Saturday, 29 December 2012

Arise, Sir Simon

http://www.meactionuk.org.uk/Arise-Sir-Simon.htm

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” (http://www.senseaboutscience.org/pages/2012-maddox-prize.html).

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 – http://www.meactionuk.org.uk/The-Rewards-of-Science.htm).

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 (www.independent.co.uk/voices/letters/ios-letters-emails--online-postings-2-december-2012-8373777.html).

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: http://www.bbc.co.uk/news/health-20850694). 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: http://www.meactionuk.org.uk/Denigrationbydesign.htm).

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)
(http://www1.va.gov/rac-gwvi/docs/GWIandHealthofGWVeterans_RAC-GWVIReport_2008.pdf).

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

http://bible.christiansunite.com/Morning_and_Evening/chme1225.shtml

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 -

http://www.meactionuk.org.uk/Lady-Mar-to-Simon-Wessely.htm

PDF file - http://www.meactionuk.org.uk/Lady-Mar-to-Simon-Wessely.pdf

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 ……..in 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)
http://www.meactionuk.org.uk/Lady-Mar-to-Simon-Wessely-12th-Dec-2012.htm
PDF file -
http://www.meactionuk.org.uk/Lady-Mar-to-Simon-Wessely-12th-Dec-2012.pdf

Correspondence Update between the Countess of Mar and Simon Wessely (15 and 17 December 2012)
http://www.meactionuk.org.uk/Mar-Wessely-correspondence-update-171212.htm
PDF file -
http://www.meactionuk.org.uk/Mar-Wessely-correspondence-update-171212.pdf  

Latest correspondence between the Countess of Mar and Professor Wessely (21 December 2012)
http://www.meactionuk.org.uk/Wessely-Mar-latest-correspondence.htm
PDF file -
http://www.meactionuk.org.uk/Wessely-Mar-latest-correspondence.pdf

Monday, 3 December 2012

The Saga of Science

http://www.meactionuk.org.uk/the-saga-of-science.htm

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.

Wednesday, 21 November 2012

Jesus is Calling

Another poem from "Echoes of Eternity" by Michael R Abbott; used with permission.

Jesus is Calling

Why do you sit by the highway today,
Begging for silver and gold?
The Prince of All Glory is passing this way
And He'll give you treasures untold.

Sin-stained, lonely and poor,
Lost in the darkness of night;
Jesus can open your eyes,
Flooding your soul with His light.

Why are you dressed in the rags of your sin?
New raiment the Lord will Provide:
Clothed in His righteousness, new life begins;
To purchase these garments He died.

Sin-stained, lonely and poor,
Lost in the darkness of night;
Jesus can open your eyes,
Flooding your soul with His light.

Why are you blind to God's glory and grace?
Jesus is calling to you.
He'll open your eyes, you may gaze on His face;
The promise is faithful and true.

Sin-stained, lonely and poor,
Lost in the darkness of night;
Jesus can open your eyes,
Flooding your soul with His light.

So rise at His bidding and make no delay,
Jesus the Saviour is near.
Cry out for mercy and pardon today;
He'll heal you and cast out your fear.

Sin-stained, lonely and poor,
Lost in the darkness of night;
Jesus can open your eyes,
Flooding your soul with His light.

Wednesday, 14 November 2012

Professor Simon Wessely’s award of the inaugural John Maddox Prize for his courage in the field of ME and Gulf War Syndrome

This is a new article by Professor Malcolm Hooper (with members of the ME community).  It is long, but I would recommend reading it – it is certainly an eye opener!  To read the article, please click here.

I am not going to reproduce the whole article here, but the following is a small section from it -
Expressing his opposition to Wessely’s model of ME/CFS, Dr Harvey Alter, Chief of Clinical Studies and distinguished investigator at the US National Institutes of Health (one of the world’s foremost medical research centres) said in 2010 at an FDA Blood Products Advisory Committee meeting: “I’m absolutely convinced that when you define this disease by proper criteria, this is a very serious and significant medical disease, and not a psychological disease. It has the characteristics of a viral disease”.

Moreover, Professor Luc Montagnier (who in 2008 won the Nobel prize for discovering the AIDS virus), Honorary Member of the European Society for ME, is on record thus: “Scientists have already uncovered a lot about ME, but this information does not reach professional healthcare personnel, and the disease is not taken seriously. It is about time this changes” (http://esme-eu.com/home/experts-launch-think-tank-for-mystery-disease-article37-6.html).

