Thursday, 28 April 2011

PACE is dead, long live PACE?

http://www.angliameaction.org.uk/docs/PACE-Zombie-Science.pdf

I would recommend the above article to you, written by Kevin Short of Anglia ME Action. It was sent to The Lancet, The Royal Colleges and Newspapers on April 28 2011.

Reason

Couldn’t a clock just happen to form; cog meeting cog, face, number and hand?
Surely the spring could wind itself, to tell us the time without sun, candle or sand.
And didn’t the world just roll along and decide to stop not too near the sun,
Then in the merest of billions of years, life thought it was time it should be begun?
Couldn’t a calculator just appear, then add things up and start computing?
And couldn’t the wonderful cosmic array of stars just start shining and shooting?
And maybe the beauty of music began to appear from sound’s discordant contortions,
Perhaps right and wrong once made themselves known from uncertain hopes and misfortunes.
Did all the fish just learn how to swim, and birds teach themselves how to fly?
Do folks with heads full of chance feelings just happen to love, laugh and sigh?
Did all this complexity of teeming life come about from some big explosion?
And will this explain all that’s wrong in life; bitterness, hate, sin and corrosion?
Did Jesus Christ come along for no purpose, be unjustly tried amid hate and strife?
This One crucified, for sinners did die; but He walked from His tomb, the Author of life.
Our God is the reason for life on this planet; no big bang or chance or uncertainty.
Safe in His hand let your times and soul be, for now, tomorrow and eternally.

(Another one by the poet who wishes to remain anonymous!)

Sunday, 24 April 2011

He Is Risen!

Please enjoy the following: two passages from the Bible, a devotional from C H Spurgeon, and a poem by an author who has said he wishes to remain anonymous!

From The Bible

Matthew 20 v 1 – 20 -

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. And as they went to tell his disciples, behold, Jesus met them, saying, All hail. And they came and held him by the feet, and worshipped him. Then said Jesus unto them, Be not afraid: go tell my brethren that they go into Galilee, and there shall they see me. Now when they were going, behold, some of the watch came into the city, and shewed unto the chief priests all the things that were done. And when they were assembled with the elders, and had taken counsel, they gave large money unto the soldiers, Saying, Say ye, His disciples came by night, and stole him away while we slept. And if this come to the governor's ears, we will persuade him, and secure you. So they took the money, and did as they were taught: and this saying is commonly reported among the Jews until this day. Then the eleven disciples went away into Galilee, into a mountain where Jesus had appointed them. And when they saw him, they worshipped him: but some doubted. And Jesus came and spake unto them, saying, All power is given unto me in heaven and in earth. Go ye therefore, and teach all nations, baptizing them in the name of the Father, and of the Son, and of the Holy Ghost: Teaching them to observe all things whatsoever I have commanded you: and, lo, I am with you alway, even unto the end of the world. Amen.

1 Corinthians 15 v 20 – 28 -

But now is Christ risen from the dead, and become the firstfruits of them that slept. For since by man came death, by man came also the resurrection of the dead. For as in Adam all die, even so in Christ shall all be made alive. But every man in his own order: Christ the firstfruits; afterward they that are Christ's at his coming. Then cometh the end, when he shall have delivered up the kingdom to God, even the Father; when he shall have put down all rule and all authority and power. For he must reign, till he hath put all enemies under his feet. The last enemy that shall be destroyed is death. For he hath put all things under his feet. But when he saith, all things are put under him, it is manifest that he is excepted, which did put all things under him. And when all things shall be subdued unto him, then shall the Son also himself be subject unto him that put all things under him, that God may be all in all.


This may not be today’s devotional from C H Spurgeon, but I thought it very fitting:

