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Nederlog

 

July 2, 2010

 

ME + me :  XMRV blues - part 3: Prof Myra McClure's suffering and logic

 

I am still not well at all etc. as before and it is early afternoon as I am writing this, and it is also heating up here in Amsterdam, with tropical temperatures between 30 and 36 degrees Celsius.

There is some more XMRV news, that again reached me by special correspondence (from the English giantess), me being mostly too exhausted. But I see what I can do, till I've definitely dissolved, and indeed do have (if I can reach so far) a few interesting entries

1. XMRV blues - part 3
2. The ME Association Takes A Stand (or two, or three), politely
3. Professor Myra McClure's immense suffering
4. The Logic Of CDC|KCL|Radboud Research Fully Explained

1. XMRV blues - part 3

It is mostly more of the same, and I'll first give links and then follow up with a few brief comments

The Nature article is the best reporting; the Science Magazine gives most of the relevant facts, but seems to have spoken to the CDC and to be rendering its public spin, since it claims

In the latest twist in a contentious debate about a possible tie between a retrovirus and chronic fatigue syndrome (CFS), the journal Retrovirology today published online a study led researchers at the U.S. Centers for Disease Control and Prevention (CDC) that refutes that link.

Not even the CDC - see below, for the ways of the bright folks over there - currently maintains in their publications meant to be counted as "science" that the CDC "refutes that link.": That's just plain false, and what they in fact claimed was - and I quote the end of the abstract of the CDC "study" that Ms. Jocelyn Kaiser, who perhaps should seek a career in fashion reporting , must have read:

Conclusions

We did not find any evidence of infection with XMRV in our U.S. study population of CFS patients or healthy controls by using multiple molecular and serologic assays. These data do not support an association of XMRV with CFS.

Hence, I would say I have just given data that do not support an association of intellect and fairness in Ms. Kaiser, although in the fairness of my heart I add respectfully that also I have not refuted the possibility of such a link.

2. The ME Association Takes A Stand (or two, or three), politely

And this leads me straightaway to Dr. Sheperd and Dr. Goudsmit. I gave a link to Dr. Shepherd's dealing out calming verbal salve to those who read him. Dr. Shepherd sits on the fence; keeps all possibilities open; and seems to get most of the facts right. My problem with his prose is that I don't like his style, and I see no need for such salve as this, concerning proper, correct, appropriate modes of behaviour:

Last week’s unauthorized report about the NIH/FDA study by a news agency in the Netherlands disrupted steady progress being made toward publication of the data.

Now Dr. Shepherd may sit on the fence, and probably means well, but he should know that there are and have been quite a few very strange goings on around ME/CFS, its study, its funding, and the various kinds of real and pseudo science that have been produced about it the last 25 years, that is quite astouding from a rational scientific point of view, whatever one's concern with ME/CFS, because it shows that a whole lot pseudo science, lies, deliberate misinformation, and denying of patients rights have been going on and have even been published as if they are "evidence based science".

It seems quite possible, indeed quite likely, that at this point of time, one just cannot achieve much for patients with ME if one keeps playing politely by the rules of etiquette, politeness, propriety, and respect that have been for decades so remarkably protective for pseudo-scientists and liars like Reeves and Wessely. And it also seems not very unlikely as if this o so very deplorable leaking, that was o so very disruptive, may well have been engineered on purpose, to prevent pseudo-scientists and corrupt health-bureacratsi in the CDC once again kill off REAL scientific research into ME/CFS, and to make it known there is a positive XMRV study, that confirms and extends the result of the original XMRV study published last October in Science.

But Dr. Shepherd pulled the hymnsheet of the salving-the-patient book, and yodelled a bit from that. Personally, I find this a bit odd in the circumstances, but then I undoubtedly lack Dr. Shepherd's spine and habits of writing.

