Myth, Money and Self Delusion

As both science and accountancy begins to inform those who invested heavily in the XMRV hypothesis of disease causation, a presentation of what cash actually bought the WPI lab coat drama alive, seems in order.

No free lunches at the privately funded research table.

Surprisingly there are still articles being written that continue to sow confusion over the foundational finances of the Whittemore Peterson Institute.  An important part of the mythology that describes the Whittemore family as saviours of M.E/CFS research  and which has been much repeated by enthusiasts of the HGRV (formerly XMRV) hypothesis of M.E/CFS causation, is the proposition that the Whittemore family gave $5 million to the WPI. No such donation was ever made. What is the case, as written on this Blog in February 2011, is that via the Whittemore Family Foundation, something over $1 million was contributed by Annette and Harvey Whittemore  University of Nevada as contribution to the building of the University’s Center for Molecular Medicine .

The WPI has accommodation within the CMM building, the basis for this occupancy arrangement is not on public record, although it may be relevant that the WPI donated $100,000 to UofN in 2009.  The total cost of the CMM building project was $77million, $16 million of which was met by Nevada tax payers, the balance being met by University of Nevada financial bonds, together with sums donated by the Whittemore family. Total transfers from the Whittemore Family Foundation to the University of Nevada in the years 2007-2009 amounted to  $1,571,168, matched to a number of stated budgetary purposes.

Mo’ Money 

Funding of the WPI, and the meeting of costs of  administration and research can be broken down into three main categories, income gained from fundraising activities, funds donated by the Whittemore family, and Federal Research Grants.  In 2010/11 a number of Social Network supported grants were also received by the WPI. 

Although WPI was created in 2006, its first year of  operating was in 2007, when its stated income and was: 

• Income: 2007 

Public support                              $37,083

Government Grant                       $400,00

Bank Interest                                 $1,106

In 2008 WPI’s declared income significantly increased due to additional grant income and a transfer of $540,172 from an entity called the Nevada CFS Foundation (subsequently Neuro-Immune Research Institute), of which Annette Whittemore was listed as President. The source of  the NCFSF’s income 2006-2008 was fundraising together with donations from the Whittemore Family Foundation totalling $214,000. The NCFSF contribution was accounted as part of WPI’s 2008 publicly supported funds

• Income: 2008

Fundraising Events                      $514,685

Public support                              $739,345

Government Grant                       $600,000

Bank Interest                                   $8,314

In 2009 WPI declared reduced income from both fundraising events and public support. The Whittemore Family Trust gifted $100,000 to the WPI in 2009, coincidentally the same amount gifted by the WPI to the University of Nevada.

•  Income: 2009

Fundraising Events                      $324,720

Public support                              $287,204

Government Grant                       $600,000

Bank Interest                                   $7,635

Where’s My Grant ?

The WPI has chosen not to account separately for the various Federal sources of its grant funding, it is not required to do so, however it is good practice for Institutions to be explicit about what funds they have received for what purpose. There is often difficulty in relating grant income to annual accounts because grant periods frequently cut across accounting years. The US Government does helpfully list grants given, by Recipient, in the case of the WPI six grants are currently listed .

In 2008 WPI received $189,667 from the HRSA   under award number C76HF09846.  transaction date 07-11-2008 . 

In 2009 a further $565,290 was paid under the award number with an award date of  09-09-2009.

Also in 2009 the WPI received the first annual payment of a multi year award from the National Institute of Allergy and Infectious Diseases(NIAID) under award number R01AI078234 , the payment amount being $335,000 with a transaction date of 24-SEP-2009.

The total amount of Federal Grant awarded to the WPI  in 2008/2009  was £1,089,957 which accords reasonably well with the $1,200,000 declared by the WPI , however the declared sum of $400,000 for 2007 does not appear to relate to any Federal award. There is however the matter of $2,000,000 appropriated by the Nevada State legislature for:

“the use of the Institute for Neuro-Immune Disease[sic] “the construction  of, and furnishings, and equipment for, a facility relating to  the research and treatment of neuro-immune disorders.”

