Saturday, 29 December 2012

Arise, Sir Simon

Margaret Williams, 29 December 2012

On 6th November 2012 the charity Sense about Science, a sibling of the Science Media Centre, announced that Professor Simon Wessely had been awarded the inaugural John Maddox Prize “for his ambition and courage in the field of ME (chronic fatigue syndrome) and Gulf War syndrome, and the way he has dealt bravely with intimidation and harassment when speaking about his work and that of colleagues” (

Wessely’s plentiful published and spoken views on the psychosomatic nature of ME are well-known, and people will recall that in 2000, Anthony Komaroff, Professor of Medicine at Harvard, said: “There is now considerable evidence of an underlying biological process which is inconsistent with the hypothesis that (ME/CFS) involves symptoms that are only imagined or amplified because of underlying psychiatric distress. It is time to put that hypothesis to rest” (The Biology of the Chronic Fatigue Syndrome. Anthony Komaroff. Am J Med 2000:108:99-105).

Twelve years later, Wessely was honoured for his “courage” in continuing to promote exactly that hypothesis (The rewards of science in the UK –

Scientists and others who legitimately and politely challenge Wessely’s disproven beliefs are accused of being part of a “fanatical lobby” (Independent on Sunday: “ME bitterest row yet in a long saga”: 25th November 2012) and of being involved in a campaign to undermine his work and credibility (

Indeed, in the above letter that is on the website of the Independent on Sunday, Professor Peter White and his 26 co-signatories confirmed that the “accusations” against Professor Wessely are “false” and that “it was because of accusations like this that Professor Wessely received the award in the first place”.

Now we see that Professor Wessely has been awarded a knighthood in the New Year Honours for his work on Gulf War Syndrome.

It can hardly be forgotten that Wessely has denied the very existence of a Gulf War Syndrome: in their official report published in The Lancet (Health of UK servicemen who served in Persian Gulf War; Catherine Unwin, Anthony David, Simon Wessely et al; Lancet 16 January 1999:353:169-178), the authors claimed they found an association with the “belief” of exposure to a chemical attack, but they failed to identify a specific illness among Gulf War veterans and concluded that there is no such thing as Gulf War Syndrome. In an accompanying supportive article, the late Stephen Straus was categoric: “The cumulative studies now confirm that there is no unique Gulf War syndrome”.

Thirteen years later, acknowledging his honour, Wessely says: “There may not be a distinct illness -- Gulf War Syndrome is a misnomer—Rather it’s an illness or health effect” (Military health expert knighted: 28thDecember 2012: Wessely’s comment must be seen in the light of the fact that “illness” is now deemed by some to be a “behaviour” and in order to be afforded legitimacy, one must have a “disease” (The Scientific and Conceptual Basis of Incapacity Benefits (TSO, 2005) written by Gordon Waddell and Mansel Aylward; published by the Department for Work and Pensions).

Nine months after Wessely et al published their negative findings in The Lancet, a two-year study carried out by Dr Beatrice Golomb for the US Defense Department did not support their conclusions. On 20th October 1999 at 2.20am it was announced on the BBC World Service that, as a result of the Golomb study, the Pentagon had released a statement confirming that it had changed its policy and now admitted that there could be a link with Gulf War Syndrome and the use of pyridostigmine bromide (PB) anti-nerve gas tablets (which UK troops were forced to take during the conflict in the Gulf). This cast significant doubt on the reliability of Wessely’s findings.

Subsequently the 2008 report of the Research Advisory Committee on Gulf War Veterans’ Illness categorically identified concomitant exposure to PB and organophosphate pesticides as causative agents in GWS (see below).

Evidence presented at the Second World Congress on CFS and Related Disorders (including GWS) on 9-12th September 1999 in Brussels included findings in GWS of inadequate cardiovascular support (Professor Ben Natelson); the possible role of environmental factors (Professor Paul Levine); reports of 600 cases of anaphylaxis in US Marines (Professor Garth Nicholson), and evidence that the Gulf War conflict had been the most toxic war in military history (Professor Malcolm Hooper), who told of the injection of vaccines which included biological warfare agents and of exposure to chemical warfare agents including mustard gas and sarin. When they were ordered to take the NAPS (Nerve Agent Protection Sets) tablets, some troops experienced classic autonomic effects such as sweating and uncontrollable diarrhoea, which resulted in their protection suits being soiled with their own excrement. In addition there was exposure to depleted uranium (DU) and to toxic smoke from oil-well fires and exposure to solvents and biohazards such as malaria, Leishmaniasis, fleas, scabies, sand flies and mosquitos.

