a`\ 

Nederlog

 

 September 8, 2010

 

ME + me :  Williams vs White + Feynman vs Wessely

 

    "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

I continue being not well, and today I had planned to write some more on the DSM-5TM which I may still do if I can find the energy, after writing yesterday about psychiatry and the NIH, but I first want to insert the text of a fine essay by Margaret Williams that I was sent yesterday, with permission to repost, which I accordingly do, and then also will want to quote and discuss a little Feynman from his Cargo Cult Science, which is Wessely-style science.

Sections

1. Williams vs White: "So near yet so far – from Mission Accomplished?"
2. Feynman vs Wessely

1. Williams vs White: "So near yet so far – from Mission Accomplished?"

In fact, I was not sent the essay by Margaret Williams herself and I also never e-mailed with her and indeed know little about her, except two quite outstanding things, indeed:

First, she knows a lot more about ME/CFS than I do, and than most people do, and has written a great amount of fine essays about the subject, by herself alone, with professor Malcolm Hooper, and/or with associates of professor Hooper, that you can find here:

Second, Margaret Williams really understands real science, and can think, write and argue very well, all of which are, in my eyes, both rare and important characteristic. I know, because I have rapidly read the larger part of the articles in the above link between October and December 2009, after being woken from my lethargy as regards ME (which I have it 32 years now) by the WPI's findings concerning XMRV, published in Science, almost a year ago now.

And she has ME herself, quite seriously also, so she knows from her own experience what she writes about so well, and indeed keeps writing on, which I very much appreciate (knowing myself rather well what it is like to grind out something intellectually demanding while one is totally exhausted and in pain).

So here is Margaret Williams' take on the present situation in and around ME, dated yesterday, with her own title, and the full text, that also can be downloaded frim MEactionUK from the link in the title
 


So near yet so far – from Mission Accomplished?


(by)

Margaret Williams
7th September 2010
 

 

The British Association of CFS/ME (BACME, of which Dr Esther Crawley is Chair) supports the current NICE Guideline CG53 and its recommendation of only cognitive behavioural therapy and graded exercise in the management of ME/CFS. BACME has taken on the role of training NHS staff accordingly, even though it seems to be accountable only to itself; it is to hold a meeting on 13th-14th October 2010 at Milton Keynes and its provisional programme affirms that Professor Peter White (Chief Investigator of the MRC PACE Trial on ME/CFS) will speak about it in a talk entitled “PACE trial: so near yet so far”. The BACME notice goes on to say that if the PACE Trial outcome results are not published by then, Professor White will present the design, progress and baseline data from the trial.

From over 2,000 pages of information obtained under the Freedom of Information Act, much is already known about the design and progress of the PACE Trial ( http://www.meactionuk.org.uk/magical-medicine.htm ), including the fact that its entry criteria were intentionally broad (“We chose these broad criteria in order to enhance generalisability and recruitment”; Trial Identifier 3.6). Despite the use of such broad entry criteria, there were serious recruitment difficulties, so the entry criteria were broadened even further when on 14th July 2006 Peter White sought approval from the West Midlands MREC to write to GPs imploring them to send anyone with “chronic fatigue (or synonym)” for entry into the PACE Trial, thereby opening the trial to anyone who was merely chronically tired. 

Given the customary requirement for study cohorts to be as homogeneous as possibly, this seems to defy logic: how can the Wessely School’s long-held desire to “clarify the role that psychiatric disorders have in fatiguing illness” (Ann Int Med 1994:121:12:953-959) and their inclusion of persons with psychiatric disorders possibly restore to health people with the neuroimmune disease ME/CFS who are allegedly the subjects under study, any more than it would be able to restore to health people with multiple sclerosis or motor neurone disease? 

The fundamental point is that the PACE Trial interventions are not designed to offer psychological support to those coping with life-shattering disease, but to comprehensively disabuse them of their belief that they suffer from a serious organic disease.  If the aim of the PACE Trial is merely to indulge the Wessely School psychiatrists’ unproven beliefs (which Professor Michael Sharpe has already admitted are “without theoretical foundation” ( http://www.meactionuk.org.uk/The-MRC-secret-files-on-ME.htm ), on what grounds did it gain ethical approval?