It seems likely that of the $1.6 million declared by the WPI as being ‘received’ Government Grants in the years 2007 - 2009, something in the region of $500,000 came from the Nevada State legislature.

The NIAID R01AI078234 award was matched with $311,316 from the same source in 2010, and a further $302,866 was due in September 2011. In total,  US Federal sources list in excess of $1.7 million having been paid or due to the WPI between 2008 and 2011. The WPI 2010 accounts are not currently available but it is clear that WPI, far from being supported independently of Government as claimed by some commentators, has been heavily dependent on Government funding.

Good People Cost

One aspect of WPI finances that stands out rather strongly is it’s burgeoning wage bill. From just $146,373 in 2007, salaries rose to $354,803 in 2008 and $545,748 in 2009.  Dr Mikovits was paid  $146,154 in 2008 and $185,000 in 2009, an amount which substantially above comparable norms and a surprisingly large amount given the size of the institution. 

* Account information of all US non profit organisations, including for the WPI and WFF, is available from Guidestar in the form of .pdf versions of Form 990 tax returns. The most recent three year’s return are available without cost although registration may be required.

Chronicle of an Embarrassment Foretold

10 months ago I wrote on an internet forum, something that has shown to be prescient:

Progress in science frequently involves two diametrically opposing principles; there's competition between researchers - and there is co-operation between researchers, very often both principles apply to involved research groups at the same time. For this to work, all the participants have to have a degree of confidence in the basis on which each group is working. Where confidence is lacking then a particular laboratory or even a whole institution will be avoided by others working in the field, this will have effects of unwillingness to take on replication, confirmation or validation studies, of unwillingness to peer review and ultimately reduce confidence on the part of publishers. Mikovits and WPI have only themselves to blame if other researchers do not take them seriously, the comments on the ERV blog do represent serious issues for WPI even if the posters are not themselves established researchers the attitudes expressed are likely to be widely held in the medical research field. Mikovits and Whittemore may be happy to wrap themselves up in a Wakefieldesque flag, championing some mythical disease causation - but that will do nothing to advance the cause of M.E/CFS research, in fact it will probably have a highly negative effect because M.E/CFS will once again be associated with 'crank' pseudoscience in the minds of many researchers.

Sadly the damage is already done, and I'm sure that as with Wakefield's followers who refuse to accept the antivax agenda is nonsense, that long after XMRV has been consigned to 'minor interest' status, there will be those invoking mass conspiracy for the research leading nowhere. As Mikovits said - "a negative result doesn't mean you are not [XMRV] positive" - yeah right, just keep buying the tests, we'll get you a positive result eventually !?! What serious scientist would want to associate themselves with that kind of madness, it's a career killer at the very least for anyone committed to objective investigation.

Shortly after writing those two paragraphs  I completed “Creating a Research base isn’t like buying a Football Team” for this blog and thereafter rather lost momentum in writing about what was looking ever more like a train wreck in slow motion.  For the intervening period the headline M.E/CFS story has been entirely subsumed into the XMRV and WPI charade and while the wreck has been evolving there’s been little to write about other than what was clearly going to be an unpleasant transfer of momentum as the Mikovits/Whittemore skytrain achieved negative motion. Not that I predicted the nature of the collapse, but given the florid nature of the WPI Götterdämmerung, a summary of events might be now worthy of record. 

