Wednesday, 25 December 2013

Christmas Day

A Very Happy Christmas to readers of my blog!

From the Bible, Matthew chapter 1 verses 18 – 25 -

Now the birth of Jesus Christ was on this wise: When as his mother Mary was espoused to Joseph, before they came together, she was found with child of the Holy Ghost. Then Joseph her husband, being a just man, and not willing to make her a publick example, was minded to put her away privily. But while he thought on these things, behold, the angel of the Lord appeared unto him in a dream, saying, Joseph, thou son of David, fear not to take unto thee Mary thy wife: for that which is conceived in her is of the Holy Ghost. And she shall bring forth a son, and thou shalt call his name JESUS: for he shall save his people from their sins. Now all this was done, that it might be fulfilled which was spoken of the Lord by the prophet, saying, Behold, a virgin shall be with child, and shall bring forth a son, and they shall call his name Emmanuel, which being interpreted is, God with us. Then Joseph being raised from sleep did as the angel of the Lord had bidden him, and took unto him his wife: And knew her not till she had brought forth her firstborn son: and he called his name JESUS.”


A Hymn - 

THE Son of God, in mighty love,
Came down to Bethlehem for me,
Forsook His throne of light above,
An infant on the earth to be.

In love, the Father’s sinless Child
Sojourned at Nazareth for me;
With sinners dwelt the Undefiled,
The Holy One in Galilee.

Jesus Whom angel hosts adore,
Became a man of griefs for me:
In love, though rich, becoming poor,
That I, through Him, enriched might be.

Though Lord of all, above, below,
He went to Olivet for me;
He drank my cup of wrath and woe,
And bled in dark Gethsemane.

The ever-bless├Ęd Son of God
Went up to Calvary for me:
There paid my debt, there bore my load
In His own body on the tree.

He finished all! the veil was rent;
Salvation now is sure and free;
I leave behind my banishment,
O Father, to return to Thee!
               
Horatius Bonar, 1808-89


A Poem - 

Is This The One?

Is this the One, this Babe laid in a manger,
Is this the One of whom the prophets spoke,
This Child taken to Egypt from great danger
This Child who made His home with humble folk?

Is this the One upon the lonely hillside,
Leaving the crowds to spend the night in prayer;
He who the priests and Pharisees derided,
Will He God’s saving purposes declare?

He came, not as a king to free the nation
To bring deliverance from Roman rule.
He came to bring a different salvation,
Deliv’rance from an enemy more cruel.

So long had man been held in sin’s hard bondage,
So long had fearsome death held men in fear,
So long had God’s great promise stood, to engage
In battle, and in victory appear.

And so the Saviour came, and by His dying
Paid penalty for sin, defeated death;
With His own life man’s full salvation buying,
Cried, “It is finished” with His dying breath.

Finished the reign of sin and death and sorrow,
For all who trust in His redeeming blood;
Opened the way to life and joyful morrow,
In heaven’s eternal day where all is good.

There reigns the risen Saviour, place preparing
For all His people to be with Him there:
There in His vic’try and His glory sharing
In beauty, joy and love beyond compare.

© Jean Stapleton 2013


For God so loved the world, that he gave His only begotten Son, that whosoever believeth in Him should not perish, but have everlasting life” (John 3 v 16).

Saturday, 7 December 2013

ME on TV

On the 4th December 2013, on “The People’s Voice” online TV channel, journalist Sonia Poulton interviewed Jane Colby (of the TYMES Trust) and Rebecca Hansen (of the ME Association in Denmark) about ME and, in particular, about the abuse of people with ME both in the UK and abroad.  It centres on the case of a young lady in Denmark who has been removed from her home and is being held in hospital against her will and that of her family.  It also includes details of why ME is not just “chronic fatigue”.  The interview lasted around 20 minutes and is well worth listening to; it’s quite an eye-opener as to what is going on.
 
