Sunday, 25 December 2011

Christmas Day

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 Poem -

Silence of the night is broken,
Wondrous news by angels spoken;
Of God’s love the sign and token:
Jesus Christ is born.

Rough the manger where they lay Him,
Swift the shepherds as they seek Him,
Glad return with news about Him:
Christ the Lord has come.

Wise men from the East are trav’ling,
New-born King in Judah seeking,
Kingly presents with them bringing:
Gifts for Christ the King.

Son of God, once Child most holy,
Found no more in manger lowly;
In Himself fulfilling wholly
God’s eternal plan.

Lowly birth to death on Calv’ry,
Life laid down for sinners freely,
Now for those who trust Him only:
Saviour, Lord and King.

© Jean Stapleton 2011.


C H Spurgeon’s Evening Devotional for December 25th

http://www.ccel.org/ccel/spurgeon/morneve.d1225pm.html

And it was so, when the days of their feasting were gone about, that Job sent and sanctified them, and rose up early in the morning, and offered burnt offerings according to the number of them all: for Job said, It may be that my sons have sinned, and cursed God in their hearts. Thus did Job continually.”

Job 1:5

What the patriarch did early in the morning, after the family festivities, it will be well for the believer to do for himself ere he rests tonight. Amid the cheerfulness of household gatherings it is easy to slide into sinful levities, and to forget our avowed character as Christians. It ought not to be so, but so it is, that our days of feasting are very seldom days of sanctified enjoyment, but too frequently degenerate into unhallowed mirth. There is a way of joy as pure and sanctifying as though one bathed in the rivers of Eden: holy gratitude should be quite as purifying an element as grief. Alas! for our poor hearts, that facts prove that the house of mourning is better than the house of feasting. Come, believer, in what have you sinned today? Have you been forgetful of your high calling? Have you been even as others in idle words and loose speeches? Then confess the sin, and fly to the sacrifice. The sacrifice sanctifies. The precious blood of the Lamb slain removes the guilt, and purges away the defilement of our sins of ignorance and carelessness. This is the best ending of a Christmas-day—to wash anew in the cleansing fountain. Believer, come to this sacrifice continually; if it be so good tonight, it is good every night. To live at the altar is the privilege of the royal priesthood; to them sin, great as it is, is nevertheless no cause for despair, since they draw near yet again to the sin-atoning victim, and their conscience is purged from dead works.

Gladly I close this festive day,
Grasping the altar’s hallow'd horn;
My slips and faults are washed away,
The Lamb has all my trespass borne.


Wednesday, 21 December 2011

Medical Research Council announces ME/CFS research projects worth £1.6m

http://www.meassociation.org.uk/?p=9760

The Medical Research Council (MRC) has awarded more than £1.6m for research into the causes of the debilitating condition chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME).

The investment will fund five new projects to investigate the mechanisms and underlying biological processes involved in the illness, which could eventually lead to better diagnosis and the development of more effective treatments.

CFS/ME is a complex and debilitating condition that affects around 250,000 people in the UK , including children. Symptoms include profound physical and mental fatigue, muscle and joint pain, disturbed sleep patterns and concentration and memory problems. The combination and severity of symptoms varies from patient to patient, making it a difficult condition to diagnose and treat.

Professor Stephen Holgate, Chair of the MRC’s Population and Systems Medicine Board, said:
“There is a pressing need to understand the causes of CFS/ME, and the MRC is delighted to announce substantial funding to address this. The quality and breadth of the scientific proposals we received in response to our funding call exceeded expectations and led to us funding more studies than we had originally anticipated.

“We’re especially pleased that the five new projects address many of the priority areas identified by our CFS/ME Expert Group in collaboration with charities and leading researchers in the field. We hope the awards will drive forward the research agenda in this area, paving the way for new diagnostic tools and treatments.”

Dr Charles Shepherd, member of the MRC CFS/ME Expert Group and trustee of the ME Association, which has agreed to provide £30,000 to co-fund one of the five projects, said:
“The ME Association is very pleased to learn that the MRC has followed up the research priorities identified by the Expert Group and agreed to fund five high-quality studies that aim to identify important biomedical abnormalities that may be involved in the underlying cause of CFS/ME.

“The patient community will particularly welcome research involving biomarkers/biological fingerprints, which could lead to a diagnostic test, and immune system abnormalities, which could lead to more effective forms of treatment.

“The fact that one of the studies is being co-funded by the charity sector marks a much needed step forward in co-operation between patients and researchers in this field. This initiative could be utilised to help fund additional research involving the priorities not yet covered by this announcement.”

The MRC has striven to stimulate high quality CFS/ME research for a number of years. Most recently the specially constituted MRC CFS/ME Expert Group, which involves leading researchers in the field and related areas, along with representatives from two CFS/ME charities, identified six priority areas where important research questions remained unanswered.

In February 2011, the MRC issued a £1.5m call for proposals in these areas, aimed at encouraging fresh partnerships between established CFS/ME researchers and those with strong scientific credentials, but new to this field. The key areas were:

• Nervous system disorders
• Cognitive symptoms
• Fatigue
• Immune dysregulation (eg. through viral infection)
• Pain
• Sleep disorders

In response to the high quality of the applications received, the MRC decided to provide an extra £150,000 to support the package of successful projects. The awards range in total value from £120,000 to £450,000 and the successful applicants were:

· Dr Wan Ng, Newcastle University
· Professor Julia Newton, Newcastle University
· Professor Anne McArdle, University of Liverpool
· Professor David Nutt, Imperial College London
· Dr Carmine Pariante, King’s College London

While the applications addressed most of the priority areas highlighted in the call, the MRC will announce shortly how it plans to stimulate research activity in those areas which were not covered.