Too good to be true 

In 2009 the magazine Science published a study Detectionof an Infectious Retrovirus, XMRV, in Blood Cells of Patients with ChronicFatigue Syndrome authored by researchers associated with the Whittemore Peterson Institute.  The study was contentious for a number of reasons, not least of which was that it appeared to offer evidence of a single infective agency common to a large percentage of individuals diagnosed with M.E/CFS, such a position is problematic given the diverse presentation of patients falling within the M.E/CFS ambit. The Science article also raised urgent concern amongst Blood Donation Authorities because it appeared to suggest that a XMRV was a potential pathogen that could be communicated via blood donation – numerous studies were initiated to address these concerns necessitating application of large amounts of research funding. Some 38 studies were carried out, yet none provided any support for the WPI study, Science Magazine took the unusual step of issuing an Editorial ‘expression of concern’ and subsequently part of the article was retracted at the request of two of the co-authors.    

No further publication was offered from the WPI until May 2011 and even then this new article  offered no elucidation of the issues of developing concern regarding the 2009 article, despite the new article being predicated on the testing regime used in the 2009 study. The May 2011 article claimed to identify an inflammatory signature specific to XMRV positively tested M.E/CFS sufferers, however as the XMRV test had never been independently validated it is unclear whether the signature was either XMRV or M.E/CFS specific.

At the end of September 2011, doctoral student Abbie Smith, a consistent critic of the WPI XMRV work, published via the ERV blog  a telling critique of the use of  the contradictory usage of data by Dr Judy Mikovits, the senior researcher at WPI .  The material presented in the ERV blog was soon picked up by other researchers and attracted the attention of sciencejournalists .  The credibility of both WPI as an institution, and Mikovits as individual researcher seemed to be impugned and a mature response in defence of their relative positions from both would have been expected by most observers of science. What happened instead only served to bring further opprobrium upon the WPI and Dr Mikovits.

When science fails, there’s always religion

 In January of 2011 I wrote a blog entry entitled  Saints and demons in the Cult of The Chronically Fatigued where I highlighted what I saw as a deeply unhealthy sanctification by some M.E/CFS affected people of  Dr Mikovits, Annette Whittemore and Andrea Whittemore. I subsequently wrote about what I saw as the inherent failings of the WPI, particularly the role played in the organisation by Annette Whittemore:  Creating a Research base isn’t like buying a Football Team .  While the intemperate adulation exercised by some M.E/CFS affected people and the internal failings of the WPI were not causally linked,  together these two elements created a toxic brew in which the inevitable ‘failure to launch’, and consequent breakdown of professional relationships, produced in turn a cognitive dissonance amongst the formerly adulatory claque.  The ‘patient population'  to which both Dr Mikovits and Annette Whittemore made effusive appeals for support, has now become enthralled to a near religious hysteria in which demonisation and martyristic conspiracy are being invoked to explain ‘the Downfall’. While other ‘devils’ in the M.E/CFS firmament have faded from the excited view of ‘advocates’, a new ‘demoness de jour’ has been revealed in all her evil . Once perceived as a fragrant deity of all that was light in the enshadowed world of M.E/CFS research,  Annette Whittemore confirmed her allegiance  to the Dark Side (© G.Lucas)  by sacking Dr J.Mikovits from the employ of the WPI.

For a researcher to part company with an institution under less than happy circumstances is not exactly a rare occurrence – differences of research direction, management styles or simply clashing egos underly many researcher relocations. However these 'separations of the ways' usually occur with little public pronouncement, and in most cases decorum is the order of the day. This however is not the way with WPI and Mikovits. Within hours of Mikovits being told she was surplus to requirements, a variety of Internet Blogs and Forums were alight with tales of the immoderate way in which Annette Whittemore verbally terminated Mikovits’ employment and the stage was set for an unseemly outplaying of an embarrassing drama.