How can the results of a trial that was deliberately designed to conflate people with behavioural disorders, idiopathic fatigue, fibromyalgia and people with ME/CFS (characterised by immunological, neurological, metabolic, cardiovascular, respiratory and musculo-skeletal dysfunction, the cardinal symptom being post-exertional exhaustion accompanied by malaise) be equally applicable to and effective for such diverse disorders?

If the role of psychiatric morbidity in “fatiguing illness” is being studied, then why was the trial designed to exclude people with multiple sclerosis who definitely experience profound and disabling fatigue?

The answer, of course, is that the PACE Trial limits the study to those people suffering from disorders that the Wessely School deem to be “mental” disorders.

Notably, in an exchange of correspondence (Conversing with Professor Simon Wessely: (http://livingwithchronicfatiguesyndrome.wordpress.com/2010/08/29/conversing-with-professor-simon-wessely-part2/), Wessely states: “…it is essential in any study to make it clear exactly where your subjects come from – without that it is impossible to generalise from any report/paper/treatment.  This not a new observation – you will see that we pointed that out in 1996, and have continued in all papers to make that distinction abundantly clear”. 

Many would challenge Wessely’s assertion that his study cohorts have always been strictly defined; moreover, is it not curious, given that he is in charge of the Clinical Trials Unit for the PACE Trial, that Wessely apparently saw no need to exercise such care in the PACE cohort?  Does this not mean that, on Wessely’s own admission, if a cohort is heterogeneous (which the PACE Trial undoubtedly is), then the conclusions cannot be generalised and so will have no clinical relevance and thus be a waste of tax-payers’ money? 

It has already been shown that the PACE Trial Investigators apparently did not adhere to good research practice on numerous other counts also, including their apparent failure to observe either the AGREE Instrument or the Declaration of Helsinki, and there are consequential concerns about how meticulously they will adhere to the CONSORT Statement.  CONSORT (Consolidated Standards of Reporting Trials) was developed by a group of scientists and editors in 1996; it was updated in 2001 and again in 2010 and it consists of a checklist that authors are recommended to use for reporting a randomised controlled trial (RCT). It is based on the premise that “The whole of medicine depends on the transparent reporting of clinical trials” and its authors note that trials with inadequate methods are associated with bias, especially exaggerated treatment effects, and that reporting is not only often incomplete but also sometimes inaccurate. They point out that: “Biased results from poorly designed and reported trials can mislead decision making in health care at all levels, from treatment decisions for a patient to formulation of national public health policies….Bias jeopardises even RCTs, however, if investigators carry out such trials improperly…The methods used should be complete and transparent so that readers can readily differentiate trials with unbiased results from those with questionable results….We encourage peer reviewers and editors to use the CONSORT checklist to assess whether authors have reported on these items” (D Moher / D. Altman et al; BMJ 2010:340:c869).  One of the items on the CONSORT checklist relates to trial design, with particular emphasis on important changes to eligibility criteria that are made after trial commencement (as occurred in the PACE Trial) – and the reasons for them.

Furthermore, as an experienced member of a Research Ethics Committee who is familiar with the PACE Trial documentation has pointed out, the PACE Trial is a classic example of over-measurement of variables (ie. it measures too many variables so it is almost inevitable that the data will show spurious “positive” results which in fact have no clinical meaning).

These are very serious matters that, as Chief Investigator, Professor White will need to address with total transparency sooner rather than later.

In response to a previous formal complaint about the PACE Trial made in 2004 by a former MRC grant-holder, Elizabeth Mitchell, MRC External Communications Manager, wrote on 15th November 2004 about the PACE and FINE Trials: “The design of these trials have been judged by international and UK peer review to be appropriate for delivering the trial objectives, including use of the broad inclusion criteria”.

This is undoubtedly so, because if a proposal is sent for peer review to those who hold similar views to the Investigators, those reviewers will obviously support it.  The real question is – what exactly were the “trial objectives”?  It was already known that the interventions used in the trial are at best of little help and at worst are damaging to those with ME/CFS (ie. the alleged target group) and that the interventions being studied do not reduce either fatigue or disability in such patients. Was this in reality an elaborate exercise for the benefit of the DWP and the medical/permanent health insurance industry?

