide.

Millions of sufferers have been left in the dark to deal with their illness. Sometimes, if they are fortunate, they will be supported by their loved ones - who are also in need of support, too – but often they are left to deal with it alone.

For those reasons, certainly, many ME patients may suffer depression but it is not the other way around - and it is deplorable to suggest it is.

It may surprise you to learn that I have detractors or, as modern parlance would have it, haters. These people troll me on the internet as if their lives depended on it.

Around about now they will be making comments like 'get the violins out - here comes a sob story'. Well, ME is a sob story. And the way patients have been portrayed is grossly wrong and that injustice must be recognised as such.

In my experience, they are anything but cranks or victims but people who have simply waited too long to have the truth of their experience recognised.

And that, partly, arrived yesterday with the launch of the Lipkin Study, a significant multi-centre study into ME.

Chances are you may think otherwise for, as is common with any major ME announcements, there were a number of misleading reports prior to the press conference.

Subsequently, representatives from the ME society have announced their intention to pursue media outlets and seek rectification of some articles that have emerged.

In short, much of the media misunderstood the Lipkin study findings. Partly because some reports jumped-the-gun and took information from rumours and speculation rather than wait for the official announcement. But, it also occurred because the mis-information fed into already-established prejudices.

Many people, and for whatever reason, want to believe that ME is nothing more than feeling a little world-weary and tired.

It is nothing of the sort. It is a neurological condition that savages the body. People die from ME and millions across the world are being mistreated and misdiagnosed as a consequence of poor and hostile reporting.

Yesterday's announcement – that ME was not a result of the XMRV virus – seemed to herald, to some, the idea that ME is not the result of any virus but is, infact, a psychological condition.

Wrong. Wrong. Oh, and for good measure, wrong again.

Many highly-respected and learned people have compared the overall devastation of ME to illnesses including Multiple Sclerosis and even AIDS - and with good reason.

Dr. Charles Shepherd of the ME Association responded to the misleading idea that ME cannot be contracted by any virus by saying:

“There is, in fact, a great deal of robust anecdotal and research evidence to demonstrate that a number of specific infections - examples include enteroviruses, dengue fever, glandular fever, hepatitis, parvovirus, Q fever, Ross River virus - trigger ME/CFS.”

Many ME sufferers like Dr. Shepherd have little doubt that their illness was triggered by one of these viruses. The problem has been getting it recognised and appropriately treated.

This is poor response, certainly, and even more so when you factor in that the World Health Organisation acknowledged it as a neurological condition over 30 years ago, then it becomes more than a little alarming.

But there have been powerful forces at play that have served to maintain the status quo on ME thinking, and they have proven more than a challenge to be reckoned with.

For the past 60 years, the illness has been hijacked by the psychiatric community as one of 'theirs'. They have clutched ME to their collective bosom and have refused to release the iron-grasp on it.

This wholesale insistence of it being something that can be overcome with the right attitude has been highly detrimental to those who actually matter in this debate: the people who are suffering with it.

As a consequence, ME patients have been failed in terms of adequate treatment and significant funds are dove-tailed into Cognitive Behavioural Therapy and, even worse, Graded Exercise – which has been shown to have a detrimental impact on the health of ME patients.

The problems about treating a physical illness in a psychological manner are brilliantly explored in Angela Kennedy's 'Authors Of Our Own Misfortune?' which tackles the topic with some considerable aplomb.

What we are dealing with here is a systematic neglect of ME patients - and we should be under no illusion about that.

Equally, we must be sure to tackle it - medically and in the media - without hysteria or bile.

One of the reasons that ME patients are so vocal is because the mis-information of their illness has resulted in a dangerous delay of appropriate research and treatment. If that were you, would you be quiet about it? I certainly would not!

So yes, ME is a modern-day scandal. The way it has been portrayed is shocking. The Lipkin study, despite its detractors, will enable a deeper exploration of the illness and how it impacts and ravages bodies and lives.

And, to the relief of ME sufferers worldwide, that understanding cannot come a moment too soon.
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I quite agree and thank Ms Poulton for her fine, courageous and well written article. (I have a minor niggle: While Ms Angela Kennedy has courage, a daughter with M.E., and means well, she is definitely not brilliant, as shown by her still touting the XMRV nonsense. She is a postmodernist sociologist, who got a postmodern "education" she does not, alas, have the brilliance to see through for what it is.)

