Friday, 22 May 2020

He led them forth by the right way

C H Spurgeon's Morning Devotional for 22nd May

"He led them forth by the right way."

Psalm 107:7

Changeful experience often leads the anxious believer to enquire "Why is it thus with me?" I looked for light, but lo, darkness came; for peace, but behold trouble. I said in my heart, my mountain standeth firm, I shall never be moved. Lord, thou dost hide Thy face, and I am troubled. It was but yesterday that I could read my title clear; to-day my evidences are bedimmed, and my hopes are clouded. Yesterday I could climb to Pisgah's top, and view the landscape o'er, and rejoice with confidence in my future inheritance; to-day, my spirit has no hopes, but many fears; no joys, but much distress. Is this part of God's plan with me? Can this be the way in which God would bring me to heaven? Yes, it is even so. The eclipse of your faith, the darkness of your mind, the fainting of your hope, all these things are but parts of God's method of making you ripe for the great inheritance upon which you shall soon enter. These trials are for the testing and strengthening of your faith-they are waves that wash you further upon the rock-they are winds which waft your ship the more swiftly towards the desired haven. According to David's words, so it might be said of you, "so He bringeth them to their desired haven." By honour and dishonour, by evil report and by good report, by plenty and by poverty, by joy and by distress, by persecution and by peace, by all these things is the life of your souls maintained, and by each of these are you helped on your way. Oh, think not, believer, that your sorrows are out of God's plan; they are necessary parts of it. "We must, through much tribulation, enter the kingdom." Learn, then, even to "count it all joy when ye fall into divers temptations."

"O let my trembling soul be still,
And wait Thy wise, Thy holy will!
I cannot, Lord, Thy purpose see,
Yet all is well since ruled by Thee."

Tuesday, 19 May 2020

European ME Coalition

Produced by Broken Battery

The European ME Coalition (EMEC) is an advocacy group for persons suffering from Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) in Europe. Our team consists of ME/CFS patients and carers who strive for high-quality scientific research so that one day an effective treatment for this debilitating illness can be found.

Learn more about our advocacy campaigns.

Support us by signing petition No 0204/2019 on a request for funding for biomedical research on Myalgic Encephalomyelitis.

Saturday, 9 May 2020

New Books – Good Choices, Bad Choices

Christian Focus Publications have just published two new books by my mother, Jean Stapleton. They are “Good Choices, Bad Choices” and “More Good Choices, Bad Choices” and are designed for children aged around 10 – 14 years of age.

The description given on the CFP website is as follows –

The Bible teaches us that God always does what He says He will do. It is a great comfort to know, that God’s plans and purposes are not changed by men and women who make wrong or foolish choices. In a way that we cannot understand, God rules over everything, so that His promises are always fulfilled. From the first wrong choice made by Adam and Eve throughout the Bible we meet many people who chose well or who made foolish decisions. This book will help you to focus on God’s Word and his wisdom guiding you in your own day to day choices.

The books can be purchased directly from CFP and are also available from other Christian book sellers such as 10 of those.

Saturday, 2 May 2020

Explaining ME/CFS? Prusty / Naviaux Study Ties Infections to Energy Breakdowns

by Cort Johnson

Unexpected synchronies are always a good sign. Many, of course, are familiar with Bob Naviaux, MD, PhD from the University of California, San Diego (UCSD). Naviaux’s metabolomic work and his Cell Danger Response (CDR) hypothesis have opened up new possible ways of understanding ME/CFS, autism and other diseases.

Bhupesh Prusty, PhD of the University of W├╝rzburg in Germany, is newer on the scene but has been raising eyebrows with his proposal that herpesviruses like HHV-6 (and other viruses as well) may be knocking the mitochondria in ME/CFS patients for a loop.

The two authors – Prusty and Naviaux were the co-senior authors who conceived the project –  teamed together to attempt to answer a question that’s been plaguing patients, doctors and researchers for years: how to tie together the energy problems in ME/CFS with the infectious onset that so many patients experience.  Coming from two separate fields, Bhupesh Prusty and Bob Naviaux may have come up with a way.

They chose, what else, herpesviruses (HHV-6, HHV-7) to test their hypothesis.

Herpes viruses form a large and diverse group.  Epstein-Barr virus (EBV), cytomegalovirus (CMV), and Herpes simplex viruses (HSV-1 and 2) have the ability to remain latent in the body and then explode into activity during times of stress or immunodeficiency. That has always made them a clear target in a disease largely defined by symptoms associated with infections.

The Human herpes viruses (HHV-6 and HHV-7) are a little different.  Over 90% of people are infected by 3 years of age, usually through their mother’s saliva.  The virus then leaves a copy of its DNA in a chromosome of a few cells, then becomes dormant.  For most people, we never know if HHV-6 is reactivated or not.

Prusty and Naviaux believe this is because when HHV-6 is reactivated, it triggers cells to produce a protective factor that helps prevent other cells from getting infected (superinfected) with other viruses.  This protective mechanism comes at a cost, though: mitochondrial fragmentation and a decrease in cellular energy production.

In people who don’t have ME/CFS, this phenomenon is normal and only lasts a few days at the beginning of a new infection or after exposure to certain environmental chemicals, or after physical injury.  However, in ME/CFS, they believe HHV-6 infected cells continue to secrete a substance which inhibits cellular energy production, leading to fatigue, and all the other symptoms of the disease.

