Tuesday, 25 April 2017

From Dr Brownstein’s Blog: Where is the Outrage? DPT Shots Associated with a 10-Fold Higher Mortality!


A 2017 study in Africa compared a DTP/OPV (diphtheria, pertussis, tetanus, oral polio) vaccinated group of children to an unvaccinated group.  The authors found there was a 10-fold increase risk in death in the vaccinated group that received only the DPT shot, as compared to the unvaccinated group.  If the children also received the OPV vaccine, there was a 5-fold higher death rate.  All-cause infant mortality after 3 months of age increased by 112% after the introduction of these vaccines.

Folks, I have been asking the Centers for Disease Control to do a vaccinated versus unvaccinated study in the U.S. for many years.  That study would answer the question whether vaccines are safe or not.  If unvaccinated children are as sick as vaccinated children it would rule out vaccines as causing the epidemic of illnesses our children are suffering including asthma, cancer, autoimmune diseases and autism.  But, the CDC refuses to do a study like this. 

Why would the CDC refuse to do a vaccinated versus unvaccinated study?  After seeing what happened to the poor children in Africa, the CDC, which owns vaccine patents and receives hundreds of millions of dollars in vaccine sales, can’t risk a negative outcome study.  

President Trump campaigned on draining the swamp.  The stench from the CDC is right there for all to smell.  The CDC epitomizes the swamp that President Trump spoke about. 

Where is the outrage amongst the Powers-That-Be about this study?  Where are the calls to investigate this matter further?  Why do our children, who are the most vaccinated on the face of the earth, suffer more death, chronic illnesses, and autoimmune disorders when compared to any other Western children?

This is exactly why we need President Trump to appoint Robert F. Kennedy Jr. to chair the Vaccine Safety Commission.  I encourage each and every one of you to send a message to President Trump encouraging him to move forward on this issue.   You can send a message here; https://www.donaldjtrump.com/contact 

At my talk on May 20, 2017, in Novi, Michigan, I will discuss this topic in more detail and show you what is wrong with our current vaccine program.  Furthermore, I will provide you with the newest information about what really works in holistic medicine including the newest information about ozone therapy.

To sign up for this lecture, please call:  1.800.647.5616. 

DrB


Thursday, 20 April 2017

That through death He might destroy him that had the power of death


C H Spurgeon's Morning Devotional for 20th April 

"That through death He might destroy him that had the power of death."

Hebrews 2:14

O child of God, death hath lost its sting, because the devil's power over it is destroyed. Then cease to fear dying. Ask grace from God the Holy Ghost, that by an intimate knowledge and a firm belief of thy Redeemer's death, thou mayst be strengthened for that dread hour. Living near the cross of Calvary thou mayst think of death with pleasure, and welcome it when it comes with intense delight. It is sweet to die in the Lord: it is a covenant-blessing to sleep in Jesus. Death is no longer banishment, it is a return from exile, a going home to the many mansions where the loved ones already dwell. The distance between glorified spirits in heaven and militant saints on earth seems great; but it is not so. We are not far from home-a moment will bring us there. The sail is spread; the soul is launched upon the deep. How long will be its voyage? How many wearying winds must beat upon the sail ere it shall be reefed in the port of peace? How long shall that soul be tossed upon the waves before it comes to that sea which knows no storm? Listen to the answer, "Absent from the body, present with the Lord." Yon ship has just departed, but it is already at its haven. It did but spread its sail and it was there. Like that ship of old, upon the Lake of Galilee, a storm had tossed it, but Jesus said, "Peace, be still," and immediately it came to land. Think not that a long period intervenes between the instant of death and the eternity of glory. When the eyes close on earth they open in heaven. The horses of fire are not an instant on the road. Then, O child of God, what is there for thee to fear in death, seeing that through the death of thy Lord its curse and sting are destroyed? and now it is but a Jacob's ladder whose foot is in the dark grave, but its top reaches to glory everlasting.


