Monday, 25 December 2017

Seasons Greetings

A Very Happy Christmas to readers of my blog, your families and friends.


From the Bible –

Luke 1 v 26 – 33 - And in the sixth month the angel Gabriel was sent from God unto a city of Galilee, named Nazareth, To a virgin espoused to a man whose name was Joseph, of the house of David; and the virgin's name was Mary. And the angel came in unto her, and said, Hail, thou that art highly favoured, the Lord is with thee: blessed art thou among women. And when she saw him, she was troubled at his saying, and cast in her mind what manner of salutation this should be. And the angel said unto her, Fear not, Mary: for thou hast found favour with God. And, behold, thou shalt conceive in thy womb, and bring forth a son, and shalt call his name JESUS. He shall be great, and shall be called the Son of the Highest: and the Lord God shall give unto him the throne of his father David: And he shall reign over the house of Jacob for ever; and of his kingdom there shall be no end.


Mum’s Christmas Poem 2017 –

Light in the Darkness

“Let there be light”: God spoke and light shone forth,
As at creation’s dawn He made the earth
And heavens by His power, all at their birth
Was good, until man’s fall.

Then darkness came, with sorrow, sin and shame,
With rise and fall of empires bringing pain,
While each life ended with the sad refrain:
This one who lived, has died.

All through this darkness, one sure promise stood:
That evil would be overcome with good.
A Saviour strong would shed His precious blood,
That dying souls might live.

And so a Babe in Bethlehem was born,
Th’ eternal Son of God in human form,
Man’s sin and death, by death to overcome,
To die His people’s death.

On Calvary’s cross salvation’s work was done:
His people’s sin was borne away by One
Who only could for man’s great sin atone,
Life giving by His death.

So on His glorious resurrection day
God’s Son for us has opened up the way
To life eternal. Thankful, now we say,
He who once died, now lives.

© JHS Dec 2017


The following is taken from a sermon preached by C H Spurgeon at the Metropolitan Tabernacle, London, on Christmas Eve 1854 –

"Now a happy Christmas to you all; and it will be a happy Christmas if you have God with you. I shall say nothing to day against festivities on this great birthday of Christ. We will to-morrow think of Christ's birthday; we shall be obliged to do it, I am sure, however sturdily we may hold to our rough Puritanism. And so, 'let us keep the feast, not with old leaven, neither with the leaven of malice and wickedness; but with the unleavend bread of sincerity and truth.' Do not feast as if you wished to keep the festival of Bacchus; do not live to-morrow as if you adored some heathen divinity. Feast, Christians, feast; you have a right to feast. Go to the house of feasting to-morrow, celebrate your Saviour's birth; do not be ashamed to be glad; you have a right to be happy. Solomon says, 'Go thy way, eat thy bread with joy, and drink thy wine with a merry heart; for God now accepteth thy works. Let thy garments be always white; and let thy head lack no ointment.'

"Religion never was designed to make your pleasures less."

Recollect that your Master ate butter and honey. Go your way, rejoice tomorrow, but in your feasting, think of the Man in Bethlehem; let him have a place in your hearts, give him the glory, think of the virgin who conceived him, but think most of all of the Man born, the Child given. I finish by again saying, ---

"A HAPPY CHRISTMAS TO YOU ALL"

Friday, 22 December 2017

Belfast newsletter: We must keep believing science will catch up with ME. There is real hope


Belfast Newsletter, 21 December, 2017, by John McDaid.

“I think that we have not cared for people with M.E. 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.”

This was the unprecedented public apology issued by Bjørn Guldvog of the Norwegian government in 2011 to sufferers of ME, also known as Chronic Fatigue Syndrome.

Tragically, in most other countries sufferers of this invisible and devastating illness remain cast adrift. In some cases, they are told that they are depressed or that their doctor “doesn’t believe in ME.”

My family heard that firsthand. With no known cause, treatment or cure, ME has been described as the last major disease we know almost nothing about.

I knew nothing about ME in 2012 when my younger brother got sick. Paul was a healthy, happy 33 year old, but that summer he came down with a chest infection which he couldn’t shake off.

Within a month or two he became seriously ill, unable to speak or listen to anything beyond a whisper.

The symptoms included burning chest pain, intense migraines, and a profound fatigue which left him unable to sit up, or even brush his teeth.

The diagnosis, when it came after extensive tests including MRI and CAT scans, was that Paul had ME.

It arrived in a letter from the hospital which read: ‘We are sorry to confirm your diagnosis as Myalgic Encephalomyelitis’.

Full stop, no treatment, no after care, no support.

In the very delivery of this devastating news lay the cruelest twist of this illness – that sufferers are virtually abandoned by the system.

There is little or no guidance provided to doctors by the health authorities and scant funding for research to change the status quo.

That Christmas, the family home, usually bustling and bursting with life, was surreal and silent.

My parents were so afraid and none of us knew what lay ahead – we were left to Google this disease and try our best to understand what was happening to our brother and son.

Paul was confined to a dark, noiseless room, where we brought him meals and watched as he struggled to even raise a glass of water.