For those who are interested: Here are are a dozen of links (to 11 Nederlogs on my site and one popular reference about Logic) that may shed some light on my opinion - and no: If you have not read most of the literature in the first link, you are - alas - not able to judge this is issue rationally and on the basis of a good grounding in real philosophy of science and logic:
2. ERV on the Lipkin et al study
Ms Abigail Smith, who was one of the first virologists to see the scientific and methodological failings in the Science study of Mikovits, Ruscetti, Lombardi et al. that I commented on in extenso here:
and whose own longest blog about it is from September 29 2011: 
with over a 1000 (!) comments also wrote about the Lipkin et al. study.

She has another fine blog on it - I am speaking of Ms Smith's text, and not about that of her commenters, that as a rule is varied in quality, tone and motivation, with a number of (medical or not) sadists, that is dated September 19, 2012:
She also wrote a long series of blogs on the topic - well worth perusing: I read all of them, and most of the comments as well, in the first week of October 2011 (and I should have done so earlier, but than I have M.E. and never was much interested in virology, and pretended no knowledge about it either, as explained in my previous Nederlog).
Here is the lot of them as a series:
By the way...: Professor Ian Lipkin has considerable praise for Judy Mikovits Ph.D., who is much despised - is, I think, the correct phrase - by Abbie Smith, while she was and probably still is much admired by quite a few patients with M.E./CFS.
As I say there, I am guessing, and offering neither a mathematical nor a judicial proof, and am no specialist on virology either. 
My own view is - "It's the money, Leibowitz!" - that it is probably just that, as I explained here:
But there is very good circumstantial evidence, namely 
  • patents taken out by Ruscetti and Mikovits, and it seems also by the WPI (the Whittemores); there is an enormous amount of (potential) gain to be made from medicines against M.E., whether effective or not; there are and have been many medical, psychological and psychiatric frauds targetting the market of M.E./CFS patients in sickening ways; and Judy Mikovits Ph.D. has presently excellent reasons to agree with professor Lipkin that, after all, XMRV is contamination much rather than the cause or a factor in M.E. and autism (she has publicly claimed both), because the WPI is claiming millions from her for having the lab books stolen when she was fired from the WPI: She still has court cases going against her, by the Whittemores, about the lab-books that she (apparently) asked her then assistant to appropriate for her.
For after all: IF XMRV is a mere lab artefact, as dr. Mikovits now agrees it is, the claims of the WPI on her for stealing very expensive property from them - THEN the lab books that would allow them to continue with the research on a potentially highly profitable research - would be rather or totally worthless, as dr. Mikovits lawyers now can argue in court, where is still being prosecuted by the WPI for lots-of-money (as far as I know).
For some about her more fanatic supporters (there also are less and non-fanatic supporters of her, and by now lots of ex-supporters), the following Nederlogs were all written between November 29 and December 31 2011, here listed in the order of publication:
me+ME: Bright Mystical Lights and Geroupies

me+ME:
More on WPI vs Mikovits

Up to the knees in woo
Recommended Reading: Marks of pseudoscience, fraud and bullshit
me+ME: Dr. Mikovits has a temporary job
me+ME: WPI vs Mikovits = 1 : 0 + ME-varia
Nature on Mikovits + The Scientist on the mouse scandal + Dutch "democracy"
me +ME: More on St. Judy
me +ME: More on St. Judy
e+ME: Science withdraws 2009 XMRV-paper
me +ME: Lo/Alter paper retracted by authors

Hazlitt's Essays: Belief, whether voluntary?
me +ME: Sorting through some evidence about dr. Mikovits
me +ME: Update on the Lipkin + 11  Stud
me+ME: Varia relating to Nederlog and ME/CFS
GW: ME by the Official Rules (as is and to be)

So I believe it more likely than not that the - according to many of her supporters - saintly Judy Mikovits Ph.D. was in it, mostly - but probably not wholly, as human motives are nearly always mixed - for the money, indeed like many researches in medical science and pseudoscience.

Apart from the above items, that outline a good prima facie case for it, here is a final bit of circumstantial evidence, indeed the first information that started my doubting her good faith or common sense:


In March or April of 2010 I learned that dr. Mikovits spent enormous amounts of time on... answering mails by patients wth M.E./CFS.


