Saturday, 25 December 2010
"And it came to pass in those days, that there went out a decree from Caesar Augustus, that all the world should be taxed. (And this taxing was first made when Cyrenius was governor of Syria.) And all went to be taxed, every one into his own city. And Joseph also went up from Galilee, out of the city of Nazareth, into Judaea, unto the city of David, which is called Bethlehem; (because he was of the house and lineage of David:) To be taxed with Mary his espoused wife, being great with child. And so it was, that, while they were there, the days were accomplished that she should be delivered. And she brought forth her firstborn son, and wrapped him in swaddling clothes, and laid him in a manger; because there was no room for them in the inn. 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."
C H Spurgeon's Morning Devotional for December 25th -
“Behold, a virgin shall conceive, and bear a son, and shall call his name Immanuel.”
Isaiah 7 v 14
Let us today go down to Bethlehem, and in company with wondering shepherds and adoring Magi, let us see him who was born King of the Jews, for we by faith can claim an interest in him, and can sing, “Unto us a child is born, unto us a son is given.” Jesus is Jehovah incarnate, our Lord and our God, and yet our brother and friend; let us adore and admire. Let us notice at the very first glance his miraculous conception. It was a thing unheard of before, and unparalleled since, that a virgin should conceive and bear a Son. The first promise ran thus, “The seed of the woman,” not the offspring of the man. Since venturous woman led the way in the sin which brought forth Paradise lost, she, and she alone, ushers in the Regainer of Paradise. Our Saviour, although truly man, was as to his human nature the Holy One of God. Let us reverently bow before the holy Child whose innocence restores to manhood its ancient glory; and let us pray that he may be formed in us, the hope of glory. Fail not to note his humble parentage. His mother has been described simply as “a virgin,” not a princess, or prophetess, nor a matron of large estate. True the blood of kings ran in her veins; nor was her mind a weak and untaught one, for she could sing most sweetly a song of praise; but yet how humble her position, how poor the man to whom she stood affianced, and how miserable the accommodation afforded to the new-born King!
Immanuel, God with us in our nature, in our sorrow, in our lifework, in our punishment, in our grave, and now with us, or rather we with him, in resurrection, ascension, triumph, and Second Advent splendour.
From "Echoes of Eternity", a collection of Christian poems by Michael R Abbot; used with permission -
The Saviour promised long,
The Christ, Immanuel,
Only begotten Son of God,
With us is come to dwell.
The promise of the ages He,
Who comes to set the prisoner free
And save lost souls from hell.
He is the Way, and He alone
Can lead a sinner to God's throne.
He is the Truth and they who heed
His word, will find in Him their need;
He is the Bread on which we feed.
He is the Life, the Light.
Both Alpha and Omega He,
A King for all eternity,
The Everlasting Prince of Peace,
There is no end of His increase;
The blessed and only Potentate
Before Whose throne we fall,
The Holy One of Israel,
The Righteous Judge of all.
With God before the World began,
Both Son of God and Son of Man,
The first begotten from the dead,
The Church's risen, living Head:
For her He died,
For her He bled;
Upon the cross His blood He shed,
That she His bride might be;
Then rose victorious from the grave
That she, the one He came to save,
Might dwell with Him on high.
A prince of David's royal line,
From Jesse's stem a rod,
To smite the wicked in the earth,
An ensign raised by God.
To Him the nations gather now:
From east and west,
To Him they bow.
The Lamb of God, our sacrifice,
And yet our Great High Priest;
Shepherd and Bishop of our souls,
Who spreads for us a feast;
Faithful and True in all His ways,
Deserving of unceasing praise,
JEHOVAH, GREAT I AM.
Thursday, 23 December 2010
Biomedical Research into ME
Proper Science Will Prevail
The journal Retrovirology has recently published (20 Dec 2010) results from four different groups (Hue et al., Sato et al., Oakes et al. and Robinson et al.)  which dispute the association of XMRV with ME/CFS or prostate cancer and suggest evidence of possible mouse contamination of PCR evidence. Hue et al. go as far as to say that XMRV might not be a genuine human pathogen.
Until now it has been accepted by the scientific community that an infectious XMRV exists and the only debate has been whether its association with ME/CFS can be replicated or validated by other researchers.
Invest in ME feel that it is good that the papers in Retrovirology have been published for closer scrutiny by other experts in the field as there are many distinguished scientist involved on both sides of the scientific debate. We only question the motives and timing of the publication of these papers.
We expect and demand that these papers will be scrutinised as thoroughly as has been the case of the papers stating an association of XMRV and ME/CFS or prostate cancer.
Many media outlets were astonishingly quick to pick up this story from the Retrovirology journal. The BBC quoted Professor Tim Peto as saying
It is worth pointing out that Professor Peto is in the Trial Management Group of the soon to be published PACE trials, a trial which was heavily criticised before it even started by patients and most ME charities. The Trial Management Group also includes proponents of ME/CFS being a somatoform illness.
“It now seems really very, very unlikely that XMRV is linked to chronic fatigue syndrome patients ."
Invest in ME firmly believe that the PACE trials are bogus science and are the culmination of a decade of squandered resources from biased policies toward ME/CFS research. The folly of the PACE trials was extensively illustrated by the "Magical Medicine - How to Make an Illness Disappear" document  and we feel they can be discarded for any sensible discussion about ME/CFS.
The WPI have issued a press release  in which they state that -
The recent research studies in Retrovirology need to be viewed in context. We openly wonder about a possible coordinated establishment propaganda campaign to boost the forthcoming PACE trials publication by coordinating a number of research papers to be published simultaneously.
"Humans cannot make antibodies to viruses related to murine leukemia viruses unless they have been exposed to virus proteins. Therefore, recent publications regarding PCR contamination do not change the conclusions of the Lombardi et al. and Lo et al. studies that concluded that patients with ME/CFS are infected with human gammaretroviruses."
It is worth emphasising again that the original Science paper was extensively peer reviewed. Using the "contamination argument" not only attempts to impinge the reputation of the WPI but also the Cleveland Clinic and the National Cancer Institute as well as Science magazine - and such heavyweight researchers as Dr Harvey Alter. Contamination was carefully ruled out by Lo et al. and Lombardi et al. The peer reviewers at Science and PNAS made sure of this.
We should also remember the observations from Dr David Bell made in May this year  where he commented on tactics being used to hamper the WPI research. Although the establishment bias of trying to promote ME/CFS as a behavioural illness has now clearly been discredited as a ridiculous smokescreen using poor research the efforts to thwart proper science are still going on.
Amy Dockser Marcus, a Wall Street journalist who has been following ME/CFS research closely, published an article  on this matter. This quotes other authors of this collection of Retrovirology papers, such as Professor John Coffin and assistant professor Robert Smith, author of the commentary, as being cautious of dismissing previous studies. This does not concur with Professor Peto's remark to the BBC above in which he seemingly dismisses any link between XMRV and ME/CFS.
Medical research has historically been in denial of new ideas and advancement due to dogma and inertia from establishment forces. Doctors, for example, would still be treating patients with peptic ulcers with stress reduction techniques and lifestyle management were it not for the example of Professor Barry Marshall, who infected himself with helicobacter pylori and subsequently treated himself with antibiotics to prove causality. . Without such pioneering research progress is often stunted, or discarded.
