Thursday, 18 August 2016

Prof Malcolm Hooper, Margaret Williams, and the PACE Trial

From an email I received - and I am sure this will be a valuable resource for anyone interested in ME -

We are pleased to announce the launch of a website containing a catalogue of all the articles on ME written by Margaret Williams and Professor Malcolm Hooper:


The articles in this catalogue have been available on the internet or elsewhere for many years but now for the first time have been brought together in one place. The intention is to provide a valuable historical resource for researchers, advocates, patients and anyone interested in the illness Myalgic Encephalomyelitis/Chronic Fatigue Syndrome. These articles illustrate how the "Wessely School" have ignored the biomedical science on ME/CFS for almost 30 years.

Margaret Williams is the pen-name used by someone who spent her professional life in the British National Health Service (NHS), latterly in a senior clinical capacity for many years until severe ME put an end to her career. For professional and personal reasons she does not wish her own name to be in the public domain.

Malcolm Hooper is Professor Emeritus of Medicinal Chemistry at the University of Sunderland in the UK, and is an advocate for ME/CFS patients. He chaired the International Invest in ME Conference in 2008, 2010, and 2011. He is also the Chief Scientific Adviser to the British Gulf War Veterans Association.

With contributions from Eileen Marshall (1994-2007) and others.



Please see also by Valerie Eliot Smith -

Tribunal Orders Release Of PACE Trial Data (QMUL v the IC and Matthees)


The First-Tier Tribunal judgment in this case (click on that link to read full judgment) has just been published. QMUL’s appeal has been roundly dismissed and therefore the Tribunal has decided that the requested data from the PACE trial should be released.

I have just skimmed the 48 pages of the judgment and so have only taken in a small amount so far. However, it appears that this is a defining moment for the international ME community and the PACE Trial. Alem Matthees (the original requestor of the data) has done an extraordinary job.

However, it is important to remember that, in theory,  QMUL could still seek leave to appeal against this judgment to the Upper Tribunal so it will be a bit longer before we can be absolutely certain that this judgment will stand.

I will write a longer post with a more detailed analysis in due course (health permitting).


Some further encouraging news -

AHRQ Evidence Review Changes Its Conclusions

In response to requests by U.S. patient organizations and advocates, the U.S. Agency for Healthcare Research and Quality (AHRQ) has issued an Addendum to its 2014 ME/CFS evidence review. This Addendum downgrades the conclusions on the effectiveness of cognitive behavioral therapy (CBT) and graded exercise therapy (GET), and this has tremendous implications for medical education and treatment recommendations.


The final paragraph reads -

There is no evidence that CBT and GET are effective treatments for us, and therefore, these treatments can no longer be recommended. If CDC and others persist in recommending treatments for which there is no evidence of effectiveness in ME/CFS patients, it will not only perpetuate confusion but also put patients at risk. Such an unscientific recommendation goes against the principles of evidence-based medicine and is not accepted in other diseases. It will not be tolerated here.

To read the full article, go to -




Wednesday, 17 August 2016

This Sickness Is Not Unto Death


C H Spurgeon’s Evening Devotional for 17th August

“This Sickness Is Not Unto Death”

John 11:4

From our Lord's words we learn that there is a limit to sickness. Here is an "unto" within which its ultimate end is restrained, and beyond which it cannot go. Lazarus might pass through death, but death was not to be the ultimatum of his sickness. In all sickness, the Lord saith to the waves of pain, "Hitherto shall ye go, but no further." His fixed purpose is not the destruction, but the instruction of His people. Wisdom hangs up the thermometer at the furnace mouth, and regulates the heat.

1. The limit is encouragingly comprehensive. The God of providence has limited the time, manner, intensity, repetition, and effects of all our sicknesses; each throb is decreed, each sleepless hour predestinated, each relapse ordained, each depression of spirit foreknown, and each sanctifying result eternally purposed. Nothing great or small escapes the ordaining hand of Him who numbers the hairs of our head.

2. This limit is wisely adjusted to our strength, to the end designed, and to the grace apportioned. Affliction comes not at haphazard-the weight of every stroke of the rod is accurately measured. He who made no mistakes in balancing the clouds and meting out the heavens, commits no errors in measuring out the ingredients which compose the medicine of souls. We cannot suffer too much nor be relieved too late.