This is an important point: it is not that accurate information and knowledge are unavailable; it is that in the UK, the information and knowledge are being systematically blocked by the extremely efficient and effective networking of the Wessely School who ensure that the gap between bench and bed is filled with their own views about “CFS/ME”.

Additionally, Professor Ian Lipkin, Director, Centre for Infection and Immunity, Columbia University, said on the record that patients with ME have a particular pattern of immunoreactivity, indicating a persistent disease process: “Back in the mid to late 1990s…I looked at these Chronic Fatigue Syndrome patients, many of them coming out of a clinic that was run in the Karolinska, which at that point was one of the best clinics for CFS in the world…..I said these patients are clearly sick in some way. They have some kind of immunological activation…I am convinced, after working in this field for a very long time, that this is a bona fide syndrome”. ME/CFS was described as “this crippling disease” (transcript of podcast with Professors Vincent Racaniello and Ian Lipkin, 18th September 2012, This Week in Virology).

Please see also: 

Ruffled feathers? (18th November 2012)
Margaret Williams
http://www.meactionuk.org.uk/Ruffled-feathers.htm


Monday, 12 November 2012

Help ME!


I first wrote a little leaflet called “Help ME!”, giving some basic information about ME, a few years ago and I have recently revised and updated it. It can be downloaded as a PDF file and it prints onto both sides of a single piece of A4 paper which is then folded into three. I am happy for it to be downloaded, saved, printed out and used as required – as long as it is not altered in any way. To download the leaflet, please click here.


Thursday, 1 November 2012

Mum’s New Book

I am pleased to say that Christian Focus has published a second book written by Mum. A4 size and 52 pages long, “God’s Special Tent – The Story of the Tabernacle and What Came After” is part of the Christian Focus for Kids Activity Series. It centres on the Tabernacle of Old Testament times and includes a cut-out model of the Tabernacle which children can make for themselves.

The description on the Christian Focus website is as follows -

Do you like tents? Perhaps you've gone camping, staying in one place and then moving to another. God's people the Israelites lived in tents in the wilderness as they moved from Egypt to the Promised Land. God gave them instructions about how to make a special tent - where He could be present among His people. Find out about how they made this tent and what special furniture and curtains were placed inside it. How did they build the tent and how did they carry it from one place to another? The priests made sacrifices to atone for the sin of the people, but the tabernacle or tent of meeting was a place that taught the people about the One Who was going to save them from their sin for good - Jesus Christ, the promised Messiah. His sacrifice would mean that no other sacrifices were needed and that people could worship God all around the world.

Just in case you missed Mum’s previous book, “Read with Me”, which was first published in 2006 and is still available, you can find a review of it on the Tabernacle Bookshop website – click here.


Thursday, 18 October 2012

Tim and Lois's Travels October 2012

Tim and Lois, my brother and sister-in-law, have been on their travels again.  I have inserted below a number of their photos which I hope you will enjoy.


Santorini, Greece


Haifa, Israel

Haifa, Israel
Jerusalem, Israel

Jerusalem, Israel

Jerusalem, Israel
Tower of David Museum, Jerusalem, Israel
















The Wailing Wall, Jerusalem, Israel
Port of Alexandria, Egypt
Ruins at Pompeii, Italy
Ruins at Pompeii, Italy
Ruins at Pompeii, Italy 

Ruins at Pompeii, Italy


Mount Vesuvius, Italy

Wednesday, 10 October 2012

European ME Alliance Petition to the European Parliament 2012

http://www.euro-me.org/news-Q42012-001.htm

The members of the European ME Alliance have put forward a petition to the European Parliament in Brussels. EMEA feel there is an urgent requirement to address the perception, treatment and research into myalgic encephalomyelitis.

Letters have been sent to all of the Alliance's members of the European Parliament –

Dear Members of the European Parliament,

The European ME Alliance (EMEA) is a grouping of European organisations that are involved in supporting patients suffering from myalgic encephalomyelitis (ME) - (in some countries ME is embraced in the term ME/CFS or even CFS) and the Alliance campaigns for a strategy of biomedical research into ME in order to provide treatments and cures for this neurological disease.

The Alliance consists of member organisations from Belgium, Germany, Holland, Ireland, Italy, Norway, Spain, Sweden, Switzerland, Denmark and UK.