That first year the illness was so severe that we could barely talk to him, tell him we loved him, or that everything would be OK. Paul has spent most of the last five years in bed.

Alongside the paralysing exhaustion, any sensory stimulation is unbearable for him. For periods he can’t read or write – even a text message is too much to process.

At his worst, he couldn’t even make eye contact or watch any movement when we brought in his meals.

For most of the day he wears an eye mask, ear plugs, and, over the top of them, industrial ear defenders. When any of his senses are overloaded, as you can imagine, it is a disaster. A lawnmower next door brought on a migraine and crash which took him months to recover from.

Despite the tragic history of ME, for the first time there is real hope – in these five years there has been a sea change in awareness, activism and, crucially, research.

Studies in Norway, Australia and the USA are all pointing to origins in the immune system and the race is on to find the cause and treatment for the millions around the world suffering the effects of this disease on their own.

This is the fifth Christmas Paul will spend bedbound, away from his family, his partner Ciara and their son, Naoise.

He has borne this life changing illness with such strength and determination that all we can do is follow his lead and keep believing science will catch up with ME and that sufferers will finally get the care they deserve.

To find out more about ME, a groundbreaking new documentary, “Unrest”, charts a personal journey very similar to Paul’s and is a window into the history of ME and the future of research.

You can visit www.unrest.film to find out more.

Thursday, 14 December 2017

Once In Royal David’s City

With Christmas fast approaching, I think it's time for a Christmas carol -

Once in royal David’s city
Stood a lowly cattle-shed,
Where a mother laid her Baby
In a manger for His bed.
Mary was that mother mild,
Jesus Christ her little Child.

He came down to earth from Heaven,
Who is God and Lord of all;
And His shelter was a stable,
And His cradle was a stall:
With the poor and mean and lowly
Lived on earth our Saviour holy.

And through all His wondrous childhood
He would honour and obey,
Love, and watch the lowly mother
In whose gentle arms He lay:
Christian children all must be
Mild, obedient, good as He.

For He is our childhood’s pattern:
Day by day like us He grew;
He was little, weak, and helpless,
Tears and smiles like us He knew;
And He feeleth for our sadness,
And He shareth in our gladness.

And our eyes at last shall see Him,
Through His own redeeming love;
For that Child so dear and gentle
Is our Lord in Heaven above;
And He leads His children on
To the place where He is gone.

Not in that poor lowly stable,
With the oxen standing by,
We shall see Him, but in Heaven,
Set at God’s right hand on high,
When, like stars, His children crowned,
All in white shall wait around.

Cecil Frances Alexander, 1818-95

Wednesday, 6 December 2017

ME/CFS Collaborative Research Center at Stanford University, funded by OMF

https://www.omf.ngo/collaborative-research-center-stanford/

The ME/CFS Collaborative Research Center at Stanford will be led by Dr. Ron Davis, Professor of Biochemistry and Genetics at Stanford University, and Director of our Scientific Advisory Board. Dr. Davis has assembled a truly world-class team of researchers, many of whom have never before focused their expertise on ME/CFS, and has planned several innovative projects that will help us to understand the molecular basis of ME/CFS, develop better diagnostics, and discover new treatments. Given the number and quality of investigators that this grant would bring into the field, and the likelihood of groundbreaking discoveries coming from this research, OMF has decided to fund this highly promising proposal. Although the National Institutes of Health decided against funding this plan as one of their Collaborative Research Centers, we believe this work is too important and too promising not to pursue. We are not willing to miss the opportunity to actively involve a scientific team of this caliber in the field of ME/CFS research. OMF will, therefore, be supporting the first year of this groundbreaking research with $1.2 million, and we are actively and enthusiastically raising the funds needed to support the remaining 4+ years it will take to complete it.

Scientific Plan

The Center will pursue three distinct projects, all related to understanding and treating ME/CFS by developing and using cutting-edge technologies. This work will build on previous projects that OMF has supported. For more information about these projects from the scientists involved, please see the YouTube videos from our recent Community Symposium on the Molecular Basis of ME/CFS.

1. T cells and the molecular immunology of ME/CFS

Sequencing single T cells and discovering their targets

Many studies have shown that the immune system is affected in ME/CFS patients, e.g., low activity of NK cells, altered levels of cytokines (signaling molecules of the immune system), and the likelihood of a microbial infection preceding the illness. Now, scientists on this team have implicated T cells – the immune cells responsible for identifying and killing infected cells – in ME/CFS. Specifically, their discovery of T cell clonal expansion indicates that patient T cells are reacting to a foreign invasion (e.g., virus) and/or to the ‘self’ (autoimmunity). HLA genes play a part in this reaction, and personal variations in these genes may also be playing a role in the risk of developing the disease. Discovering what is triggering this T cell clonal expansion will help to determine immunological causes of ME/CFS, may explain the elevated cytokine levels, and could lead to new treatments.