3. The limit is tenderly appointed. The knife of the heavenly Surgeon never cuts deeper than is absolutely necessary. "He doth not afflict willingly, nor grieve the children of men." A mother's heart cries, "Spare my child"; but no mother is more compassionate than our gracious God. When we consider how hard-mouthed we are, it is a wonder that we are not driven with a sharper bit. The thought is full of consolation, that He who has fixed the bounds of our habitation, has also fixed the bounds of our tribulation.


Monday, 8 August 2016

Severe Myalgic Encephalomyelitis Understanding and Remembrance Day

PRESS RELEASE from the 25% ME Group


8th August
Severe Myalgic Encephalomyelitis
Understanding and Remembrance Day

'I am a ghost in the land of the living – forgotten, ignored and drifting on the edges of life, whispering my message in the ears of the lucky ones who can participate in life. I have Myalgic Encephalomyelitis. I call it paralysis, muscle and cardiac failure, brain injury, a living plague that kills only slowly, but does kill...
                                       Aylwin (Jennifer) Catchpole, who died in August 2010

Why have an Understanding and Remembrance Day highlighting the plight of the severely affected?

The severity of this illness often makes it impossible for people to have contact with loved ones, doctors, or the outside world.  This is a group of thousands of people in the UK who are generally invisible. People with the severe forms of this disease can no longer pursue their careers, hobbies, or everyday lives.

In helping us to make visible the stories of people living with severe M.E., and of those who have died as a result of the illness, you can help end years of misrepresentation about M.E. and increase the understanding of the general public, who often underestimate the seriousness of the disease. This ignorance causes much suffering to those with M.E., who have a double battle, not only with the disease itself, but also to get the illness taken seriously by those around them. There is an urgent need to raise awareness.

What's the significance of 8th August?

This is the birth date of Sophia Mirza.  Sophia was bed-bound with severe Myalgic Encephalomyelitis and was a victim of medical abuse.  Her doctors did not believe that Myalgic Encephalomyelitis was a physical disease and so she was forcibly taken from her bed/home by social workers, police officers and doctors, and kept in a psychiatric facility where she received inappropriate treatment and care.  Sophia subsequently died of M.E. at the age of 32.  Her post-mortem revealed widespread inflammation in the spinal cord.  This same inexcusable abuse still goes on. 

Emily Collingridge -  17th April 1981 - 18th March 2012

“When our daughter, Emily, died in 2012, my husband and I were overwhelmed by the hundreds of messages of sympathy we received, even from people we did not know.  They came from friends, from those expressing gratitude for her endless campaigning to spread awareness of ME and from readers of her guide to living with severe M.E., many of whom said it had changed their lives.”

The inquest into Emily’s death took place on 24th May 2013.  In her summary the Coroner referred to ME as a condition which is not understood, and expressed the need for more research.  She was echoing an appeal made by Emily in 2011 highlighting what she described as “the scandalous lack of research into the most severe form of M.E. and the lack of appropriate support for those suffering from it.”

A final plea in Emily’s own words.

“Please put an end to the abandonment of people with severe ME and give us all real reason to hope”.  Emily may have lost her personal battle, but her battle on behalf of all those still suffering from severe ME should not be ignored.

Further information

What is Myalgic Encephalomyelitis?

Myalgic Encephalomyelitis literally means muscle pain (myalgia) with brain and spinal cord inflammation (encephalomyelitis). It is a complex neurological illness.  The most characteristic distinguishing feature is that symptoms are exacerbated by activity and sensory stimuli beyond the patient's limitations. Activities that trigger flare-ups can be tiny by healthy standards, depending on the severity of the illness. Simple things like talking, watching a TV programme, or eating a meal, can cause an exacerbation.

Dysfunction has been found in all the major systems - neurological, immune, endocrine, cardiovascular, musculoskeletal, gastrointestinal, respiratory, and genito-urinary, which is why people with Myalgic Encephalomyelitis can have such a wide range of symptoms. Common symptoms include widespread pain, cognitive dysfunctions (e.g. problems with concentration and memory), disabling sensitivities to everyday stimuli (such as light and noise), difficulty being upright (including sitting up in bed), sleep disorders and gastrointestinal problems.