Saturday, 15 April 2017

He Is Risen!

From the Bible -

Jesus said unto her, I am the resurrection, and the life: he that believeth in Me, though he were dead, yet shall he live: And whosoever liveth and believeth in Me shall never die. Believest thou this? (John 11 v 25-26).

In the end of the sabbath, as it began to dawn toward the first day of the week, came Mary Magdalene and the other Mary to see the sepulchre. And, behold, there was a great earthquake: for the angel of the Lord descended from heaven, and came and rolled back the stone from the door, and sat upon it. His countenance was like lightning, and his raiment white as snow: And for fear of him the keepers did shake, and became as dead men. And the angel answered and said unto the women, Fear not ye: for I know that ye seek Jesus, which was crucified. He is not here: for he is risen, as he said. Come, see the place where the Lord lay. And go quickly, and tell his disciples that he is risen from the dead; and, behold, he goeth before you into Galilee; there shall ye see him: lo, I have told you. And they departed quickly from the sepulchre with fear and great joy; and did run to bring his disciples word. (Matthew 28 v 1 - 8).

For even hereunto were ye called: because Christ also suffered for us, leaving us an example, that ye should follow his steps:Who did no sin, neither was guile found in his mouth: Who, when he was reviled, reviled not again; when he suffered, he threatened not; but committed himself to him that judgeth righteously: Who his own self bare our sins in his own body on the tree, that we, being dead to sins, should live unto righteousness: by whose stripes ye were healed. For ye were as sheep going astray; but are now returned unto the Shepherd and Bishop of your souls. (1 Peter 2 v 21 - 25).


A Hymn -

Many woes had He endured,
Many sore temptations met,
Patient, and to pains inured:
But the sorest trial yet
Was to be sustained in thee,
Gloomy, sad Gethsemane!

There my Saviour faced my guilt,
Pending judgement, unrelieved,
And the horrors which He felt
Were too vast to be conceived.
None can grasp the woe in thee,
Doleful, dark Gethsemane!

Sins against a holy God;
Sins against His righteous laws;
Sins against His love, His blood;
Sins against His name and cause;
Sins immense as is the sea—
Waited in Gethsemane!

On His dying love alone
I depend—with all my need,
Deeds of righteousness I’ve none,
Nothing of good works to plead.
O, how Christ must act for me,
Starting in Gethsemane.

Father, Son, and Holy Ghost,
One almighty God of love,
Hymned by all the heavenly host
In Thy shining courts above,
We poor sinners, gracious Three,
Bless Thee for Gethsemane.

Joseph Hart, 1712-68


Friday, 7 April 2017

Banned from sleeping

From The TYMES Trust website



Hi, I’m 15 years old.

Last October I suffered a huge ME relapse. I had been under the care of a clinic, but their advice seemed to make me worse. I desperately try not to sleep through the day, as I was told by the clinic. I’m not sure if this is right, though. Should I try sleeping in the day, just a little? I really need some advice I can trust. I have stopped trusting the clinic, as their advice just doesn’t help me.

Hannah Barnes


Hi Hannah,

Rest assured, you are not alone in finding this advice counterproductive. We receive many such comments. 

Sleep problems in classic ME have for many years been known to be caused by disturbance of the hypothalamus gland in the brain, which controls automatic functions of the body. One of the main problems appears to be that, like you, people with classic ME are often counselled not to sleep in the daytime even if their brain is telling them to fall asleep. This advice seems to be given out of a misunderstanding that they will not sleep at night if they have slept in the daytime. However, because of hypothalamic disturbance, they often can’t sleep properly at night anyway, so they can then end up even more short of sleep. 

Dr Darrel Ho-Yen once stated that patients who seem to do best are those who take naps. Consultant microbiologist Dr Elizabeth Dowsett, one of the most knowledgeable authorities on ME (now retired) always talked of ‘living within the rhythm of the brain’ as it works to heal itself. That means following the brain’s signals. Paediatrician and ME specialist Dr Alan Franklin maintained that it was downright cruel to wake children with ME when their brain had at last managed to sleep. 