The Collaborative Research Center at Stanford will investigate the immunological basis of ME/CFS using several approaches. Dr. Mark Davis’ team will investigate the clonal expansion of T cells in ME/CFS, including what they might be targeting – viruses, bacteria, or self (autoimmune). Dr. Ron Davis’ team has invented a highly accurate, cost-effective method for HLA gene sequencing and a very sensitive method for detecting viral DNA as a sign of viral infections, which he will use in this project. Dr. Lars Steinmetz’ team has developed effective methods for sequencing RNA from single T cells, which they will use to understand how T cell behavior may be different in ME/CFS. Overall, these methods will help to determine if ME/CFS is an autoimmune disease, and what immune factors may be triggering ME/CFS or sustaining it as a chronic disease. By helping to understand the immunology of ME/CFS, it may be possible to identify treatments that modulate the immune response.

2. Extended big data study in families

Genome sequencing, gene expression, metabolomics, cytokines, clinical features, and more

OMF has funded a big data study of 20 severely ill ME/CFS patients, encompassing a huge variety of molecular and clinical tests, the largest of its kind in this disease. Among many things, this study is helping to look for genetic factors and potential molecular biomarkers, and is allowing us to generate many hypotheses. The analysis of this dataset, led by Dr. Wenzhong Xiao, has yielded many interesting observations, but it is clear that more patients must be profiled in this way to validate and extend these observations to a less severe population. The Collaborative Research Center at Stanford will expand this big data study to patients of varying severities and their families.

It has been clear for some time that there are families with multiple members affected. This might be caused by a genetic predisposition to the disease. Studying these families is likely to yield a better understanding of the factors that make someone susceptible to ME/CFS. Fereshteh Jahanbani, PhD, a Research Associate with Mike Snyder, PhD, hypothesizes that using unaffected members of these families as controls will reduce the variance in the data between controls and affected, because of the similarities in their genetics, environment, and diet. The team anticipates that this study will help define meaningful subgroups of patients, biomarkers that could be useful in diagnosis and monitoring of disease progression, and molecular defects that could be targeted with new treatments.

3. Developing blood-based diagnostic and drug screening technology

Enabling fast, inexpensive diagnosis of ME/CFS and discovery of new treatments

One of the greatest obstacles in ME/CFS research and patient care is the lack of a biological diagnostic. Dr. Davis’ engineering team has promising preliminary technologies that can distinguish ME/CFS blood samples from healthy samples, and is currently refining these technologies and investigating what the results tell us about ME/CFS biology. The technologies include the nanoneedle biosensor, developed by Rahim Esfandyarpour, PhD, the magnetic levitation platform developed by Gozde Durmus, PhD, and more. The Collaborative Center will continue this work to engineer a blood-based diagnostic device that would also be useful as a reporter for drug screening. Dr. Davis’ team has already tested chemicals in two of our platforms, some of which have made the patient samples behave more like healthy samples. To validate these findings and test large numbers of samples and candidate drugs, they will further develop and optimize the technology. Eventually, the developed technology will be shared across the ME/CFS research community to accelerate its evaluation and adoption as a clinical diagnostic assay. The Stanford Genome Technology Center has developed a number of diagnostic assays that have been commercially exported and are now in clinical use. Dr. Davis’ team has experience in the complex process of developing and implementing an assay that becomes approved for clinical use, in the USA, as well as in Europe and other countries.

Scientific Team

To carry out this ambitious work, Dr. Davis has assembled a team of extraordinary scientists with expertise in a variety of areas directly relevant to ME/CFS research. Most of these scientists are new to ME/CFS, bringing with them extensive knowledge and perspective from other fields and diseases.

ME/CFS Collaborative Research Center at Stanford Team:

Ron Davis, PhD, Professor of Biochemistry and Genetics, Stanford University School of Medicine; Director, Stanford Genome Technology Center; Director, Chronic Fatigue Syndrome Collaborative Research Center at Stanford University; Director, Open Medicine Foundation ME/CFS Scientific Advisory Board.

Mark M. Davis, PhD, Director, Stanford Institute for Immunology, Transplantation and Infection (ITI); Professor of Microbiology and Immunology; Howard Hughes Medical Institute Investigator.

Mike Snyder, PhD, Chair, Stanford Department of Genetics; Director, Stanford Center for Genomics and Personalized Medicine

Wenzhong Xiao, PhD, Director, Immuno‐Metabolic Computational Center, Massachusetts General Hospital, Harvard Medical School.

Craig Heller, PhD, Professor of Biology, Stanford University, exercise physiologist.

Robert Phair, PhD, Chief Science Officer, Integrative Bioinformatics, Inc..

Lars Steinmetz, PhD, Co-Director, Stanford Genome Technology Center; Professor of Genetics, Stanford University; Senior Scientist, Genome Biology Unit, European Molecular Biology Laboratory.

Raeka Aiyar, PhD, Director of Communications and Development, Stanford Genome Technology Center.