It is notable that Dr Cathie Sudlow, an Edinburgh neurologist who collaborates with Professor Michael Sharpe, wrote in the BMJ (BMJ 2010:340:c1260) about the discovery of the retrovirus XMRV in relation to ME/CFS in the Lombardi/Mikovits et al paper that was published in Science on 9th October 2009: “The role of reviewers here is crucial…their contribution should be publicly recognised and valued by journals and by the scientific community as part of the scientific record.  This can surely only happen if reviewers are always openly identified and their comments published” (emphasis added).  Indeed, but will this apply to the PACE Trial?   Would it expose bias if so?

Given the recent findings of the “dramatic association” of a family of retroviruses with ME/CFS that have been published in both Science and PNAS ( http://www.meactionuk.org.uk/Memo-to-NICE.htm ), on what logic or evidence do the PACE Trial Principal Investigators Professors Peter White, Michael Sharpe and Trudie Chalder continue to rely to support their belief that the Trial will confirm that “behavioural restructuring” can cure such seriously sick patients (this is what the Trial manuals claim: http://www.meactionuk.org.uk/magical-medicine.htm )?  If the PIs do not hold such views, then why have they received £5 million to test those beliefs?

So near yet so far”:  is it the case that the Wessely School were so near to achieving their goal of showing that ME/CFS is a somatisation disorder, using the PACE Trial data, only to be thwarted by the publication of papers in Science and PNAS showing a strong association of a retrovirus with ME/CFS, making their goal scientifically untenable?

Notwithstanding, the way seems to be being paved by the Wessely School for further disparaging attacks on those scientists who have found retroviral involvement in some ME/CFS patients and for yet more dismissal of the significance of those findings.

Whilst the ground-breaking retroviral link published in PNAS on 23rd August 2010 was announced in over 150 outlets world-wide, including Russia and Latvia, and whilst it was deemed to be of such importance that it featured on the front page of the Wall Street Journal, the UK media remained deafeningly silent and there was effectively a news black-out. It was not until after 31st August 2010 that the Science Media Centre (through which all UK media announcements about medical/scientific issues must now seemingly pass, and where Professor Simon Wessely is a member of the Scientific Advisory Panel) published a statement (apparently back-dated to 23rd August 2010) that downplayed the significance of the retroviral association with ME/CFS.

Entitled “Expert reaction to PNAS study on viral sequences found in blood of chronic fatigue patients” and quoting two UK virologists (Professors Robin Weiss and Myra McClure), the SMC press release was dismissive: Professor Weiss stated: “It is based on small numbers….Let’s hope it is not another claim like MMR…which didn’t hold up (untrue: the UK High Court recently ruled that the MMR vaccine is not safe, which the UK Government has been forced to concede: Sunday Times, 29th August 2010), but I am sceptical of the claim…One should also bear in mind that no less than 4 negative reports on this topic (failing to find a retrovirus link) have been published this year from reputable groups in the UK, the Netherlands and at the Centre for Communicable Diseases & Prevention in Atlanta, USA” and Professor McClure stated: “…it is important to realise that this group have not detected the virus (XMRV) that claimed media attention after the publication of Lombardi’s paper in Science last year. They describe murine leukaemia virus (MLV)-related sequences that are genetically distinct from XMRV….Several other groups (including Professor McClure’s own group)…have employed the same experimental protocol, yet have consistently failed to detect any retrovirus in CFS patients”.

The SMC has an established track record of down-playing any association of retroviruses with ME/CFS (for example, http://bit.ly/90PAXp and http://bit.ly/aj27AK ). Given the disparaging tone of the latest SMC press release, it is little wonder that the UK media did not bother, even belatedly, to publish anything about it.  It is possible that the SMC’s intention was to ignore the game-changing discovery entirely, but after it was publicly asked by a contributor to an internet group why this important breaking news had not been mentioned except for a low-key article in the Daily Mail, the SMC perhaps felt obliged to note it, but did so as dismissively as possible. 

Could this be because nothing is to be allowed to detract from the PACE Trial findings that cognitive restructuring – including graded aerobic exercise  -- are likely to be claimed to be restorative for patients with ME/CFS?

It is interesting that, over the years, Professor Wessely has repeatedly asserted that he is no longer involved with the politics of CFS research, most recently at the beginning of August 2010 http://livingwithchronicfatiguesyndrome.wordpress.com/2010/08/29/conversing-with-professor-simon-wessely-part2/ ), yet at the first sign of a significant threat to his model from the Whittemore Peterson Institute, he rushed out a paper co-authored by Professor Myra McClure that claimed effectively to negate the WPI findings.