Although such a sleep pattern can be inconvenient, often necessitating a reorganisation of times spent studying and doing other activities, it does seem to assist the body to return to a more conventional sleep/waking cycle over time. 

In Mummies Aren’t Supposed To Cry (www.tymestrust.org/pdfs/mummiesarent.pdf) you can read an account by a mother describing how she and her son managed his difficulties sleeping. I heard from her recently with details of his substantial achievements and exciting life these days. 

The worst thing can be the stress caused by worrying that one ‘should’ be asleep at night. I believe that the sleep police have a lot to answer for, using terms like ‘sleep hygiene’ as though one is dirty if one cannot sleep during the prescribed hours. Such stress prevents relaxation and makes it less likely that sleep will come. You will probably be amused by the poem about sleep that I once wrote, also in Mummies Aren’t Supposed To Cry

With best wishes, 

Jane 

Jane Colby FRSA 
Former Head Teacher 
Executive Director 
The Young ME Sufferers Trust


Dear Jane,

Thank you so much for your email!! I had tears of relief streaming down my face. 

I have just read the publication you suggested, so much of it was so familiar. 

I have only just started to respect my ME, after 2 years of following the clinic’s advice. 

Your poem is so funny, and yet so meaningful! It will help me get through tonight if I wake up. 

Thank you so much for replying, you have no idea how much it has helped! 

Hannah

Saturday, 1 April 2017

Stanford researcher develops tools to understand chronic fatigue syndrome


(I just wish they would call the illness by its proper name: ME, Myalgic Encephalomyelitis)

Holly MacCormick on March 30, 2017

Many scientists care deeply about their work. Yet for researcher Ron Davis, PhD, the drive to decode the mystery of chronic fatigue syndrome is all-encompassing: Davis’ 33-year old son, Whitney Dafoe, has been bedridden with the disease for nearly four years.

Since his son fell ill, Davis has worked to uncover the molecular mechanisms and biochemical processes that underlie chronic fatigue syndrome, or myalgic encephalomyelitis. In 2013, Davis launched the Stanford Chronic Fatigue Syndrome Research Center with the aim of definitively diagnosing, treating and curing CFS.

Now, Davis and his team are making strides toward creating a diagnostic test for CFS. They’ve crafted a nanofabricated cube, about the size of a sugar lump, that uses 2,500 electrodes to sense electrical resistance in human cells. A recent Nature article highlighted the work:

“When Davis exposed immune cells from six people with chronic fatigue syndrome to a stressor — a splash of common salt — the cube revealed that they couldn’t recover as well as cells from healthy people could. Now his team is fabricating 100 more devices to repeat the experiment, and testing a cheaper alternative — a paper-thin nanoparticle circuit that costs less than a penny to make on an inkjet printer.

The goal is to figure out exactly what is going wrong that current tests can’t identify.

“My son can’t read. He can’t listen to music. He can’t talk. He can’t write,” Davis said in the article. “But when the doctor does a battery of tests on him, they all come out normal.”

The preliminary findings of the nanofabricated cube study, and the next round of tests using a cheaper version in the form of a thin nanoparticle circuit (shown above), could help pave the way toward a test for CFS.

“This is not an academic exercise,” Davis said. “My son is in bad, bad shape.”

Monday, 27 March 2017

New ME Petition


Debate in Parliament the absence of an effective policy for the treatment of ME

ME (Myalgic Encephalomyelitis) a physical, neurological illness, but remains untreated except with psychotherapy - a failed policy based on the views of discredited psychiatrists who deny that ME exists. A non-psychiatric policy of ME research and treatment would end this ongoing medical scandal.

