Monday, 25 April 2016

GMC imposes limits on Dr Nigel Speight’s license; UK Charities Fight Back

On 20 April, the UK’s General Medical Council (GMC) imposed limits on the medical license of Dr Nigel Speight, well known for his work in protecting children with ME/CFS against inappropriate psychological intervention and removal from their families.

The order restricts him to working in NHS posts as a consultant general paediatrician and forbids him to carry out any work in relation to ME/CFS, including unpaid work. The restriction holds until July 2017.

The GMC have not published the reasons for their action.

Dr Charles Shepherd, medical advisor of the ME Association (MEA), said in a statement from the charity, “I have been in regular contact with my friend and colleague Dr Nigel Speight before, during and after the hearing to offer my full and continuing support.”

Dr Shepherd has sent a detailed letter of support from the MEA and has coordinated a joint letter of support from ME/CFS charities, professional colleagues and parents of children with ME/CFS in the UK and abroad. The MEA will release a statement on this matter next week.

Dr Speight has released the following letter:

Dear friend/supporter,

I am sorry to have to tell you of the result of my hearing before an Interim Orders Tribunal of the Medical Practitioners Tribunal Service on 20 April 2016. Most of you will be familiar with the sequence of events that led up to this case and the current GMC investigation.

At the hearing, my barrister offered that I should voluntarily withdraw from all ME related activity pending further investigation by the GMC. The panel did not accept this offer, but have imposed interim conditions on my registration mirroring the voluntary restrictions I had offered for a period [of] 15 months. The conditions prevent me from carrying out any work in relation to ME in either a paid or unpaid capacity.

The IOT Panel concluded that my practice in the field of ME/CFS may be deficient, and that it was necessary to impose an interim order for the protection of members of the public and to maintain public confidence.

On the positive side, apart from these conditions, the IOT has not restricted my practice in paediatrics in general. The IOT has not made any findings of fact and the order will be reviewed after 6 months. The IOT is not the forum in which to challenge the substance of the complaint made to the GMC.

To those of you who represent charities, I am afraid that I must with immediate effect withdraw my services as a medical/paediatric adviser. I wish you luck in finding someone to fill the gap. I will direct all patients and families with whom I have had prior contact back to your charity for advice.

Please also understand that these restrictions even extend to preventing me speaking or lecturing on the subject of ME.

To my fellow members of the authoring committee of the International Consensus report on paediatric ME/CFS, I am afraid I also have to withdraw from future contributions.

To my friends in Norway and Germany, I am afraid this means that I am unable to continue to support the three families I have already met, either informally or in legal proceedings.

Thanks for very much for all your support. Wish me luck

Best Wishes to you all in your continuing struggles to support patients and families.


Discussing his past work with children with ME/CFS, Dr Speight has said, “The most distressing cases I have encountered were those in which families were being subjected to Child Protection proceedings. This was usually due to the failure of the local doctors to officially diagnose ME, or for them to diagnose it but to imply it wasn’t a real, i.e., organic condition. This left the families open to alternative explanations such as neglect, emotional abuse or Munchausen Syndrome by Proxy.”

He added, “I was involved in more than twenty of these cases around the country and am proud to have been instrumental in reversing the proceedings in all but a small handful.”

At the time of his hearing, Dr Speight was medical advisor to the MEA, and the 25% ME Group, as well as a member of the Tymes Trust Referrals Panel. Before his retirement from his post as a consultant paediatrician in Durham in 2007, he had seen over 500 cases nationwide after a wheelchair-bound patient interested him in ME/CFS over 30 years ago. He currently does locum work.

Patients have started an e-card to gather messages of support for Dr Speight, to be delivered to him on Tuesday, 26 April, which had already gathered over 200 signatures within 12 hours of being posted online. Anyone may write a message in the card, and registration is not necessary.  You can help highlight Dr Speight’s incredible contributions to our community by adding more information to his #MEpedia page here.  Until we are certain of what Dr Speight wants and needs, we are not taking further action.

A video interview (in English) with Dr Speight by the ME Association of the Netherlands about his work protecting children can be found below.