It was easy to design studies which gave the desired result, said Hooper, but there was little doubt that the troops had received a cholinergic triple whammy, and he pointed out that almost the entire cholinergic system would be damaged and/or rendered dysfunctional. Could a person still function? The answer was No – the central nervous system was affected, as were the autonomic and peripheral nervous systems. Hooper discussed various diagnostic tests which ought to have been carried out on the Gulf War veterans, including neurological, immunological, cardiovascular, renal and liver function tests, as well as tests for genetic markers, for assessment of oxidative status, for bone density, for pancreatic and gut function and permeability, and for levels of micro-nutrients (Denigration by Design? Update November 1999:

On his own admission, in his official study of Gulf War veterans, Wessely performed no clinical examination or laboratory investigations. He worked only from a self-report questionnaire sent only to selected veterans, yet he confidently concluded that there is no such thing as Gulf War Syndrome and the MOD accepted his findings.

In 1999, statistics showed that in the US, 9,000 Gulf War deployed personnel were dead (and these were previously fit and healthy young men) and that there were 230,000 medical cases. From the UK alone, 53,000 troops were involved in the Gulf War but it was not known how many were ill or dead because the only epidemiological study on UK veterans was the one done by Wessely et al which failed to identify a specific Gulf War Syndrome.

A review of all the epidemiological data by Lea Steele for the Research Advisory Committee on Gulf War Veterans’ illness in Washington DC published on 17th November 2008 found between 25 – 30% of deployed and prepared-for-deployment veterans were sick. In the UK this equates to 13,000 to 16,000 veterans. Many of these have died and the remainder live with unacknowledged chronic multi-system conditions with deleterious health and social effects on wives and children.

This 2008 report runs to over 450 pages and contains more than 1,800 references. Its most important findings are that PB and NAPS tablets were causally linked to GWS and that pesticides, especially organophosphates, were causally linked to GWS.

The report states that GWS has the following features:
  • it is a complex, chronic, organic illness
  • many veterans show evidence of physical brain injury
  • it is not a stress-related condition or due to PTSD
  • features that have been demonstrated by extensive investigations including advanced brain imaging include abnormalities of brain structure (including cancer); impaired function of the autonomic nervous system; cardiovascular and respiratory dysfunction and disease; neuroendocrine abnormalities resulting in serious physical impairment, Parkinson’s Disease, multiple sclerosis and motor neurone disease; altered control of cerebral blood flow; alterations in immune system and function; genetic variation in enzymes responsible for protection against neurotoxins; damage to the skeletal system at tissue and cellular level; increased cancer risk, especially brain, bowel, blood, bone, bladder and lung (associated with the principle toxins and DU)

Notwithstanding this evidence, it seems that nothing has changed the belief of Simon Wessely, the “leading researcher into the health of military personnel” whose work has “dramatically improved mental health services for the Armed Forces” that there is no Gulf War Syndrome.

Perhaps Sir Simon and those who nominated him are unaware of two reports in the journal Neuro-epidemiology that once again seem to prove him to be entirely wrong about Gulf War Syndrome.

A study of meteorological and intelligence evidence tracking the fall-out of chemical weapons and the bombing of chemical weapons stores shows that what the troops reported was correct (though denied by the authorities at the time) and provides direct confirmation of repetitive exposure to low level sarin nerve agent resulting from that fall-out (James J Tuite and Robert W Haley; Neuro-epidemiology 2013:40:160-177).

A companion study shows that exposure to low level sarin nerve agent in fall-out from the bombing by coalition forces in the initial air war contributed to chronic illness which is “manifested by fatigue, fever and night sweats, memory and concentration problems, pathogen-free diarrhoea, sexual dysfunction, chronic body pain and other symptoms compatible with autonomic nervous system dysfunction and damage to the brain’s cholinergic system, referred to as Gulf War illness” (Robert W Haley and James J Tuite; Neuro-epidemiology 2013:40:178-189).