How can we make progress? Patients need to be trialling treatments under proper supervision. A sensible approach might be to establish a few well controlled clinical trials to be performed on patients who are so ill that they have practically nothing to lose by trying out treatments such as antiretrovirals, where appropriate, to determine if there is improvement in their condition. It is about time something tangible is done to help these desperate patients and to progress proper science.
To this end Invest in ME will use the The Case for Clinical Trials as a theme for the 6th Invest in ME International ME/CFS Conference on 20th May 2011 . We feel it is time to effect translational biomedical research and bring the benefits of such research to patients. It is also why we are trying to establish an examination and research facility to perform translational biomedical research into ME/CFS .
Invest in ME have invited the UK Secretary of State for Health, the Chief Medical Officer of England, the EU Commissioner for Health and many of Europe's health ministers to the conference. We have also invited the editor of the British Medical Journal to participate in a panel discussion - no longer can the BMJ publish poorly researched editorials on ME/CFS if it refuses to attend the annual IiME international ME/CFS Conference.
In May 2011 we will welcome again the President of the WPI Mrs Annette Whittemore and the Research Director Dr Judy Mikovits to London and will willingly (once again) provide the opportunity for politicians, the media and healthcare providers and researchers to attend the conference and listen and discuss with the foremost researchers on ME/CFS.
The WPI have shown themselves to be open and willing to cooperate - quite unique qualities in scientific research from what we can see. One thing that is clear is that the WPI is focused on helping ME/CFS patients to regain their lives - an attribute which seems often to be missing from some researchers, spokespersons and establishment organisations.
The WPI research on XMRV has offered new hope to people with ME/CFS that proper science is finally being performed to provide a future for patients.
Hopefully more funding will now be directed toward biomedical research into ME/CFS to enable progress regarding this devastating disease. As Dr Harvey Alter of National Institute of Health recently said his group had ruled out contamination and if whatever his group found is not MLV related viruses then scientists must find out what it is as the disease these ME/CFS patients have carry hallmarks of a viral disease.
We concur - virology and immunology are the likely keys to finding a treatment/cure.
We hope that scientific progress will continue at a much faster pace than in the past and that politics are not once again allowed to destroy all hope for ME/CFS patients.
We believe that proper science will prevail. Look to the end.
3 Statement Issued by Whittemore-Peterson Institute - 20 December 2010
Invest in ME
Registered UK Charity Nr. 1114035
PO BOX 561, Eastleigh SO50 0GQ
Wednesday, 15 December 2010
O little town of Bethlehem,
How still we see thee lie!
Above thy deep and dreamless sleep
The silent stars go by:
Yet in thy dark street shineth
The everlasting Light;
The hopes and fears of all the years
Are met in thee tonight.
O morning stars, together
Proclaim the holy birth,
And praises sing to God the King,
And peace to men on earth;
For Christ is born of Mary;
And, gathered all above,
While mortals sleep, the angels keep
Their watch of wondering love.
How silently, how silently,
The wondrous gift is given!
So God imparts to human hearts
The blessings of His heaven.
No ear may hear His coming;
But in this world of sin,
Where meek souls will receive Him, still
The dear Christ enters in.
O holy Child of Bethlehem,
Descend to us, we pray;
Cast out our sin, and enter in;
Be born in us today.
We hear the Christmas angels
The great glad tidings tell;
O come to us, abide with us,
Our Lord Immanuel.
Phillips Brooks, 1835 - 1893
Monday, 6 December 2010
Possible New HIV-like Retrovirus in Blood Supply
CORAL GABLES, Fla., Dec. 6, 2010 /PRNewswire-USNewswire/ -- In an unprecedented move, chronic fatigue syndrome (CFS) patients published a half-page ad in The Washington Post today. The ad brings attention to new, HIV-like retroviruses, including XMRV, which have been linked to CFS and aggressive prostate cancer, and have been detected in healthy blood donors. The ad was created through the ME/CFS Worldwide Patient Alliance (MCWPA), a grassroots patient collaboration formed in August 2010 with the support of P.A.N.D.O.R.A., Inc. From their beds and wheelchairs, patients spent decades watching researchers, scientists and physicians debate about the cause or nature of their illness. Now, they are adding their voice through a campaign that calls for biomedical research funding, fast-track treatment options and improved patient quality of life. CFS, also known as myalgic encephalomyelitis or ME/CFS, is a disabling, sometimes fatal NeuroEndocrineImmune disease that afflicts more than one million Americans and an estimated l7 million people worldwide.
ME/CFS first gained national attention amidst the AIDS epidemic in the early 1980s. As early as 1991, a retroviral link to ME/CFS was discovered by Dr. Elaine DeFreitas of the Wistar Institute, but subsequent retroviral research was halted by the government. Although more than 4,000 peer-reviewed articles in medical journals have pointed to system-wide immune, neurological, endocrine, gastro-intestinal and cardiac abnormalities, a biologically-based diagnostic definition has eluded doctors. The result has been a catastrophic lack of care, ineffective (sometimes harmful) treatments and a shorter life span for those who are ill. The leading causes of death among patients are heart disease, cancer and suicide. The disease occurs in people of all ages, from children to seniors, and also has a higher incidence rate in families and has occurred in cluster outbreaks.
"This can happen to anyone," said Sita G. Harrison, spokeswoman for the MCWPA. "ME/CFS is devastating and the lack of care has hurt us all. We ask the government and health care agencies that we put our trust in to help the millions of people who are suffering and to fund more research now."
A major scientific breakthrough occurred in October 2009 when the Whittemore Peterson Institute (WPI) at the University of Nevada, Reno, working with the National Cancer Institute and Cleveland Clinic, published the results of a landmark study. The seminal study, published in the leading scientific journal, Science, discovered the third human retrovirus, XMRV, in the blood of 67% of ME/CFS patients and in 3.7% of healthy controls. This suggests that up to 10 million US citizens could already be infected. This finding was later confirmed by the FDA, NIH and Harvard Medical School in a study published in the Proceedings of the National Academy of Sciences. Their results linked a family of human gamma retroviruses (to which XMRV belongs) to ME/CFS at a rate of 86.5% and 6.8% in the healthy population, bringing the total of Americans who may be infected up to 20 million people.
"The NIAID, the national institute responsible for infectious disease research, has yet to fund XMRV research in ME/CFS or any other disease," explains Annette Whittemore, President of WPI. "WPI has had its last six XMRV-related grant proposals turned down; despite the fact that our researchers have proven XMRV is transmissible and infectious."
MCWPA is advocating for a budget that is in line with other NeuroEndocrineImmune diseases. Currently, only $5 million for ME/CFS research is in the NIH budget, far less than similar diseases such as multiple sclerosis ($l44 million) and lupus ($121 million). Patients also ask for antiretroviral and Ampligen clinical trials that have shown great promise in mitigating the effects of ME/CFS.
For more information, to donate, or for more resources and spokespeople, including leading researchers, scientists, physicians, patients, and historians please visit http://mcwpa.org/ .