C H Spurgeon’s Evening Devotional for November 22nd -

http://www.ccel.org/ccel/spurgeon/morneve.d1122pm.html

The Power Of His Resurrection

Philippians 3:10

The doctrine of a risen Saviour is exceedingly precious. The resurrection is the corner-stone of the entire building of Christianity. It is the key-stone of the arch of our salvation. It would take a volume to set forth all the streams of living water which flow from this one sacred source, the resurrection of our dear Lord and Saviour Jesus Christ; but to know that he has risen, and to have fellowship with him as such—communing with the risen Saviour by possessing a risen life—seeing him leave the tomb by leaving the tomb of worldliness ourselves, this is even still more precious. The doctrine is the basis of the experience, but as the flower is more lovely than the root, so is the experience of fellowship with the risen Saviour more lovely than the doctrine itself. I would have you believe that Christ rose from the dead so as to sing of it, and derive all the consolation which it is possible for you to extract from this well-ascertained and well-witnessed fact; but I beseech you, rest not contented even there. Though you cannot, like the disciples, see him visibly, yet I bid you aspire to see Christ Jesus by the eye of faith; and though, like Mary Magdalene, you may not “touch” him, yet may you be privileged to converse with him, and to know that he is risen, you yourselves being risen in him to newness of life. To know a crucified Saviour as having crucified all my sins, is a high degree of knowledge; but to know a risen Saviour as having justified me, and to realize that he has bestowed upon me new life, having given me to be a new creature through his own newness of life, this is a noble style of experience: short of it, none ought to rest satisfied. May you both “know him, and the power of his resurrection.” Why should souls who are quickened with Jesus, wear the grave-clothes of worldliness and unbelief? Rise, for the Lord is risen.


The poem -

While It Is Day

Did you ever pause to wonder why
All light fled away from earth and sky?
Why temple curtain in two was torn,
Or King of kings wore cruel crown of thorn?
Or why Perfect One bore curse and wrath,
Why left all alone was The Lord Sabbaoth?
Tell me my friend why your life has no place
For the just God of love and mercy and grace?

Can you not see that He wrongly tried,
Whom men did scoff at, blaspheme and deride,
Who left Heaven's glory for dirty old earth,
Who cared and healed, loved those of low worth,
Who filled up the sea and covered the land,
Had cruel nails pushed through foot and hand,
Did suffer Hell that Heaven men might see,
Weighed down with sin on one cross of three?

Will you give to Him the life He gave you,
That though grievous sinner, He will make anew?
Will you let Him carry the sheep who is lost,
Safe home to Heaven, bought at such cost?
Will you turn away from the life that you know,
With the love of Christ Jesus within you to grow?
Will you come to God now, while it is day,
Or tell your Creator you know the best way?




Wednesday, 20 April 2011

Times Of Refreshing

Some weeks ago I posted the poem “The End Of The Way” -
http://oneagleswingsme.blogspot.com/2011/03/end-of-way.html

A couple of weeks after that I posted a poem that had been written as a follow-up to “The End Of The Way” called “Though On A Tempestuous Ocean” -
http://oneagleswingsme.blogspot.com/2011/04/though-on-tempestuous-ocean_7592.html

Someone who read both the original poem and the follow-up then proceeded to write the following poem, which they have given me permission to post – although they have asked to remain anonymous!

Times Of Refreshing

He, my portion forever more,
Blessed are the meek and blessed the poor.
Blessed, those believing who have never seen,
All glory to Him Who to Calvary has been.
More agony suffered than mere words can convey,
That His might go home at the end of the way.

The hitting, the spitting, the cruel crown of thorns,
The hating and jeering, all mouths filled with scorns.
Ploughed field for a back, and nails foot and hand,
All glory to Him in Emmanuel’s Land.
Through darkness of Hell, on the cross He did stay,
That we may see light at the end of the way.

The trumpet soon calls, the angels soon gather,
God's glory soon seen and salvation forever.
Every word prophesied, all soon fulfilled,
No pain or sorrow or tears to be spilled.
Our wondrous Redeemer, He soon will say,
"Welcome home dear child, at the end of the way".

Tuesday, 19 April 2011

Report: Complaint to the relevant executive editor of the Lancet about the PACE Trial articles published by the Lancet

Submitted by Malcolm Hooper, Emeritus Professor of Medicinal Chemistry (March 2011; made public April 2011)

(With grateful acknowledgment to members of the ME/CFS community)

Preamble:

"In 1996 when psychiatrists Drs. Peter White and Simon Wessely co-authored a review of “Chronic Fatigue Syndrome” (Joint Royal Colleges Report, CR54, October 1996), a Lancet editorial roundly condemned the publication (“Frustrating survey of chronic fatigue”, Volume 348, Issue 9033, Page 971, 12 October 1996): “Psychiatry has won the day for now …. The sixteen-strong committee was top-heavy with psychiatric experts, so the emphasis on psychological causes and management is no surprise …. We believe that the report was haphazardly set-up, biased, and inconclusive, and is of little help to patients or their physicians”.

"In 2011, when Professors White and Wessely collaborated in a multi-centre trial of cognitive behaviour therapy and graded exercise for “CFS”, peer review at The Lancet failed to identify the same faults.Psychiatry has won the day” again - but only because once again the same people have not been subjected to sufficiently rigorous scientific scrutiny."