 

Saturday, 10 December 2011

Strength for the day

I found this hymn on another blog (click here) and the owner very kindly said that she was happy for me to post it here.

The hymn is based on 2 Corinthians 12 v 9-10:

"And He said unto me, My grace is sufficient for thee: for My strength is made perfect in weakness. Most gladly therefore will I rather glory in my infirmities, that the power of Christ may rest upon me. Therefore I take pleasure in infirmities, in reproaches, in necessities, in persecutions, in distresses for Christ's sake: for when I am weak, then am I strong."

Let me but hear my Saviour say,
"Strength shall be equal to the day,"
Then I rejoice in deep distress,
Leaning on His sufficient grace.

I glory in infirmity,
That Christ's own power may rest on me;
When I am weak, then am I strong,
Grace is my shield, and Christ my song.

But if the Lord be once withdrawn,
And we attempt the work alone,
When new temptations spring and rise,
We find how great our weakness is.

I can do all things, or can bear
All sufferings, if my Lord be there:
Sweet pleasures mingle with the pains,
While His kind hand my soul sustains.

Isaac Watts, 1674 - 1748

Thursday, 1 December 2011

A Christmas Message and A Christmas Carol

I know that for many the run up to Christmas started weeks ago, but at the start of December, take some time to get back to the real meaning of Christmas -

A Christmas Message – “Who Is This Saviour?” This was preached by Pastor John Thackway on Christmas Day 2010. To listen to it please go to -

http://www.sermonaudio.com/sermoninfo.asp?SID=122510630590

And one of my favourite Christmas Carols -

Angels, from the realms of glory,
Wing your flight o'er all the earth;
Ye who sang creation's story,
Now proclaim Messiah's birth:

Come and worship, come and worship,
Worship Christ, the newborn King.

Shepherds, in the field abiding,
Watching o'er your flocks by night,
God with man is now residing,
Yonder shines the infant light:

Sages, leave your contemplations,
Brighter visions beam afar;
Seek the great Desire of nations;
Ye have seen His natal star:

Saints before the altar bending,
Watching long in hope and fear,
Suddenly the Lord descending
In His temple shall appear:

Sinners, wrung with true repentance,
Doomed for guilt to endless pains,
Justice now revokes the sentence,
Mercy calls you - break your chains:

(James Montgomery, 1771-1854)

 
 

Wednesday, 23 November 2011

The Power Of His Resurrection

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

C H Spurgeon’s Evening Devotional for November 22nd

“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.



Saturday, 19 November 2011

The Countess of Mar speaks out again for ME sufferers

http://www.meassociation.org.uk/?p=9269

The Countess of Mar made another intervention during the House of Lords debate (16 November 2011) on the Government’s Health and Social Care Bill. The debate on the Committee Stage was in its sixth day.

She said:
As the Minister knows, I am concerned about people with CFS/ME. They are the most neglected, denigrated and discriminated-against group in the country and there are some 60,000 of them who are severely ill, which means that they are homebound and bed-bound.

They have multi-system symptoms, which are far too often neglected. They have co-morbidities - one person that I know of, who has had ME since she was 15 and is now 30, has severe gynaecological problems but because she has ME they are not going look at those. Also, she gets no social care.

It is very important that these services are thoroughly integrated and that people understand that because you have ME it does not mean to say that all you need is a little bit of CBT and GET and you can get up and go. We have got to provide for people who are severely ill.

Monday, 7 November 2011

Invest in ME Conference 2011 DVDs

After a rather long delay, the DVDs of this years’ Invest in ME conference are now available. One of the talks is given by Øystein Fluge and Olav Mella, the two men who led the research at the Haukeland University Hospital in Bergen, Norway, which has recently been published – they give a lot more details of the research in their talk than has been given in some of the press releases and I would certainly recommend watching it.

For further details of the IiME DVDs click here

Information about the Norwegian research can be found at -

Plos One JournalBenefit from B-Lymphocyte Depletion Using the Anti-CD20 Antibody Rituximab in Chronic Fatigue Syndrome

New ScientistChronic fatigue syndrome eased by cancer drug

BBC News – Immune system defect may cause ME

Daily MailCancer drug ‘key to treating chronic fatigue’ as experts say syndrome may be caused by defective immune system

European ME AllianceWelcomes Ground-breaking Research from Norway


Wednesday, 2 November 2011

Tim and Lois's travels

Tim and Lois, my brother and sister-in-law, recently had a holiday which included visiting a number of places mentioned in the Bible.  They have sent me a memory stick containing hundreds of pictures from places they have been to, and I've posted a small selection of them below -


Athens

Ephesus

Sea of Galilee

Traditional location of the Sermon on the Mount

Nazareth


Jerusalem


Gethsemane


The Mount of Olives


Tuesday, 1 November 2011

Elect In Christ

Another poem from “Songs in the Night” by Michael R Abbott; used with permission

Elect In Christ

Condemned through sin, by birth and choice,
Until I heard the Saviour’s voice:
“Why do you linger in your sin?
I am life’s door, so enter in”.

Upon the cross I saw Him nailed,
As though by my own sin impaled.
‘Twas love that held Him to the tree:
He shed His blood to make me free.