About MCWPA: Our mission is to create an effective, cutting-edge advertising campaign addressing the poor quality of life of individuals with ME/CFS. By issuing a collective and unified statement, our community will no longer be silent and invisible. The MCWPA ad campaign is supported by P.A.N.D.O.R.A. Inc.™, Vermont CFIDS Association, Inc., R.E.S.C.I.N.D., Rocky Mountain CFS/ME and FM Association and the Wisconsin ME/CFS Association, Inc.
Friday, 3 December 2010
Upon this earth He walked:
He lived, He breathed, He talked;
He healed the sick and raised the dead,
Five thousand fed with fish and bread;
At His command the tempest fled
And water turned to wine.
The devils trembled at His name
And all the world heard of His fame.
He is the incarnate Word:
God manifest in flesh,
The voice divine is heard;
By Him the souls of men are stirred;
In Him the love of God revealed;
Through Him redemption’s promise sealed.
Only begotten Son of God,
The image of His face.
Messiah, Saviour, Christ,
The source and fount of grace.
Upon the Cross He died,
A sacrifice for sin,
Atoning by His blood,
A pardon there to win
For all who call
Upon His name,
For all who fall
Before the throne
His death to own,
The gift, by faith, to claim.
Upon the Father’s throne He sits,
Eternal Lord and King:
The angels fly at His command,
The saints His praises sing.
His work complete,
Beneath His feet
His enemies shall fall,
Upon the Judgment Day
At that last trumpet call.
To Him be honour, glory, power,
With majesty and might.
To Him let worship ever flow,
The God and King of light.
Wednesday, 1 December 2010
C H Spurgeon's Morning Devotional for December 1st
“Thou hast made summer and winter.”
My soul begin this wintry month with thy God. The cold snows and the piercing winds all remind thee that he keeps his covenant with day and night, and tend to assure thee that he will also keep that glorious covenant which he has made with thee in the person of Christ Jesus. He who is true to his Word in the revolutions of the seasons of this poor sin-polluted world, will not prove unfaithful in his dealings with his own well-beloved Son.
Winter in the soul is by no means a comfortable season, and if it be upon thee just now it will be very painful to thee: but there is this comfort, namely, that the Lord makes it. He sends the sharp blasts of adversity to nip the buds of expectation: he scattereth the hoarfrost like ashes over the once verdant meadows of our joy: he casteth forth his ice like morsels freezing the streams of our delight. He does it all, he is the great Winter King, and rules in the realms of frost, and therefore thou canst not murmur. Losses, crosses, heaviness, sickness, poverty, and a thousand other ills, are of the Lord’s sending, and come to us with wise design. Frosts kill noxious insects, and put a bound to raging diseases; they break up the clods, and sweeten the soil. O that such good results would always follow our winters of affliction!
How we prize the fire just now! how pleasant is its cheerful glow! Let us in the same manner prize our Lord, who is the constant source of warmth and comfort in every time of trouble. Let us draw nigh to him, and in him find joy and peace in believing. Let us wrap ourselves in the warm garments of his promises, and go forth to labours which befit the season, for it were ill to be as the sluggard who will not plough by reason of the cold; for he shall beg in summer and have nothing.
Tuesday, 30 November 2010
Allergies and Multiple Chemical Sensitivity in Myalgic Encephalomyelitis / Chronic Fatigue Syndrome
29 November 2010
I would recommend the above article by Margaret Williams. Many of us with ME have multiple allergies and sensitivities to various foods and chemicals, so the article will hopefully be of help to some.
Links to further articles by Margaret Williams, who is herself badly affected by ME, can be found on my website at -
Monday, 22 November 2010
‘None of my patients have ever been harmed and none have ever made a complaint about me’
Nov 21 2010 by Daniel Fisher, Wales On Sunday
A DOCTOR banned from practising medicine and branded a “real risk to patients” has spoken for the first time of her battle to clear her name.
Dr Sarah Myhill, 52, who specialises in the treatment of ME and chronic fatigue, has been banned from practising medicine for 12 months pending a full investigation by the General Medical Council (GMC).
Dr Myhill, who runs a private practice in Llangunllo, Powys, has claimed to “pioneer” treatments combining conventional medicine with herbal and homoeopathic techniques.
But the GMC is investigating allegations made by other GPs about her management of a patient with a neurological disease and another complaint about the contents of her website – which among other things advised against women taking the oral contraceptive pill.
In an exclusive interview with Wales on Sunday, Dr Myhill has revealed:
- She intends to fight the GMC all the way to the European Court of Human Rights if she has to;
- she can’t afford to hire professional lawyers to prepare her case;
- the battle to clear her name has “engulfed” her life and “emasculated” her professionally;
- that she has been overwhelmed by the kindness and support she has received from her patients.
Dr Myhill’s battles with the GMC began in 2001 following a series of complaints from other doctors. Those allegations were dropped in 2007 with no case to answer. But further complaints emerged, firstly from a group of doctors concerned that she recommended a B12 injection to a patient.
A second came from an anonymous complainant who alleged the information on her website was “very worrying” and was concerned “patients are being seriously misled”.
On the basis of those allegations, in April this year a GMC panel imposed a series of conditions on Dr Myhill’s registration, banning her from prescribing prescription medicines and ordering her to remove large sections of her website.
The decision was upheld in a further hearing last month, in which GMC panel chairman Dr Peter Maguire said: “There may be impairment of your fitness to practise which may pose a real risk to patients and as a result, to members of the public.”
But in response, thousands of Dr Myhill’s supporters and former patients have spoken out against the GMC’s “witch hunt” and called for her to be reinstated.
More than 4,000 patients and supporters have signed a petition and more than 1,000 have written letters directly to the GMC.
Speaking at her Powys surgery, Dr Myhill said: “The main allegation is from an anonymous e-mail but the GMC has received more than 1,000 letters from my patients supporting me.
“It feels as if they are ignoring the evidence that doesn’t suit their case.
“The GMC have not made any specific allegations about me. They only talk about my ‘potential’ risk to patients without saying what that risk is. I point out to them that by that measure any doctor in any surgery is a ‘potential’ risk.”
Dr Myhill said she was determined not to give up the fight which had engulfed her life for more than nine years.
“I have been completely emasculated professionally,” she said.“I can’t work as a doctor which means I can’t afford representation.
“So between me and the GMC – who have all their barristers and lawyers at their disposal – it just isn’t a level playing field. The next step is the High Court, where I will argue that they have not explained the specific allegations and have therefore breached my human rights. I have been punished with no proper trial. The fact is that none of my patients have ever been harmed and none of my patients have ever made a complaint about me.”
While her professional career hangs in the balance however, Dr Myhill said she was determined not to let the issue become too personal.
“Of course it does take its toll on you emotionally,” she said. “I would much rather be seeing my patients, horse riding and generally getting on with things rather than spend 24/7 immersed in my case. But I have to do that to give myself the best possible chance. I am not letting it become too personal. I am keeping cool, calm and professional.”
She said she was now keeping afloat by dipping into her savings and by working as a nutritional therapist.