In the same series of correspondence, Wessely states on the record: “At the time of writing I can say with my hand on my heart that I believe that the treatments that we recommend and use in our clinic are currently the best there is – and nothing i have seen, or read about, suggests otherwise”.  Retroviral involvement in ME/CFS notwithstanding, might this be taken to indicate what the PACE Trial results will conclude?

This firm statement from Professor Wessely (ie. that nothing he has seen or read suggests other than that his favoured behavioural interventions are the best treatment for ME/CFS) seems to indicate that, as noted by the person from Australia who posted the very revealing exchange of correspondence, Wessely’s comments are a classic case of the Semmelweis reflex, defined as “the tendency to reject new evidence that contradicts an established paradigm”, and s/he commented about Wessely’s stance: “Science works by new evidence replacing existing paradigms.  When this new evidence is presented, it is a fallacy to reject it with the argument that it interferes with an existing paradigm…if all scientists used Wessely’s logic …then there would be no new scientific discoveries”.  Wessely maintains that the XMRV research fails to model the role that childhood abuse, psychological factors and other infections may play in the illness, whilst also confirming that for the last 21 years he has promoted his own theory that the “cognitive behavioural model” is a better explanatory model for chronic ME/CFS than the chronic viral paradigm that dominated at that time (and which many believe he was instrumental in suppressing).

That patients with ME/CFS have been left with no alternative but to suffer from on-going viral illness for the last 21 years and have been deprived of essential financial support because of the dominant influence of certain psychiatrists is deplorable and may be recorded in future annals of medicine with abhorrence and disbelief. 

A recent internet post by “XMRV Global Action” announcing that Francis Collins, Director of the US National Institutes of Health (who oversees an annual budget of more than $31 billion) is to open the First International XMRV/MLV Conference on 7th September 2010 noted that this means the NIH are taking XMRV/MLV very seriously indeed, and that there is an element of potential scandal, given that people with ME/CFS have been complaining of profound viral symptoms for decades (and dropping dead from viral cardiomyopathies and rare lymphomas) while being derided as hypochondriacs ( http://www.facebook.com/home.php#!/pages/XMRV-Global-Action/216740433250?ref=ts ).

Yet more evidence has emerged in the UK that the Wessely School’s various attempts to neutralise what they may consider to be inconvenient findings simply do not withstand logical analysis and their contemptuous dismissal of the biomedical research will no longer carry any weight, because their “cognitive behavioural model” has been dealt what may be a fatal blow.

Whilst there are no children involved in the PACE Trial, paediatrician Dr Esther Crawley is about to start a study looking at the effect of the Lightning Process on children aged from 8 to 18 to see if sufferers can be trained to think differently about how ill they feel and so increase their exercise levels, but an article in the current issue of the American Medical Associations’ journal “Archives of Paediatrics and Adolescent Medicine” 2010:164(9):817-823 (Biochemical and Vascular Aspects of Paediatric Chronic Fatigue Syndrome/Myalgic Encephalomyelitis; G. Kennedy et al:) shows how unsuitable such a study may be.

There are thought to be about 15,000 children in the UK with ME/CFS and a team from Dundee that was funded by ME Research UK (MERUK) and The Young ME Sufferers (TYMES) Trust has found abnormalities in the blood of all the children with ME/CFS tested but not in controls, the results being similar to those previously found in adults with ME/CFS and consistent with an activated inflammatory process.

Professor Jill Belch from the Vascular and Inflammatory Diseases Research Unit, Ninewells Hospital and Medical School, Dundee, explained this new research on the BBC Radio 4 Today programme on 7th September 2010, saying that they have demonstrated two important findings, the first being an abnormal level of an inflammatory chemical in the blood and that this is matched by abnormal white blood cell behaviour; she explained that this is important because “finding an abnormality is halfway to finding a treatment”.  The second finding, said Professor Belch, is that ME/CFS is a physical abnormality, and this is important because “there has been some question in some peoples’ mind whether this disease might actually be a disease of the mind, and I think finding an abnormality reassures us that this is a genuine physical illness”.  The interviewer (Sarah Montague) responded by asking “Because so many have questioned whether ME even exists?”, to which Professor Belch replied: “That’s absolutely right”. Professor Belch went on to say: “These children have a terribly damaged lifestyle, and if you add disbelief on to that, the parents don’t know whether to believe the child, (and) the doctors don’t know”. Sarah Montague summarised the findings, saying: “What you’ve found is what happens to a body that’s reacting to a virus?”, to which Professor Belch replied: “That’s correct”, adding: “There is no doubt that once you have an abnormality to target, treatments can follow”  ( http://news.bbc.co.uk/today/hi/today/newsid_8975000/8975412.stm ).

