Tuesday, 24 September 2019

Dead But It Won’t Lie Down

Dead but it won’t lie down: The myth that ME (Myalgic Encephalomyelitis) = MUS (Medically Unexplained Symptoms).

http://www.oneagleswings.me.uk/dead-but-it-wont-lie-down/ 

(I did not write this article, but the author (who wishes to remain anonymous) has given me permission to put it on my website.)

How the myth began

Governments in the 1980s, confronted with numbers of people being diagnosed with ME, were concerned about the financial impact of the condition.  The possibility that psychiatrists could offer treatments such as talking therapies, graded exercise or antidepressants, seemed a comparatively inexpensive way out.  The idea of dealing with ME as a psychiatric rather than a physical condition was helped by an article in The Times which used the term “yuppie flu”, a term which somehow impressed itself on many minds. The use of the term “chronic fatigue” has also both trivialised and confused the situation.  After all, chronic fatigue is a symptom of many conditions, and is hardly a description of the many serious symptoms of ME.

How the myth has been perpetuated

The very broad criteria used by some in diagnosing ME resulted in a mixed bag of conditions being lumped together: some physical, some mental, some serious, some less so.  With such an assortment of patients to treat, a reasonable number could be relied on to improve with the “treatments” on offer.  The fact that these recovered patients never had the actual illness known as ME in the first place was disregarded or not understood.

Why the myth should now be buried

Over the years there have been those who have dedicated their time and their medical knowledge to understanding this illness.  Able by their medical experience to recognise a serious physical condition, they have also been able to understand some of the physical causes which must lie behind the many symptoms.  Their belief in what patients were telling them and their persistence in seeking answers has been the one ray of light in a very dark tunnel for those who have been ill for years or decades, without help and support.  The good news is that science is now filling in the gaps in knowledge.  Excellent research at Stanford University has shown the failure of the body’s energy production system, making exercise therapy both useless and dangerous.  This is very much a work in progress, but there is more than sufficient evidence already of a very serious physical disease for the MUS myth, as far as ME is concerned, to be buried as deep as possible.

© 2019.

Monday, 16 September 2019

Ron Davis discusses his research at Stanford and An Exciting Week for Advancing ME/CFS Research



Ronald W. Davis is a Professor of Biochemistry and Genetics at Stanford University and Director of the Stanford Genome Technology Center. He also has a personal connection to ME/CFS -- his son was diagnosed almost 10 years ago.

In this interview with Llewellyn King, Ron discusses his research at Stanford.

The interview was posted on YouTube on September 13th 2019.

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An Exciting Week for Advancing ME/CFS Research 

https://www.omf.ngo/2019/09/16/an-exciting-week-for-advancing-me-cfs-research/

Linda Tannenbaum 

I’m pleased to share with the OMF community that the OMF sponsored Stanford ME/CFS Working Group and Third Annual Community Symposium on the Molecular Basis of ME/CFS once again is helping to advance urgently needed research on this disease.

During the three days prior to the Community Symposium, 60 scientists from all over the world, including OMF Scientific Advisory Board members, actively participated in the Working Group. They gathered behind closed doors to brainstorm and openly discuss new ideas to move this field forward.

It was wonderful to see that this year there were new faces and early-career participants, including talented engineers, contributing to the discussions. From my conversations during the meetings, it struck me again how much kindness, passion and collaborative spirit all the participating scientists have.

At the lovely pre-symposium dinner on Friday evening at Dr. Ron Davis’s home, I had the pleasure to thank Dr. Davis as well as Dr. Ron Tompkins, Dr. Wenzhong Xiao, and Dr. Jonas Bergquist for the initiative they’ve taken in leading the OMF-funded Collaborative Research Centers, as well as the many scientists, donors, leaders and OMF staff for all their hard work.

On Saturday, the Community Symposium provided our outstanding panel of speakers an opportunity to share updates with the international ME/CFS community as well as those attending in person. Nearly 300 people were present, mostly from the U.S. but also from Sweden, Norway, Canada, Korea, Japan and Italy, and the Livestream broadcast and Facebook Live reached thousands more around the world.