See: 

"Science, Politics, .......and ME: A health scandal in our generation" Dr Ian Gibson (2017, Invest in ME Research) - http://www.investinme.org/IIME-Newslet-1508-01.shtml 

To Sign go to –


(British citizens or UK residents only)

Friday, 17 March 2017

Communication with NICE about the revision of the Clinical Guideline 53


On 12th March 2017, Margaret Williams sent a letter and an open memo to Professor Mark Baker at NICE. The letter and the memo are shown below. A pdf version of both can be downloaded by clicking the link above.

Letter to Professor Mark Baker

Dear Professor Baker

The attached Open Memo addressed to you is about to be distributed via various internet channels, so I wanted to assure you that it is in no way an ad hominem attack on you personally.

It is simply a last-ditch attempt to prevent more harm being done to the many thousands of ME sufferers in the UK whose life has been wrecked by an utterly devastating neuro-inflammtory disease which has nothing whatever to do with “chronic fatigue” or with “aberrant illness beliefs” or with “hypervigilance to normal bodily sensations” as reiterated by those who were so influential in the production of the original Guideline CG53.

Over the last 30 years I have accumulated a huge library of books, articles and international conference reports on ME/CFS, resulting in a vast database.  Despite frequent claims that little is known about it, on looking at this published evidence, I am always struck at the enormous amount that is actually known about the disease. 

For example, there has been much discussion about the recent findings by Naviaux et al that ME/CFS patients are in a hypometabolic state, but evidence of this was presented by Tavio et al from Aviano, Italy, at the AACFS International Conference on (ME)CFS in San Francisco in 1996, which is 21 years ago. 

Those findings were publicly dismissed by Dr Simon Wessely but they were replicated in 1998 by D. di Giuda and D. Racciatti et al from Rome, who found brainstem hypoperfusion in 83.9% of (ME)CFS patients studied and who concluded that their study confirmed previous reports of brain perfusion impairment in (ME)CFS patients and provided objective evidence of central nervous system dysfunction. 

What is so disturbing is that in the UK, the disproportionate influence of the psychosocial lobby has succeeded in ensuring that this enormous knowledge-base of multi-system dysfunction has been suppressed, dismissed and ignored; had that lobby not achieved this suppression of the evidence, their own beliefs would long ago have been exposed as null and void, as has now finally happened.

That they were able to achieve such control has been due in no small measure to the instrumental role played by the Science Media Centre (of which Professor Sir Simon Wessely is a founder member and whose advisory board includes James Gallagher, the BBC’s Science Editor). The SMC’s active campaign against the acceptance of ME/CFS as a neuroimmune disease is undeniable and has been documented by Professor Malcolm Hooper (www.meactionuk.org.uk/MW/2013/role-of-science-media-centre-and-insurance-industry.pdf).

Indeed, I was personally told by the medical editor of a major broadsheet that they would not publish anything about ME/CFS unless they received it from the Science Media Centre which, sadly, gives undue weight to the psychosocial voice, so – despite the internet -- the wealth of evidence showing significant pathology is not easily available in the UK.

In 2003 Carruthers et al published “Myalgic Encephalomyelitis/Chronic Fatigue Syndrome: Clinical Working Case Definition, Diagnostic and Treatment Protocols. A Consensus Document” (JCFS: 2003: 11(1):7115) and an Overview published in 2005 confirmed the compelling research evidence of physiological and biochemical abnormalities which identify ME/CFS as a distinct, biological, clinical disorder with autonomic, endocrine and immune dysfunction, stating categorically that it is not synonymous with psychiatric disorder.  The Overview draws specific attention to the dangers of “unwisely” prescribed graded exercise because of the evidence of suboptimal cardiac function and because patients have different physiological responses to exercise than healthy controls. It also points out that the standard battery of tests is inadequate to reveal the many abnormalities present. 

You will doubtless be aware that the UK psychosocial lobby refuses to accept any of this evidence and disparages the world-class experts from thirteen countries who compiled the Consensus and who, collectively, have 400 years of clinical experience of ME/CFS and who have diagnosed and treated approximately 50,000 patients with ME/CFS.