Elect before the world began;
God’s purposes the ages span.
I ask not how the cry of faith
Can save the soul: ‘tis all of grace.

Boldly I come before His throne,
I have no merit of my own,
The blood of Christ is all I plead:
It’s all I have and all I need.

Eternally the Saviour reigns,
Yet, in his mercy, still He deigns
To lift the sinner from his plight
And clothe his soul in raiment white.

Salvation now in Him is found,
And by His death does grace abound,
He draws men from the mire of sin
And gives them peace and joy within.


“I am the door: by Me if any man enter in, he shall be saved, and shall go in and out, and find pasture” (John 10 v 9).



Monday, 24 October 2011

Norway's Directorate of Health Apologises for Treatment of ME Patients

http://www.euro-me.org/news-Q42011-003.htm

The Norwegian Directorate of Health has apologised for the way in which ME patients in Norway have been treated. This follows the publication of the ground-breaking research from Haukeland University in Bergen (click here).

After the publication of the Rituximab study by Fluge et al (2011) and extensive media coverage since then the Norwegian Directorate of Health gave a short statement on TV2 channel, see TV2 Nettavisen (click here).

A statement from the Norwegian Directorate of Health has been received where they apologise for not having provided the necessary and proper health services to persons with ME.

Such a public apology from a governmental health agency has never occurred before.

Bjørn Guldvog, Deputy Director General of the Norwegian Directorate of Health made the following statement

"Jeg tror at vi, i for liten grad, har klart å møte menneskene som har kronisk utmattelsessyndrom på en god nok måte. Jeg tror at det er riktig å si at vi ikke har utviklet en god nok helsetjeneste for disse, og det beklager jeg."
"I think that we have not cared for people with ME to a great enough extent. I think it is correct to say that we have not established proper health care services for these people, and I regret that."

Patients have thanked Norwegian channel TV2 for their massive media campaign - click here.

The TV2 channel has set up a web page containing all media coverage they have had – which includes easy access to writings and video clips - click here.


The Norwegian research project referred to has, at long last, got a mention on the BBC website -

Immune system defect may cause ME http://www.bbc.co.uk/news/health-15401746

Researchers in Norway believe Chronic Fatigue Syndrome (CFS), also known as ME, may be caused by a wayward immune system attacking the body.

The illness, the cause of which is uncertain and has no known cure, has attracted significant controversy.

A small study, reported in PLoS One, showed a cancer drug, which inhibited the immune system, relieved symptoms in some patients.

The ME Association said the findings were "very encouraging news".

Doctors in Norway stumbled across their first clue in 2004 when treating a patient with both Hodgkin's lymphoma, a cancer of the white blood cells, and CFS.

When she received cancer treatment, her fatigue symptoms improved for five months.

'Dramatic'

The latest study, carried out at the Haukeland University Hospital in Bergen, built on the previous discovery by testing 30 patients with CFS.

Half were given two doses of Rituximab, a cancer drug which eliminates a type of white blood cell, while the other half were given a fake treatment.

In those patients receiving the drug, 67% reported an improvement in a score of their fatigue levels. Just 13% showed any improvement in the sham group.

Øystein Fluge, an oncology consultant at the hospital, told the BBC: "There was a varied response: none, moderate, dramatic relief of all symptoms.

"Two had no recurrence [of their symptoms], their life was turned completely around very dramatically."

Their theory is that a type of white blood cell, B lymphocytes, are producing an antibody which attacks the body.

The drug wipes out the lymphocytes which in some cases may "reset the immune system", however, in other patients the fatigue symptoms would return when more B lymphocytes were made.

Caution

Mr Fluge said: "I think the fact that patients responded to treatment, improved cognitive function, fatigue and pain makes us believe we're touching one of the central mechanisms.

"But we're scratching at the surface, I would not characterise this as a major breakthrough."

The researchers are now investigating the effect of giving more doses over a longer period of time.

If their hunch is right it will throw up more questions, such as what is the immune system actually attacking and whether or not an actual test for CFS/ME be developed.

Dr Charles Shepherd, the UK ME Association's medical adviser, said: "The results of this clinical trial are very encouraging news for people with ME.

"Firstly, they help to confirm that there is a significant abnormality in immune system function in this disease.

"Secondly, they indicate that altering the immune system response in ME could be an effective form of treatment for at least a subset of patients.

"We now need further clinical trials of such anti-cancer agents to see if other research groups can replicate these findings."

Wednesday, 19 October 2011

Chronic fatigue syndrome eased by cancer drug

http://www.newscientist.com/article/dn21065-chronic-fatigue-syndrome-eased-by-cancer-drug.html

An anti-cancer drug could hold the key to treating chronic fatigue syndrome (CFS). Symptoms of the disease eased in 10 of 15 patients given rituximab, an anti-lymphoma drug.

Rituximab works by destroying white blood cells that make antibodies, called B cells. The results of the trial therefore strongly suggest that these white blood cells might be involved in causing CFS – a disorder also known as "yuppie flu" or myalgic encephalomyelitis (ME), and one that has so far defied explanation.

The research was jointly led by Øystein Fluge and Olav Mella at the Haukeland University Hospital in Bergen, Norway. Their team discovered by accident that rituximab might work against CFS after seeing symptoms ease in a patient who had both lymphoma and CFS.

"We think it affects all symptoms [of CFS], so it must touch the central pathological mechanism causing the disease," Fluge says.