Laurel Crosby, PhD, Engineering Research Associate, Stanford Genome Technology Center – multi-system integration

Rahim Esfandyarpour, PhD, Engineering Research Associate, Stanford Genome Technology Center – electrical engineering, device fabrication

Fereshteh Jahaniani, PhD, Research Associate, Stanford Center for Genomics and Personalized Medicine – multi-omics

Mohsen Nemat-Gorgani, PhD, Life Science Research Scientist, Stanford Genome Technology Center – protein biochemistry, enzymology

Peidong Shen, PhD, Research Associate, Stanford Genome Technology Center – biochemistry, cell-free DNA detection methods

Gozde Durmus, PhD, Postdoctoral Fellow, Stanford Genome Technology Center – magnetic levitation platform, bioengineering

Julie Wilhelmy, Life Science Research Professional, Stanford Genome Technology Center – experimental genomics, immunology

Robert Naviaux, MD, PhD, Professor of Medicine, Pediatrics, and Pathology, University of California, San Diego; Co-Director of Mitochondrial and Metabolic Disease Center

William Robinson, MD, Associate Professor of Medicine (Immunology and Rheumatology), Stanford University

Curt Scharfe, MD, Associate Professor of Genetics, Yale University

Lucinda Bateman, MD, founder and Medical Director of the Bateman-Horne Center for ME/CFS and Fibromyalgia

David Kaufman, MD, ME/CFS Physician

Working Group

We are fortunate that many members of the scientific, medical, and biotechnology communities have offered their expertise and resources to this Center.

Paul Berg, PhD, Professor of Biochemistry, Emeritus, Stanford University; Nobel Laureate

Mario Capecchi, PhD, Professor of Human Genetics and Biology, University of Utah; Nobel Laureate

Baldomero Olivera, PhD, Professor of Biology, University of Utah

Alain Moreau, PhD, Professor of Biochemistry and Molecular Medicine, University of Montreal

Øystein Fluge, MD, Department of Oncology and Medical Physics, University of Bergen, Haukeland University Hospital, Bergen, Norway

Olav Mella, MD, Department of Oncology and Medical Physics, University of Bergen, Haukeland University Hospital, Bergen, Norway

Jonas Bergquist, MD, PhD, Professor of Analytical Chemistry and Neurochemistry, Uppsala University, Sweden

Jonas Blomberg, MD, PhD, Professor of Clinical Virology, Emeritus, Uppsala University, Sweden

Maureen Hanson, PhD, Professor of Molecular Biology and Genetics, Cornell University

Chris Armstrong, PhD, Department of Biochemistry and Molecular Biology; Bio21 Molecular Science & Biotechnology Institute researcher at the University of Melbourne, Melbourne, Australia

Neil McGregor, BDS, MDSc, PhD, senior researcher, Bio21 Molecular Science and Biotechnology Institute, University of Melbourne, Melbourne, Australia; Adjunct Professor, Victoria University, Melbourne, Australia

Ronald Tompkins, MD, ScD, Professor of Surgery, Harvard Medical School; Founding Director of Center for Surgery, Science & Bioengineering at Massachusetts General Hospital

Catherine Blish, MD, PhD, Assistant Professor of Medicine and of Immunology, Stanford University

Christopher Garcia, PhD, Professor of Molecular and Cellular Physiology, Stanford University

Roger Howe, PhD, Professor of Engineering, Stanford University; Director, Stanford Nanofabrication Facility

Tom Soh, PhD, Professor of Electrical Engineering, Radiology, and by courtesy, Chemical Engineering, Stanford University

Robert Tibshirani, PhD, Professor of Biomedical Data Sciences and Statistics, Stanford University

Alan Light, PhD, Professor of Anesthesiology, University of Utah

Emmanuel Mignot, MD, PhD, Professor of Sleep Medicine and of Psychiatry and Behavioral Sciences, Stanford University; Director of Stanford Center for Sleep Sciences and Medicine

Gerald Shadel, PhD, Professor of Pathology and Genetics, Yale University; Director of Yale Center for Research on Aging

Jarred Younger, PhD, Associate Professor of Anesthesiology and Rheumatology and of Psychology, University of Alabama at Birmingham; Director, Neuroinflammation, Pain, and Fatigue Laboratory

John Ryals, PhD, President and CEO, Metabolon

Chunlin Wang, PhD, Chief Technology Officer, iRepertoire, Inc.

Michael Mindrinos, PhD, President of Sirona Genomics, an Immucor company

David Bell, MD, ME/CFS Physician

Kevin Tracey, MD, Professor of Neurosurgery and Molecular Medicine, Hofstra Northwell School of Medicine

Jennifer Frankovich, MD, Clinical Associate Professor of Pediatric Rheumatology, Stanford University

Jose Montoya, MD, Professor of Medicine, Stanford University; ME/CFS Physician

Susan Levine, MD, ME/CFS Physician

Harry Greenberg, MD, Senior Associate Dean of Research, Professor of Medicine, Stanford University

Bela Chheda, MD, ME/CFS Physician

Patient partners

We are very grateful for the support and contributions of the ME/CFS patient community, which has and will continue to play an integral role in moving research forward. We are committed to continuing to involve patients as participants and consultants throughout these projects, and maintaining open communication about our findings through a variety of venues. We are especially grateful to all the patients who selflessly volunteer to be subjects in our research, who generously donate to make our research possible and who send Dr. Davis their ideas, scientific analyses, and links to publications. Our patient partners are a significant and essential part of our team.