You can read Sophia's story here: www.sophiaandme.org.uk  Her story also features powerfully in the film 'Voices from the Shadows' which is available from: www.voicesfromtheshadowsfilm.co.uk 

Emily also wrote an informative book entitled 'Severe ME/CFS:  A Guide to Living' which can be found at www.severeme.info

Further website information can be found at: 

The parents of those mentioned in this Press Release are happy to be contacted by members of the Media. This can be arranged through contacting the 25% ME Group, (the national support group for severely affected ME Sufferers). Contact details below.

25% ME GROUP
21 CHURCH STREET
TROON
AYRSHIRE, KA10 6HT
Tel:  01292 318 611


Tuesday, 2 August 2016

Peter Bull

From the Christian Institute website –

Peter Bull 1939-2016: He finished his race


Peter Bull, the guesthouse owner whose legal battle to defend biblical marriage went all the way to the Supreme Court, has died peacefully in hospital aged 76.

Although the Bulls lost the legal case, their Christian witness has challenged people across the UK to remain faithful to the Lord Jesus in their own workplaces.

A thanksgiving service will be held for Peter at 3pm on Saturday 13 August at Carnhell Green Fellowship, Carnhell Green, Cornwall, TR14 0LY.

Christian faith

Until his death, Peter and his wife Hazelmary had run a B&B from their home in Cornwall according to their Christian faith for 30 years.

They welcomed anyone to their home but consistently declined to let double rooms to unmarried couples.

A same-sex couple launched legal proceedings against Peter and Hazelmary after being refused a double bed in September 2008.

The couple’s case against the Bulls was financed by the taxpayer-funded Equality and Human Rights Commission.

Legal Defence Fund

Peter and Hazelmary were supported throughout by The Christian Institute’s Legal Defence Fund.

In January 2011, a judge at Bristol County Court ordered the Bulls to pay £3,600 to the two men for injury to feelings.

Subsequent appeals to the Court of Appeal and, in November 2013, the UK Supreme Court were unsuccessful.

Faithful witness

One of the Supreme Court judges later questioned whether the law could better accommodate religious conscience.

In June 2014, Lady Hale, Deputy President of the Supreme Court, said the law needs to work out “how far it should allow for a ‘conscience clause’” for service providers or employees.

In the face of intense media scrutiny, vandalism to their property and even death threats, Mr and Mrs Bull maintained a faithful and gracious Christian witness.

Through these years of trial they have been sustained by the goodness of God and the kindness of Christian believers across the UK.

Salvation

Peter Bull was born in London and raised in Essex. A building surveyor by trade, he moved to Cornwall after marrying Hazelmary. Initially they ran a guesthouse in Redruth before moving to Marazion 30 years ago.

In the summer of 1975, whilst attending Carnhell Green Fellowship, he was made conscious of his own sin and turned to the Lord Jesus Christ for salvation.

Three weeks later Hazelmary also trusted Christ as Saviour.

Obedience

The couple recognised that their faith required obedience to the Lord Jesus in every area of life. They could not ‘switch off’ the Bible’s teaching when it came to everyday business.

They were gracious towards those who disagreed with their stand and demonstrated God’s love to those who treated them with hostility.

Last year Peter and Hazelmary travelled to Scotland and Northern Ireland to share their story as part of The Christian Institute’s ‘Faith under Fire’ tour.

‘Finished the race’

In 2 Timothy chapter 4 the Apostle Paul tells us at the end of his life that he had “finished the race” and “kept the faith”.

Peter Bull has now finished his race, having remained faithful to Jesus Christ even when this meant a fierce legal battle.


Monday, 1 August 2016

Stop treating Myalgic Encephalomyelitis (ME) as chronic fatigue syndrome (CFS)

(This petition was not set up by me, but I would encourage all to sign it.)


The NHS offers treatment for chronic fatigue syndrome (CFS) and tells us that CFS is "also known as" Myalgic Encephalomyelitis (ME) in order to justify treating ME the same as CFS. It is unethical to treat one condition as another; it makes patients more ill and is a waste of time and money.

Myalgic Encephalomyelitis means "muscle pain + inflammation of the brain and spinal cord", in other words it is a neurological illness. It is accepted as such by the World Health Organization (WHO). The term CFS was coined in the USA and seized upon by psychiatrists in the UK, and today the psychiatric view of ME (that ME does not exist but is really a "fatigue syndrome") now dictates the Department of Health, Nice, and NHS policy. While this policy remains in place, ME patients are untreated.

To sign the petition: 

NB Only British citizens or UK residents have the right to sign.