Although... what also is a bit astounding and needs some remarking is that Dr. Shepherd is kind and factual enough to note that his dear approximate colleague at - what such folks as he and her just seem to love to all by such endearing PC-terms as - American Sister-Organization has published what he calls

A critique of the Switzer study by Association scientific director Suzanne Vernon, PhD,

whose PhD in fact is in the relevant specialism of retrovirology and whose critique is titled

Blood from a Stone,”

to which the kind Dr. Shepherd even provides a link (as you may find by clicking the title), but which he does not seem to wish to concur with, while he also neither disputes nor discusses it.

This is a bit odd, since Dr. Vernon, who has the relevant knowledge Dr. Shepherd does not have, is quite slashing in her critique, and quite rightly so, indeed regardless from the fact what the eventual truth of the matter will be, seen from e.g. 2110 - if mankind makes it that far of course (which with present political and economical "leadership".... but let me leave that topic alone, for the moment).

As I said, this is a bit odd, but then Dr. Shepherd is not rightly in the relevant know, and besides not possessed of a spine like mine, nor indeed of a similarly qualified mind, but then that is neither his nor anyone else's fault.

However, he may be mostly right - indeed, given what he wrote he cannot fail to be - and no doubts pours salve with good intentions.

What is more than a bit odd is Dr. Goudsmit's take, who perhaps may have a higher insight into divine omniscience than other folks have, and who certainly has some - how shall I put it - original takes on what merits research:

Here is an exchange on the horror called facebook, that I was mailed, that gives the relevant details:

Christine White

There's a virus that is possibly implicated in MS, ME, Parkinsons, Alzheimers, several cancers, Lupus and other auto-immune and neurological diseases. It's called XMRV. Why haven't you heard of it? You may well do soon. If you're in any doubt this is a hoax/conspiracy, put XMRV into your search engine. Then spread the word please and get governments to act fast.
    14 hours ago 
 
Christine White
Please copy and paste on your wall and encourage all your friends to too.
    14 hours ago 
 
Ellen Goudsmit
Act on what? A 'possibly'? We've had those before. There are no funds to spend on 'possiblys'. As things are going, this possibly looks like a 'not very likely'. Another passenger virus, perhaps.
     3 hours ago 

Under the circumstances Dr. Goudsmit's stance strikes me as quite odd, also because she has about as little relevant scientific knowledge of retrovirology as I do, as far as I know. (She is a psychologist, like I am, though of another kind.)

And while I admit that I do not know whether XMRV causes ME/CFS, I think the possibility and indeed the danger are far too important not to research - let alone the chance that XMRV is being transmitted by blood transfusions right know, in almost all countries, to people in hospitals, with unknown, possibly grave dangers later.

Now it seems to me also the case, as I explained yesterday, that the dangers are now seen to be so considerable that it seems probable XMRV will be thoroughly researched, if necessary with government funding, if dr. Alter's study remains standing, as it likely will, just as it is not unlikely dr. Alter's present research is related to what the CDC did wrong, so as to be able to avoid those mistakes in the future.

Time will tell, probably rather soon, and if the sketched scenario holds dr. Goudsmit's opinions on what merits research and what not will have been refuted, but meanwhile she really is mistaken in holding that, in scientific research

There are no funds to spend on 'possiblys'.

Sorry: That's plain false. Scientific research is done precisely into 'possiblys'. That is what scientific research is for. After all: if you know something is so, you don't need to do research it. "Elementary, my dear dr." Goudsmit!

Or that's what I would think, but perhaps she, like me, is suffering from the heat. (*) Which leads me to another suffering female doctor:

3. Professor Myra McClure's immense personal suffering

Professor Myra McClure is a dear colleague of Doctor Suzanne Vernon (all medical doctors are publicly dear colleagues) and I have reviewed her scientific and literary abilities in the following instructive bit of prose, that also introduces you to the beauties of science and writing in the true KCL-Wessely style:

As it happens, neither professor Wessely nor professor McClure took the trouble to answer that, though it seems to me likely they did read it (because that is in their personal interest, and the piece has been much read and downloaded; not because I am vain).