Saturday, 16 April 2016

The Precious Blood Of Christ

C H Spurgeon’s Morning Devotional for 16th April

“The Precious Blood Of Christ”

1 Peter 1 v 19

Standing at the foot of the cross, we see hands, and feet, and side, all distilling crimson streams of precious blood. It is "precious" because of its redeeming and atoning efficacy. By it the sins of Christ's people are atoned for; they are redeemed from under the law; they are reconciled to God, made one with Him. Christ's blood is also "precious" in its cleansing power; it "cleanseth from all sin." "Though your sins be as scarlet, they shall be as white as snow." Through Jesus' blood there is not a spot left upon any believer, no wrinkle nor any such thing remains. O precious blood, which makes us clean, removing the stains of abundant iniquity, and permitting us to stand accepted in the Beloved, notwithstanding the many ways in which we have rebelled against our God. The blood of Christ is likewise "precious" in its preserving power. We are safe from the destroying angel under the sprinkled blood. Remember it is God's seeing the blood which is the true reason for our being spared. Here is comfort for us when the eye of faith is dim, for God's eye is still the same. The blood of Christ is "precious" also in its sanctifying influence. The same blood which justifies by taking away sin, does in its after-action, quicken the new nature and lead it onward to subdue sin and to follow out the commands of God. There is no motive for holiness so great as that which streams from the veins of Jesus. And "precious," unspeakably precious, is this blood, because it has an overcoming power. It is written, "They overcame through the blood of the Lamb." How could they do otherwise? He who fights with the precious blood of Jesus, fights with a weapon which cannot know defeat. The blood of Jesus! sin dies at its presence, death ceases to be death: heaven's gates are opened. The blood of Jesus! we shall march on, conquering and to conquer, so long as we can trust its power!

Wednesday, 13 April 2016

The Misrepresentation of Myalgic Encephalomyelitis in Nursing

By Greg Crowhurst

Re : Roberts D (2016) Diagnosing and managing chronic fatigue syndrome Nursing in Practice 89 

Every nurse has a duty to speak up about wrong practice, or the potential to do harm, I have grave concerns over the serious errors and the misrepresentation of Myalgic Encephalomyelitis (ME) contained in the article "Diagnosing and managing chronic fatigue syndrome".

Last year I was awarded third place in the BJN Nurse of the Year Award, for my contribution to and advocacy for Severe ME. My article “Supporting people with severe myalgic encephalomyelitis” (Crowhurst 2005) is referenced by NICE. In 2006 I represented people with Severe ME in parliament at the Gibson Inquiry (Hooper 2006). I have conducted a national (Crowhurst 2005) and local survey of Severe ME. (Crowhurst 2007) I am the author of "Severe ME, featuring justice for Karina Hansen" (Crowhurst 2013) and "Severe ME, Notes for Carers"(Crowhurst 2015). I have qualifications in Nursing, Counselling , Education and an MA. I have been caring for my wife, who has Very Severe ME, for well over two decades.

1. Wrong application of CFS to ME

The author asserts that "Chronic fatigue syndrome (CFS) " is also known as myalgic encephalomyelitis (ME)"; that is not necessarily true. Precisely what symptoms characterise chronic fatigue syndrome (CFS) is a matter of dispute, as there are many different definitions in use ( Goldin 2016). “ME/CFS” is an umbrella term, subject to many different interpretations, incorporating a wide range of meaning and poorly identified conditions. Hooper (2010) points out : "Amorphous definitions and diagnostic symptom criteria have contaminated study cohorts and corrupted research data ." Nurses need to be aware that this leads to a confusion over who has been studied in any particular research, making any treatment recommendation potentially unsafe; because of the lack of clarity of whom it might have helped or not.

Myalgic Encephalomyeltis is formally classified as a neurological disorder in the International Classification of Diseases (ICD10:G 93.3; WHO 1992). The  tone of Roberts' article, however, with its emphasis upon personality factors, depression, anxiety and behaviour change seems closer to the PACE Trial’s (which the author refers to) definition of “Chronic Fatigue Syndrome”, defined simply as a principal complaint of fatigue that is disabling, having lasted six months, with no alternative medical explanation (Goldin 2016). This is not a definition of Myalgic Encephalomyelitis.

“CFS”, according to the WHO  is only acknowledged as a colloquial, not an absolute term to represent ME. The ICD separately classifies fatigue syndromes as a behavioural (psychiatric) disorder (ICD 10:F 48).