“I will survive and get by but it is my patients who are the ones who will suffer,” she said. “I can’t give them the service I would like to give them. The GMC won’t listen to them – it’s like their opinions count for nothing. For many of my patients, when they come to me they have done so because they have reached the end of the road. They have no-one else to go to.
“It meant once I was banned I was unable to refer them on to anyone else. The patients are the forgotten victims in all of this. They could not be more supportive or generous to me. Some have even sent me money for the fighting fund, which I will use towards a barrister for the court appearances.”
The next step is a High Court hearing next month after which she has said she would take her case all the way to the European Court of Human Rights.
Thursday, 18 November 2010
Monday, 15 November 2010
He notes that the MRC is "thoroughly" investigating the complaint that was set out in "Magical Medicine: how to make a disease disappear" and awaits the promised response with interest" -
A copy of the letter from David Willets to Professor Hooper is available for download as a pdf at:
Dear Doctor Hooper,
Thank you for your letter of 7 October to the Secretary of State, regarding your complaint about the Medical Research Council (MRC) funded PACE trial on CFS/ME. I am replying as this matter falls within my portfolio and apologise for the delay in doing so.
I do recognise that CFS/ME can be an extremely debilitating illness and cause much distress to sufferers and their carers. The MRC, as one of the Government's main funding agencies for biomedical research, also recognises this and welcomes high quality applications for research into CFS/ME including evaluations of treatments, and studies into the biological basis of the condition.
You have taken the correct course of action in raising your concerns with the MRC; the council has assured me that it takes allegations of coercion within a trial very seriously and is investigating your complaint thoroughly. I have been assured that you will receive a response from the MRC within the next month.
The Rt Hon David Willetts MP
If you haven't read "Magical Medicine: How to make a disease disappear", it can be found at:
For further information, see also:
Friday, 5 November 2010
My hope is built on nothing less
Than Jesus' blood and righteousness;
I dare not trust the sweetest frame,
But wholly lean on Jesus' name.
On Christ, the solid rock, I stand;
All other ground is sinking sand.
When darkness seems to veil His face,
I rest on His unchanging grace;
In every high and stormy gale
My anchor holds within the veil.
His oath, His covenant, and blood
Support me in the 'whelming flood:
When all around my soul gives way,
He then is all my hope and stay.
When I shall launch in worlds unseen
O may I then be found in Him,
Clothed in His righteousness alone,
Faultless to stand before His throne.
Edward Mote, 1797 - 1874
Tuesday, 2 November 2010
ME sufferers staged a protest outside the Department of Health in Whitehall on the first day that their blood was banned from being used in blood transfusions. ME patients are banned from donating blood from 1st Nov 2010. According to NHS Blood and Transplant it is “as a precaution to protect the donor’s safety by ensuring their condition is not made worse by donating blood”.
The ME patients I spoke to believe that it is not to protect the donor but the recipient of their blood.
This would raise an interesting question: ME sufferers are told by the medical profession that the cause of Myalgic Encephalomyelitis is psychological and not physiological. Then why is the safe use of their blood now in doubt? This suggests that ME is caused by something in the blood, perhaps something like XMRV.
XMRV, short for Xenotropic Murine Leukaemia Virus, a retrovirus, discovered in 2006, is an infectious retrovirus of the same family as HIV.
In the USA, researchers discovered in 2009 that there was a strong link between ME/CFS and XMRV (cited by Lombardi/Ruscetti in Science) and later in 2010 Murine Leukaemia viruses were also found in ME patients as shown in the PNAS publication of the Alter/Lo Study.
The UK is not unique in taking the step to ban blood from being taken from ME patients, other countries have also done so, but at least in Canada, Australia, New Zealand and the USA, it has been admitted that they have imposed the ban to protect the public from the potential risk of infection from the newly discovered virus XMRV.
At the moment, there are 250,000 ME patients in the UK and 2.7 million worldwide. There is no cure or effective treatment.
Photographs by Mario Mitsis
Thursday, 28 October 2010
27 October 2010
Forty children have died after a routine vaccination such as MMR and 2,100 more have suffered a serious reaction, UK health authorities have been forced to disclose this week – and these figures are just the tip of the iceberg.
Two of the vaccinated children have been left with permanent brain damage, and 1500 others have suffered neurological reactions, including 11 cases of brain inflammation and 13 cases of epilepsy and coma. Overall, there have been more than 2,100 adverse reactions to a childhood vaccine in the UK in the last seven years.
The UK’s Medicine and Healthcare Products Regulatory Authority (MHRA) was forced to reveal the figures following a request from a journalist under freedom of information legislation.
The true picture is likely to be far worse. The MHRA cases are only those that doctors have reported; if the doctor does not believe the vaccine has caused the reaction, he will not report it. It is suspected that just 10 per cent of all deaths and reactions from vaccines are ever reported; if so, this means that 400 children have died from a vaccine and 21,000 have suffered an adverse reaction in the UK alone. The true situation will be far worse in countries such as the US where childhood vaccination is compulsory.
Last month, the UK government was forced by a court to pay damages to a mother whose son was left with severe brain damage after an MMR vaccination. Another 500 similar cases are currently going through the UK courts.
These figures represent a major setback in the relationship between doctors and parents. Most parents have accepted the reassurances of doctors and health authorities that the vaccines are safe, and that they are doing the best for their child and the community.
Now, if things go wrong, they may be less inclined to believe the doctor’s denials that the vaccine is to blame.
(Source: Sunday Times, October 24, 2010).
Thursday, 21 October 2010
The wise according to this world
Their judgments freely make:
“There is no God,” some do declare,
His name in vain they take.
But when the years do take their toll
And life doth fade away,
God shall remain unchanged, whilst they
Await the Judgment Day.
With science, falsely called, they seek
To make their theories known
And those who hold the truth are jeered,
Whilst heresies have grown.
“This world has no design or plan,”
Wild fables they believe;
But such will God to their own thoughts
And condemnation leave.
The things of God are clearly seen
In all this world around:
His works both in the heavens above
And in the earth are found.
Yet greater still the works of love,
Which Jesus Christ has wrought;
When, on the cross, the souls of men
With blood He dearly bought.
Oh why should God, who reigns above
On heaven’s glorious throne,
Deign to reply to sinful men
To make their folly known?
In vain their voices do defy
The Lord, their God and King:
Through time and through eternity
His praises loud shall ring.
Friday, 15 October 2010
People with ME banned from giving blood in UK
BLOOD transfusion services in the UK last week became the latest to ban people who have had ME or chronic fatigue syndrome from giving blood. NHS Blood and Transplant (NHSBT), the body which oversees donations, says the ban protects people with ME from possible relapses after they have given blood.
Charles Shephard, medical adviser to UK charity the ME Association, backs the ban. But he suggests it could be linked to the recent finding that potentially harmful mouse leukaemia viruses are present in the blood of some people with ME. Shephard believes that the primary aim of the ban is precautionary, to stop donated blood becoming contaminated with the viruses, in case they later turn out to be problematic.
Sue Barnes, associate medical director of the NHSBT, says there is no evidence of a transfusion risk from the viruses, but that the UK transplant service would continue to monitor the situation.