The crushing impact of ME/CFS was emphasised by Dr Julie Gerberding, Director of the US CDC, when on 3rd November 2006 she announced the CDC’s Toolkit to draw attention to the “tremendous impact” of (ME)CFS and to patients’ “courage” and to their “incredible suffering”, and she emphasised the underlying biological nature of the disease. This is very different from the message in the UK, which is that “CFS/ME” is a behavioural disorder and if patients would only co-operate and engage in “cognitive restructuring” and graded aerobic exercise, they could recover.  Nothing is further from the truth. 

It is notable that the interventions of CBT and GET which were part of the CDC Toolkit have now been archived (http://www.cdc/gov/cfs/toolkit/archived.html) and that the National Institutes for Health (NIH) have advised that the Oxford criteria used in the PACE trial are flawed: “Specifically, continuing to use the Oxford definition may impair progress and cause harm…Thus, for needed progress to occur we recommend that the Oxford definition be retired” (http://annals.org/article.aspx?articleid=2322804).  Their conclusions were based on comprehensive reviews of over 9000 peer-reviewed research papers and testimony from expert researchers and clinicians.

I’m sure you will have seen the latest open letter about the PACE trial to the editors of Psychological Medicine, a letter which has 101 international signatories, but in case you missed it, here is the link:

Without doubt you have a very difficult task ahead of you and I can only wish you strength and courage in “standing up for science” (this, ironically, being the citation in the award of the inaugural John Maddox prize in 2012 to Simon Wessely).

With kind regards

Margaret Williams

Open Memo to Professor Mark Baker

Now that it has been agreed that the NICE Clinical Guideline on “CFS/ME” (CG53) that was published in August 2007 is to be removed from the static list and reviewed this year, it may be helpful for everyone involved to consider a few relevant facts.

As you have worked for NICE since 2009 and as you are now the Centre for Guidelines Director, you will, of course, be familiar with the following points but, given their importance and given the extent to which they were ignored in the production of the original Guideline, it seems prudent to draw renewed attention to them.

As NICE is funded by – and is accountable to – the UK Department of Health, it should go without saying that NICE adheres to DH published policy, but it would appear that in the production of CG53 there was no such adherence.

Relevant Facts

1.  “The Expert Patient: A New Approach to Chronic Disease Management for the 21st Century” was launched in September 2001 by the Chief Medical Officer (DH 2001).  The programme was to be mainstreamed throughout the NHS between 2004 and 2007.  The underlying purpose of The Expert Patient Programme (EPP) was, of course, to get patients with chronic diseases to police their own behaviour and thereby reduce their dependence on State resources (From 1984 to 2004: Double think, social movements and health policy: Ruth McDonald, National Primary Care R&D Centre, University of Manchester, 2004) but the nominal aim was self-explanatory: it was to empower patients in decision-making about the chronic illness with which they lived and, being “user-led”, the sharing of expertise between clinicians and patients would lead to a better quality of life for those living with chronic diseases.  It was recognised that such patients are well-informed about their condition and therefore partnerships between patients and professionals were essential.  

This did not happen in the production of CG53.  Even though NICE received over 11,000 pages of submissions about this particular Guideline and despite ostensible patient representation on the Guideline Development Group (GDG), the voice of the expert patient was over-ruled.  The Chairman of the GDG, Professor Richard Baker, failed in his remit to uphold Government policy by permitting influential members of the GDG to refuse to accept the WHO classification of ME/CFS as a neurological disorder as directed by NICE itself: on 10th September 2002 the Communications Director (Anne-Toni Rodgers) of NICE Special Health Authority issued a Communications Progress Report which, at section 2.7.1.5 was clear: “The ICD-10 classification is used for the recording of diseases and health related problems…The WHO produces the classifications and ICD-10 is the latest version…the classification codes are mandatory for use across England”.