It’s the money stupid

 The Mikovits/Whittemore split generated especial anxiety amongst those who claim M.E/CFS affectedness and who are strongly wedded to the belief that M.E/CFS is a retroviral disease. The WPI with Mikovits at its helm has been the sole institution to have given the ‘M.E/CFS = retrovirus’ proposition any credence. The expulsion of Mikovits saw ' believers' rapidly invoking conspiracy (evil forces ‘getting at’ the WPI) theories together with expressions for the fear of martyrdom (both figurative and literal) of Dr Mikovits. A key part of the narrative soon emerged  - the question of who would continue to enjoy the Federal Research funds that had been awarded for a further two years.  It appeared, via proxy Blogs, that Mikovits was claiming the grant award was to her in person, while this was contested by the WPI. The contention by Mikovits was particularly strange because there is long established  precedent,  that the research contract is between funder and Institution. Nevertheless Mikovits’ supporters promoted the meme that only Mikovits could be trusted to continue the work on putative retroviruses, which Mikovits called HGRVs - Human Gamma Retroviruses, and on that basis Mikovits and not WPI was the rightful recipient of the funds. 

The final act of this increasing soapy drama was opened by the WPI when it further spiced the narrative with a claim about missing lab materials, something which was to lead to an absurdist peak of  drama – Dr Mikovits being arrested and held in jail prison on charges of theft and conspiracy.  The drama was thus complete, not only is ‘conspiracy’ implied, not only has there been betrayal by a close ally, but martyrdom has occurred. M.E/CFS as a religion finally has the objectification of suffering, not merely by the serried ranks of the poorly masses but it now has its own ‘truth bringer’ brought low by those who would follow 12 pieces of silver (actually $1 million in research funds) and who would sell out the truth to render under Caesar that which belongs to posterity. 

Never Ending Story

Mikovits seems likely to face a full criminal trial in due course, given the content of affidavits published in respect of the Civil case that the WPI has brought against Mikovits. The affidavits published on the WPI website attest to theft of research materials from the WPI by a PhD student acting at Mikovits’ behest.  A criminal trial whether or not it results in conviction, will only further cement Mikovits in the role of martyr in the eyes of her unthinking supporters  and full canonical Wakefieldisation appears entrained. The myths of HGRVs will be stitched irrevocably to Mikovits’ beatification and the believers will be wholly immune to any reasoned argument over the failings of Mikovits work.  M.E/CFS research has now has to face up to a future in which all intelligent debate is perpetually dogged by a crank fringe who in the manner of the anti-vaccination movement’s entryism into ASD advocacy, parasitises every open discussion on the epidemiology and aetiology of M.E/CFS.

 

No ‘get out of jail free’ card 

Mikovits’ travails, whatever her culpability or innocence in criminal matters must not distract from full examination of the apparent egregious systemic failures of the WPI. Mikovits, Lombardi as lead scientists and Annette Whittemore  as the de facto senior manager have at the very least to answer the many questions that M.E/CFS affected people have about the research, testing procedures and finances of the WPI. Mikovits is reported to have claimed at a conference in September,  shortly before her contract with WPI was terminated, that the VIPdx laboratory, which had been providing tests for XMRV under licence to the WPI,  would not continue XMRV-testing because the test had not been shown to be reproducible.  Mikovits statement appears to have prompted a response from  Dr Lombardi .  Lombardi’s statement notwithstanding, patients who in total paid in the region of $1 million to VIPdx for these worthless tests, the results of which confirmed for many that they had a retrovirus for which there was no known treatment, deserve elucidation of:

·       Why the WPI felt confident in issuing the test licence before independent validation had been achieved ?

·       What income accrued to the WPI from the licence agreement ?

·       What profit was made by VIPdx on the processing of XMRV tests ?

·       What financial benefit, if any accrued to Mikovits, Lombardi, members of the board of the WPI or there surrogates, from the operation of VIPdx ?

·       In the light of the VIPdx statement that  “The interpretation of the XMRV test results, as with all laboratory tests, is the responsibility of the ordering physician.” What records were kept by WPI/VIPdx of the ordering physician ?

VIPdx operated as private company and there is no legal obligation on VIPdx to make its financial circumstances public, however WPI is a public trust which has operated under claims of acting in the interests of patients. The WPI has a moral obligation to provide transparency , it should not and must not hide behind any wrong doing that may be proved on the part of its employees.