Is it not curious -- disturbing even – that such honours should be bestowed upon a psychiatrist whose beliefs and doctrine do not accord with the published science and whose beliefs have been so compellingly disproven?

Tuesday, 25 December 2012

Christmas Day

A Very Happy Christmas to readers of my blog!

From the Bible - Luke chapter 2 v 8-20

And there were in the same country shepherds abiding in the field, keeping watch over their flock by night. And, lo, the angel of the Lord came upon them, and the glory of the Lord shone round about them: and they were sore afraid. And the angel said unto them, Fear not: for, behold, I bring you good tidings of great joy, which shall be to all people. For unto you is born this day in the city of David a Saviour, which is Christ the Lord. And this shall be a sign unto you; Ye shall find the babe wrapped in swaddling clothes, lying in a manger. And suddenly there was with the angel a multitude of the heavenly host praising God, and saying, Glory to God in the highest, and on earth peace, good will toward men. And it came to pass, as the angels were gone away from them into heaven, the shepherds said one to another, Let us now go even unto Bethlehem, and see this thing which is come to pass, which the Lord hath made known unto us. And they came with haste, and found Mary, and Joseph, and the babe lying in a manger. And when they had seen it, they made known abroad the saying which was told them concerning this child. And all they that heard it wondered at those things which were told them by the shepherds. But Mary kept all these things, and pondered them in her heart. And the shepherds returned, glorifying and praising God for all the things that they had heard and seen, as it was told unto them.”

C H Spurgeon’s Morning Devotional for December 25th

Behold, a virgin shall conceive, and bear a son, and shall call his name Immanuel.” Isaiah 7 v 14

Let us today go down to Bethlehem, and in company with wondering shepherds and adoring Magi, let us see him who was born King of the Jews, for we by faith can claim an interest in him, and can sing, “Unto us a child is born, unto us a son is given.” Jesus is Jehovah incarnate, our Lord and our God, and yet our brother and friend; let us adore and admire. Let us notice at the very first glance his miraculous conception. It was a thing unheard of before, and unparalleled since, that a virgin should conceive and bear a Son. The first promise ran thus, “The seed of the woman,” not the offspring of the man. Since venturous woman led the way in the sin which brought forth Paradise lost, she, and she alone, ushers in the Regainer of Paradise. Our Saviour, although truly man, was as to his human nature the Holy One of God. Let us reverently bow before the holy Child whose innocence restores to manhood its ancient glory; and let us pray that he may be formed in us, the hope of glory. Fail not to note his humble parentage. His mother has been described simply as “a virgin,” not a princess, or prophetess, nor a matron of large estate. True the blood of kings ran in her veins; nor was her mind a weak and untaught one, for she could sing most sweetly a song of praise; but yet how humble her position, how poor the man to whom she stood affianced, and how miserable the accommodation afforded to the new-born King!

Immanuel, God with us in our nature, in our sorrow, in our lifework, in our punishment, in our grave, and now with us, or rather we with him, in resurrection, ascension, triumph, and Second Advent splendour.

Such News …

Such news we heard today,
News of the Saviour’s birth:
So might the shepherds say
When Christ was born on earth.

Such sights we saw today,
Of shining star so bright:
So might the wise men say
Who saw the world’s true light.

Such news for us today,
For us the Saviour came.
That babe laid in the hay
Bears heaven’s highest name.

Good news for us today,
That God in His great love,
Has made for us a way
To live with Him above.

This news for us today,
Tells of the One who came,
In death to bear away
His people’s sin and shame.

This news we’ll gladly tell
To all amid earth’s strife.
Christ o’ercame death and hell;
His cross, our way to life.

© Jean Stapleton 2012.

For God so loved the world, that he gave His only begotten Son, that whosoever believeth in Him should not perish, but have everlasting life” (John 3 v 16).

Monday, 17 December 2012

The Meaning Of Christmas

The following poem is taken from “Echoes of Eternity” by Michael R Abbott; used with permission.