Friday, 1 December 2017

Professor Malcolm Hooper – Off the PACE

Professor Malcolm Hooper – Off the PACE

At a conference in November run by the Academy of Nutritional Medicine (http://aonm.org/) entitled “Waking to a New Dawn: The Emergence of 21st Century Acquired Immune Deficiences & Innovative Solutions”, the keynote speaker was Professor Malcolm Hooper, who is well known to people with ME, and who gave a talk called “OFF THE PACE: CMIs, BPS, PACE, GUIDELINES and CONSEQUENCES”. 

To view the PowerPoint presentation of Professor Hooper’s talk -


To read his notes –


Well worth looking at by anyone interested in the background of all that has happened in the ME world over the last 30 years or so, and in finding out how things have ended up as they are now.

Monday, 27 November 2017

ME Association Statement: Negative phase III clinical trial result from Norway for Rituximab in ME/CFS


ME Association Statement: Negative phase III clinical trial result from Norway for Rituximab in ME/CFS | 27 November 2017

By Dr Charles Shepherd, Hon. Medical Adviser, ME Association.

“I was disappointed to learn – while at the Royal Society screening of the documentary, Unrest, in London last Thursday – of the preliminary (but unpublished) results from the phase III clinical trial of Rituximab, that has been carried out in Norway.

“This large, multicentre, ‘gold standard’ clinical trial, involved 152 people with ME/CFS receiving either Rituximab or a placebo, with initial treatment followed by maintenance treatments at 3, 6, 9 and 12 months, and a two year follow up.

“The ME Association has consistently taken the position that Rituximab could be one of the most promising developments in the search for a safe and effective drug treatment that is targeted at the underlying disease process in ME/CFS.

“We also know that the physicians involved in this research – Drs Oystein Fluge and Olav Mella from the Haukeland University Hospital in Norway – have taken great care in the way that they have devised the protocols for the clinical trials that have been carried out and reported.

“Despite the headline negative finding, we believe that this trial will still provide useful insights and contribute to a better understanding of M.E., and we also have the results from the Cyclophosphamide clinical trial to look forward to. We are very pleased that this knowledgeable, and valued, research team will continue with their work, trying to find answers to the M.E. puzzle.

“The ME Association Ramsay Research Fund had set aside around £60,000 to help support this research, or to help fund a clinical trial of Rituximab here in the UK, if such funding was required, and applied for by a reputable research or clinical trials group. No research grant applications have been received.

“It is difficult to comment further on these very basic preliminary results, and my understanding is that no further comment will be made by those involved until the study is published early next year. However, we do believe that it is correct and helpful for the patient community to be notified about the disappointing key conclusions prior to publication.

“Any decision – including if it is going to be sensible for the charity sector to be raising or spending further large sums of money on research involving the theoretical basis to this treatment (i.e. immune system dysfunction, involving the B-cell component of the body’s immune system), or further clinical trials to assess the safety and efficacy of Rituximab – will have to wait until more detailed information becomes available about the outcome of this phase III clinical trial, and the scientists involved have expressed their opinion as to whether further such research is justified.

“Based on the results from the clinical trials that have been published so far – along with the rather mixed evidence from people with M.E. who have been prescribed Rituximab outside formal clinical trials – it does appear that this type of immunotherapy could still be relevant to at least a sub-group.

“If it is agreed by experts in this area of immunotherapeutics (and we will be seeking expert advice), that we should continue to explore the role of Rituximab as a possible treatment for ME/CFS – and try to find immune system biomarkers that could help to identify the sub-group of people with M.E. who are most likely to respond to such treatment – the ME Association will continue to invite applications for research grants to the Ramsay Research Fund.

“Medical journals are less enthusiastic about publishing negative research findings or negative results from clinical trials. However, given the enormous amount of interest in Rituximab, from both people with M.E. and the medical community, I am confident that these results from Norway will be accepted for publication in due course.

“The ME Association is currently considering a number of other research applications – some of them quite large – and trustees will discuss the latest news about the Rituximab clinical trial at their Board meeting in December. A decision will then be made as to whether the £60,000 currently set aside, should remain as a ring-fenced sum for funding Rituximab research, or used for other biomedical research applications.”

Dr Charles Shepherd,
Hon Medical Adviser, ME Association.

Wednesday, 22 November 2017

Invest in ME Research Initial Statement on Norwegian Phase III Rtiuximab Clinical Trial

http://www.investinme.org/IIMER-Newslet-1711-03.shtml

Rituximab Trial Status   November 2017

Norwegian Statement on Phase III Trial

Professor Olav Mella recently publicly released early details from the Phase III multi-centre double-blinded placebo-controlled Rituximab Clinical Trial which has been ongoing in Norway for the past year.

Invest in ME Research have been informed by Dr Oystein Fluge of this.

Invest in ME Research have issued this preliminary statement (below).