Creating a Research base isn’t like buying a Football Team

The beginnings of the WPI seem to make it inevitable that controversy would dog whatever research product the Institute would lay claim to.

All but the largest scientific Institutions, are by their very nature, forced to focus on narrow fields of enquiry, this in the main is not a handicap to progress and scientists are in the most part accepting of research briefs limited by funding availability and an individual institution’s statement of purpose. Science requires that objectivity of endeavour be paramount, limited research briefs in general actually serve the cause of objectivity, however where there is an institutional presumption of ‘value’ of research product, then objectivity will almost certainly be lost. Of course in the field of medical research many institutions have strategic ambitions, for example Cancer Research UK which funds research in both its own and other facilities, seeks to understand and ultimately cure cancer  but such a strategic ambition can not be allowed to impact upon the science of an individual project.

The reality of medical research is that the vast majority of investigations will produce either no conclusive evidence to support treatment, or will positively identify unrewarding avenues and only rarely will ‘breakthrough’ results be achieved. In such a context it is vital that all research evidence, whether or not leading to treatments or cures, is accepted by the research institution as valid science; the alternative is that the institution itself becomes partial and research evidence is validated only in terms of its ‘breakthrough’ status. When that happens the entire institution moves from being an agency of science to being an agency of propaganda.

How research institutions maintain scientific integrity is a matter of much debate and there is perhaps no absolute model of how impartiality can be ensured within internal validation of outcomes, however there are some aspects of institutional management that could be seen as representing ‘best practice’. Clear separation of roles within the management and oversight structures would seem to be essential, so that while the institution may have advocacy, research and income generation priorities, these potentially competing  aspects have necessarily to be pursued within expressly separated contexts. Without this separation, role confusion within both management and executive structures is inevitable and there is a very great danger that scientific integrity will be compromised by financial or advocacy demands.

The Whitmore Peterson Institute states its goals as:

• To facilitate and advance patient care
• Research the pathophysiology of neuro-immune diseases such as ME/CFS, fibromyalgia, atypical MS, and autism
• Develop therapeutics, diagnostics and prevention strategies for this spectrum of diseases
• To advance and support medical education and physician training

At first reading this may seem an entirely reasonable strategy for a medical institute but the line “Research the pathophysiology of neuro-immune diseases such as ME/CFS, fibromyalgia, atypical MS, and autism” bears closer consideration. What in fact does this apparently authoritative statement actually mean ?

Pathophysiology is a part of the medical lexicon, meaning “the functional changes associated with or resulting from disease or injury, so it seems that the intent of the Institute is clear, but difficulties quickly arise when considering “neuro-immune diseases”. Tellingly entering this phrase into a web browser brings as the first result  - the Whittemore Peterson Institute website which provides the information, without any other reference that:

The spectrum of neuro-immune diseases including: Myalgic Encephalomyelitis (ME/CFS), Atypical MS, Fibromyalgia and Gulf War Syndrome, share common abnormalities in the innate immune response, which result in chronic immune activation and immune deficiency.

 The term Neuroimmune Mechanisms has been used in reference to Alzheimer Disease Pathogenesis, inflamatory diesease and more generally with consideration of health and disease function which yields the description:

A novel scientific discipline that examines the complex interdependence of the neural, endocrine and immune systems in health and disease has emerged in recent years. In health, the neuroimmunoregulatory network is fundamental to host defence and to the transfer of immunity to offspring; the network also plays important roles in intestinal physiology and in tissue regeneration, healing and reproduction.