The Meaning Of Christmas

The tinsel on the Christmas Tree,
The presents all around,
The trappings of this Christmastime
In every home are found.
The turkey on the table,
The Christmas Pudding too:
This is the Christmas we enjoy,
But is it Christmas true?

Let not this festive season
Pass by without a thought
For Him whom shepherds worshipped,
For Him whom wise men sought.
You celebrate His birthday,
Yet don't invite Him in;
Such action does not please Him,
It’s mockery and sin.

Yet some remember gladly
The Babe of Bethlehem,
And this is all that Christmas
Will ever mean to them.
His life beyond the cradle
To them is mystery:
The Christ, the world's Messiah,
Their blind eyes cannot see.

God loved the World and gave us
His Son, Immanuel,
Who shed His blood at Calvary
To save men's souls from Hell.
The Baby in the manger
Gives hope and promise, true!
But, at the Cross He saved us,
His death gives life anew.

For God so loved the world, that he gave His only begotten Son, that whosoever believeth in Him should not perish, but have everlasting life” (John 3 v 16).

Tuesday, 4 December 2012

The Countess of Mar writes to Simon Wessely

The following is an open letter from The Countess of Mar to Professor Simon Wessely. It can be found online at -

PDF file -

4 December 2012

Dear Professor Wessely

I note from recent correspondence arising from the report in the Independent on Sunday on 25 November 2012, that you believe me as guilty of harassing you. Perhaps it is not surprising that I regard this belief with something less than amusement.

I wonder whether you recall the time when you were just getting your initial research into Gulf War Illnesses off the ground in mid-1998? I had given evidence to the Royal College of Physicians and Royal College of Psychiatrists Inquiry on Low Level Exposure to Organophosphate Sheep Dip which was published in November 1998. Your colleague, Professor Anthony David, was a member of the inquiry. I recall receiving a letter from you both to the effect that you were sorry that I had had reason to criticise your Gulf War research in the course of my evidence when, in fact I had not mentioned Gulf War research. You also asked to meet me. I recall correcting you on the facts and stated that I had no desire to meet you. I then received a number of telephone calls and letters, both to my office and my home, demanding that I meet you. I have to say that I regarded this as harassment at the time, though I did not see the need to contact the police. Eventually I agreed to accept your invitation to lunch at Gordon’s Wine Bar behind Charing Cross Station.

I brought with me Ms Emily Green, an eminent scientific journalist, with your agreement. I shall never forget being astounded to find that, when we arrived at the appointed time, 12.30 pm, you had arrived early; bought your own lunch, and presented us with a bottle of water. Prior to the meeting you were very firm about the time, as you had patients to see at 2.00 pm. We discussed a number of topics, including whether you knew Elaine Showalter and whether you had ever advised the Department of Social Security on subjects such as ME. Some of your responses we found were economical with the truth to put it mildly. It was very shortly before 3.00 pm that you finally got to the point – you wanted me to help persuade the Gulf War Veterans to complete your questionnaire!

I think you need to understand that this encounter left a rather enduring and nasty taste in my mouth, not least because I had to buy my own lunch when you had invited me to lunch. Neither was I impressed by your deviousness in response to straightforward questions. This caused me to look more deeply into what you were doing and into your associations, most of which are now public knowledge. This, in part, helps to explain why I have reason to criticise some of your work.

I have also attended some of your lectures and have read reports of others. I have heard and read the extraordinary way in which you and some of your colleagues have denigrated people with ME and have tried (and to some extent succeeded) to persuade others that people with ME are not really ill at all; they merely have ‘aberrant illness beliefs’. You have deliberately obfuscated the terminology surrounding ME by linking it with chronic fatigue and attempting surreptitiously to reclassify it as a psychological condition under the WHO ICD classifications. In doing this you appear to have totally ignored the first exhortation to doctors – “First do no harm”. Yet when this beleaguered population has reason to look at your work critically you deny what you have said and written and plead persecution and harassment from the very people you purport to be helping. I would have thought that any thinking person would ask themselves why this is happening; would ask the individuals who are clearly angry what is angering them, and try to put things right. You are in an exalted position – a Professor of Psychiatry with all sorts of awards. Why on earth do you need to play the victim?