Two of the 15 people in the trial appear to have completely recovered since they first received the drug three years ago. "Those two are both back at work," Mella says.

Dramatic results

"It's the most encouraging drug result so far in the history of this disease," according to Charles Shepherd, medical adviser to the UK ME Association. "Although it's a small trial, it's produced dramatic results."

The researchers say that following two doses of the drug being given in the first two weeks of the trial, there was a lag of three to eight months before symptoms began to subside. They say this delayed response tallies with the idea that CFS is caused by autoantibodies – antibodies, made by B cells, that mistakenly attack the body's own tissues.

Rituximab is itself an antibody designed to target and destroy B cells. Mella says that all the B cells are gone within two weeks or so of the treatment, but autoantibodies typically survive in the body for another two or three months. "Washing out these antibodies is the most probable explanation for the time lag in benefits," he says.

The researchers found no trace of XMRV, a mouse leukaemia virus once implicated as a possible cause of CFS. The virus has now been virtually eliminated as a possible cause.

Blind alley

"We looked as hard as we could for it, by several methods, but the search was negative," Fluge says. "We think suggestions it was XMRV [causing CFS] have turned out to be a blind alley, caused by contamination of samples."

Last month, one of the authors of the 2009 paper that implicated XMRV retracted his data from that study after acknowledging that the virus was present through contamination.

"XMRV is dead, a sad and disappointing story that raised a lot of false hopes for patients," says Shepherd. He adds that it is important not to raise hopes again by over-hyping the rituximab results. "We're still a long way from making this drug more widely available, but if someone wants to mount a UK trial, we'd look at that," he said.

Encouraged by the extended remission of two of the people in the trial, the Norwegian researchers are now checking whether further, periodic doses of rituximab could permanently keep the symptoms of CFS at bay. Mella says it is possible that the five who saw no benefits from the trial might have done so eventually if they had received further doses.

Journal reference: PLoS ONE, in press


European ME Alliance Welcomes Ground-breaking research from Norway -
http://www.euro-me.org/news-Q42011-002.htm

The European ME Alliance welcomes the research by Fluge, Mella et al published on 19th October 2011 in Plos One.

This research clearly shows the physical basis of ME.

It also shows that patients had no difficulty in adjusting to normal life - something which makes redundant the previous attributions to psychological problems in this patient group.

Now we encourage public funding bodies in different countries to follow the example of this double blind placebo controlled clinical trial to start seriously investing in biomedical research into ME.

It is time to take this disease seriously and help patients regain their health and normal functioning.

European ME Alliance



Thursday, 6 October 2011

New International Consensus Criteria published in the Journal of Internal Medicine

In July of this year the Journal of Internal Medicine published an online draft of the new Myalgic Encephalomyelitis: International Consensus Criteria which has been written by a panel of 26 experts from 13 different countries. The full, proof-read document is now properly available in both the printed and online versions of the Journal.

To view the abstract click here

A full HTML version can be found here, and to see the PDF version click here

I thought that the following comment in the abstract was particularly helpful to those of us with ME as opposed to CFS -

"The label ‘chronic fatigue syndrome’ (CFS) has persisted for many years because of the lack of knowledge of the aetiological agents and the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term ‘myalgic encephalomyelitis’ (ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3)."

Monday, 26 September 2011

I saw a new vision of Jesus

I thought that it was about time I posted another of my favourite hymns -

I saw a new vision of Jesus,
A view I’d not seen here before,
Beholding in glory so wondrous
With beauty I had to adore.
I stood on the shores of my weakness,
And gazed at the brink of such fear;
‘Twas then that I saw Him in newness,
Regarding Him fair and so dear.

My Saviour will never forsake me,
Unveiling His merciful face,
His presence and promise almighty,
Redeeming His loved ones by grace.
In shades of the valley’s dark terror,
Where hell and its horror hold sway,
My Jesus will reach out in power,
And save me by His only way.

For yonder a light shines eternal,
Which spreads through the valley of gloom;
Lord Jesus, resplendent and regal,
Drives fear far away from the tomb.
Our God is the end of the journey,
His pleasant and glorious domain;
For there are the children of mercy,
Who praise Him for Calvary’s pain.

W V Higham, 1926 -

Monday, 12 September 2011

When

Another poem from “Songs in the Night” by Michael R Abbott; used with permission.

When

When Christ shall come in majesty
And glory from on high,
And saints that sleep, with them that live,
Shall meet Him in the sky;
Then all the trials we have known
Shall seem to us as nought,
To know that we are saved from hell,
Our souls, by Christ, blood bought.

When on the fearful Judgment Day
We stand before God’s throne,
And plead to Him a righteousness,
The Saviour’s, not our own;
Then we shall know how great His love,
His mercy, and His grace,
That we may stand, our sins forgiven,
Before the Father’s face.

When in the New Jerusalem
We dwell with saints above,
Partakers of the blessed hope
And God’s eternal love;
Then every tear shall disappear
And every sorrow cease,
Safe in our heavenly home, at last,
We’ll know eternal peace.

Matthew 16 v 27-28.



Monday, 5 September 2011

Let’s’ Do It For ME!

http://www.investinme.org/IiME%20Awareness%20Events%20LDIFME.htm

From the Invest in ME website -

Let's do it for ME! is a patient-driven campaign to raise awareness and vital funds for a UK centre of excellence for translational biomedical ME research, clinical assessment, diagnosis and treatment for patients, training and information for healthcare staff, based at the Norwich Research Park in the UK and aiming to work collaboratively with international biomedical researchers.