The term Neuroimmunology has been in use since the 1980s and there is a Journal dedicated to this field of study. , while the term Neuro-Immune Interactions has been used in relation to studies of Multiple sclerosis  and neuroimmunomodulation has been used in relation to psychiatric illness.   Despite these technical uses of terms which are of apparent close, or even cognate meaning with “neuro-immune” there appears to be little in medical reference sources which assist in elucidating what the WPI might mean by “neuro-immune diseases”. This lack of elucidation is compounded by the list of conditions that WPI considers to be neuro-immune in character yet which appear to have no established commonality, or in one case even an agreed medical classification. Atypical MS has no authoritative designation that is separate from the accepted spectra of Multiple Sclerosis while the identification of the developmental disorder Autism (ASD) as an immunity mediated condition appears eccentric to say the least. WPI’s additional reference to Gulf War Syndrome adds further doubt as to the underlying science of the WPI conception of “neuro-immune diseases” given the lack of any evidence of a single causative agent of the now widely recognised spectra of illnesses  affecting Gulf War veterans.  Further there is no apparent data to support the WPI claim that these disparate conditions “share common abnormalities in the innate immune response, which result in chronic immune activation and immune deficiency.” Bizarrely, considering it is much vaunted by WPI, the hypothesis that persistent XMRV infection is the cause of CFS would militate against abnormal innate immune response having a role in CFS, given that ‘normal’ immune response would be sufficient to explain the CFS symptomology in the face of persistent infection.

What any of this may actually mean is impossible to divine, but WPI seems irrevocably confused, either by its own publicity, or by the state of science in the very fields in which WPI seeks to undertake research; certainly it raises many questions about how the Institute arrived at this state.

The Whittemore Peterson Institute is a Private philanthropic foundation with tax exempt status . Since the creation of WPI its President has been Annette Whittemore who is listed as the Institute’s founder and the Whittemore Family Foundation (which shares the same registration address as WPI) donated a total of $309,000 to WPI in the years 2007-2009. WPI also received $540,572 from the Neuro Immune Research Foundation when it closed in 2008; Annette Whittemore was President of NIRF.  In addition to Annette Whittemore, the Board of WPI has only had two consistent members since its foundation, its Secretary Peggy Sullivan and its Director of Government & Public Affairs, Michael D. Hillerby;  Hillerby is a business associate of Harvey Whittemore, Annette Whittemore’s husband.  Annette and Harvey Whittemore are benefactors of the University of Nevada, and were closely involved in the development of the Center for Molecular Medicine  within which the WPI is housed. The Whittemores pledged $5 million to the building of the $77 million Centre although only a little over $1 million of this pledge was actually drawn down by the project managers.

The motivation of the Whittemores seems more than simple philanthropy, and although the various PR material promoting WPI appears explicit  in expounding the history of the Whittemore family’s concern with Chronic Fatigue Syndrome, this doesn’t explain the focus on neuro-immune diseases rather than just the CFS/M.E that affected Andrea Whittemore.  In the 2009 WPI annual statement to the IRS,  Annette Whittemore states that she works 40 hours per week (unpaid) in her role as WPI President, clearly a profound level of commitment, given that the Executive Director (Judy Mikovits) receives $185,000 for a 45 hour week. The role of President and Executive Director of WPI are closely linked, with Annette Whittemore and Judy Mikovits regularly attending conferences in both the US and Europe, and on at least one occasion Whitmore has shared in the presentation of scientific material.

Clearly to understand the nature of the Whittemore Peterson Institute, some account has to be taken of the role of Annette Whittemore, not simply as a parent seeking a Lorenzo’s Oil , or as a disinterested philanthropist distributing personal wealth, but as someone with a particular perspective on disease.  An indication how Whittemore’s own perspective has been shaped comes for her WPI bio: Annette Whittemore graduated from the University of Nevada with a BS Ed in Elementary and Special Education. Teaching children who had neuro-cognitive deficits, like those found in autism, ADD, and learning disabilities, provided her with a unique experience to later use in her pursuit of answers to her daughter's serious illness. It is difficult not to see the speculative neuro-immune disease designation as being a reflection of Annette Whittemore’s personal conception of disease processes rather than a result of a deliberative scientifically informed process.