Commenting on the Dundee research, Dr Neil Abbot, Director of Operations at MERUK, said: “The study undoubtedly adds greater scientific weight to the existence of a condition which, sadly, many still fail to acknowledge in spite of its severity” ( http://www.bbc.co.uk/news/uk-scotland-tayside-central-11204884 ).

The importance of this study cannot be over-emphasised because of the potential long-term consequences for cardiovascular disease and because, as Dr Abbot points out, the white blood cells are releasing an excessive amount of highly reactive free radicals, possibly from exercising muscle (which would contra-indicate incremental aerobic exercise) and the white blood cells provide evidence of “a persistent or reactivating viral infection triggering apoptosis of white blood cells”.

Many people around the world believe that the Wessely School’s “cognitive behavioural model” of ME/CFS (which includes the use of incremental aerobic exercise) has been built on sand, not science.  Wessely’s own recent comments, together with the now irrefutable evidence of viral involvement in ME/CFS, can only have assisted the cognitive behavioural model’s (long overdue) disappearance from the discipline of medicine.

It may be coincidence, but a video is currently circulating on the internet featuring Francis Collins, Director of the NIH, singing “The Times They Are A-Changin’ “ on Capitol Hill (Rock Stars of Science: http://www.youtube.com/watch?v=2SNHDlKYSt0&forumid=331851 ). 

The times are indeed changing for those with ME/CFS because the stranglehold of the Wessely School has finally been severed but they will, naturally, go down fighting because their professional careers in relation to ME/CFS have been shown to be scientifically invalid, a record of which no-one could be proud.

 

This seems to me to be a very good sum-up of where things presently stand with and around ME/CFS, and indeed these are hopeful times for people with ME/CFS, as it seems the scientific tide is turning favourable to them, and both research-funding and real bio-medical scientists are coming together to try to resolve ME/CFS and indeed quite a few other diseases, inspired by the original Lombardi/Mikovits paper, then supported and extended by the Lo/Alter paper.

But Margaret Williams is also right about the Wessely school proponents:

They will continue to try to have their pseudoscientific ways succeed - and mind that their ways are NOT scientific, rational or reasonable ways, but are in fact pseudoscience, and indeed not just pseudoscience but a quite well-organized politico-bureaucratic movement among psychiatrists, in England, in the US and elsewhere, supported by quite a few prominent journalists, media-personalities, politicians and politicized academics from soft sciences/cargo cult sciences, that are bent on power and influence in the worldwide health-industries, and do so by publishing pseudoscience as if it were real science, by abusing their academic titles as if these are sufficient proofs of their scientific competence (phony) and personal integrity (corrupt), and by organizing themselves politico-bureaucratically in academic institutions, in NGOs and quangos, and as prominent writers in the media on health and science matters, subjects that are there treated again in terms of what is in fact pseudoscientific propaganda, but is pretended to be solid if popularly expounded science. [1]

2. Feynman vs Wessely

So let me inquire a bit into the question what Richard Feynman would have thought about Simon Wessely (links to the Wikipedia, so that you can compare the two).

As it happens - and I have read far more of Feynman than of Wessely, I should add, in the course of the last 40 years - although Feynman died the previous century, it is quite clear what he would have thought of Wessely: A scientific fraud and a quack, heavily involved in pseudoscience having little to with real science other than its external form or mode of presentation, and in fact working for the financial and political interests of psychiatrists and politicized governmental and university bureacracies, out for power over the politics, decisions and the institutions involved in medicine and health.