The interview is available to watch on YouTube – click here
 

Friday, 6 December 2013

Out of Hours Chronic fatigue syndrome: a patient’s perspective

British Journal of General Practice
https://twitter.com/ollie72/status/406845530673651712/photo/1/large  

(Apparently ME was originally used in the title, but it was unfortunately changed to CFS –
https://twitter.com/ollie72/status/407444271676260352)

In 1999 I contracted a throat infection that receded after many weeks, but I was still unbelievably exhausted with the most intense flu-like malaise. Two years later I was diagnosed with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and joined the 240,000-plus people in the UK with this Illness. I assumed that a diagnosis would lead to effective treatment, but I was in for a shock.

Initially my GP suggested I see a psychotherapist. It seemed a strange recommendation, but I trusted his judgement and decided to see if this would help. Unfortunately it had no impact at all on the illness. My GP then referred me to an endocrinologist who boldly announced that, as the test results were all normal, everything was fine and offered to prescribe antidepressants. I was deeply frustrated by the suggestion that clear test panels meant I should be treated as a depressed patient. I was not inclined to agree that antidepressants were the best treatment when my experience of the symptoms was closer to that of an infection than a mood disorder. In fact, I have been told a number of times that I’m simply depressed, or that I am de-conditioned and just need to exercise. I wouldn’t mind if either diagnosis were true, as there are effective treatments available, but they are inadequate explanations.

CFS/ME waxes and wanes but also causes post-exertional malaise: when patients go beyond their usual (restricted) activity level they suffer a worsening of symptoms which can be severe. Patients often refer to this as a crash. For me this can mean being bedridden for weeks with muscle weakness, dizziness, loss of appetite, and indescribable physical and mental exhaustion. It’s worth noting that my GP has only ever seen me when the symptoms are at the lesser end of the scale. During a crash I am too ill to leave my bed, let alone travel to the surgery.

When I first got sick, CFS/ME seemed to be largely treated as a mysterious psychological condition, with doctors encouraged to limit the number of tests done, and with patients left to self-manage. Since then things have improved a little in that there are fatigue clinics in some areas, but the overall treatment situation remains poor, with most patients receiving little or no effective treatment through the NHS.

The PACE trial is the largest study performed into CFS/ME treatments, primarily cognitive behavioural therapy (CBT) and graded exercise therapy (GET). I think the £5 million cost would have been better spent on immunological studies, exercise physiology testing, and understanding the disease mechanisms. A recently published PACE trial paper reported on ‘recovery’ rates.(1) However, the letters published in response to the paper show that the study’s post-hoc definition of ‘recovery’ was seriously flawed, and so much looser than the recovery criteria outlined in the trial’s protocol that the ‘recovery’ outcomes bear no relation to what an average person, or clinician, would define as recovery of health. PACE was an un-blinded study and the primary outcomes were all subjective self-report measures at risk of response bias. Changes from the trial protocol (2) also meant that it was easier for patients to be classed as improved, yet even then the addition of CBT and GET to specialist medical care led to only an extra 11-15% of patients reporting improvement.(3) This simply underscores the need for more research across all areas to find effective treatments.

CFS/ME presents difficulties for both patients and doctors, reinforcing the need for them to work together in partnership. A recent BMJ editorial (4) entitled Let the Patient Resolution Begin could not have said it better:

“… health care won’t get better until patients play a leading role in fixing it.”

Ollie Comes,
Software engineer, London.

REFERENCES
1. White PD. Goldsmth K. Johnson AL. et al. Recovery from chronic fatigue syndrome after treatments given in the PACE trial Psychol Med 2013 40»10»: 2Z27-223S.

2. White PD. Sharpe MC. Chalder. et al Protocol for the PACE trial: a randomised controlled trial of adaptive pacing. cognitive behaviour therapy, and graded exercise, as supplements to standardised specialist medical care versus standardised specialist medical care alone for patents with the chronic fatigue syndrome / myalgic encephalomyelitis or encephalopathy BMC Neurol 2007; 7: 6

3. White PD. Goldsmith KA Johnson AL, et al. Comparison of adaptive: pacing therapy, cognitive behaviour therapy, graded exercise therapy, and specialist medcal care for chronic fatigue syndrome (PACE): a randomised trial Lancet 2011 377197681:823-836.

4. Richards T, Montori VM, Godlee F.et al Let the patent revolution begin BMJ 2013 346: f2614.

Monday, 2 December 2013

O Little Town Of Bethlehem

A favourite Christmas Carol for the start of December –

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