And what if the Founder of (to give it it’s full title) the Whittemore Peterson Institute for Neuro-immune Disease has provided the Institute’s primary perspective,  does that actually matter ?  From a scientific perspective it is a matter of overwhelming importance. The basis of any scientific institution must be the capacity to address all questions, devoid of prior assumptions which are not supported by scientific certainty. WPI has not set itself the challenge of testing the validity of “neuro-immune” as a disease catergorisation, nor is it presenting hypotheses of  “neuro-immune” processes that may be tested, instead the very existence of the organisation is a statement that neuro-immune disease is an established fact, and that it is a ‘known’ that:  ME/CFS, Atypical MS, Fibromyalgia, Gulf War Syndrome and Autism are neuro-immune diseases. The research context provided by such an ‘a priori’ position must inevitably generate expectations of ‘proof’ that confirm the Institution’s pre stated position; irrespective of the quality of any research, such a context seems doomed to promote exceptional researcher bias, something which is both unnecessary and unjustifiable.    

Saints and demons in the Cult of The Chronically Fatigued

You can't convince a believer of anything; for their belief is not based on evidence, it's based on a deep seated need to believe. Carl Sagan 

 

Cultism seems an inherent human behaviour, probably an evolutionary adaptation selected for as a group cohesion process in the development of the language and culture of our homonin ancestors. Cultism frequently has harmful effects when encountered on a broad social scale but it is likely to be an inevitable group response where the group is experiencing, or (perceives that it is experiencing) external stress. Having an illness which is effectively ‘undiagnosable’, which causes individuals significant social dislocation, which has limited social and scientific acceptance and which leaves the individual feeling permanently ‘crap’, is as an effective a source of individual stress as one could want. Multiply that individual stress amongst a group defined on the basis of a shared experience of that stress and the conditions for a group psychology founded on a sense of external oppression appears ready made. Of course this doesn’t mean that CFS = cult, merely that some people affected by CFS, which may include carers as well as those who are ill, will find a degree of safety in adopting a cultified mindset. This ‘safety’ default position can also be seen in anti vaccination groups, groups of parents of developmentally challenged children and groups advocating exclusive adoption of non scientifically validated medicine and it is notable that across internet forums there is a degree of interchange between these various groups.

Shame the Devils

Cults and cultic thinking are not phenomena which are exclusively religious in character, neither are these phenomena dependant upon the presence of a charismatic founder/originator but there is a very strong propensity for cultic thinking to drive the process of ingroup  bonding by identification of a personified outgroup ‘demon’ and a personified ingroup ‘saint’. Indeed these personifications may multiply into a veritable pantheon of  white hat and black hat wearers, however in the cultified thinking found within the CFS forums there are only two major demon figures, notably one male and one female.  The senior devil, and veritable prince of lies according to the liturgy of his CFS detractors is psychiatrist  Professor Simon Wessely . The demonstration of Wessley’s commitment to the dark side was his co-authorship of a paper on the use of CBT as a treatment for CFS which demonstrated high levels of positive outcomes. CBT is considered by some of those affected by CFS/M.E to be inimical to good illness management and some even claim it is substantially injurious to CFS sufferers. There is a commonly repeated meme that Wessely specifically chose a predominantly psychiatric model of CFS to load his CBT study so as to get a ‘positive’ result.  Ironically not only did Wessley and his colleagues reference their patient recruitment terms to recommendations from a US expert conference which noted the need to exclude psychiatric diagnoses ( It was viewed as essential for the investigator to screen for psychiatric disorder using a combination of self-report instruments followed by at least one structured interview to identify patients who should be excluded from studies or considered as a separate subgroup in data analysis)  as well as to a UK expert conference where psychiatrists were in a minority, but in any case both these recruitment references were superseded by reclassifications by the CDC  and the DOH . The reclassifications rendered the Wessley et al study of CBT largely inapplicable to succeeding patient populations, so even were that study to have been anything other than scientifically sound, it was largely redundant even by the time it was published in 1997 given the CDC adoption of Fukuda et al in 1994. Nevertheless Wessely is code for evil in CFS cultism, and by association, so is psychiatry, all psychiatrists and any treatment they may recommend for CFS.