The very low viral loads of HHV-6 found in past ME/CFS studies have suggested that active reinfection with the virus is not an issue. A 2019 HHV-6 antibody study that turned up mostly subtle issues didn’t inspire further interest, either. (That study, it should be noted, focused mostly on late antibodies which would miss the smoldering infection that some believe may be happening.)  Plus all HHV-6 serological studies to date suffer from the inability to differentiate between the more difficult to assess, and possibly more dangerous, HHV-6A and HHV-6B.

In 2018, though, Prusty, produced a controversial paper that roiled the HHV-6 research world. His cell line study suggested he’d identified very small non-coding RNA’s (sncRNA) produced by the virus in the earliest stages of reactivation, but before any virus replication occurred.  The production of this sncRNA produced a signal which altered mitochondrial activity in the infected cells and caused the mitochondria to fragment. The study suggested that HHV-6 might be powering down the energy motors of the cells even as it was sitting mostly quietly in the cell. It was as if the virus was putting the cells in stasis.

If Prusty was right, you could throw the viral load data in ME/CFS right out the window: HHV-6 didn’t need to be replicating to cause something like ME/CFS – it simply needed to be a little active.

Nobody in the HHV-6 field had come up with that idea before, but Bob Naviaux in San Diego had developed a similar paradigm which proposed that the cells of ME/CFS patients had responded to infections and other stressors by getting stuck in a hypometabolic state (aka a state of hibernation or dauer, the German word for persistence).

Naviaux proposed that the stricken cells used what he called a “cell danger response” to power down their motors and redirect all energy toward cellular defense and survival, at the cost, though, of not having enough energy left over for normal cellular activity and function.

The metabolic system, in particular the mitochondria, he believed, were working hand in hand to repel invaders. In fact, in Naviaux’s paradigm, it was the metabolic or energy producing system that alerted the immune system to trouble, not the other way around.

A 2015 Nature article, which has been cited over 500 times, agreed. The study found that it only took moderate mitochondrial stress to send the cell’s antiviral defenses skyrocketing. It suggested the first goal of a pathogen was to damage, knock off, or disrupt the mitochondria of the cell it infected. Once the signs of mitochondrial damage presented themselves, however, the cell – now knowing that a pathogen was present – turned on its antiviral batteries.

Just last year, a French team showed that bacteria attempt to quickly knock out the engines powering immune cells as well. The cellular immune defense, it seems, starts with the mitochondria.

To read the rest of the article, please go to –

Friday, 1 May 2020

Oxford Health leaflet – a United Response

Leading ME charities, including ME Research UK, have joined in a Physios for ME led initiative which includes the All-Party Parliamentary Group on ME, the Forward-ME Group and other notable signatories in a united response to Oxford Health NHS Foundation Trust’s leaflet entitled ‘Coping with the Coronavirus‘.

Oxford Health NHS Foundation Trust offers both an NHS community-based service for people in Oxfordshire with CFS/ME and also a Chronic Fatigue (CFS/ME) Service.

The publication is one a series prepared by the Psychosocial Response Group in the context of Coronavirus and mental health. However, immediately it focuses upon the possible longer-term effects of the virus and elaborates the theme over a number of pages linking specifically to CFS and ME –

Some people may go on to develop Chronic Fatigue Syndrome (CFS), sometimes also called Myalgic Encephalitis (ME), which is a condition which affects people in different ways. The main symptom is persistent fatigue (tiredness) and exhaustion which can be severe and disabling.

 Anyone can be affected by CFS, but there may be common themes for those with persistent problems. We know that there are both helpful and unhelpful ways to manage symptoms following a virus:
* Resting too much, for example spending most of the day in bed or doing very little, will lead to loss of fitness and muscle strength. When you then try to resume normal activities, you may find that you cannot do as much as you expect to do, and then rest more, causing further loss of fitness in a vicious cycle.
* Sleeping for hours during the day can lead to general malaise and problems sleeping at night. This in turn leads to more daytime fatigue and more resting, which in turn leads to more problems sleeping at night.
* Not allowing yourself time to recuperate and get better, such as going back to work too soon or resuming normal activities before you are fully well. People who have very high standards, like to do things well and do not like to let other people down, can push themselves very hard and do not allow themselves time to rest.

Three main ways you can improve the management of chronic fatigue are:
Pacing, and activity management
Graded exercise

In reply, the signatories, representing a broad sweep of charities, groups and informed individuals rebutted the most egregious assertions in the leaflet and the letter begins

Opposition to Oxford Health NHS Foundation Trust: “Coping with Coronavirus: Fatigue”

We, the undersigned, request immediate withdrawal of the Oxford Health NHS Foundation Trust leaflet “Coping with Coronavirus: Fatigue” for the following reasons;
The leaflet conflates post viral fatigue with myalgic encephalomyelitis (“ME”)
The leaflet purports to provide information for post-COVID-19 rehabilitation but is predominantly comprised of rehabilitation advice for ME/CFS
The information provided is incorrect or misleading.
The advice provided is potentially detrimental to patients and may result in deterioration and exacerbation of disability.

An e-mail copy of the letter was sent to Stuart Bell, Chief Executive of Oxford Health NHS Foundation Trust, and, in copy to Professor Chris Whitty – Chief Medical Officer for England, earlier today (20th April).

The full text of the letter signed by 24 representatives and individuals includes detailed rebuttals with citations to relevant studies, reports etc. is available in full here .