The representatives of the European ME Alliance wish to ask for your support of the attached petition. The petition seeks to ensure that member states of the EU abide by, enforce and respect the following: -

- that myalgic encephalomyelitis is treated as a neurological disease
- the medical and civil rights of people suffering from ME are respected
- the most recent criteria for diagnosis of ME are used by member states
- biomedical research on ME is fostered and funded by the EU
- discrimination against people with ME is stopped

EMEA Belgium will represent the Alliance in any discussions with the EU that are held in Brussels.

We hope we can count on your support for this petition.

Yours Sincerely,

The Chairman, Board and Members of the European ME Alliance

European ME Alliance
www.europeanmealliance.org

Belgium - ME/CFS Association
Denmark - Dansk ME Forening
Ireland - Irish ME Trust
Italy - Associazione Malati di CFS
Germany - Fatigatio e.V.
Netherlands - Het Alternatief
Norway - Norges M.E. Forening
Spain - Liga SFC
Sweden - Riksföreningen för ME-patienter
Switzerland - Verein CFS Schweiz
UK - Invest in ME

PETITION

The legal and medical situation of ME (Myalgic Encephalomyelitis) and CFS (Chronic Fatigue Syndrome) patients

Myalgic Encephalomyelitis (ME) was accepted by the WHO as a neurological disease in 1969.

In some countries ME is referred to as Chronic Fatigue Syndrome (CFS). In 1993 CFS was added as an addendum to ICD-10 but the “fatigue”-based definition of CFS still causes confusion and problems for patients, as was stated by Mrs. Androulla Vassiliou, former European Health Commissioner.

ME can occur in outbreaks: one was described for the first time in 1934.

Experts have placed ME in the same category as cancer and late stage AIDS regarding quality of life and suffering.

We therefore request the following:

- to respect the WHO ICD-10-Code G93.3 for ME as a neurological disease and ensure that the Member States implement this in their Health Care System;
- to respect the rights of ME patients – including children - in all Member States;
- to endorse as diagnostic criteria for ME the Canadian Consensus Criteria and the developing International Consensus Criteria;
- to encourage the development of biomedical research.

An estimated 1,200,000 very sick ME patients in Europe are waiting for parliament to recognise the WHO ICD-10-Code G93.3.

References

1. www.who.int/classifications/icf
G93.3 Postviral fatigue syndrome
            Benign myalgic encephalomyelitis (ME)
2. Carruthers B, Jain AK, De Meirleir KL, Peterson DL, Klimas NG, Lerner AM, Bested AC, Flor-Henry P, Joshi P, Powles AP, et al.: Myalgic encephalomyelitis/chronic fatigue syndrome: clinical working case definition, diagnostic and treatment protocols. Journal of chronic fatigue syndrome 2003, 11(1):7-115.
3. Carruthers BM, van de Sande MI, De Meirleir KL, Klimas NG, Broderick G, Mitchell T et al. Myalgic encephalomyelitis: International Consensus Criteria. J Intern Med 2011;270:327–38.
4. Nacul LC, Lacerda EM, Campion P, Pheby D, Drachler MD, Leite JC, Poland F, Howe A, Fayyaz S, Molokhia M: The functional status and well being of people with myalgic encephalomyelitis/chronic fatigue syndrome and their carers. BMC Public Health 2011, 11(1):402.
5. J. Mark Van Ness, Staci R. Stevens, Kylie T. Kumasaka, Harnoor Singh, Betsy Keller, Daniel L. Peterson, Jose Montoya and Christopher R. Snell: A diagnostic test for the identification of metabolic dysfunction. Conference abstract 9th IACFS/ME clinical and research conference, Reno, March 7, 2009.
6. Brown, M. M., Bell, D. S., Jason, L. A., Christos, C. and Bell, D. E. (2012), Understanding Long-Term Outcomes of Chronic Fatigue Syndrome. J. Clin. Psychol., 68: 1028–1035. doi: 10.1002/jclp.21880
7. Twisk, F.N., Maes, M., 2009. A review on cognitive behavioral therapy (CBT) and graded exercise therapy (GET) in myalgic encephalomyelitis (ME)/ chronic fatigue syndrome (CFS): CBT/GET is not only ineffective and not evidence-based, but also potentially harmful for many patients with ME/CFS. Neuro Endocrinology Letters 30 (3), 284–299.
8. KCE report: Evaluation of CBT/GET therapy. https://kce.fgov.be/nl?SGREF=5268&CREF=11648
9. Fluge Ø, Bruland O, Risa K, Storstein A, Kristoffersen EK, et al. (2011) Benefit from B-Lymphocyte Depletion Using the Anti-CD20 Antibody Rituximab in Chronic Fatigue Syndrome. A Double-Blind and Placebo-Controlled Study. PLoS ONE 6(10): e26358. doi:10.1371/journal.pone.0026358
10. Maes M, Twisk FN: Chronic fatigue syndrome: Harvey and Wessely's (bio)psychosocial model versus a bio(psychosocial) model based on inflammatory and oxidative and nitrosative stress pathways. BMC Med 8:35.
11. Broderick G, Fuite J, Kreitz A, Vernon SD, Klimas N, Fletcher MA. A formal analysis of cytokine networks in chronic fatigue syndrome. Brain Behav Immun. 2010 Oct;24(7):1209-17.
12. Komaroff AL, Cho TA: Role of infection and neurologic dysfunction in chronic fatigue syndrome. Seminars in Neurology 2011, in press.