Please help us fund biomedical research into ME.

The current figure raised for a biomedical research and examination facility will be updated weekly.

For further information -

Let’s do it for ME! blog -
http://letsdoitforme.blogspot.com/2011/07/press-release-lets-do-it-for-me.html

Everyclick fundraising 4ME -
http://www.everyclick.com/doit4me

Let’s do it for ME! facebook -
http://www.facebook.com/pages/Lets-do-it-for-ME/131381096946842

Let’s do it for ME! twitter -
http://twitter.com/#!/Letsdoit4ME

Monday, 29 August 2011

ME in the media

In what now appears to be some kind of organised media campaign, Professor Simon Wessely has in the last month or so been mentioned and featured in many of the major newspapers and on the radio in connection with alleged threats made against him by “ME militants” – all of which has come as a shock and to the dismay of seriously ill ME sufferers as well as to their families and friends.

How is it that Professor Wessely has managed to get his story covered by so much of the media? Could it be anything to do with him being a member of the Scientific Advisory Panel at the Science Media Centre? The Centre has been described as “a body that controls the scientific / medical information that the UK media may report” (for further details click here). Could this also have anything to do with why biomedical conferences and research findings into ME rarely get a serious mention in the media?

First of all, for some background information, please look up the following on the ME Action UK website – they are not recent documents but are very helpful -

The Mental Health Movement: Persecution of Patients? -
http://www.meactionuk.org.uk/SELECT_CTTEE_FINAL_VERSION.htm

Magical Medicine -
http://www.meactionuk.org.uk/magical-medicine.htm

Not forgetting the trailer for Voices From The Shadows, a documentary about ME due to be released this Autumn -
http://vimeo.com/24683179

I am not going to mention all of the articles and interviews from the last few weeks, or all of the responses to them, but I would recommend these two responses to an interview with Professor Wessely that was broadcast on Radio 4 on 29 July 2011 -

Wessely’s Words Revisited -
http://www.meactionuk.org.uk/Wesselys-Words-Revisited.htm

The real victims of ME are those with the disease -
http://www.publicservice.co.uk/blog_story.asp?id=308

Please see also a response by The 25% ME Group to Stefanie Marsh’s article that was in The Times on 6 August 2011 -
http://niceguidelines.blogspot.com/2011/08/25-me-group-reply-to-stefanie-marshs.html

The following items are in connection with an article that appeared in The Observer on Sunday 21 August 2011 -

Firstly, a response by Susanna Agardy can be found at -
https://listserv.nodak.edu/cgi-bin/wa.exe?A2=ind1108d&L=co-cure&T=0&P=3933

Secondly, this is regarding a letter sent by Professor Malcolm Hooper to The Observer -
http://www.meactionuk.org.uk/Prof-H-Observer-letter.htm

This letter was submitted by Professor Hooper to the Observer, in response to the article by Robin McKie "Chronic fatigue syndrome researchers face death threats from militants", published on Sunday the 21st of August 2011:

http://www.guardian.co.uk/society/2011/aug/21/chronic-fatigue-syndrome-myalgic-encephalomyelitis/print

Professor Hooper was contacted out of the blue by the reader's editor of the Observer. They spoke at length on the telephone and the editor asked Professor Hooper to respond to Robin McKie's article.

The editor indicated that the responses to the article were building up into a feature length article for the Magazine section and Professor Hooper agreed to submit a longer article as well as a letter.

He received an acknowledgement from the reader's editor saying it was there intention to use the letter but the following day he received a further email from the same person to say it would not be published.

From Malcolm Hooper Ph.D.,B.Pharm.,C.Chem.,MRIC
Emeritus Professor of Medicinal Chemistry
University of Sunderland,
SUNDERLAND SR2 3SD

Chief Scientific Adviser to the Gulf Veterans' Association
President: the National Gulf War Veterans and Families Association, NGVFA, (2002)

25 August 2011

Dear Sir

No right-minded person condones any campaign of vilification against psychiatrists but equally, no right-minded person can condone what psychiatrists like Wessely have done to the UK ME community over the last 25 years.

It is indefensible to liken people with ME to the Animal Liberation Front; this is an attack on the whole ME community, not only the few people who have behaved irrationally.

ME has been in the medical literature for the last 70 years and classified by the WHO as a neurological disorder since 1969.

The recent International Consensus Criteria for ME produced by 26 world experts from 13 countries shows ME to be a complex, chronic illness of which post-exertional malaise (inability to recover after exercise) is the cardinal feature. This makes exercise dangerous and sometimes fatal. There are multiple symptoms and multiple clinical signs showing dysfunction and dysregulation of all the major organs and systems of the body.

No NHS clinician has the autonomy to regard ME as a somatoform disorder. The Department of Health has confirmed in writing that: “ICD-10 is an NHS Information Standard…..There is a legal obligation for Department of Health to provide ICD data to the WHO for international comparison. The NHS was mandated to implement ICD-10 on 1 April 1995, at which time there was a formal consultation…. Implementation…applies to NHS organisations and their system suppliers, such as acute and foundation trusts, primary care trusts, and the NHS Information Centre”. The Wessely School psychiatrists, many GPs and NHS neurologists are in breach of this mandate.