Given that the DH accepts that ME/CFS is a neurological disorder (letter dated 11th February 2004 from Lord Warner, Parliamentary Under Secretary of State, Department of Health; confirmed on 2nd June 2008 by Lord Darzi, Parliamentary Under-Secretary of State, Department of Health: “My Lords, I have acknowledged that CFS/ME is a neurological condition… as I said earlier, (it) is a neurological rather than a mental condition”), will you personally ensure that the revised Guideline makes it clear that NICE also accepts the WHO classification of ME/CFS as a neurological disorder? 

2. On 21st March 2002 in the BBC Radio 4 programme “You and Yours”, the issue of patient /professional co-operation was discussed in relation to the then-recent Report of the UK Chief Medical Officer on “CFS/ME”.  The interviewer said: “Now the government says it wants patients to sit alongside clinicians and become amateur experts and contribute to a whole range of treatments.  But putting theory into practice has proved problematical…Tony Britton from the ME Association thinks the use of expert patients for some conditions is vital”.

One of the reporters, Margaret Collins, said: “The theory then is fine, it is putting the concept of the ‘expert patient’ into practice that’s the real challenge.  When the Independent Working Group on CFS/ME was set up to improve the quality of care and treatment, clinicians and patients could not agree and several resigned….The clinicians felt that there was sufficient evidence for the treatments they wanted to recommend.  Dr Peter White resigned over evidence about the treatment”.

Peter White responded:  “We need to know what treatments work for our patients in general rather than specifically what particular patients know works for them.  That’s the way we can reassure our other patients that there is evidence that a particular treatment works…We are talking about a hierarchy of evidence that is most convincing.  If I wanted to persuade someone who is sceptical about what I have to say, the best way to do that is to show scientifically repeatedly that what I say is true….I think the ‘expert patient’ programme will work best when there is consensus about the way forward….When it is a chronic condition for which there is no immediate chance of a cure, when the programme is properly resourced… to get the patients who are going to provide the evidence…then the ‘expert patient’ programme could work well”.  (Plainly, Peter White was saying that only if the ‘expert patient’ concurred with his own views would a partnership be possible).

The interviewer then introduced Anne-Toni Rodgers from NICE and asked her: “From NICE’s point of view, wouldn’t academics and researchers…have their own agenda – that’s the real world, and patients perhaps will have theirs, and that’s perhaps how never the twain will meet?” Anne-Toni Rodgers replied: “We are trying very hard to study our guidelines process to prevent that happening….One way we have actually focused in supporting patients in this relationship is by establishing something called a ‘Patient Involvement Unit’…we fund it (and) we are very clear about patients that we want involved in clinical guidelines… so then we have a broad understanding of the condition….When you have lived with a condition for20 years, you often know more about it”.

The interviewer then said “But that’s what the doctors object to….So the doctors get in the way – they say they don’t agree with patients….When push comes to shove, doctors are going with their own scientific instincts, aren’t they, rather than whatever patients may tell them”, to which Dr Rona McDonald, Assistant Editor, BMJ, replied: “I am afraid that that actually may be the case, even though it’s one that I absolutely abhor myself….The whole problem is that the patients have never been included from the start”  (Transcript by Doris M Jones, 19.04.2002).

3.  In March 2008, the British Medical Association published its report “Public and Patient Involvement (PPI) in the NHS” which called for active involvement of the public who fund it and the patients who use it. The BMA found that public and patient involvement was at risk of being seriously weakened and offered recommendations on the necessary structures and processes that would ensure that PPI is robustly established as an integral and collaborative process in the NHS in order to develop productive partnerships between patients, the public, health professionals and policy makers.

Given the requirement for the active involvement of the “expert patient”, will you ensure that in the current revision, NICE accepts the voice and the experience of the expert ME/CFS patient? What the expert ME/CFS patient has consistently said is that the behavioural interventions  recommended in the original Guideline do not work and, given the indisputable evidence that people with ME/CFS (as opposed to chronic fatigue) are in a hypometabolic state, graded aerobic exercise may be actively harmful.