The Haukeland team will be presenting at the IIMEC13 13th International ME Conference in London on 1st June 2018


Invest in ME Research Initial Statement on Norwegian Phase III Rtiuximab Clinical Trial

November 21, 2017

The statement from Haukeland University, Bergen from Professor Mella is a major disappointment for people with ME and their families.

What had looked to be a promising line of research that could lead to an effective treatment for a subgroup of patients defined by the Canadian Criteria and major understanding of the pathology of this disease has proven to be inconclusive.

Naturally, at the charity, everyone is disappointed. We are disappointed for all the ME patients and carers and families and friends.

We are especially disappointed for all of our supporters and all who have made such generous and tireless efforts to raise funds and awareness of our campaign.

We are very disappointed also for the Haukeland research team - a wonderful team who have brought hope to all patients - and, importantly, brought new insight into this disease and new interest from other areas. 

However, we have found, throughout 12 years of trying to change the way that ME is perceived, researched and treated that it is never easy.

It would be easy to give up, to resign oneself to nothing changing, to accept the status quo.

But we think differently.

At the 2017 Colloquium/Conference we invited Karolinska Institutet in Stockholm to present negative results. Because it is important to use negative results for positive effects. Negative results are data and the Norwegian rituximab trial has generated a lot of data that needs to be looked at very carefully. 

When we first engaged Professor Jonathan Edwards into research into ME one of the earliest comments he made was that he was pleased to note that our conference did contain negative results.

We see the positives in this research which has been performed by researchers of the utmost integrity who have not made headlines for the sake of it but have thoroughly conducted outstanding research, and still retained a humility that is to their credit and that of their colleagues and team.

We have an excellent research team in Norway which has served the ME patient community and their families with honesty, integrity, professionalism, detemination and an empathy which had never been seen before in this field.

We have established good working relationships between the Norwegian researchers and the UK Centre with input from UCL and UEA/Quadram Institute.

We have data now – more than before.

We have research which IiMER has established and a foundation for the Centre of Excellence for ME.

We have international collaboration in research into ME that will continue.

And we have new plans – already in the making.

The researchers from Haukeland will give more detail on their results and publish a paper or two which will benefit all studying ME. 

For us, we have invited the Haukeland team to Norwich to discuss the way forward.

We remain positive. Another setback, another day.

We have already been in discussion with our advisors and with the Norwegian team and we will meet to clarify the best way forward in the near future with our major funder and researchers.

We still have much good research being funded and being planned and feel our stategy is, and will pay off and lead to the most rapid route to finding cause(s) of ME and effective treatments.

In another age, and in another struggle which has some parallels to that which is forced upon people with ME, these words strike a chord -

“We must accept finite disappointment, but never lose infinite hope. ” 

- Dr Martin Luther King

Friday, 10 November 2017

The eternal God is thy refuge


C H Spurgeon's Morning Devotional for 10th November 

"The eternal God is thy refuge."

Deuteronomy 33:27

The word refuge may be translated "mansion," or "abiding-place," which gives the thought that God is our abode, our home. There is a fulness and sweetness in the metaphor, for dear to our hearts is our home, although it be the humblest cottage, or the scantiest garret; and dearer far is our blessed God, in whom we live, and move, and have our being. It is at home that we feel safe: we shut the world out and dwell in quiet security. So when we are with our God we "fear no evil." He is our shelter and retreat, our abiding refuge. At home, we take our rest; it is there we find repose after the fatigue and toil of the day. And so our hearts find rest in God, when, wearied with life's conflict, we turn to Him, and our soul dwells at ease. At home, also, we let our hearts loose; we are not afraid of being misunderstood, nor of our words being misconstrued. So when we are with God we can commune freely with Him, laying open all our hidden desires; for if the "secret of the Lord is with them that fear Him," the secrets of them that fear Him ought to be, and must be, with their Lord. Home, too, is the place of our truest and purest happiness: and it is in God that our hearts find their deepest delight. We have joy in Him which far surpasses all other joy. It is also for home that we work and labour. The thought of it gives strength to bear the daily burden, and quickens the fingers to perform the task; and in this sense we may also say that God is our home. Love to Him strengthens us. We think of Him in the person of His dear Son; and a glimpse of the suffering face of the Redeemer constrains us to labour in His cause. We feel that we must work, for we have brethren yet to be saved, and we have our Father's heart to make glad by bringing home His wandering sons; we would fill with holy mirth the sacred family among whom we dwell. Happy are those who have thus the God of Jacob for their refuge!

Friday, 3 November 2017

Will The UK Establishment Finally Stop Denying The Reality Of ME?


By Dr Simon Duffy, Director of the Centre for Welfare Reform

Jennifer Brea's powerful film Unrest exposes the reality of Myalgic Encephalopathy or ME. This condition leaves people utterly exhausted, or as Brea puts it, like a broken battery, unable to charge beyond 10%.

ME is poorly understood and receives minimal research. Brea was repeatedly misdiagnosed and, on one occasion, even told that it was all in the mind - the result of some long-forgotten trauma.