For a Wessely or McClure, such an answer, that they may also give in court, should be extra-ordinarily easy, since I am, as professor Myra no doubt was told by professor Simon, like 17 million others, sadly and gravely afflicted by a dysfunctional belief system, which is the one and only true cause - KCL|CDC|Radboud style - why I have felt miserably ill these 32 years, while getting the best possible academic degrees in psychology and other fields.

That is because I cannot think rationally, and because I cannot think rationally, as a Wessely, a White, a Chalder, and a McClure all can and do and have done, so very clearly, it is that I and 17 million others with my kinds of complaints, including medical doctors, physicists, mathematicians, lawyers, psychologists, biologists and all manner of other academically qualified dysfunctional irrationalists: We have all - these 17 million, give or take a few - thought ourselves ill:

That is professor Wessely's proud personal contribution to MEdical science, as expounded by himself also, while this

is my own clearly dysfunctional take on professor Wessely's many cognitive and emotional issues.

No answer yet, by either Myra or Simon.... but now there is this, from the grievously afflicted dear Myra, who never lies nor deceives, who always meant so well, who trained so hard, in whose personal talents and integrity so much was invested by so many others, who studied so hard propelled by her honourably and deeply felt personal desire to help people, who is an honourable woman through and through, and a courageous woman of the highest moral principles and fortitude as well:

"It's ghastly, " says retrovirologist Myra McClure of Imperial College London, the lead author on one of the three published studies that came up empty-handed. "I've had people writing me, and I quote, that I don't know my arse from my elbow, and that I should be fired." Four months after her first paper on CFS came out, McClure says it was also her last one. "Nothing on God's Earth could persuade me to do more research on CFS, " she says.

It is too F*ing much for poor Myra! She can't take no more! Patients who have been ill for a mere three or four decades, who are well maintained on the English dole, and nicely treated with gradual exercise therapy and cognitive behaviour therapy to cure them from their dysfunctional belief systems even dare to mail her that the dear Myra doesn't  know my arse from my elbow - where she means, the poor poor dear, her arse and her elbow, dear reader, and not mine nor yours (though I doubt she could tell the difference between mine, but then I am merely a cynical old man in considerable dysfunctional belief of being in considerable dysfunctional pain).

Aggrieved! Aghast! Afflicted! Ms McClure: Mail Martlet, the Moderator from PR, and she will heal you by a prayer meeting! Truly! (As truly and as tested as your science, dearie, so you better believe me! There is a hope, yea a prayer of a hope, of a cure for your issue, poor darling Myra! And even for your Pinokkio-nose, dear.... real surgery is not needed: prayer and CBT will work for you, luv!)

As you see, this poor psychologist does what he can to help the needy and the puzzled, in the goodness of his heart!

Which leads me to one more subject that many persons, yea even Myra (if and when she has calmed down, and don't you dare laugh, you meanies with your 'fatigue" in the dole), are mostly pig ignorant about, namely logic and scientific method:

4. The Logic Of CDC|KCL|Radboud Research Fully Explained

Having myself read more logic, methodology and philosophy of science than professor Myra, professor Simon, professor Bill Reeves, professor Bleijenberg, and professor Van der Meer have seen in their lives, I feel quite confident to assert, since in the days prior to being struck by my present dysfunctional belief system, and indeed for quite a while after that as well, I believed I easily could and should become a professor in one of those subjects too.

Fate dictated otherwise, and thus I came to learn rather a lot about the pseudo-science that is peddled by the named gentlemen and their willing acolytes, for which reason I can give a rather complete, fair, unbiased outline of The Logic Of CDC|KCL|Radboud Scientific Research into ME, and indeed also into other medical conditions, especially such as may cost the state or the health-insurance corporations money they'd rather spend on themselves than on patients.