For Wessely School psychiatrists to continually ignore the scientific evidence is wilful ignorance but to advise the DWP decision-makers and train ATOS examiners that ME is a mental disorder is deceitful and abusive; to section patients with ME and remove them from their distraught families is abusive; to make sick people worse by inappropriate interventions is abusive; to deny them financial support necessary to survive is abusive; to mock them and to misinform others about their serious disorder is abusive; to insist that they suffer from wrong thinking and a fear of activity when they suffer from a very serious medical disorder with reproducible multiple systemic abnormalities is abusive.

These psychiatrists, who have direct and lucrative links with the Insurance industry, have been reported to Parliament. The industry stands to lose £ millions if it has to pay out for a severe life-long physical illness whereas psychiatric (functional, somatoform) conditions are usually excluded and lower benefits paid by the DWP.

The true ME story has yet to be told.

Malcolm Hooper

In addition to the above letter, Professor Hooper’s longer and more detailed response to the article in The Observer can be found by clicking here.

Finally, could it be merely a coincidence that all of this media coverage has come at a time when a panel of 26 experts and clinicians from 13 countries has published a new International Consensus Criteria for ME in the Journal of Internal Medicine? The new Criteria are summarised here. I don’t recall this being widely mentioned in the UK media ... Nor can I remember widespread mention of the 6th Invest in ME International ME/CFS Conference held in May of this year ...

Food for thought.

Thursday, 11 August 2011

Doubt and Assurance

Another poem from “Echoes of Eternity” by Michael R Abbott; used with permission.

Doubt and Assurance

If I died and went to heaven
In my present sinful state,
I would spoil the Holy City
Just by passing through its gate.
I do feel to be unworthy
And I know that it is true.
Is there any hope for sinners?
Is there aught that I can do?

If I spend my days in worship
And in prayer to God above,
If I seek to help the needy
Through my acts of Christian love,
If I give my life a martyr
In the service of the King,
Yet my sin cries out against me
And my works no comfort bring.

Yet the Bible gives an answer:
There is hope if I should heed
And fall down before the Saviour
To confess my deepest need.
For He died to make me worthy
And to cleanse me from my sin:
Jesus is the gate to heaven
And He waits to let me in.

I shall go there clothed in beauty
With a robe of righteousness,
Which through Jesus is provided,
Such is His delight to bless.
All my sin is taken from me
And cast in the deepest sea:
Thus I shall be with my Father
Throughout all eternity.


Monday, 8 August 2011

The 25% ME Group reply to Stefanie Marsh’s article about Professor Simon Wessely in The Times

http://niceguidelines.blogspot.com/2011/08/25-me-group-reply-to-stefanie-marshs.html

Following on from the Interview with Professor Simon Wessely in The Times on 6 August (see http://www.meassociation.org.uk/?p=7552), the 25% ME Group (http://www.25megroup.org/) have written a response -

Permission to repost.

The 25% ME Group sent this to The Times

The 25% ME Group is the only UK charity representing just severely affected ME sufferers, we would like to request a right of reply to the article by Stefanie Marsh in The Times, 6 August 2011.

Stefanie Marsh’s article about Professor Simon Wessely "the most hated doctor in Britain” begins by naming him Britain’s foremost authority on ME. This may be his opinion, but it is worth reminding readers that medics worldwide who treat and study ME disagree with Professor Wessely that the illness is psychiatric. Substantial and significant published research shows ME to be organic, not psychiatric and it is considered to be so by doctors in all fields other than psychiatry.

The renowned expert Dr Byron Hyde said "The belief that [ME] CFS is a psychological illness is the error of our time."

In 2004 the Countess of Mar claimed in the House of Lords, "Since his arrival on the scene in 1987, Wessely has repeatedly and persistently played down, dismissed, trivialised or ignored most of the significant international biomedical evidence of organic pathology found in ME because it does not fit his psychiatric model of the disorder”. She went on to call him "savagely cruel to the ME community”. This is a view of Simon Wessely that it may have been useful to explore in an article that seems astonished that some ME patients are angry with him.

In Stefanie's article Wessely states "a pessimistic illness perception can become a self-fulfilling prophecy of non-recovery". "Patients tend to view their symptoms as part of an overwhelming, mysterious, unexplainable disease that struck them out of the blue and from which they most likely will never recover."

A very quick internet search would have found The Case Definition for ME compiled by the world's leading authorities on ME which makes these "beliefs" seem more like reality. It states that it is "a severe systemic acquired illness" that "follows an acute infection" and that previously "patients had been healthy, living full and active lifestyles".

It quotes studies that show less than 10% of patients return to pre-illness levels of health and claims that loss of quality of life is more than for "many other chronic illnesses”. The article presented Wessely as a victim of abuse from ME sufferers. However the real victims of this story could be seen as the thousands of ME patients whose lives are drastically affected by dangerous and unproven assumptions that nothing is physically wrong with them.

The recent deaths of Sophia Mirza and Lynn Gilderdale show where this can lead.

Patients anger at Wessely’s loud and damaging mis-diagnosis, like the anger of MS patients when psychiatry labelled it hysterical paralysis, is not based on prejudice against mental illness but on the fact that they will not receive treatment or a cure if Wessely's therapy is all that is offered.

As the Countess of Mar pointed out, the end result of Wessely’s proclamations is "that patients receive no investigations, support, treatment, benefits or care”.

25% ME Group
Troon
Ayrshire


Monday, 1 August 2011

The real victims of ME are those with the disease

http://www.publicservice.co.uk/blog_story.asp?id=308

29 July 2011

No one should have to endure threats of violence and malicious abuse for their professional commitment to the advance of medical knowledge, but while listening to the Today Programme interviews about ME/chronic fatigue syndrome and the hate campaign directed at those leading research into psychological based explanations for the illness, I had the urge to bang heads together. My annoyance began with "the scientist" interviewed in the role of victim. I was left to question whether his science might be as distorted as his reasoning expressed on Radio 4.