My personal experience with organophosphate poisoning taught me that there are members of the medical profession who are not prepared to “listen to the patient for they will probably tell you the diagnosis”. I am fortunate in that I am articulate and determined and I have been put into a position where I can speak for others less fortunate than I am. If that means offering honest criticism of individuals who, I believe, are hurting others who are not in a position to speak for themselves I am prepared to take any brickbats that come my way.

So much of the friction comes from people not knowing what you think because you are so inconsistent. For example, in your presentation to the full Board Meeting of the DLAAB on 2 November 1993 which was considering those with ME/CFS you said: “Benefits can often make people worse”, yet in your letter to Dr Mansell Aylward at the DSS you wrote: “CFS sufferers should be entitled to the full range of benefits”. Given that, in 1990 you had written: “A number of patients diagnosed as having myalgic encephalomyelitis ……… were examined …… many of them, the usual findings of simulated muscle weakness were present” (Recent advances in Clinical Neurology, 1990, pp 85 – 131), I am wondering how a genuine condition can also be simulated and am curious to know what your position is regarding benefits for people with ME.

I note that you do not hesitate to condemn statements from your critics as “the same old stuff that they have been saying about me for years”. People with ME could be equally justified in their belief that you perpetuate the beliefs that you have long held that ME is a psychosocial behavioural problem and that you have totally failed to embrace the vast body of peer reviewed scientific literature that demonstrates damage to neurological, cardiac, endocrine and other systems in people with ME. I believe it was you who recommended that GPs should not indulge patients with too many investigations. This has meant that people with conditions that could have been treated have been misdiagnosed and neglected.

I have spoken strongly in defence of people with ME who have been traduced by you and your colleagues who have embraced the psychosocial behavioural model. I am not ashamed of having done so for they have few who will defend them publicly. The scientific evidence is heavily weighted against ME being ‘all in the mind’ so, by deduction it must be the economic argument that prevails, to the disadvantage of the estimated 250,000 people who have ME. have you ever considered the savings to the exchequer and to the insurance industry if people with ME were properly investigated and treated so that they could return to work or education?

I take no pleasure in asking “bogus” questions and making speeches in the Lords. I would very much sooner your profession got its act together and spent some time studying the real effects of ME on patients and looking for solutions. We all recognise that chronic illness, whatever it may be, presents with psychological aspects. CBT can only be a management tool and GET reportedly does more harm than good for patients with ME/CFS as opposed to chronic fatigue.

Patients must be able to trust doctors and scientists. You have betrayed this trust. A scientist should be able to accept honest criticism. You have misconstrued criticism and turned it into harassment. You have much to answer for, so it ill behoves you to employ diversionary tactics in an attempt to portray yourself as the injured party.

I have written this as an open letter because so much of this debate has been in the open. It would be helpful if you would make your position with regard to people with ME/CFS utterly clear. Do you still believe the ME/CFS is “perpetuated by dysfunctional beliefs and coping behaviours” as you wrote in your 2002 CBT Manual for Therapists? If you do, please will you explain why no one got better with your model. If you do not, would it not be sensible for you to withdraw it instead of continuing to make the facts fit your theories as they appear to have been in the PACE statistics where you were in charge of the Clinical Trial Unit.

I look forward to hearing from you.

Yours sincerely

Countess of Mar

Another letter from The Countess of Mar to Simon Wessely (12 December 2012)
PDF file -

Correspondence Update between the Countess of Mar and Simon Wessely (15 and 17 December 2012)
PDF file -  

Latest correspondence between the Countess of Mar and Professor Wessely (21 December 2012)
PDF file -

Monday, 3 December 2012

The Saga of Science

Professor Malcolm Hooper, 2nd December 2012

Today’s Independent on Sunday publishes a letter signed by 27 medical professionals - who may be described as supporters of the psychosocial model of ME/CFS - in which they refer to the harassment of some researchers working in the field.

It is regrettable that the wholly unacceptable actions of a few people have not only undermined the efforts of those who, for many years, have sought to engage scientifically with proponents of the psychosocial model but have tarnished the reputation of all ME/CFS sufferers. Further, it has allowed a narrative to develop, namely that ME/CFS patients are prejudiced against psychiatry and are resistant to the possible role of psychological factors in their illness. A siege-like mentality has developed between patients and doctors and it is essential, if progress is to be made, to move beyond this impasse towards a constructive dialogue based on evidence, so that if the psychosocial model is found wanting, a commitment can be made to look for alternative causal mechanisms.