The full text of the document:
http://www.meactionuk.org.uk/COMPLAINT-to-Lancet-re-PACE.htm

The full text of the document in Word:
http://www.meactionuk.org.uk/COMPLAINT-to-Lancet-re-PACE.doc

Also, still regarding the PACE Trials publication in the Lancet, a letter entitled “Ignorance is not an option” has been sent by Invest in ME to the Editor of the Lancet, Dr Richard Horton -
http://www.investinme.org/IIME%20Letter%202011-04%20Lancet.htm



Monday, 18 April 2011

ME Awareness Month: Burst Our Bubble

http://www.investinme.org/IiME%20ME%20Awareness%20Burst%20Our%20Bubble.htm

From Invest in ME -

People who suffer from Myalgic Encephalomyelitis (ME) are forced to live in a bubble – isolated from society.

A bubble formed from -

Misinformation

ME is a neurological illness.

For decades there has been a coordinated policy of misinformation about ME presented by vested interests. ME is a neurological illness accepted as such by the UK government as directed by the World Health Organisation.

Ireland is the latest country to ban ME patients from donating blood - the reason being "to protect blood recipients (i.e. patients who receive blood)"

Why would this be necessary unless ME were of an infectious origin?

(USA, Canada, Australia, New Zealand, Malta, Norway and the UK have also banned blood donations from people with ME)

Medical ignorance

Too little professional awareness, too much trust in establishment organisations such as NICE and the MRC, lack of funding of proper research - all of these contribute to medical ignorance.

This ignorance so often pervades the NHS. However, things are changing slowly. Aided by the biomedical research which has been presented at conferences such as those organised by Invest in ME and its European ME Alliance partners the level of knowledge about ME is growing. Biomedical research has proven beyond doubt that there is a viral origin for most ME patients. This education will continue.

Over 60 outbreaks of ME have been recorded worldwide since 1934

ME is 3 times more prevalent than HIV/AIDS – twice as prevalent as MS

25% of ME patients are severely affected - housebound, bedbound

25,000 patients are children

ME is the largest cause of long term sickness absence from school for pupils and staff

Misdiagnosis

Misdiagnosis is one of the most sinister consequences of a healthcare system which is based on lack of funding for biomedical research and which attributes all unknown conditions to a waste-bin diagnosis.

Discrimination

ME patients are dealt a double blow. Not only do they have to deal with the effects of a neurological illness - they also have endure the discrimination which is given to patients by healthcare providers, social services and the DWP. Although the UK government officially recognises ME as a neurological illness it allows the disease to be treated as though it does not exist.

No funding for biomedical research

Since IiME was founded we have been campaigning for a national and international strategy of biomedical research into ME.

ME patients have no approved drugs for treatment

ME patients have no access to specialist ME consultants

ME does not discriminate, anyone can be affected

Government apathy

Each successive government of recent years could have acted on the need for more research, for removal of vested interests from decision-making related to ME, for proper attention to education for children with ME, for human rights, ....etc

The attitudes of successive ministers of health has, up to now, been negligent.

The Chief Medical Officers of England have declined to attend every one of Invest in ME's international ME/CFS conferences which take place every year just a few hundred metres from the CMO's office.

The government and the CMO can change this - yet they continue to do nothing.

Isolation

Many people with ME will experience the isolation that comes with ME.

Most parents will see this awful consequence of this disease as it plays out its effect on their child/children.

This is one of the cruellest consequences of a disease which receives no attention, no funding of biomedical research, no interest from the healthcare providers, no policy from the government and no sensible or informed reporting from the media.

It is time for this to end.

Help us Burst Our Bubble

For ME Awareness Month May 2011 we ask for support to raise awareness of these issues by distributing our leaflets to all healthcare providers, politicians, journalists and to family, friends and others.

Burst Our Bubble

Download our Awareness Poster (in black or white versions) and distribute for ME Awareness Month:

Black - pdf: http://bit.ly/gqeMYE

White - pdf: http://bit.ly/eD2KS3

Invest in ME will also be sending out these as leaflets during ME Awareness Month. We are happy to provide leaflets to groups and to support awareness campaigns (if we have the financial resources to do so)

There is no centre of excellence in the UK that treats and researches ME as a physical illness.

UK Charity Invest in ME wants to change that - Please Help Us

Support our efforts to get a UK centre for examinations and biomedical research into ME.