This story is not a new one. Psychiatrist Simon Wessely, well-known for his theories that myalgic encephalomyelitis is a type of neurosis, was telling the New Scientist in 2009 about the threats he faced. Now he tells the BBC's Tom Fielden: "People seem to prefer to be diagnosed with like a retro-virus, a potentially incurable, maybe even fatal illness, rather than an illness for which we do have some reasonable but not perfect treatment.

"That really attests to the strength of feeling here – I would rather have an incurable virus than a potentially curable disorder if the cure was treatment involving any acknowledgement of the social or psychological."

No, Dr Wessely, I suspect that that is not what ME sufferers feel – not even those who have descended to desperate extremist levels. It is the quality of the science and such distorted reasoning that enrages ME sufferers. They feel helpless and dismayed – and if you were genuinely listening to your patients, Dr Wessely, you would understand something of that.

They feel dismayed by the fact that most government funding into ME concentrates on research into the psychology and not the virology of the illness. They feel dismayed by NICE guidelines and doctors who persist with programmes of treatment that not only do not work but make them feel worse. They feel dismayed by a stigma that still surrounds the illness, stemming from early medical ignorance.

Dr Wessely accuses his hostile critics of "trying to make me into a leper". Well, that is just how many ME sufferers have been made to feel for years. They feel dismayed that research into viruses that consistently precede the onset of ME is ignored. Was it only last autumn that scientists at Dundee University had found abnormalities in the white blood cells of all children with ME/CFS in their study? Dundee's Professor Jill Belch said: "It's important because some people do suggest that ME is a disease of the mind and here we are showing that it is a disease of the body."

They obviously didn't tell Dr Wessely. Anyone whose life has been shattered by ME or CFS – they can be separated – would take any cure, anything that could offer them a return to normality. I would like to hear from the medics who suffer from ME. In my 15-year interest in the illness I have yet to find one who agrees with the Wessely theory. No matter how sceptical they may have been, they seem to be instant converts to a physical cause once they become sufferers.

I wish Dr Wessely nothing but good health and back the call for hostilities against him to be halted. But there are far more victims in this story – the tens of thousands of people in the UK whose lives have been almost shut down by ME.

I will write more on my experience as a parent of an ME sufferer in Public Servant magazine.

David Allaby



Thursday, 28 July 2011

BMJ Rapid Response from Malcolm Hooper

http://www.bmj.com/content/342/bmj.d3956/reply#bmj_el_267520

Re:History of prejudice

Malcolm Hooper, Emeritus Professor of Medicinal Chemistry

University of Sunderland

The editor of the BMJ refers to the "unproductive standoff" in relation to the long-running disagreement about the nature of ME between the evidence-based biomedical school dating back to at least 1956 (with the WHO classifying ME as a neurological disorder in 1969) versus the ideology of the "psychosocial" school, whose vested interests in maintaining their idiosyncratic categorisation of ME as a mental disorder are a matter of public record 1.

That standoff includes the psychosocial school directing in 1992 that in patients with ME, the first duty of the doctor is to avoid legitimisation of symptoms 2; in 1994 ME was described by them as merely "a belief" 3; in 1996 they recommended that no investigations should be performed to confirm the diagnosis 4; in 1997 they referred to ME as a "pseudo-disease diagnosis" 5, and in 1999 they said about ME patients: "Those who cannot be fitted into a scheme of objective bodily illness yet refuse to be placed into and accept the stigma of mental illness remain the undeserving sick of our society and our health service" 6.

In his letter to the BMJ 7 Peter White et al dismiss key symptomatology of ME including ataxia, palpitations with cardiac arrhythmias and loss of thermostatic stability as being of dubious validity, yet those symptoms are specifically required for a diagnosis of ME as stipulated by 26 international experts from 13 countries who between them have 400 years experience of diagnosing over 50,000 patients 8.

These experts base their latest criteria on biomedical research and clinical experience of widespread inflammation and multisystemic neuropathology found in ME.

Although claiming to do so, Peter White et al do not study ME; they use their own Oxford criteria that select people with psychiatric disorders in which chronic fatigue is a feature 9.

White says their own criteria are easier to use and insists that they do not exclude those with ME simply because he believes ME to be a mental disorder.

Furthermore, in his letter to the BMJ Peter White complains that the criteria which define people with classic ME are too burdensome for doctors to use.

When did the careful assessment of sick people stop being part of the practice of medicine, especially when the disorder in question is known to be a complex multi-system disorder?