Tuesday, 5 October 2010
How sweet the name of Jesus sounds
In a believer's ear!
It soothes his sorrows, heals his wounds,
And drives away his fear.
It makes the wounded spirit whole,
And calms the troubled breast;
'Tis manna to the hungry soul,
And to the weary rest.
Dear name! the rock on which I build,
My shield and hiding-place,
My never-failing treasury, filled
With boundless stores of grace.
Jesus! my Shepherd, Brother, Friend,
My Prophet, Priest, and King;
My Lord, my Life, my Way, my End,
Accept the praise I bring.
Weak is the effort of my heart,
And cold my warmest thought;
But when I see Thee as Thou art,
I'll praise Thee as I ought.
Till then I would Thy love proclaim
With every fleeting breath;
And may the music of Thy Name
Refresh my soul in death!
John Newton, 1725 - 1807
Friday, 1 October 2010
The ME Association have re-designed their website. I think the new site looks good, is much clearer and better laid out than previously, and it can be found by clicking on the link above. Do take a look!
Looking at the front of the site, my main concern is the continued use by MEA of the term Myalgic Encephalopathy instead of Myalgic Encephalomyelitis. ME-opathy is not an official, accepted (alternative) name for ME; it is not recognised by the World Health Organisation; and, as I see it, its use only serves to cause further confusion.
For further information, see the article Note on the term "Myalgic Encephalomyelitis" by Eileen Marshall and Margaret Williams, available online at -http://www.meactionuk.org.uk/Note_on_the_term_ME.htm
Thursday, 23 September 2010
22 September 2010
The untested swine flu vaccine is being included in the annual flu jab being given to the elderly this winter. Although health officials claim that swine flu could still become a major epidemic, it is being done to reduce enormous stock levels of the vaccine that governments were conned into ordering by the pharmaceutical industry. The policy, however, is exposing large numbers of vulnerable people – including the elderly, those with heart disease and chest problems, and diabetics - to the possible effects of the swine flu vaccine. The vaccine has never been properly tested, and contains thiosermal, a mercury-based preservative. Key workers who were vaccinated last year against the supposed swine flu pandemic reported having headaches, sleeplessness and stomach cramps. Despite credit-crunch times, governments around the world ordered billions of vaccines, after the World Health Organization – influenced by drug company advisers – declared that swine flu (the H1N1 virus) would become a pandemic, killing millions of people. This, in turn, triggered clauses in contracts that forced governments into ordering the vaccine. The UK government admits it wasted £200m on useless stocks of the vaccine, and has been one of the first to include it in the latest round of seasonal flu jabs. Other governments are expected to follow, and will use the WHO as the reason. The WHO has urged health agencies to remain vigilant, even though it accepts that swine flu will not be an epidemic, let alone a pandemic. (Sources: Sunday Times, September 19, 2010).
The Swine Flu vaccine being included in the Winter Flu jab is also mentioned in The Telegraph -
Friday, 3 September 2010
C H Spurgeon's Morning Devotional for September 2nd
“But Simon’s wife’s mother lay sick of a fever, and anon they tell him of her.”
Very interesting is this little peep into the house of the Apostolic Fisherman. We see at once that household joys and cares are no hindrance to the full exercise of ministry, nay, that since they furnish an opportunity for personally witnessing the Lord’s gracious work upon one’s own flesh and blood, they may even instruct the teacher better than any other earthly discipline. Papists and other sectaries may decry marriage, but true Christianity and household life agree well together. Peter’s house was probably a poor fisherman’s hut, but the Lord of Glory entered it, lodged in it, and wrought a miracle in it. Should our little book be read this morning in some very humble cottage, let this fact encourage the inmates to seek the company of King Jesus. God is oftener in little huts than in rich palaces. Jesus is looking round your room now, and is waiting to be gracious to you. Into Simon’s house sickness had entered, fever in a deadly form had prostrated his mother-in-law, and as soon as Jesus came they told him of the sad affliction, and he hastened to the patient’s bed. Have you any sickness in the house this morning? You will find Jesus by far the best physician, go to him at once and tell him all about the matter. Immediately lay the case before him. It concerns one of his people, and therefore will not be trivial to him. Observe, that at once the Saviour restored the sick woman; none can heal as he does. We may not make sure that the Lord will at once remove all disease from those we love, but we may know that believing prayer for the sick is far more likely to be followed by restoration than anything else in the world; and where this avails not, we must meekly bow to his will by whom life and death are determined. The tender heart of Jesus waits to hear our griefs, let us pour them into his patient ear.
Thursday, 2 September 2010
After years of reassuring parents about the safety of the MMR (measles, mumps, rubella) vaccine, the UK government has finally had to concede that it can have serious side effects. A UK court has ruled that the vaccine caused severe brain damage in a boy, now aged 18, and has ordered the government to pay compensation. The ruling brings to an end a lengthy campaign by the boy’s mother, Jackie Fletcher, who created the pressure group JABS to help other parents win compensation for their vaccine-damaged children. Jackie’s son, Robert, was just 13 months old when he had the MMR vaccination. From being a healthy baby who was developing normally, he started to suffer epileptic fits and became unresponsive. He is now severely disabled. Jackie and her family have been awarded £91,000 in compensation. The judgement also sends out hope to the thousands of parents in the UK who are also fighting for compensation. (Source: Sunday Times, August 29, 2010).
Wednesday, 1 September 2010
People with ME/CFS to be permanently excluded from giving blood in the UK from 1 November this year - Department of Health announcement
The Department of Health has decided to ban blood donation permanently from all prospective donors in the UK who report they have had ME/CFS from 1 November this year. The decision was announced in an email sent to The ME Association today by the Department's Director of Health Protection.
In a brief email, Clara Swinson writes:
The announcement has already been welcomed by contributors to ME/CFS internet forums around the world as further indication that the physical nature of the illness is being taken ever more seriously. Clara Swinson's email does not reveal the extent to which studies into the XRMV virus figured in Department of Health's thinking.
"As of 1st November 2010, blood donors who report that they have had ME/CFS will be permanently excluded from giving blood in the UK. This change is being made on the grounds of donor safety, as ME/CFS is a relapsing condition. It brings practice for ME/CFS into line with other relapsing conditions or neurological conditions of unknown origin.
"The change to donor selection criteria is being made following a recommendation by the UK Blood Services Standing Advisory Committee on the Care and Selection of Donors, and Joint Professional Advisory Committee (JPAC)."