In between presentations, patients, scientists and clinicians exchanged insights and ideas. It’s always inspiring to see how the scientists and clinicians in this field are personally invested in finding answers for patients fast, and how much they’re interested in learning from patients and using these events to interact with the community as much as possible.

Paolo Maccallini, a patient-expert who traveled from Italy to attend, described the experience perfectly: “Meeting all these top-notch scientists, gathered to share their perspectives on the latest advancements in the knowledge of ME/CFS, was thrilling. You deeply perceived the collaborative spirit and the professional trust they have for each other. This, along with the information they shared, made me confident for a hopeful future for patients.”

The Symposium ended on a very encouraging note, when all six speakers who were on stage for the closing panel discussion agreed, “We are very hopeful for the near future!”

In the years I’ve been working to end ME/CFS, I’ve never felt more hopeful and inspired. Our talented research collaborators have the expertise to figure this out, and the generous support of the community continues to grow so we can accelerate the pace of discovery.

With that in mind I want to emphasize to patients, keep hope alive; there’s light at the end of the tunnel, now more than ever!

Thank you all for being a part of this unique community effort, and I look forward to keeping you updated on the exciting ME/CFS research that you help make possible. We will share an overview of the Symposium from Dr. Chris Armstrong soon.

With hope for all,

Linda Tannenbaum

Founder & CEO/President

Monday, 9 September 2019

Tribute paid to Professor Peter Behan – M.E. expert and ME Association patron


On the ME Association website – 

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

I knew Peter Behan as a friend and colleague for almost 40 years.

I first met him when the late Dr Melvin Ramsay, who originally diagnosed my own M.E. following an episode of chickenpox encephalitis, suggested that I should go and see Peter at the Institute of Neurological Sciences at the University of Glasgow to help with the research that he was doing into the condition. 

It was immediately obvious that Peter was a very kind and caring physician who knew all about ME.  

Peter was also an outstanding neurologist who, along with his wife Professor Mina Behan and virologist Professor John Gow, was carrying out important research into brain, muscle and immune system function, along with the role of infection, in people with M.E.

Unlike most of his neurology colleagues he had no doubt that M.E. was a serious neurological illness and that the patients were being badly let down by both clinicians and the research community.  

The papers that were published from his research group at the time played a significant role in helping to change medical opinion about M.E. and the whole situation regarding research. 

The fact that M.E. was firmly on the medical curriculum at the Southern General Hospital also meant that a succession of neurologists working in Peter’s team gained a solid knowledge of the condition – Dr Abhijit Chaudhuri in particular, who now advises the ME Association on neurology.

Peter continued with his research interest well into retirement and helped to develop the research strategy for the MEA Ramsay Research Fund and made personal donations to the fund.

In recognition of his contribution to both clinical and research work he was invited to become a Patron of the ME Association – a position he held until his death at the end of August.

Peter was excellent and amusing company – either in Glasgow, or up in Denkeld where he was an accomplished fisherman with an encyclopaedic knowledge of salmon fishing. Each year at Christmas we would receive one of Peter’s whole smoked salmon from the Tay!

I kept in touch with Peter following his move to Edinburgh where, despite failing health in the past few years, he was always keen to know what was happening to research into M.E.

We all owe an enormous debt of gratitude to Peter. He will be sadly missed and I will be attending his funeral on Friday 13th September in Edinburgh on behalf of the ME Association.

Obituary

BEHAN Professor Peter Oliver Professor Emeritus of Neurology, MD DSc FACP FRCP FLS, University of Glasgow Died peacefully at home, in Edinburgh on 31st August 2019, aged 84. Husband of the late Professor Wilhelmina Behan. Loving father to Charlotte, Miles and Edmund and devoted grandfather. Very dear friend to Dr Valerie Cairns. A service will be held at Warriston Crematorium, Lorimer Chapel, Edinburgh on Friday, 13th September at 1pm, to which all are welcome. Family flowers only. The Herald

Thursday, 5 September 2019

The Lord will be with you

http://bible.christiansunite.com/Faiths_Checkbook/faith0905.shtml

C H Spurgeon's Cheque Book Of The Bank Of Faith Daily Devotional for 5th September

“The Lord will be with you.”