Much of the recent frustration has stemmed from the presentation of PACE Trial data in The Lancet (published online February 18 2011) and other journals. For example, in their accompanying editorial in The Lancet, Bleijenberg and Knoop wrote: "PACE used a strict criterion for recovery...In accordance with this criterion, the recovery rate of cognitive behaviour therapy and graded exercise therapy was about 30%", with another journal reporting "a recovery rate of 30-40%" (BMC Health Serv Res. 2011; 11: 217, three of the authors being signatories to the letter to the Independent on Sunday).

Both these reports are wrong, because no recovery data from the trial have been published, and although The Lancet's senior editor, Zoe Mullan, acknowledged this error and promised to publish a correction, to date (22 months after publication) no correction has been issued, allowing this misrepresentation to continue.

The above are but two of many well documented discrepancies surrounding the publication of selective results of the PACE Trial.

In their letter, the signatories say that the harassment: “risks undermining research, preventing the development of new treatments and discouraging specialist clinicians from entering the field. We fear that this may have resulted in patients not receiving the best treatments or care”.

Quite apart from the fact that the signatories’ favoured treatment may not be the best for people with ME/CFS, the signatories make no distinction between “extremists” and those who continue to present reasoned, evidence-based critiques of the psychosocial model. Moreover, they appear to have conflated criticism of a particular psychiatric theory with the wholesale rejection of psychiatry per se: being critical of certain psychiatrists’ beliefs about the causation of ME/CFS is not the same as being anti-psychiatry.

The psychosocial model has been subject to challenge because when its predictions were tested empirically, such as in the FINE and PACE Trials, objective data from these trials show clearly that ME/CFS is not perpetuated by dysfunctional thinking and deconditioning as the model posits.

People are angry, but that's because a small group of psychiatrists who have consumed such a large share of research funding for twenty years have acted in a way that is perceived to be wholly unscientific ie. when the evidence (even from their own studies) shows their ideas to be wrong, they either ignore the evidence (eg. FINE), or appear to misrepresent it (eg. PACE), and the system which is meant to protect against this - academic peer review - has completely failed to prevent the dissemination of papers which contain egregious errors.

It is also the case that many patients and clinicians alike feel let down by the wider scientific community for not speaking out against apparent abuses of process such as the post hoc revision of primary outcome measures in the PACE Trial which made it possible for a participant to deteriorate after treatment but still be described as “recovered”. Had such a situation applied in a drug trial there would, rightly, have been an outcry.

For the proponents of the psychosocial model to continue to ignore the biomedical evidence from world-class experts such as Drs Nancy Klimas, Mary Ann Fletcher, Anthony Komaroff, Kathy and Alan Light and Dan Peterson must surely conflict with a clinician’s first duty to patients, as rejection of that evidence may carry the risk of iatrogenic harm.

As Professor Komaroff wrote in Nature Reviews Neuroscience, September 2011: “Many of the documented abnormalities involve the central and autonomic nervous systems. In my experience, most sceptics are unaware of the extensive literature citing such abnormalities and become less sceptical upon reading it”.

Professor Klimas was equally clear about those who dismiss the biomedical evidence, saying at the IACFSME Conference in September 2011: “Look at the studies of many patients – and they tell you the same. It is not difficult. I mean immune findings in ME / CFS is proved. It is not controversial, and it is not just a hypothesis. There is immune activation, it is dysfunctional cells and a significant degree of malfunction of the immune system….I have no difficulty (saying) with great certainty that the immune system in ME/CFS is not working as it should”.

Given the well-established body of biomedical evidence and the failure of CBT and GET to produce objective benefits, people diagnosed with ME/CFS (and the clinicians who support them) struggle to comprehend the continued propagation of the doctrine that they can be cured and be returned to employment by psychotherapy, when the evidence from the psychosocial studies shows this is not the case.

It is time for a more productive dialectic so that patients can receive treatment and support based on sound evidence and researchers can work without fear.