For further information

1. Klimas NG, Salvato FR, Morgan R, Fletcher MA. Immunologic abnormalities in chronic fatigue syndrome. J Clin Microbiol 1990; 28: 1403-10. [PMID: 2166084]
2. Myhill S, Booth NE, McLaren-Howard J. Chronic fatigue syndrome and mitochondrial dysfunction. Int J Clin Exp Med 2009; 2: 1-16. [PMID: 19436827]
3. Peckerman, A., LaManca, J.J., Dahl, K.A., Chemitiganti, R., Qureishi, B., Natelson, B.H., 2003. Abnormal impedance cardiography predicts symptom severity in chronic fatigue syndrome. American Journal of Medical Sciences 326 (2), 55–60.
4. Streeten DH, Thomas D, Bell DS. The roles of orthostatic hypotension, orthostatic tachycardia and subnormal erythrocyte volume in the pathogenesis of the chronic fatigue syndrome. Am J Med 2000; 320: 1-8. [PMID: 10910366]
5. Kerr JR, Burke B, Petty R, et al. Seven genomic subtypes of chronic fatigue syndrome/myalgic encephalomyelitis; a detailed analysis of gene network and clinical phenotypes. J Clin Pathol 2008; 61: 730-739. [PMID: 18057078]
6. Tirelli U, Chierichetti F, Tavio M, Simonelli C, Bianchin G, Zanco P, Ferlin G. Brain positron emission tomography (PET) in chronic fatigue syndrome: preliminary data. Amer J Med 1998; 105: 54S-8S. [PMID: 9790483]
7. Goldstein JA. Chronic Fatigue Syndrome: The Limbic Hypothesis. Binghamptom, New York: Haworth Medical Press; 1993:19, 116.
8. Chia J, Chia A, Voeller M, Lee T, Chang R. Acute enterovirus infection followed by myalgic encephalomyelitis/chronic fatigue syndrome and viral persistence. J Clin Pathol 2010; 63: 163-8. [PMID: 19828908]
9. Pall ML. Explaining “Unexplained Illnesses”: Disease Paradigm for Chronic Fatigue Syndrome, Multiple Chemical Sensitivity, Fibromyalgia, Post-Traumatic Stress Disorder, Gulf War Syndrome and Others. Bighamton, NY: Harrington Park (Haworth) Press, 2007.
10. Meeus M, Nijs J, McGregor N, Meeusen R, De Schutter G, Truijen S, Frémont M, Van Hoof E, De Meirleir K.: Unravelling intracellular immune dysfunctions in chronic fatigue syndrome: interactions between protein kinase R activity, RNase L cleavage and elastase activity, and their clinical relevance. In Vivo. 2008 Jan-Feb;22(1):115-21.PMID:18396793 [PubMed - indexed for MEDLINE]

For an objective view of the establishment intrigue surrounding ME we recommend:

Magical Medicine: How to Make a Disease Disappear by Professor Malcolm Hooper [click here]

Professor Hooper has made a formal complaint to the Minister of State responsible for the Medical Research Council.

Wednesday, 3 October 2012

All The Bible!

Terry J Blackman

I read the Bible little, and so little did I read:
Much of the precious Scripture was unknown to me indeed.
I liked the shepherd Psalm and loved Isaiah fifty-three,
And the fifteenth of Corinthians, though long, it seemed to me;
But often made excuses: much too busy, or, too tired,
And thus despised the Holy Book by God Himself inspired.
But then a thought occurred to me, a thought divine I’m sure:
To read the whole of God’s good Word, and not think this a chore.
And as I read it more and more, what joy did it afford,
To read and feed on every word as spoken by the Lord.
The Bible! all the Bible! Yes, each jot and tittle there:
By grace I’ll read and learn it all, with reverence and prayer.