2 Chronicles 20:17

This was a great mercy for Jehoshaphat, for a great multitude had come out against him; and it will be a great mercy for me, for I have great need, and I have no might or wisdom. If the Lord be with me, it matters little who may desert me. If the Lord be with me, I shall conquer in the battle of life, and the greater my trials the more glorious will be my victory. How can I be sure that the Lord is with me?

For certain He is with me if I am with Him. If I trust in His faithfulness, believe His words, and obey His commands, He is assuredly with me. If I am on Satan's side, God is against me and cannot be otherwise; but if I live to honor God, I may be sure that He will honor me.

I am quite sure that God is with me if Jesus is my sole and only Savior. If I have placed my soul in the hands of God's only-begotten Son, then I may be sure that the Father will put forth all His power to preserve me, that His Son may not be dishonored.

Oh, for faith to take hold upon the short but sweet text for today! O Lord, fulfill this word to Thy servant! Be with me in the house, in the street, in the field, in the shop, in company, and alone. Be Thou also with all Thy people.

Monday, 2 September 2019

Investigating sensory processing and cognitive function in people with ME: a pilot study

http://www.meresearch.org.uk/our-research/sensory-processing/

From the ME Research UK website –

Investigators
Dr Sanjay Kumar and Dr Farzaneh Yazdani

Institution
Oxford Brookes University, Oxford, UK

Start date
September 2019

Background and aim

Our senses are constantly being bombarded with information from our surroundings – the sights, sounds, sensations and smells around us, as well as the tastes in our mouths.

The brain has to work hard to process all this information simultaneously, and filter out what’s irrelevant so we can concentrate on what’s important at any given moment. But this ability can be impaired in people with certain clinical conditions, leading to a disabling hypersensitivity to the stimuli around them.

The resulting physical and mental overload can lead to poor coordination, dizziness, clumsiness, numbness, tingling and nausea, and may affect individuals’ ability to take in information and make decisions.

Dr Sanjay Kumar, Dr Farzaneh Yazdani and colleagues at Oxford Brookes University have previously looked at this phenomenon in people with post-concussion syndrome following head injury. And we recently awarded funding to the team to investigate the problem in ME/CFS.

Although hypersensitivity is not considered a primary factor in the diagnosis of ME/CFS, it is a common finding in people with the condition. This was borne out when the team met with people from a local ME support group, many of whom identified with the issue and said that it interfered with their daily life.

This prompted a series of investigations to understand the nature and impact of the sensory problems experienced by people with ME/CFS, and to determine whether they are associated with any functional or electrical changes in the brain.

The team aims to recruit 40 patients with ME/CFS and 40 healthy control subjects, and will begin their investigations by using a self-report questionnaire to assess patterns of sensory processing and how they affect functional performance.

The participants will then complete a series of neuropsychological tests (see below) to investigate a range of cognitive processes, followed by some simple computer-based tasks, while the electrical activity of the brain is measured non-invasively using electroencephalography.

The investigators’ hope is that the results of this preliminary work will help in our understanding of the brain mechanisms that underlie the abnormal sensory experiences of people with ME/CFS, and also lead to the development of interventions to help manage these problems.

Neuropsychological tests

Motor Screening Task – Participants are introduced to the format of the tests and responding via a touchscreen, and are asked to select on-screen crosses as they appear. Measures speed of response and accuracy, and tests for sensorimotor deficits or lack of comprehension.

Rapid Visual Information Processing – Assesses how well someone can keep attention on a task, in this case pressing an on-screen button when they see a predefined sequence of numbers (e.g. 2-4-6) within a random stream of numbers. Measures speed of responses and number of false alarms.

Delayed  Matching  to Sample – Assesses visual recognition and short-term visual memory by asking participants to match a pattern to one of four options shown below it. Measures speed of responses and number of correct patterns selected.

Stop Signal Task – Assesses how well someone can control their impulses. Participants are presented with an arrow and asked to press an on-screen button corresponding to whether it points left or right, but they must not respond if they also hear a beep. Measures reaction time and number of errors.