And as emerges from On the DSM-5TM  Wessely, White, Gerada (Mrs. Wessely), Sharpe, Calder, Crawley c.s. stand not alone in psychiatry, for it seems that their brand of pseudoscientific psychiatry has succeeded in taking over the American Psychiatric Association (APA), that in turn seems bend on redefining all of medicine in their plans for the the DSM-5, namely in such ways as

(i) make it far more easy for psychiatrist to find patients whose insurances provide the psychiatric incomes, namely by psychologizing and psychiatrizing all disease and indeed almost everyone's lives (see my Brit. Jn. Psychiatry: 78% of the British are not sane for some evidence and consequences);

(ii) make it far more easy for health-insurers and governments and NGOs to save money on doing real medicine on really ill people: Turn the patients' diseases into a mostly mental abberations that do not need research or medication, apart from psychotherapy; and

(iii) empower the pseudoscientists by systematically furthering their getting leading positions in both the academic institutions and the media.

And the pseudos succeeded the last three decades or so in realizing a large part of their agenda as sketched, as can be seen from On the DSM-5TM  and as should be clear to anyone who knows about the declines of education and the universities in the same period:

Political types, from my own quasi-revolutionary generation of student-activists, all bend for power, none really interested in real science (for which few had or have the capacities), have succeeded in taking over most of the universities outside those studies which really take talent and/or hard work, and at least in Holland, Germany and it would appear in England, have taken over most of the institutional powers in the universities in these countries (nominating since decades almost only political types to positions of power in academia, wherever - as in the majority of the soft sciences, that form by far the greatest departments with the most students in almost any university - this can be done without the nominees having more than a mock interest in real science).

So let me turn to the question what kind of science pseudo-scientists engage in. There are several kinds, in fact, but the main one is indeed what Feynman described as Cargo Cult Science, which he describes as follows:

So we really ought to look into theories that don't work, and science that isn't science. I think the educational and psychological studies I mentioned are examples of what I would like to call cargo cult science. In the South Seas there is a cargo cult of people. During the war they saw airplanes land with lots of good materials, and they want the same thing to happen now. So they've arranged to imitate things like runways, to put fires along the sides of the runways, to make a wooden hut for a man to sit in, with two wooden pieces on his head like headphones and bars of bamboo sticking out like antennas--he's the controller--and they wait for the airplanes to land. They're doing everything right. The form is perfect. It looks exactly the way it looked before. But it doesn't work. No airplanes land. So I call these things cargo cult science, because they follow all the apparent precepts and forms of scientific investigation, but they're missing something essential, because the planes don't land.

The science that isn't science proceeds by means of so called 'evidence-based science', which is in the Wesselye and APA Newspeak precisely not what its label says it should be seen as: It consists of papers full of baloney, but with statistics of which - thanks to computers - the columns and rows add, and that will deceive most who did not get a thorough course in methodology + statistics, or do not have a clear mind themselves to start with, all of which is the case with large parts of students and academic staff in the soft sciences.

Note also that, completely unlike the South Seas cargo culters, this pseudoscience is very successful and works, namely as pseudoscience:

It does take people in (most medical doctors also don't really know statistics and methodology well or at all); it does get published in what are nominally scientific journals; it does get high ranking in citation-indexes, for pseudoscientists these days have many pseudoscientific friends in academia, and they all praise, quote or at least cite each others' 'scientific' papers; it does give pseudoscientists status and credit, and power and influence in academia as if they were real scientists; and most importantly, it totally deceives and befuddles the media and politicians, of whom hardly anyone is scientifically qualified (in a real science), and it does give pseudoscientists politically important posts, or at least the ears and help from political and bureaucratical powerful persons, who indeed may sincerely believe they are helping science and patients by helping what are in fact pseudoscientists, failed scientists, but very able and highly organized politico-bureaucratic conmen.

And now my readers no doubt want more Feynman, who saw the same forces at work in his own day as I see in mine, and who indeed strongly sympathized with the physicist John Archibald Wheeler, who at one point started a program 'Drive The Pseudos Out Of The Workshop Of Science', a program that much deserves resurrecting.