4.  On 6th January 2011 Frances Rawle PhD, Head of Corporate Governance and Policy at the Medical Research Council, wrote to Professor Malcolm Hooper confirming about CBT/GET that, prior to the PACE Trial: “there was insufficiently strong evidence from randomised controlled trials to support their effectiveness”.  This was a surprising admission, because the NICE Guideline that advocated CBT/GET was published in 2007, which was four years before the initial results of the PACE Trial appeared.  Given Dr Rawle’s confirmation that in 2007 there was insufficiently strong evidence, NICE should not have recommended such interventions for national implementation, as further confirmed by the House of Commons Health Select Committee, First Report of Session 2007-08, Volume I:29, whose members were unequivocal that NICE should not recommend interventions when the evidence is weak.  

Indeed, in the absence of sufficiently strong evidence, in the 2007 Guideline the interventions of CBT and GET should have been sanctioned only for use in research and should not have been promoted for national implementation.

As is now undeniable, it cannot be credibly disputed that the PACE Trial failed, so there is still no robust evidence that the interventions promoted in CG53 are appropriate or effective.

The fact that currently there is no effective treatment for ME/CFS should be admitted and should not be the reason for the recommendation of interventions that have been shown to be harmful.

Will you personally ensure that, in the current revision, any recommendations you make will be supported by transparent evidence of effectiveness?  

4.  In 2006 NICE received The Clinical Guideline Development Programme: A Review by the World Health Organisation: May 2006, in which the WHO said: “The Report contains a series of recommendations on how NICE could further develop the Guideline development process”.

Two key recommendations with which the WHO required NICE’s compliance would seem to be relevant to the current situation:

Key recommendation 1: “NICE should develop several types of clinical guidelines, rather than continue to use the current ‘one size fits all’ approach”.

Key recommendation 12:  “NICE should strengthen collaboration with national and international groups”.

In its response of January 2007 to the WHO recommendations NICE said:

Key recommendation 1:  “We are reviewing our scoping process in 2007 with the aim of producing more focused guidelines.  When updating full guidelines, we will focus on the key points of the pathway where guidance is most needed”.

Key recommendation 12:  “NICE already has strong collaborative links with national professionals and stakeholder organisations and research groups.  It is involved in several international projects and initiatives…It is a member of the Guidelines International Network (G-I-N)…It has established links with other guidelines organisations in Europe and has regular exchanges with similar North American organisations.  These links…need to be balanced with the institute’s primary responsibility to prepare and disseminate its guidance”.

Given that there is no literature bearing the imprimatur of UK Royal Colleges acknowledging that the PACE results are inaccurate due to multiple deviations from its published protocol, will you ensure that the current revision of CG53 concurs with key recommendations of the WHO and that NICE will pay requisite heed to the international biomedical evidence which demonstrates what patients have been saying for decades, namely that CBT and GET do not help patients with ME/CFS and that GET in particular is likely to cause iatrogenic harm?  

GET cannot help overcome chronic inflammation and it was ten years ago that Nancy Klimas, President of the International Association for CFS/ME and Professor of Medicine and Immunology, University of Miami, said: “Unquestionably, the name CFS has done harm both to patients who are dismissed as merely chronically fatigued and to the credibility of professionals who are attempting to understand and treat a complex illness that involves neuroinflammation, autonomic and immune peturbations, and hormonal dysregulation”, the substantial published evidence of which NICE comprehensively ignored.

As the Guidelines Development Manual requires equal weighting of the evidence, will you personally ensure that the “expert patient’s” voice is given equal weight to the well-orchestrated voice of one particular group of professionals with confirmed vested interests and will you personally ensure that the evidence upon which NICE’s revised Guideline is predicated is seen to be fact, not fiction?