Invest in ME

Registered UK Charity Nr. 1114035

PO BOX 561, Eastleigh SO50 0GQ, UK

http://www.investinme.org/

Monday, 11 April 2011

Interesting Reading, Particularly Regarding the PACE Trial

Extracts from Professor Leonard Jason’s Presentation at the NIH State of the Knowledge Workshop on ME/CFS, Bethesda, Maryland, 7th – 8th April 2011

by Margaret Williams
http://www.meactionuk.org.uk/Jason-at-SOK-Workshop.htm

At the National Institutes of Health “State of the Knowledge” (SOK) Workshop on ME/CFS held in Bethesda, Maryland on 7th-8th April 2011, Professor Leonard Jason from DePaul University, Chicago, gave a hard-hitting presentation, repeatedly emphasising the absolute necessity for researchers to be looking at the same disorder.

He specifically mentioned the UK PACE Trial (carried out by Wessely School psychiatrists) and noted the controversy flowing from that trial.

The PACE Trial Principal Investigators (PIs) intentionally sought as heterogeneous a cohort of “fatigued” people as possible in order to enhance both recruitment to the trial and the alleged “generalisability” of the Wessely School’s cognitive re-structuring and aerobic exercise programme to as many “fatigued” people as possible (Trial Identifier:3.6).

Such intentional heterogeneity obviously captured people with affective disorders in which “fatigue” is a prominent feature, yet the PIs assert that they were studying patients with “CFS/ME” (which they insist is the same disorder as ME/CFS, a complex neuroimmune disorder) when their definition of “CFS/ME” has few of the features of classic ME/CFS. Indeed, the pathognomonic feature of ME/CFS -- post-exertional fatigability with malaise -- is not required in their definition of “CFS/ME” which has on-going “fatigue” as the primary symptom.

This deliberate conflating of different disorders by the Wessely School has caused dismay amongst international scientists studying classic ME/CFS, who at the SOK Workshop emphasised the near-impossibility of validating the existing biomarkers when such divergent cohorts of subjects are used (for example, by psychiatrists with fixed beliefs about the nature of “CFS/ME” who continue to disregard the biomedical evidence and the key diagnostic criteria contained in the 2003 Canadian Guidelines).

Despite the fact that the UK Department of Health accepts ME/CFS as a neurological disorder of unknown origin, in its recent submission to the NICE “consultation” process regarding any necessity to update the NICE Clinical Guideline 53 on “CFS/ME” that recommends only CBT/GET for people with “CFS/ME”, The Royal College of Paediatrics and Child Health referred to the disorder as: “a psychological illness with physical manifestations” (http://tinyurl.com/65dv56g) and on the Great Ormond Street (childrens) Hospital website, “CFS” is categorised as a somatic problem: it is placed in “Department of Child and Adolescent Mental Health” section and then under “Feeding & Eating Disorders Service” is to be found the following: “emotional eating difficulties (e.g. food phobias) or in the context of somatic problems such as chronic fatigue syndrome” (http://www.gosh.nhs.uk/website/gosh/clinicalservices/DCAMH/Homepage?forumid=331851).

In the UK, NHS staff are likely to obtain their knowledge about the PACE Trial from the “NHS Choices” Information page on its website (http://www.nhs.uk/news/2011/02February/Pages/therapies-moderately-improve-CFS.aspx).

Perhaps unsurprisingly, this website contains frank misinformation about the results of the PACE Trial; for example, the PACE Trial was not a “controlled” trial as claimed; the Oxford criteria are notstandard diagnostic criteria for CFS” when “CFS” is deemed to include ME -- they are used only by the Wessely School who produced them in 1991; PACE participants were notconfirmed as free of mental health problems such as depression and anxiety”; participants did not meet the (proposed) “London Criteria” for myalgic encephlaomyleitis, but a version compiled by the Chief PI (Professor Peter White) himself, which was basically the Oxford criteria without psychiatric illness; SMC (specialist medical care) was not universally provided by a doctor “with specialist experience in CFS”; 22 of these “experienced specialists” were in fact trainees (all from the same centre) who, by virtue of being trainees, could not be called experts experienced in the medical care of people with CFS.

Thus despite hollow assurances from the Department of Health, the grass roots situation in the UK remains dire for people with ME/CFS, so the following quotations from Professor Jason at the SOK Workshop are of particular relevance to patients themselves and to the various agencies of State to which the Wessely School are advisors on “CFS/ME”:

If investigators select samples of patients who are different in fundamental aspects of this illness because of ambiguities with the case definition, then it would be exceedingly difficult for investigators to consistently identify biomarkers”.

In summary, any scientific enterprise depends on reliable and valid ways of classifying patients into diagnostic categories. When diagnostic categories lack reliability and accuracy, the quality of the treatment and clinical research can be significantly compromised”.