What the PACE Trial  refers to “CFS/ME” is a condition of “medically unexplained” fatigue that is perpetuated by inappropriate illness beliefs, pervasive inactivity, current membership of a self-help group and being in receipt of disability benefits (PACE Trial Identifier, section 3.9) (Hooper 2010).

ME, which the PACE Trial,  the largest treatment trial in the history of chronic fatigue syndrome,  specifically did not study (Hooper 2011) , is a complex multisystemic metabolic-inflammatory disorder, involving profound dysregulation of the central nervous system , immune system dysfunction, cardiovascular abnormalities, autonomic nervous system dysfunction.

The author's assertion that an "underlying degenerative pathology has not been identified." may be true in the context of "CFS/ME" as defined above, but is wildly untrue in the context of neurological ME.

Decades of denial, by a very powerful psychiatric lobby underpin the author’s observation that the World Health Organization’s classification of ME as a neurological illness is not " universally accepted" ; specifically, I imagine, this means the UK psychiatric lobby ( and all those they have influenced), who have been reprimanded by the World Health Organisation (WHO) for attempting to subvert the ICD definition of Myalgic Encephalomyelitis . ( Marshall E, Williams M 2005)

It was the documented biochemical, metabolic, vascular, neurological and muscle abnormalities in ME patients that led to the WHO classification of ME as a neurological illness. As Carruthers et al (2012) , who explicitly call for the separation of ME from CFS points out, in the most accurate and up to date clinical criteria available, the International Consensus Criteria : “Myalgic encephalomyelitis, a name that originated in the 1950s, is the most accurate and appropriate name because it reflects the underlying multi-system pathophysiology of the disease”.

The author's extraordinary claim that "it is the GP and primary care nurses who can determine diagnosis for the majority of cases"; surely shows how she cannot possibly be referring to ME, the tortuous neurological disease, requiring expert assessment and diagnosis. Expert consultant-level input, almost entirely lacking in the UK, is required diagnose a complex neurological disease like Myalgic Encephalomyelitis.

It is very likely that many patients with a generalised CFS label have simply not been adequately investigated or tested and may have curable illnesses or mental health Chronic Fatigue, not Myalgic Encephalomyelitis, at all. Unfortunately the author never actually defines what she means by "CFS", what criteria she is using .

The author writes that “CFS remains a diagnosis of exclusion without a clinical diagnostic test, relying on the recording of significant clinical features and standard investigations, as outlined by NICE.”, however as patient advocate Sally Burch points out in an excellent presentation, the Director of NICE admits that the “Guideline fails to address the real issues in ME/CFS”.(Burch 2015)

Almost all the UK ME Charities condemned the NICE Guideline as unfit for purpose: such was the out- rage and disgust throughout the ME community at the way that NICE had deliberately ignored so much biomedical evidence about ME.

Over twenty renowned ME experts later provided Statements to the Court (Judicial Review of the NICE Guidelines) challenging the validity of the research that NICE used for its Clinical Guidelines. NICE relied on a handful of low quality Randomised Controlled Trials that were methodologically flawed.

To read the rest of the article, please go to -

Thursday, 7 April 2016

Jane Colby at the Named Person Supreme Court Appeal Hearing


The Chair of Trustees and Executive Director Jane Colby of Tymes Trust attended the Supreme Court Appeal hearing in Westminster, 8-9 March 2016

I wanted to speak. I hadn’t anticipated that. I wanted to speak out, but as you know, it wasn’t that kind of hearing. And yet, an unexpected moment arrived when I really wanted to give evidence. Impossible of course. This was an Appeal to the Supreme Court, a war where the weapons are points of law, wielded by lawyers, before five Supreme Court Judges with minds (as was said of Miss Marple) like a bacon slicer.

It was forensic, a relentless examination of legal arguments put forward by QCs, on the one side for the Appellants (against the Named Person/state guardian Law) and on the other, representing the Scottish Government (determined to impose it). And the arguments piled up, one on another, by little and little, till they made a great mountain.

The compulsory Named Person state guardian scheme. What it was, how it came to be what it was, and why it was illegal.

Why it was not illegal.

Why it was “mission creep”, a “service” morphed out of all recognition into a monstrous Jabberwock, gobbling up family rights and shredding their liberty to raise children in freedom.

Why it was not. And why sharing data without permission, without telling parents, was quite permissable.

Why it was not.

And that was where I wanted to speak. Data sharing? Information sharing? What data? What information?