Wednesday, 25 August 2010
New study results released: Detection of MLV-related virus gene sequences in blood of patients with chronic fatigue syndrome and healthy blood donors
Chronic fatigue syndrome (CFS) is a serious systemic illness of unknown cause. A recent study identified DNA from a xenotropic murine leukemia virus-related virus (XMRV) in peripheral blood mononuclear cells (PBMCs) from 68 of 101 patients (67%) by nested PCR, as compared with 8 of 218 (3.7%) healthy controls. However, four subsequent reports failed to detect any murine leukemia virus (MLV)-related virus gene sequences in blood of CFS patients. We examined 41 PBMC-derived DNA samples from 37 patients meeting accepted diagnostic criteria for CFS and found MLV-like virus gag gene sequences in 32 of 37 (86.5%) compared with only 3 of 44 (6.8%) healthy volunteer blood donors. No evidence of mouse DNA contamination was detected in the PCR assay system or the clinical samples. Seven of 8 gag-positive patients tested again positive in a sample obtained nearly 15 y later. In contrast to the reported findings of near-genetic identity of all XMRVs, we identified a genetically diverse group of MLV-related viruses. The gag and env sequences from CFS patients were more closely related to those of polytropic mouse endogenous retroviruses than to those of XMRVs and were even less closely related to those of ecotropic MLVs. Further studies are needed to determine whether the same strong association with MLV-related viruses is found in other groups of patients with CFS, whether these viruses play a causative role in the development of CFS, and whether they represent a threat to the blood supply.
To read the full paper - http://www.pnas.org/content/early/2010/08/16/1006901107.full.pdf
Supporting information - http://www.pnas.org/content/suppl/2010/08/16/1006901107.DCSupplemental/pnas.201006901SI.pdf
Write-up in the Wall Street Journal - http://online.wsj.com/article/SB10001424052748703846604575447744076968322.html?mod=WSJEUROPE_hpp_MIDDLEThirdNews
New Scientist - "Virus link with chronic fatigue syndrome resurfaces" -
Tuesday, 17 August 2010
Two Reno scientists, who last year discovered a new infectious human retrovirus they linked to Chronic Fatigue Syndrome, said Monday that their findings have been replicated and confirmed by the U.S. Food and Drug Administration.
Dr. Judy Mikovits, one of the lead researchers with the Whittemore Peterson Institute for Neuro-Immune Disease in Reno, said the FDA’s review of their findings is scheduled to be published in September.
“There has been an issue over whether anybody could replicate our study, and it will not only confirm our findings but extend our findings, which is really exciting for us,” she said.
Mikovits said they also have new, unpublished data concerning the retrovirus, XMRV, that could lead to treatment of Chronic Fatigue Syndrome.
“We have immune system profiles and we can tell by the immune system how the XMRV is doing the damage,” she said. “So we could have a diagnostic test to follow clinical treatment and show that people’s immune systems go back to normal. That’s the latest data that’s really amazing. That’s what we’re after.”
That data will be published by the end of the year, probably in a clinical immunology journal, she said.
Lombardi said clinical trials could begin soon at the Whittemore Peterson Institute, which is relocating from its tiny laboratory on the University of Nevada, Reno campus to the university’s newly opened Center for Molecular Medicine.
“Actually, we already have been contacted by people who are sending us tests, perceiving that they may be asked to be part of the clinical trials,” he said.
“I think once the (FDA) paper comes out and once the controversy is put to rest, the pharmaceutical companies will realize that this is some very low-hanging fruit for them to make the next transition,” said Lombardi. “There are so many drugs that have been developed for HIV, and it’s a retrovirus. So there’s probably a ton of HIV drugs that they can go back and re-screen that could be used.”
There also are three published drugs that work against XMRV, Mikovits said.
“We totally expect at least one clinical treatment trial before the end of the year,” she said. “That is our goal and that’s what this new facility is for.”
Friday, 6 August 2010
Also, recordings on both CD and DVD of the School of Theology, "Winning And Keeping Souls From The World", held at the Met Tab in July are now available from the Tabernacle Bookshop - http://www.tabernaclebookshop.org/
The Merger of Calvinism with Worldliness from Sword & Trowel 2009, No. 1 by Dr Peter Masters
When I was a youngster and newly saved, it seemed as if the chief goal of all zealous Christians, whether Calvinistic or Arminian, was consecration. Sermons, books and conferences stressed this in the spirit of Romans 12.1-2, where the beseeching apostle calls believers to present their bodies a living sacrifice, and not to be conformed to this world. The heart was challenged and stirred. Christ was to be Lord of one’s life, and self must be surrendered on the altar of service for him.
But now, it appears, there is a new Calvinism, with new Calvinists, which has swept the old objectives aside. A recent book, Young, Restless, Reformed, by Collin Hansen tells the story of how a so-called Calvinistic resurgence has captured the imaginations of thousands of young people in the USA, and this book has been reviewed with great enthusiasm in well-known magazines in the UK, such as Banner of Truth, Evangelical Times, and Reformation Today.
This writer, however, was very deeply saddened to read it, because it describes a seriously distorted Calvinism falling far, far short of an authentic life of obedience to a sovereign God. If this kind of Calvinism prospers, then genuine biblical piety will be under attack as never before.
The author of the book is a young man (around 26 when he wrote it) who grew up in a Christian family and trained in secular journalism. We are indebted to him for the readable and wide-reaching survey he gives of this new phenomenon, but the scene is certainly not a happy one.
The author begins by describing the Passion, conference at Atlanta in 2007, where 21,000 young people revelled in contemporary music, and listened to speakers such as John Piper proclaiming Calvinistic sentiments. And this picture is repeated many times through the book – large conferences being described at which the syncretism of worldly, sensation-stirring, high-decibel, rhythmic music, is mixed with Calvinistic doctrine.
We are told of thunderous music, thousands of raised hands, ‘Christian’ hip-hop and rap lyrics (the examples seeming inept and awkward in construction) uniting the doctrines of grace with the immoral drug-induced musical forms of worldly culture.
Collin Hansen contends that American Calvinism collapsed at the end of the nineteenth century and was maintained by only a handful of people until this great youth revival, but his historical scenario is, frankly, preposterous. As one who regularly visited American seminaries to speak from the early 1970s, I constantly met many preachers and students who loved the doctrines of grace, preaching also in churches of solid Calvinistic persuasion. But firmer evidence of the extensive presence of Calvinism is seen from the fact that very large firms of publishers sent out a stream of reformed literature post-war and through the 1980s. The mighty Eerdmans was solidly reformed in times past, not to mention Baker Book House, and Kregel and others. Where did all these books go – thousands upon thousands of them, including frequently reprinted sets of Calvin’s commentaries and a host of other classic works?
In the 1970s and 80s there were also smaller Calvinistic publishers in the USA, and at that time the phenomenon of Calvinistic discount Christian bookshops began, with bulging catalogue lists and a considerable following. The claim that Calvinism virtually disappeared is hopelessly mistaken.
Indeed, a far better quality Calvinism still flourishes in very many churches, where souls are won and lives sanctified, and where Truth and practice are both under the rule of Scripture. Such churches have no sympathy at all with reporter Collin Hansen’s worldly-worship variety, who seek to build churches using exactly the same entertainment methods as most charismatics and the Arminian Calvary Chapel movement.
The new Calvinists constantly extol the Puritans, but they do not want to worship or live as they did. One of the vaunted new conferences is called Resolved, after Jonathan Edwards’ famous youthful Resolutions (seventy searching undertakings). But the culture of this conference would unquestionably have met with the outright condemnation of that great theologian.