If CFS is to be diagnosed reliably across health care professionals, it is imperative to deal with criterion variance issues and provide specific thresholds in scoring rules for the selected symptomatic criteria”.

In the discussion that followed his presentation Jason was emphatic:

Those folks who have primarily affective disorder need to be differentiated”.

I think the key issue is the defining of the sample and in our current scientific publications, the basic description of who these samples are is completely inadequate, and we’ve got to do something to change that….if we don’t tackle that issue…our foundation is just going to be shaky”.

During this discussion, Professor Nancy Klimas commented cogently: “Here we are, quite some 20 years into this, still talking about the bloomin’ case definition”; she registered her frustration and pointed out that lack of a unified case definition prevents the existing biomarkers for neuroimmune disorders being utilised.

Professor Jason responded:

There needs to be a decision as to which are the symptoms and which are the tests that we want to use (so that) everybody uses those particular symptoms and asks questions the same way – standardised questionnaires, and if we can get that accomplished by everybody being on the same page with that, I think we would do enormous benefit for our field”.

What I’m really suggesting, because a lot of what we’re talking about here is biological markers, is that ultimately, if we have samples that are different in different labs and have different characteristics, it’s going to be very difficult for us to get the types of consistency of the biological markers…The problem we’re all faced with is that when we don’t get common findings across labs, it’s very easy for the media – and others – to look at those results and not understand the complexities that we’re faced with and (they) say – oh, you don’t find the same abnormalities, you don’t find the same lab findings, it’s not like HIV (where) you find it everywhere…. ultimately you end up (with it) being thought of as a psychogenic illness, and that’s the problem. It’s the consequence of …attributions being made that I think are not correct”.

At this point, the Editor of the journal “Brain, Behaviour and Immunity” asked a question and then agreed to publish such standardised criteria in his journal, an undertaking that was well-received.

Professor Jason ended the discussion by referring to the UK PACE Trial:

There’s tremendous confusion about who’s in particular samples. Those of you who have been reading about the PACE trial….one of the big issues was, was it the Oxford criteria, was it the Fukuda criteria, or the international, or the Reeves empiric case definition, and I think a lot of controversy came out of that trial in part because people were trying to figure out who were their patients, and I know that they did some subgroup analyses in that study, but I think it’s absolutely critical for this diagnostic issue to be tackled head-on”.

Will the Wessely School psychiatrists pay any attention to this critical issue of diagnostic criteria for ME/CFS or will they persist in ignoring the international scientific research community and implacably insist that “CFS/ME” is a somatoform disorder that is reversible, if not curable, by their own brand of directive psychotherapy as they have done for the last 25 years, to the serious detriment of both patients and progress in medical science?

Friday, 1 April 2011

Though On A Tempestuous Ocean

A few weeks ago I posted the poem “The End Of The Way”. The following poem was written as a reply to “The End Of The Way” and was published in 1888. It was kindly sent to me by the Gospel Standard Trust.

THOUGH on a tempestuous ocean
And much opposition you meet;
Though sickness, and trouble, and sorrow
Encounter your festering feet;
Cheer up, and be glad, weary pilgrim,
Though obstacles rise every day;
By grace you will pass safely over,
To sing at "the end of the way."

There really is nought to dishearten
While walking the sorrowful path;
Though Satan will often endeavour
To prove you a child of God's wrath.
He'll try all he can to distress you,
And fill your poor heart with dismay;
But grace will convey you safe over
To sing at "the end of the way."

The hills which you have to climb upward,
While longing for comfort and rest,
Were travelled by One who before you
Has entered the realms of the blest.
Take courage, then, wearisome pilgrim,
He'll keep thee from going astray;
His strength will convey thee safe over,
To sing at "the end of the way."

Look upward, press forward, and onward,
Nor fear whatsoever you meet,
Though briers and thorns may entangle,
And clog, and trip up your sore feet.
What though a tornado beset you,
With quicksands and rocks in the bay,
At length you will come off triumphant
To sing at "the end of the way."

No fainting, or weariness yonder,
Away in the realms of the blest;
Though here you oft sit down and wonder
If you e'er will enjoy the saints' rest.
Jehovah has said for your comfort,
Though Satan may cause you dismay,
You certainly shall be delivered
To sing at "the end of the way."

No "fountains" or "cordials" are needed
For those safely landed above;
There pleasures unbounded are waiting
And all will be clothed in God's love.
No more will you feel yourself weary
"In the city of unending day,"
But glory for ever be singing,
When you come to "the end of the way."


New York. JOHN AXFORD. (1888)