“So often,” I wanted to say, “it’s not data and it’s not information. Not in the true sense of those words and all that they imply. Through being recorded, through being written, through being shared and passed on, it becomes data, it mutates into facts, irrefutable, immutable information about a family, any family. Your family.

“And how did some of this data start out?” I wanted to ask. And I wanted to answer: “As a rumour. Nothing more than over the fence, back of the cab, tittle tattle. Eventually, no-one remembers the fence. Or the chat between neighbours. Or the cab, or the gossip the driver overheard. What do they remember? They remember the documents.”

The Supreme Court building is in every sense, awesome. A Gothic beauty designed, ironically, by a Scot, transformed inside into a glass and leather palace. Each nation of the United Kingdom is symbolised in national emblems formed in illuminated glass and coloured like jewels. Hanging high above us, high above the judges.

“All rise.”

Why would we not? This was an occasion of wonder, demanding of full respect and a supreme test of these lawyers’ skills, but it was also a battle for freedom.

This is why Tymes Trust – The Young ME Sufferers Trust – agreed to join this genuine modern day struggle.

Jane Colby, Tymes Trust Executive Director

Friday, 1 April 2016

The PACE Trial did not go unchallenged for five years, and the MMR

The PACE Trial did not go unchallenged for five years

Margaret Williams           28th March 2016

On 21st March 2016 Rebecca Goldin, Director of and Professor of Mathematical Sciences at George Mason University in Fairfax, Virginia, published her devastating critique of the PACE trial, asking in bewilderment: “How did the study go unchallenged for five years?” ( ); others have been asking the same question.

However, the iatrogenic disaster that is the PACE trial did not go unchallenged for five years.

It is important that there should be an accurate record of the many challenges which were submitted by numerous people, including Professor Malcolm Hooper, but which were either ignored, dismissed, publicly ridiculed, denied outright or denigrated, for example, as in Nigel Hawkes’ feature article in the British Medical Journal: “Dangers of research into chronic fatigue syndrome -- Nigel Hawkes reports how threats to researchers from activists in the CFS/ME community are stifling research into the condition” (BMJ 2011;342:d3780 doi: 10.1136/bmj.d3780 Page 1).

Hawkes wrote that publication of the PACE results prompted a: “response to the Medical Research Council (MRC), which part funded the trial, and a shorter 43 page rebuttal to the Lancet. Both were written by Malcolm Hooper, emeritus professor of medicinal chemistry at the University of Sunderland, who branded the trial “unethical and unscientific.”  He wrote: “Entry criteria were used that have no credibility; definitions and outcome measures were changed repeatedly; data appears to have been manipulated, obfuscated, or not presented at all (so it cannot be checked) and the authors interpretation of their published data as ‘moderate’ success is unsustainable.” Both the MRC and the Lancet have considered the submission and rejected it, the Lancet commenting that the volume of critical letters it received about the PACE trial smacked of an active campaign to discredit the research.

It is a relentless, vicious, vile campaign designed to hurt and intimidate’, Professor Wessely says….’These people are sulphurous, vicious, horrible’.

Professor Wessely is not alone. All of those who approach CFS/ME from a psychiatric perspective are the targets of critics who believe the disease has a physical cause that would have been discovered by now if the debate, and the research money, had not been cornered by what they see as a conspiracy of psychiatrists, characterised by them as ‘the Wessely school’.

“As for Professor Wessely, he gave up active research on CFS/ME 10 years ago. He now specialises in the problems of war veterans. ‘I now go to Iraq and Afghanistan, where I feel a lot safer’, he says”.

Such public disparagement is characteristic of how genuine and legitimate complaints about the PACE trial have been treated. All challenges from within the UK were simply buried without trace, even by Ministers of State.

Indeed, on 6th February 2013 there was a “debate” on the PACE trial in the House of Lords for which, on his own admission, Professor Peter White (Chief Principal Investigator of the trial) briefed all those who spoke in support of it, with the intended result that the study was enshrined in Hansard as an officially-recorded success story.

It was not until David Tuller from America took up the cause that the whole matter was subjected to world-wide scrutiny by academics, medical scientists and statisticians whose views could not be dismissed or silenced.

It is worth noting that currently there are calls for the involvement of UK’s Royal Statistical Society: the RSS has already been involved but was conflicted, so declined to assist (see below).

To read the rest of the article, go to –