I found this quite odd and a mistake I would not have made - were I, per impossibile - in her shoes, namely because it seemed to me she could not possibly answer all or most patients' mail she got and to the resea the
scientific research into XMRV she was paid and supposed to do, and it would be unfair to answer only the mails of some, and she has a lot of research to do.

And I never mailed with her, nor indeed with other real scientists working on M.E. especially for that reason, that I also have given in Nederlog: They need the time to do the science, and I cannot contribute anything to them that they cannot find themselves if they want to.
Finally, since it seems to interest some:
3. Maarten Maartensz on M.E. on Phoenix Rising
I withdrew myself, my name and my posts from Phoenix Rising, on May 23, 2010, because I found its owner spineless; its moderators incompetent; while the beloved member Bob - Hey "Bob"! - had shown himself to be a trolling nitwit who also seems a sick sadist. Or that is what this psychologist believes.

For those who care for such things, here is an index of my posts on Phoenix Rising. It is not finished, but all the posts are linked at the top by arrows that are links to previous - index - next:

And speaking of The Owner Of Phoenix Rising...
I certainly do not trust him - and add here I have removed some material to support my lack of trust that I may put on my site eventually. 
He writes regularly like the Hicks scammers:
4. The sadism link
There is a definite link between sadism and the folks who keep insisting M.E./CFS is -
"'G.E.T. A G.R.I.P.' (a vile acronym actually used to describe the graded exercise prescribed, wrongly, to ME patients)see above -
"psychogenic". Being a philosopher of science and a logical psychologist, this was immediately obvious once I had started reading about it on the internet in October 2009 and I first wrote about it in Nederlog in January 2010:
That was a mini series. There is more in the Nederlogs of 2010 and 2011 and 2012
and  - depending on my eyes - I hope to say some more about it:

There are clearly medical doctors - not all, and also not the majority - who went into medicine because the like to "Primum nocere" - and I find that very sick: totally dysfunctional ethical systems.

Then again, this is hard to fight if you are ill or none to bright, and unwise to attribute unless yiy have the academic qualifications for it. (But you may think it, and you should be aware of it, especially in the context of M.E./CFS and psychiatry.)
5. My eyes and my M.E.
There is little to add to what I wrote in the last Nederlog on the subject except for two points, that may be of some importance to some researchers and some patients:

A. I still sleep too little, clearly because of my eyes, but so far without collapsing, and part of the reason may be that, after having avoided gluten (especially bread and pasta: I eat rice or potatoes instead) for 1 1/2 year now and I do not have - since months, the pain in my belly I had for years.

It is anecdotal evidence, but quite pleasant for me.

B. I do have now what may be three auto-immune diseases: M.E./F.M. (I have a diagnoses by three medical doctors), 
keratoconjunctivitis sicca, more likely than not as a part of Sjoegren's Syndrome, and Dupuyteren's contraction, with the problems in my eyes and hands both habing  developed in my early sixties.

And then I should also mention that (i) the problems with my eyes started in my late forties (I have M.E./F.M. since I was 28), namely with eyes that became very changeable throughout the day, also with glasses, that I needed since I was 10, and (ii) when my M.E./F.M. was most severe, in 1992, and also the last decade or so, I have rheumatic pains in my hands: In 1992 I couldn't carry 750 grams in my left hand without pain, and had - a doctor said - red knuckles on both hands due to rheuma.

These disappeared since then, in 1993 mostly.


And "so it goes..." as also shown in me+ME: ME by the Official Rules (as is and to be) - year 34

As a patient the most one can do is try to survive and keep writing about it on the internet, in the hope it motivates benevolent real scientists to research the condition and to contradict psychiatric and psychological fraudulence and/or stupidity and/or ignorance.

The main problem here is that the psychiatric and psychological frauds pretend to be scientists but write and talk PR, and are quite effective in getting their pseudoscientific PR accepted by the media and politicians, while a real scientist keeps far from PR and therefore is not by far as likely to be believed by either the media or the politicians.

It is therefore very nice to see that some journalists, like Sonia Poulson, and indeed others I have mentioned in Nederlog since 2010, can see through the pseudoscientific PR masquerading as "modern psychiaty" and find the courage and opportunity to write or talk about it in public.

It is highly appreciated by me, even though the voices of reason and moralty thoughout human history have been in a minority, everywhere and always, rare places such as some of the best universities, sometimes, possibly excepted.
---

Maarten Maartensz


P.S. My eye problems



                  PS: Any necessary corrections have to be made later.