References

1. http://erythos.com/gibsonenquiry/Docs/ME_Inquiry_Report.pdf  

2. Medical Research Council Highlights of the CIBA Foundation Symposium on CFS, 12-14th May 1992, reference S 1528/1 (section entitled "The Treatment Process"), now held in the MRC secret files on ME at the National Archive, Kew, and closed not for the customary 30 years but for the unusually lengthy period of 73 years

3. "Microbes, Mental Illness, The Media and ME - The Construction of Disease". Simon Wessely; 9th Eliot Slater Memorial Lecture, Institute of Psychiatry, 12th May 1994 (transcript and Wessely's own working notes)

4. Chronic Fatigue Syndrome. Report of a Joint Working Group of the Royal Colleges of Physicians, Psychiatrists and General Practitioners; Royal Society of Medicine (CR54), October 1996

5. "Chronic Fatigue Syndrome and Occupational Health"; A Mountstephen & M Sharpe; Occupational Medicine 1997:47:4:217-227

6. "ME. What do we know - real physical illness or all in the mind?" Lecture given in October 1999 by Michael Sharpe, hosted by the University of Strathclyde (transcript)

7. BMJ 2011:343:d4589

8. Journal of Internal Medicine: Accepted Article: doi:10.1111/j.1365- 2796.2011.02428.x

9. JRSM 1991:84:118-121

Competing interests: I am a long term advocate for people with ME and have published and lectured extensively on their plight and the injustices they and their carers have suffered as a conseqence of the deeply flawed ideological views of some psychiatrists and the Government agencies that have persistently denied or ignored the massive volume of peer-reviewed, published biomedical evidence.

Published 28 July 2011

Tuesday, 26 July 2011

Tabernacle Cardiff Summer Conference – Live!

http://www.summerconference.org/r-nav/1.jsp

The Tabernacle Cardiff has it’s annual Summer Conference this week and this year there is the bonus of live streaming of all the sessions, which is great for those of us unable to attend in person. The speakers during the week are Roland Burrows (Birmingham), Vernon Higham (Cardiff), Alan McNabb (Stafford), Peter Masters (London) and Jack Seaton (Inverness). The regular Sunday services and midweek Bible study from the Tabernacle Cardiff are also available to watch live.

Also, the Metropolitan Tabernacle in London had it’s annual School of Theology earlier this month with the theme being “Personal Ministry and Church Leadership”. The meetings were not streamed live, but they were all recorded and should be available shortly on CDs and DVDs. For further details see -
http://www.metropolitantabernacle.org/School-of-Theology

I don’t think that there can ever be a good time to be unable to attend church for any length of time – but nowdays, for those of us in such a situation, there is no need to miss out on good teaching. We are greatly blessed and helped by having sermons and services available on CDs, DVDs, MP3 downloads and, in some cases, live online.  There are many thousands of sermons freely available online from individual church websites and sites such as SermonAudio.com

Friday, 22 July 2011

Myalgic Encephalomyelitis: International Consensus Criteria

http://onlinelibrary.wiley.com/doi/10.1111/j.1365-2796.2011.02428.x/abstract

Bruce M Carruthers MD, CM, FRCP(C) (coeditor), Marjorie I van de Sande BEd, GradDip Ed (coeditor), Kenny L De Meirleir MD, PhD, Nancy G Klimas MD, Gordon Broderick PhD, Terry Mitchell MA, MD, FRCPath, Don Staines MBBS, MPH, FAFPHM, FAFOEM, AC Peter Powles MRACP, FRACP, FRCP(C), ABSM, Nigel Speight MA, MB, BChir, FRCP, FRCPCH, DCH, Rosamund Vallings MNZM, MB, BS, MRCS, LRCP, Lucinda Bateman MS, MD, Barbara Baumgarten-Austrheim MD, David S Bell MD, FAAP, Nicoletta Carlo-Stella MD, PhD, John Chia MD, Austin Darragh MA, MD, FFSEM. (RCPI, RCSI), FRSHFI Biol I (Hon), Daehyun Jo MD, PhD, Don Lewis MD, Alan R Light PhD, Sonya Marshall-Gradisbik PhD, Ismael Mena MD, Judy A Mikovits PhD, Kunihisa Miwa MD, PhD, Modra Murovska MD, PhD, Martin L Pall PhD, Staci Stevens MA

DOI: 10.1111/j.1365-2796.2011.02428.

Abstract

The label “chronic fatigue syndrome” (CFS) has persisted for many years because of lack of knowledge of the etiological agents and of the disease process. In view of more recent research and clinical experience that strongly point to widespread inflammation and multisystemic neuropathology, it is more appropriate and correct to use the term “myalgic encephalomyelitis”(ME) because it indicates an underlying pathophysiology. It is also consistent with the neurological classification of ME in the World Health Organization’s International Classification of Diseases (ICD G93.3). Consequently, an International Consensus Panel consisting of clinicians, researchers, teaching faculty and an independent patient advocate was formed with the purpose of developing criteria based on current knowledge. Thirteen countries and a wide range of specialties were represented. Collectively, members have approximately 400 years of both clinical and teaching experience, authored hundreds of peer reviewed publications, diagnosed or treated approximately 50,000 ME patients, and several members coauthored previous criteria. The expertise and experience of the panel members as well as PubMed and other medical sources were utilized in a progression of suggestions/drafts/reviews/revisions. The authors, free of any sponsoring organization, achieved 100% consensus through a Delphi type process.

The scope of this paper is limited to criteria of ME and their application. Accordingly, the criteria reflect the complex symptomatology. Operational notes enhance clarity and specificity by providing guidance in the expression and interpretation of symptoms. Clinical and research application guidelines promote optimal recognition of ME by primary physicians and other health care providers, improve consistency of diagnoses in adult and paediatric patients internationally, and facilitate clearer identification of patients for research studies.

(You can download the document from
http://www.research1st.com/wp-content/uploads/2011/07/Carruthers-JIM-Table-1.pdf)

Please see also -
Science Versus Psychiatry – Again (22 July 2011)
Malcolm Hooper and Margaret Williams
http://www.meactionuk.org.uk/Science-and-Psychiatry.htm