Resolved is the brainchild of a member of Dr John MacArthur’s pastoral staff, gathering thousands of young people annually, and featuring the usual mix of Calvinism and extreme charismatic-style worship. Young people are encouraged to feel the very same sensational nervous impact of loud rhythmic music on the body that they would experience in a large, worldly pop concert, complete with replicated lighting and atmosphere. At the same time they reflect on predestination and election. Worldly culture provides the bodily, emotional feelings, into which Christian thoughts are infused and floated. Biblical sentiments are harnessed to carnal entertainment. (Pictures of this conference on their website betray the totally worldly, showbusiness atmosphere created by the organisers.)
In times of disobedience the Jews of old syncretised by going to the Temple or the synagogue on the sabbath, and to idol temples on weekdays, but the new Calvinism has found a way of uniting spiritually incompatible things at the same time, in the same meeting.
C J Mahaney is a preacher highly applauded in this book. Charismatic in belief and practice, he appears to be wholly accepted by the other big names who feature at the ‘new Calvinist’ conferences, such as John Piper, John MacArthur, Mark Dever, and Al Mohler. Evidently an extremely personable, friendly man, C J Mahaney is the founder of a group of churches blending Calvinism with charismatic ideas, and is reputed to have influenced many Calvinists to throw aside cessationist views.
It was a protégé of this preacher named Joshua Harris who started the New Attitude conference for young people. We learn that when a secular rapper named Curtis Allen was converted, his new-born Christian instinct led him to give up his past life and his singing style. But Pastor Joshua Harris evidently persuaded him not to, so that he could sing for the Lord. New Calvinists do not hesitate to override the instinctual Christian conscience, counselling people to become friends of the world.
One of the mega-churches admired in the book is the six-thousand strong Mars Hill Church at Seattle, founded and pastored by Mark Driscoll, who blends emerging church ideas (that Christians should utilise worldly culture) with Calvinistic theology [see endnote 1].
This preacher is also much admired by some reformed men in the UK, but his church has been described (by a sympathiser) as having the most ear-splitting music of any, and he has been rebuked by other preachers for the use of very ‘edgy’ language and gravely improper humour (even on television). He is to be seen in videos preaching in a Jesus teeshirt, symbolising the new compromise with culture, while at the same time propounding Calvinistic teaching. So much for the embracing of Puritan doctrine divested of Puritan lifestyle and worship.
Most of the well-known preachers who promote and encourage this ‘revival’ of Calvinism have in common the following positions that contradict a genuine Calvinistic (or Puritan) outlook:
1. They have no problem with contemporary charismatic-ethos worship, including extreme, heavy-metal forms.
2. They are soft on separation from worldliness [see endnote 2].
3. They reject the concern for the personal guidance of God in the major decisions of Christians (true sovereignty), thereby striking a death-blow to wholehearted consecration.
4. They hold anti-fourth-commandment views, taking a low view of the Lord’s Day, and so inflicting another blow at a consecrated lifestyle.
Whatever their strengths and achievements (and some of them are brilliant men by any human standard), or whatever their theoretical Calvinism, the poor stand of these preachers on these crucial issues will only encourage a fatally flawed version of Calvinism that will lead people to be increasingly wedded to the world, and to a self-seeking lifestyle.
Truly proclaimed, the sovereignty of God must include consecration, reverence, sincere obedience to his will, and separation from the world.
You cannot have Puritan soteriology without Puritan sanctification. You should not entice people to Calvinistic (or any) preaching by using worldly bait. We hope that young people in this movement will grasp the implications of the doctrines better than their teachers, and come away from the compromises. But there is a looming disaster in promoting this new form of Calvinism.
Why do some British Christians who hold the doctrines of grace give enthusiastic reviews to a book like this? There have been times in the past when large numbers of young people have suddenly become intellectually enthusiastic about solid Christian doctrine, only to abandon it almost as quickly. One thinks of the tremendous response the unique oratory of Francis Schaeffer secured on university campuses in the 1960s, and no doubt some young people were truly saved and established, but very many more turned aside. Gripped by the superiority of a biblical worldview, they momentarily despised the illogical, flaccid ideas of this world, but the impression in numerous cases was natural rather than spiritual. The present new, heady Calvinism, shorn of practical obedience will certainly prove to be ephemeral, leaving the cause compromised and scarred.
Has this form of Calvinism come to Britain yet? Alas, yes; one only has to look at the ‘blogs’ of some younger reformed pastors who put themselves forward as mentors and advisers of others. When you look at their ‘favourite films’, and ‘favourite music’ you find them unashamedly naming the leading groups, tracks and entertainment of debased culture, and it is clear that the world is still in their hearts. Years ago, such brethren would not have been baptised until they were clear of the world, but now you can go to seminary, no questions asked, and take up a pastorate, with unfought and unsurrendered idols in the throne room of your life. What hope is there for churches that have under-shepherds whose loyalties are so divided and distorted?
Aside from pastors, we know some ‘new’ young Calvinists who will never settle in a dedicated, working church, because their views live only in their heads and not their hearts. We know of some whose lives are not clean. We know of others who go clubbing. The greater their doctrinal prowess, the greater their hypocrisy.
These are harsh words, but they lead me to say that where biblical, evangelical Calvinism shapes conduct, and especially worship, it is a very humbling, beautiful system of Truth, but where it is confined to the head, it inflates pride and self-determination.
The new Calvinism is not a resurgence but an entirely novel formula which strips the doctrine of its historic practice, and unites it with the world.
Why have the leading preachers servicing this movement compromised so readily? They have not been threatened by a Soviet regime. No one has held a gun to their heads. This is a shameful capitulation, and we must earnestly pray that what they have encouraged will not take over Calvinism and ruin a generation of reachable Christian young people.
A final sad spectacle reported with enthusiasm in the book is the Together for the Gospel conference, running from 2006. A more adult affair convened by respected Calvinists, this nevertheless brings together cessationists and non-cessationists, traditional and contemporary worship exponents, and while maintaining sound preaching, it conditions all who attend to relax on these controversial matters, and learn to accept every point of view. In other words, the ministry of warning is killed off, so that every -error of the new scene may race ahead unchecked. These are tragic days for authentic spiritual faithfulness, worship and piety.
True Calvinism and worldliness are opposites. Preparation of heart is needed if we would search the wonders and plumb the depths of sovereign grace. We find it in the challenging, convicting call of Joshua:
‘Now therefore fear the Lord, and serve him in sincerity and in truth: and put away the gods which your fathers served on the other side of the flood, and in Egypt; and serve ye the Lord. And if it seem evil unto you to serve the Lord, choose you this day whom ye will serve; whether the gods which your fathers served that were on the other side of the flood, or the gods of the Amorites, in whose land ye dwell: but as for me and my house, we will serve the Lord.’
1 His resolution of the question of divine sovereignty versus human free will, however, is much nearer to the Arminian view.
2 A recent book entitled Worldliness: Resisting the Seduction of a Fallen World by C J Mahaney and others, hopelessly under-equips young believers for separation from the world, especially in the area of music, where, apparently, the Lord loves every genre, and acceptability is reduced to two misleading and subjective questions.
Monday, 2 August 2010
I have only recently come across this organisation. The following is from the front page of the website -
THYROID PATIENT ADVOCACY (TPA) is an independent user-led organisation established to ensure that all thyroid disease sufferers are given a correct diagnosis and receive effective treatment. TPA believes all patients should have access to all relevant tests and treatment, including synthetic or natural T3.