Eventually Brea discovered that there was not only a name for her condition but that there are millions of other people suffering with ME. With the correct diagnosis she has managed to reduce the impact of ME on her life, but she also came to understand how this real disease creates double-barrelled suffering: first, it devastates your life by robbing you of energy; second, the failure of society to respect the reality of your illness makes you invisible and defenceless.

So, why has ME been so badly misunderstood?

Dr Charles Shepherd explains that in the UK two psychiatrists played a particularly damaging role, by treating an outbreak of ME (within a hospital) in 1955 as an example of hysteria. This dangerous desire to solve a problem by evading the problem, has been made all the easier by the emergence of something called the biopsychosocial (BPS) model: this is an all encompassing framework for rethinking illness - making it part biological, part mental, part social. This may seem reasonable, but it easily becomes a way of blaming the victim and claiming it's all in the mind.

The PACE Scandal also demonstrates the powerful forces at work. PACE was a research programme to test two 'therapies' for people with ME - Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET). Although these therapies did not prove effective, researchers amended the rules of the evaluation so that people who had got worse were counted as having benefited from these therapies.

Outside the UK the PACE research has been severely criticised; but the Countess of Mar believes that the UK media has been frightened into silence by the Science Media Centre whose board members include Sir Simon Wessely, one of the psychiatrists connected to the PACE scandal. Even more disturbing is that Mrs May has now asked Wessely to lead an Independent Review of the Mental Health Act 1983 - a decision heavily criticised by independent advocates.

The UK Government also seems to have a stake in maintaining the belief that ME is all in the mind. Mo Stewart, in her book Cash Not Care, has shown how the US Insurance Company Unum has promoted the BPS model within the DWP, encouraging the UK Government to reduce disability benefits in order to grow the market for their own disability insurance products. Lord Freud cited the PACE research as important evidence to justify the use of BPS in their welfare 'reforms' and medical diagnoses have now been replaced with dubious catch-all assessments of 'readiness for work' or 'level of help.' The film I, Daniel Blake accurately captures many of the horrors of these mindless and inhuman processes.

Fortunately, in the USA, researchers are now taking ME seriously, and making important progress. CBT and GET are no longer recommended as helpful therapies and instead there is increasing recognition that excessive exercise can be extremely dangerous. The level of research is still inadequate, but no one doubts the reality of the illness and important and revealing tests have been developed.

Brea's film, which is winning awards and being widely seen, may help undermine the resistance of the UK establishment, but there is still a long way to go. Even if there are research breakthroughs people will still be living with the disabling consequences of ME. It is for this reason that the Centre for Welfare Reform is supporting the Chronic Illness Inclusion Project. Our aim is to help the community of people suffering from chronic illnesses (including, but going beyond, ME) to find their own voice, to build alliances with other disabled people and to ensure that they are no longer invisible before the eyes of the powerful.

Wednesday, 1 November 2017

ME sufferers being shamefully let down by professionals


LINDA BURNIP and DENISE McKENNA from Disabled People Against Cuts spotlight how people with ME are having their health and welfare harmed by poor research and misuse of statistics

LAST week, over 65 deaf and disabled people’s organisations, campaigns and mental health professionals wrote to the Prime Minister asking her to urgently rethink her decision to appoint Professor Sir Simon Wessely to lead the much-anticipated independent review of the Mental Health Act as announced in her speech at the Conservative Party conference on October 4.

Wessely’s body of work on myalgic encephalomyelitis (also known as chronic fatigue syndrome), and his conduct in relation to people with ME, make him resoundingly unfit to lead an inquiry into the Mental Health Act.

ME is a poorly understood illness, believed by most researchers in the field to have a physical cause. But the “psychiatrisation” of ME through a cognitive-behavioural approach to the illness led by Wessely since the late 1980s has resulted in treatment (particularly graded exercise therapy, or GET) which can be harmful and even coerced, in the stigmatisation of patients and let to the frequent denial of their entitlement to social security and support.

Wessely has consistently promoted the unsubstantiated suggestion that ME is caused or maintained by patients’ false illness beliefs and abnormal behaviour.

As a result, the integrity of patients’ experience of this devastating illness been destroyed as their testimony is deemed unreliable.

This form of “epistemic injustice” (according to medical ethics scholars Blease et al) has seen people with ME derided within the medical profession and wider society for misperceiving, exaggerating, even creating their own illness.

Wessely’s approach to ME involves treatment with GET, aimed at reversing the physical consequences of what he sees as their dysfunctional behaviour.

Nearly 50 per cent of people with ME surveyed reported that treatment with GET made their condition worse.

Yet Wessely and his colleagues are silent on the subject or dismiss patient experience as unreliable evidence or poor treatment compliance.

As a result, thousands of people with ME have received NHS treatment informed by his model that has further damaged their health.

Wessely continues to defend the notorious Pace trial, a study into CBT and GET treatment for ME/CFS part-funded by the Department for Work and Pensions and widely condemned by academics for misuse of statistical methods in order to produce positive-looking results.