More recently recruited to be an object of vilification by cultic thinking CFS affected individuals, is Dr Esther Crawley,  Dr Crawley has doubly damned herself, firstly merely by following the guidelines of the National Institute for Health in treating CFS patients, and subsequently by proposing a study involving (in this author’s inexpert opinion, the decidedly un-scientific) Lightening Process© .  Normally a scientist like Crawley could have expected support from the science orientated MEA but even the MEA was drawn to seek a review of the ethics of the less than appositely named SMILE study. Crawley has now been cleared to go ahead with SMILE but her role as cultic hate figure  is assuredly permanent.  

Angels in the Firmament

The early heroes of CFS research have passed on , additionally the disease has never attracted the sort of media whore … cough er ..  celebrity campaigner, to whom the hordes have flocked adoringly and CFS in recent years has especially been a cause in need of a Joan of Arc to publicly suffer vicariously for the afflicted. The cultic inclined of those affected by CFS have found a trinity of Joans in the guise of Dr Judy Mikovits and Annette and Andrea Whittemore . No doubt admirable people these three individuals are now treated as personae mirabilis wholly beyond criticism, as also is the product of their sphere of creation   – the XMRV organism and its supposed role in causation of CFS.

 XMRV has ticked all the boxes for those affected by CFS and who are looking for a miracle, although the nature of the miracle has turned out to be something of a surprise. While the tenuous link between XMRV and CFS offers the hope of a ‘cure’, far more of the enthusiasm of the cultically inclined has been directed toward XMRV’s potential to accord social acceptance. Within the CFS forums the aspect of social acceptance has been mediated via a discourse which favourably compares HIV with XMRV and there is a repetition of statements to the effect that CFS sufferers are worse off than those affected with HIV !  The sheer scale of the dislocation between the perceived status of HIV affected people and the actual reality of living with that disease almost suggests a kind of collective dissociative thinking on the part of some CFS groups, it’s as if herpes suffers were seeking the public and scientific ‘acceptance’ accorded to small pox victims. 

In the way of many cultic phenomena, the force of reasoned external critique has only served to re-inforce the saintly status of the Whittemore Institute, its Director,  its pre-eminent ‘person of treatment’,  its President  and its ‘discovery’ . Every scientific paper that casts doubt on the definitive role of XMRV in CFS is explained away in terms of incompetence on the part of naysayers, contempt on the part of authority and conspiracy on the part of – well everyone from the massed ranks of psychiatry led by the evil Wessely (see above)  to Big Pharma wanting to defend profits from ineffective drugs prescribed to lifetime sufferers of CFS. The dubious positions taken by the WPI – marketing of XMRV tests to desperate CFS sufferers before any test validation has been achieved, ownership of the testing laboratory by the husband of the WPI president, Mikovits sharing a platform with disgraced and apparently medically fraudulent researcher Andrew Wakefield , the WPI President allying the WPI to an anti CBT agenda - only serve to elevate the WPI as the only true voice of the CFS ‘dispossessed’.

No matter what contrary evidence may arise, there is now no hope that the WPI ‘followers’ will be dissuaded that XMRV is the cause of their disease, every challenge to WPI or its science will be treated as an undeserved attack motivated by jealousy or competing financial and  professional interests. The demands for anti viral treatments will grow, pointless testing will take place, patients given positive test results will feel the need for treatment and when conscientious doctors refuse to prescribe dangerous and inappropriate medication, those patients will go to unscrupulous doctors happy to prescribe whatever the patient demands, merely for the consult fee. Mikovits and WPI could do much to rectify the situation – Mikovits could start being positive about all the science of XMRV, instead of perpetually defending her own work, and WPI should withdraw its anti CBT stance given that, no matter how inadequate, CBT based treatments are proven effective in helping CFS sufferers to at least to maintain a level of functionality.