As a result, TPA campaigns for better education in diagnostics and treatment and provides extensive support and guidance for all sufferers.
TPA is managed by a group of dedicated thyroid patients who volunteer their services freely. The web site, the TPA-UK Information Pack and the Internet discussion forum is available to all and will help patients and doctors develop greater knowledge and understanding about the illness, will advise on reliable diagnostic tests, and recommend where to obtain proper, effective treatment.
Monday, 26 July 2010
Invest in ME recently received an invitation from the British Association for Chronic Fatigue Syndrome/ Myalgic Encephalomyelitis (BACME) inviting us to apply to become an executive member of that organisation.
BACME is chaired by consultant paediatrician Dr Esther Crawley - who was recently awarded a grant to do a clinical trial on the Lightning process (funded with £164,000 from the Linbury Trust and the Ashden Trust) - a business which assumes that no matter what is causing an ME patient's illness it will help cure a patient from them.
With cases of people with ME being made worse from this business the recent Norwegian film by Paal Winsents ("Make Me Well") illustrates the danger of people with no medical training attempting to treat a neurological illness such as ME. A telling quote from a LP practitioner in that film says it all -
".... It does not matter how it started. Sometimes people had a bacterial infection, sometimes people had a viral infection. It does not matter how it started. The Lightning Process works equally well".
Such uninformed, non-clinical and dangerous statements being used by people promoting businesses without any medical training, at a time when the need for more funding for biomedical research into ME and the evidence to support that funding requirement is overwhelming, is symptomatic of the problems on a non-strategic, non-biomedical approach to diagnosing and treating people with ME. Meanwhile ME patients and their families have to witness this absurd waste of money.
Dr. Crawley's views on ME aren't those of Invest in ME's and we have serious concerns about her position as chair of an organisation such as this.
The Assistant Chair of BACME is Alison Wearden, who is Reader in Psychology at the University of Manchester, Chair Elect of British Psychological Society's Division of Health Psychology and Associate Editor of British Journal of Health Psychology and whose studies include "Illness cognitions and diabetes - how the beliefs which patients hold about their diabetes impact on their attempts to manage it, their adjustment and well-being". Wearden was head of the FINE trial(click here) - a waste of taxpayers' money which resulted in nothing of value for people with ME.
BACME has a constitution to which members have to sign up. In this constitution, which BACME requires its members to support, it includes the following -
2.2.1 To champion evidence-based approaches to the treatment of CFS/ME, such as those provided in the NICE guidelines
2.2.4 To support the delivery of services and to enable services to maintain standards of care in the treatment of CFS/ME as set out in the NICE guidelines
4. The Executive
4.1.4 The BACME Executive will invite no more than four people drawn from National UK CFS/ME organisations which explicitly support the aims and constitution of the organisation to sit on the Executive committee as either observers or members
Invest in ME rejected the NICE Guidelines and therefore cannot agree to endorse a constitution which lists among other things the above objectives.
Invest in ME endorse the critique set out by Twisk FNM, Maes M. in their review of CBT/GET in which they state
"So, it can be concluded that the efficacy claim for CBT/GET is false. But what is more important, is the fact that numerous studies support the thesis that exertion, and thus GET, can physically harm the majority of the ME/CFS patients.
This assertion is confirmed by the outcomes of two large patient surveys in the UK and Norway, and two smaller surveys in Scotland and the Netherlands."
(A review on Cognitive Behavorial 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 Endocrinol Lett. 2009 Aug 26;30(3):284-299.)click here
The NICE guidelines need complete revision as their current version is far from evidence-based.
The NICE guidelines have been shown to be ineffectual, biased, unusable, with ME patients eventually taking NICE to a judicial review.
For an organisation to support NICE, and require members to abide by them, let alone "champion" them illustrates a flawed and damaging basis for any claim to represent people with ME and their families.
Such an organisation is likely to continue to force a continuing approach of going round in circles, obfuscating the true requirements for ME patients and achieving little of real value for people with ME and their families.
With BACME maintaining its present structure, current chairman and constitution then Invest in ME will decline any offer to apply for membership of this organisation.
It would be unethical of Invest in ME to sign up to such a constitution and Invest in ME's aim remains to find ways other than those set out in the NICE guidelines to treat patients diagnosed with ME according to the Canadian Clinical Consensus guidelines.
Magical Medicine: How to Make a Disease Disappear - click here
Lightning Process - The Falsehood of Magical Medicine - IiME Newsletter March 2010 - click here
Can the MRC PACE Trial be justified? - click here
Wessely's Way: Rhetoric or reason? - click here
Invest in ME - Communications with the UK Chief Medical Officer - click here
Friday, 9 July 2010
I recently came across another website that will be of help to those who already know that they have problems when eating anything containing monosodium glutamate, as well as for those who are currently looking for further information on the subject.
The front page of the website includes the following -
You have reached us because you or someone you care about is suffering from puzzling chronic conditions such as headaches, stomach disorders, fatigue, depression, and many other problems. Tests have come up negative and you want answers.
What you will find out at this time will most likely be the missing piece of the puzzle. What we discovered helped our family and thousands of others. Some skeptics will think, "It's too simple an explanation", but the truth is, most of us are suffering needlessly because of so-called "safe" food additives, namely excitatory neuro-transmitters (nicknamed excitotoxins). The main ones are monosodium glutamate (MSG), aspartame, and L-cysteine. You may think that you are actually avoiding MSG if you avoid Chinese restaurants, but this factory created flavor enhancer is in almost every bottled, bagged, frozen, or canned processed food on super market shelves. But since MSG is often a component of a formulation, it is not labeled as such. You've seen words like autolyzed yeast, hydrolyzed protein, and whey protein. Each of these substances contain a percentage of glutamate, the harmful component of MSG.
I didn't correlate my headaches and diarrhea to the food I was eating for years. Most of us don't because reactions to these excitatory substances can occur from ten minutes to 48 hours after ingestion. But when my 19 year old son began to develop debilitating headaches, my search for answers led me to the culprit: MSG. See if you suffer from any of these commonly reported symptoms and disorders.
Friday, 2 July 2010
The Glorious Trinity
Divine, Immortal, Triune God,
Three persons yet the same,
We praise Thee for the mystery
And glory of Thy name.
Great Father, God, Thy Word decreed
This world into its place,
And there in Eden's purity
Brought forth the human race.
When Adam into sin declined,
Thy purpose was revealed:
Salvation's plan for fallen man
Was by Thy promise sealed.
Eternal Son, by love sent forth,
An offering for our sin;
To satisfy the Law's demands,
That grace might enter in.
No tongue can tell the debt we owe
To Thee our Saviour God,
Who for His people freely shed
His pure and precious blood.
Oh Holy Spirit, Comforter,
Unseen yet ever near,
Who draws us by the Father's love
And takes away our fear;
Convince this world of sin we pray
And glorify the Son,
That many precious souls today
Might to His cause be won.
Divine, Immortal, Triune God,
Three persons yet the same,
We praise Thee for the mystery
And glory of Thy name.