Well... here is what makes a Wesselyan pseudoscientist, in principle and in the beginning, that is without him or her necessarily being political, politicized, or specially dishonest, as yet, with my bolding:

Now it behooves me, of course, to tell you what they're missing. But it would be just about as difficult to explain to the South Sea Islanders how they have to arrange things so that they get some wealth in their system. It is not something simple like telling them how to improve the shapes of the earphones. But there is one feature I notice that is generally missing in cargo cult science. That is the idea that we all hope you have learned in studying science in school--we never explicitly say what this is, but just hope that you catch on by all the examples of scientific investigation. It is interesting, therefore, to bring it out now and speak of it explicitly. It's a kind of scientific integrity, a principle of scientific thought that corresponds to a kind of utter honesty--a kind of leaning over backwards. For example, if you're doing an experiment, you should report everything that you think might make it invalid--not only what you think is right about it: other causes that could possibly explain your results; and things you thought of that you've eliminated by some other experiment, and how they worked--to make sure the other fellow can tell they have been eliminated.
As any reader of the prose of Wesselytes, Reevesians, Bleijenbergians etc. can know, these pseudoscientist do NEVER indicate anything about any scientific research, such as real bio-medical research, that does not square with what they present as 'scientific findings'.

As close readers of Wesselyte prose can know, Wessely is a master saying the thing that is not while seeming to speak truly. Indeed, the whole concept of 'evidence based science', as it is practised by Wesselytes and by the APA since the DSM-IV (1996), is a lie from top to bottom, usually made up from unfounded claims, insinuations, redefinitions of terms, and outright lies and an enormous amount of very immoral evasions and ommissions, such as for over two decades refusing to admit, discuss or give vent to the fact that the World Health Organization completely disagrees with Wesselytes' stance on the causes and indeed content and context of ME/CFS, and never give any clue that this is so, while also never naming or citing any real evidence from real scientists that refutes or contradicts his pseudoscience.

Here is how Feynman put it, with my boldings added:

Details that could throw doubt on your interpretation must be given, if you know them. You must do the best you can--if you know anything at all wrong, or possibly wrong--to explain it. If you make a theory, for example, and advertise it, or put it out, then you must also put down all the facts that disagree with it, as well as those that agree with it. There is also a more subtle problem. When you have put a lot of ideas together to make an elaborate theory, you want to make sure, when explaining what it fits, that those things it fits are not just the things that gave you the idea for the theory; but that the finished theory makes something else come out right, in addition.

This is what Wesselytes do not do, do not want to do, indeed cannot do without being quickly found out even by laymen. Instead, they write propaganda disguised as 'evidence based science' - which requires no talent at all other than a firm desire to deceive, delude, lie and pretend.

Indeed, Feynman was on to many things professor Wessely used for decades, and indeed may have stolen from him, for Wessely is not a great mind in any way or sense, or by any stretch of imagination, whereas Feynman was a genius, highly gifted in diverse ways also:

The easiest way to explain this idea is to contrast it, for example, with advertising. Last night I heard that Wesson oil doesn't soak through food. Well, that's true. It's not dishonest; but the thing I'm talking about is not just a matter of not being dishonest, it's a matter of scientific integrity, which is another level. The fact that should be added to that advertising statement is that no oils soak through food, if operated at a certain temperature. If operated at another temperature, they all will-- including Wesson oil. So it's the implication which has been conveyed, not the fact, which is true, and the difference is what we have to deal with.

That is precisely one of the favourite techniques of Wesselytes: Innuendo, selection, misdirection, suggestion - all the arts of propaganda that can be seen in and learned from advertising, and even without the need for the little bit of art that give ads such allure as they have, for nearly all published science in journals is not well-written, nor does it need to be, as long as it reports the facts straight and does make no faults of commission or omission. [2]

Here are two final bits by Feynman, in which he makes his meaning about what science is and ought to be clear. The last paragraph is the end of his essay:

I'm talking about a specific, extra type of integrity that is not lying, but bending over backwards to show how you are maybe wrong, that you ought to have when acting as a scientist. And this is our responsibility as scientists, certainly to other scientists, and I think to laymen.
(...)
So I have just one wish for you--the good luck to be somewhere where you are free to maintain the kind of integrity I have described, and where you do not feel forced by a need to maintain your position in the organization, or financial support, or so on, to lose your integrity. May you have that freedom.

This is a freedom that urgently needs to be restored to large parts of the Western universities. I have written about that e.g. in  Real science & real psychology = joy, Mandarins with an IQ of 115, Yahooism & democracy "I want to be read" but it is not my theme here and now, which was to show Margaret Williams' excellent take on the present situation around ME/CFS, and Richard Feynman's excellent exposition about Cargo Cult Science applied to Wessely and company.

I end with John Archibald Wheeler's call:

'Drive The Pseudos Out Of The Workshop Of Science'

and with my sincere hope this may be starting to happen in the US.