Here then it is - and I tell it as professor Myra and professor Simon and professor Gijs and professor Jos and professor love to tell it and have told it, some for decades, with great satisfaction and great joy: 

The Logic Of CDC|KCL|Radboud Scientific Research Fully Explained: (CDC|KCL|Radboud version)

" ME does not exist - for it cannot be found with ordinary lab-tests, and what cannot thus be found cannot medically exist. (QED) But many people are fatigued, and sometimes a long time. We CDC-etc Scientists call this Chronic Fatigue - scientifically also, after a wellpaid conference. We then make a scientific list of patients thus chronically fatigued.  Doing this we take real proper scientific medical care, namely to exclude from those lists all of such folks as are ill with "ME" (in the sense of the Canadian Criterions, the testing of which requires more than ordinary lab-tests, and which includes various serious conditions and symptoms that an ordinary GP cannot explain). The scientific list of remaining tired patients we call CF patients (or "CFS", on respectful days). Sometimes we even take some blood of some on the list of these CF patients that remains, to do some Evidence Based Science (aka E-BS). Significantly, to our great remorse, nothing can be scientifically found in such patients blood (so clearly these patients are deluded, alas, though happily there are therapies for that). If then there are found to be people with "ME" in whom some rare "researchers" - who are not even government employed! - who did a bit more than duly permissible ordinary labtests, have shown the presence of some quite dangerous new virus, we CDC|KCL|Radboud-scientists insist that patients with "ME" are evidently chronically fatigued - after all, that's why it is properly called CF, don't you see? - and then we sort of scientifically kind of partially imitate something that looks like their research, and do so on a small set of the scientific CDC-list of genuine CF-patients (from whom all the really ill have been kindly and scientifically excluded, because "ME" doesn't exist, evidence based CDC-science has proved, since decades also, in case you didn't know). Very significantly and quite surprisingly, it then emerges that ... nothing at all can be found, scientifically. Therefore ME does not exist, and neither does the virus. QED, and by real evidence based goverment supported medical CDC science, no less. (But yes, yes .... we medical scientists from the CDC|KCL|Radboud are really very, very, VERY sorry for all these poor frightfully fatigued patients, since so many of them do have such ghastly issues, e.g, even with us, as if they sick patients have a right to meddle with evidence based government supported science, don't you see?) "

So now you all know how to do CDC|KCL|Radboud-approved pseudo-science, and how to prove things that exist do not exist, and get away with it: Keep lying like Hitler (or a certain Dutch neo-nazi), for the Grosze Luege (the Big Lie) is easiest swallowed by the masses, especially if they are journalists or want to be(come) friends with those in power.

Aahh well....

.... as I yesterday indicated in Nederlog, my own guess is that THIS time this won't succeed, because XMRV is too dangerous for the general population, regardless of whether it causes ME. That is - of course - if dr. Alter et.al. do not retract their earlier accepted paper, and use the ongoing period to (mostly) add to their announced positive results. I expect they won't retract, but if they do, the whole XMRV play alters, and if they don't and it gets published, the whole XMRV play also alters, and indeed the US government and other governments have a major health-problem to solve, which they also must solve rapidly.

Interesting times we live in.


P.S. For an exhausted nearly boiling ill man with dysfunctional beliefs, I wrote rather a lot, I must say. But then I think it needs saying.

19.40: I repaired a number of typos and glitches, it being very hot indeed.

Meanwhile the P.P.S. still applies, though - drop, drop, drop it trickles from my brow - I have been promised thunderstorms and other much desired rainy events RSN:

P.P.S. It may be I have to stop Nederlog for a while. The reason is that I am physically not well at all, and it seems a heath-wave is coming, which is the type of weather I can't handle well. I don't know yet, but if there is no Nederlog, now you know the reason.


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)
9. SleepyDust (patient) M.E. / Chronic Fatigue Syndrome (video)
10. Laurel (patient) Laurel's October 2009 CFS/CFSAC Testimony (video)

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.
9. SleepyDust explains what life with ME/CFS is like for patients
10. Laurel explains what life with severe ME/CFS is like for patients

"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.


(*) But then why publish if one is heated? In any case, Dr. Goudsmit should know how science proceeds and what scientific research involves, and not tell the public the thing that is not.

Maarten Maartensz

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