Oh Book of heavenly wisdom, full of power and majesty!
An endless source of treasure, and a lens by which I see
The glory of the Saviour, all the vileness of sin,
The meaning of affliction, and the joy of truth within.
When reading of the saints and godly patriarchs of old;
The holy Tent, the Temple, full of glory, rich in gold;
Of God’s ways with the people of the chosen Hebrew line,
Of visions so amazing, of great mysteries divine:
In every part I find the Spirit’s message is all one -
Revealing the Messiah, our Redeemer, God’s dear Son.
The Bible! all the Bible! Yes, each jot and tittle there:
By grace I’ll read it, every word, with reverence and prayer.

Now first the books of Moses open up their plenteous stores,
And show to us our origin, with types and righteous laws.
In Joshua comes the conquest of the promised land of rest,
The war and strife of Judges, and then Ruth - how sweet and blessed!
The books of Samuel give the reigns of Saul and Jesse’s son;
The First of Kings: the peaceful times of prudent Solomon.
Then reading on in Kings we find that some kings were quite just,
While others did no good, for molten idols were their trust.
The Chronicles begin anew with Adam, the first man,
And trace the sacred history till captivity began.
The Bible! all the Bible! Yes, each jot and tittle there:
By grace I’ll read it, day by day, with reverence and prayer.

In Ezra and Nehemiah the holy city is reclaimed,
While Esther shows God’s ceaseless care, although He is not named.
In Job we see God’s will is best e’en in the darkest days,
The Psalms are full of heartfelt prayer and joyful songs of praise.
Then Proverbs and Ecclesiastes godly fear impart,
And Song of Songs reveals the love which fills our Bridegroom’s heart.
Isaiah, Jeremiah and Ezekiel, Daniel too,
And twelve more “Minor Prophets”, show the great things God will do,
And speak of the Messiah divine, of Whom we’ll read much more
In those New Covenant Scriptures which await us on before:
The Bible! all the Bible! Yes, each jot and tittle there:
By grace I’ll read it carefully, with reverence and prayer.

Four Gospels tell our hearts about our Saviour Jesus Christ,
One Who was perfect, and in love for us was sacrificed;
How, risen and ascended now, He still is just the same,
And says to all His followers, “Go forth: My word proclaim”!
In Acts the apostolic band their Master’s Word make known,
And meet with love the hatred which so oft to them is shown.
The Epistles then so richly God’s most precious thoughts display,
To expound the Christian teaching, and to guide the Christian’s way.
The Revelation then concludes the wondrous Book of God:
Christ, glorified in heaven and earth, rules nations with a rod.
The Bible! all the Bible! Yes, each jot and tittle there:
By grace I’ll read it o’er again, with reverence and prayer.

Oh my dear fellow-Christian, please allow me to say this,
With earnestness, entreaties, and with holy emphasis:
Don’t just read favourite portions, for it is the Word of God,
And we’re His much loved children, all redeemed with precious blood.
This Book is from our Father, God, its theme is His dear Son,
And by the Spirit every word’s inspired, yes, every one.
Oh you, who know and love the truth, God’s words do not neglect:
From every part, yes every part, a blessing true expect.
So give much time to God’s dear Book, (your mind for this was made),
Your life will be more holy, and your heart no more afraid.
The Bible! all the Bible! Yes, each jot and tittle there:
Oh let us read it, through and through, with reverence and prayer!

Taken from the Bible League Quarterly Magazine, October - December 2012, Issue 451.

Used with kind permission of the author.

Thursday, 20 September 2012

ME is no more 'in the mind' than Multiple Sclerosis. When is the world going to get that?

http://poultonblog.dailymail.co.uk/2012/09/me-no-more-in-the-mind-than-multiple-sclerosis.html

Sonia Poulton, Daily Mail, 19 September 2012

Ever since I first wrote on the subject of Myalgic Encephalomyelitis - or to afford it a more user-friendly title, ME - earlier this year for MailOnline, http://www.dailymail.co.uk/debate/article-2141230/All-mind-Why-critics-wrong-deny-existence-chronic-fatigue.html I have been overwhelmed by the response from patients and their loved ones.

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

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

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

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

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

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

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

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

What an injustice.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

And, to the relief of ME sufferers worldwide, that understanding cannot come a moment too soon.