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.