      

                                                            
       

P.S. This may need some corrections of typos, that will have to be made later. Indeed, this remark was also made at the end of yesterday's piece, in which I have made some corrections of typos (I hate spelling-correctors) and one addition at the end of the last note, that should have been there, for which reason I repeat it here too:

See again: my Real science & real psychology = joy, Mandarins with an IQ of 115, Yahooism & democracy, "I want to be read", and the main reason to remove me, briefly before my MA in philosophy, from the study of philosophy:

39 Questions about the qualities
of education and government
in the Netherlands

(As I remarked before, questions and evens as just related make my position with ME in Amsterdam rather different, also legally speaking, than the position of other persons with ME.)

-- Sep 9, 2010: Repaired some typos and added some links and boldings (otherwise unaltered).

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. 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)

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.


[1] For what it is worth: I am far too intelligent not to know that conspiracy theories are rarely true and often a form of paranoia - but indeed, I am not talking conspiracy theory but I am talking about - the offshoots of - the levelling and politication of the largest part of the Western universities, namely much of the departments of sociology, political science, pedagogy, psychiatry, anthropology, psychology, philosophy, literature studies and more, by (1) the students' movements of the sixties (that e.g. in Holland went on till well into the eighties); by (2) the levelling of education all-over the board, in the names of 'equality' and 'democracy',  from Kindergarten till university, that enables now around 1/2 of the persons with the right age to become a B.A. or M.A. in something that is mostly pseudoscience; and by (3) the rise of postmodernism - see my Scientific Realism versus Postmodernism - that undid all standards, including truth, morality, and talent, and replaced them by utter relativism, except as regards the many excellences and rights to tenure and endless subsidies and funding for postmodern horrors. (See Sokal Affair).

[2] Here is how Wessely opened an article on an other subject in 2009:

I run a clinic for sufferers with chronic fatigue syndrome (CFS), sometimes also called myalgic encephalomyelitis (ME), and known to a previous generation of neurologists as ‘neurasthenia’ or ‘nerve weakness’.

This is typical of his mode of operation: "CFS" has been dreamt up by Wessely or one of his cronies, and not something that has been under that name investigated or researched by many non-Wesselytes, simply because it is a falsification from the start; "CFS" is not sometimes also called" "ME"", but on the contrary ME was the name of the disease both in England and according to the WHO, that ruled in 1969 that ME is a seriously debilitating neurological disease, and added in 1991 that it is not a psychiatric disorder, two items of highly relevant totally indisputable knowledge Wessely systematically does not mention himself, if he possibly can; and neither "CFS" nor "ME" is "known to a previous generation of neurologists as ‘neurasthenia’ or ‘nerve weakness’": These are all lies invented by Wessely from King's College, London, and by James Jones and Bill Reeves, of the American CDC, and they did so in the nineteeneighties. Fundamentally, it is slander or defamation or character-assassination, and is used that way by Wessely, White and Sharpe on purpose:

Psychiatrists have a huge personal financial interest in having patients - and what is easier than to claim that people with hitherto unexplained diseases, that therefore cannot be treated systematically by medical doctors, "in fact" do not have any disease, but are just neurotic, malingering or simply insane? The payments from the health-insurances into their bank-accounts only can improve that way, quite dramatically also, and après vous le déluge, hein?!

And to arrange those huge psychiatric joys, it just happened to be necessary that someone like me gets discriminated for 32 years on minimal dole, without any benefits, and with many hassles, while having the best possible academic degrees, all acquired when ill, and quite visibly and clearly being so. And similarly for hundreds of thousands in Great Britain, including Margaret Williams: Hundreds of thousands of ocassions for abuse and discrimination, all to keep more British psychiatrists employed and well off, and effective politically because the politicians often are false as psychiatrists or else misled by them:

It is cheaper for the State and for health-insurors to have seriously ill people mistreated by psychiatrists that on "medical" pseudoscientific principle exclude these ill people from benefits and from bio-medical research or help, than to organize the funding, research, and medicines to help hundreds of thousands of ill people.

And thus it went, and thus it goes:

"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

And as long as kicking the ill pays well, there will be plenty eager kickers of ill or defenseless people around, as the Gulag and the German concentration-camps also showed, especially if one can do the kicking under cover of (being) real professors of psychiatry.

Maarten Maartensz

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