Wessely’s involvement in media discussions about ME has further suppressed patients’ voices. Following the publication of results from the Pace trial, Wessely and his colleagues responded to concerns about their work by taking part in media campaign which promoted prejudice and led to those patients who had identified serious methodological and statistical problems being dismissed as irrational extremists motivated by anti-psychiatry.

The Science Media Centre, for which Wessely is a trustee, has played a key role in promoting misleading information about the Pace trial, and smearing critics.

During the 1990s Wessely advised the DWP (then DSS) that classifying ME as a neurological illness, as the World Health Organisation does, would perpetuate patients’ false beliefs, prolong their illness and result in a deluge of disability claims.

The influence of Wessely and his colleagues on DWP training manuals on CFS/ME has undoubtedly resulted in a disability assessment system biased against people with ME and caused them great additional difficulty in accessing support with the extra costs of their disability.

The work of Jonathan Rutherford reveals how Wessely was among a group of medical and insurance industry professionals whose work on “malingering and illness deception” influenced the DWP’s understanding of ill-health and disability.

Wessely and his colleagues shaped the ideology underpinning the disastrous work capability assessment (WCA) known as the “biopsychosocial model.” According to Professor Tom Shakespeare and colleagues who have exposed the poor science underpinning the biopsychosocial model, this approach to disability effectively blames disabled people seeking social security support for their own misfortune.

The WCA has had a devastating impact on the lives of disabled people as part of a package of welfare reforms leading, in the words of the UN disability committee, to “human catastrophe.”

All of these activities amount to an abuse of power by Wessely against people with ME. His thoughts and actions have led to stigma, iatrogenesis and a denial of their rights to support, all of which have compounded the burden of this illness immeasurably.

Monday, 23 October 2017

ME Association petition has been sent to Sir Andrew Dillon at NICE: M.E. is not a functional disorder


The most recent ME Association petition called on NICE to amend its proposed guideline on suspected neurological conditions, and remove all reference to ME/CFS being a functional disorder.

We wrote to Sir Andrew Dillon last Friday, with a covering letter (below) and enclosed the final petition – supported by 13,593 people – along with 199 pages of comments; such was the strength of feeling shown.


Dear Sir Andrew,

Firstly, thank you for the recent decision to fully review and update the NICE guideline for ME/CFS. It was a very welcome development and, as registered stakeholders, The ME Association and Forward ME Group (a collaboration of ME/CFS charities of which we are a member) are very much looking forward to representing the patient community at future meetings.

I am writing to you today in support of the Forward ME Group submission as stakeholders in the development of a new guideline for suspected neurological conditions. The draft guideline currently includes reference to ME/CFS being an example of a ‘functional disorder’ which the guideline  defines as a condition that is ‘emotionally generated’ and ‘which may mimic physical disease’. This ‘functional disorder’ classification is then used as a basis for advising health professionals to not refer patients with specific ME/CFS symptoms such as deteriorating cognitive dysfunction for a neurological opinion.

The submission sets out the reasons why this description of ME/CFS is inaccurate and rather alarming – especially as it is not reflected in CG53, the guideline for ME/CFS, and as this disease is recognised by the World Health Organisation (in ICD10) and Department of Health, as being neurological.

In support of this submission, The ME Association launched a public petition for a period of two weeks, that enabled people who are affected by ME/CFS to demonstrate their support that this erroneous description and implied causation be removed.

The petition closed on 11th October and was supported by 13,593 people – all of whom want to see all references to ME/CFS being a ‘functional disorder’ removed from the new guideline and/or ME/CFS removed in its entirety.

As well as enclosing the petition for your reference, I have also enclosed 199 pages of comments – such was the strength of feeling about this error – from patients, carers, family members of the severely affected and health professionals working in this field, for example:

“Having been a specialist therapist for 20 years working with CFS/ME patients I can assure you that this is not a functional illness.”
“This devastating disease has destroyed my life and that of others I’ve met. Adding to that destruction by denying the revealing international medical research highlighting the physical dysfunctional processes and pretending it is psychological in origin is heartlessly cruel.”

Neurology should be welcoming people with ME/CFS and not trying to pass them off onto other specialisms, especially when neurology can play such a key role in diagnosis and management.

We would very much like the guideline development members, who are meeting to consider stakeholder submissions and finalise the suspected neurological conditions guideline, to consider the content and strength of feeling demonstrated by this petition and in the comments, it attracted.

If NICE can again show that it has listened to feedback from stakeholders, patients and their representatives – as well as professionals working in the field – and correct the error in this new guideline, we believe the decision will be as warmly welcomed by the ME/CFS patient community as your decision to review the guideline for ME/CFS.

We would welcome an explanation as to how this error arose and why, when NICE prides itself on consideration of the evidence-base, no evidence was considered before ME/CFS was deemed to be a ‘functional disorder’ and referral of patients to neurology was decided to be unnecessary.

Please show you have listened and take on board this significant feedback.

I look forward to hearing from you in due course.

With kind regards

Yours sincerely

Dr Charles Shepherd.
Hon Medical Adviser

Enclosures: