Monday, 17 July 2017

Knowing, brethren beloved, your election of God


C H Spurgeon's Morning Devotional for 17th July

“Knowing, brethren beloved, your election of God.”

1 Thessalonians 1:4

Many persons want to know their election before they look to Christ, but they cannot learn it thus, it is only to be discovered by "looking unto Jesus." If you desire to ascertain your own election;-after the following manner, shall you assure your heart before God. Do you feel yourself to be a lost, guilty sinner? go straightway to the cross of Christ, and tell Jesus so, and tell Him that you have read in the Bible, "Him that cometh unto me, I will in no wise cast out." Tell Him that He has said, "This is a faithful saying, and worthy of all acceptation, that Christ Jesus came into the world to save sinners." Look to Jesus and believe on Him, and you shall make proof of your election directly, for so surely as thou believest, thou art elect. If you will give yourself wholly up to Christ and trust Him, then you are one of God's chosen ones; but if you stop and say, "I want to know first whether I am elect," you ask you know not what. Go to Jesus, be you never so guilty, just as you are. Leave all curious inquiry about election alone. Go straight to Christ and hide in His wounds, and you shall know your election. The assurance of the Holy Spirit shall be given to you, so that you shall be able to say, "I know whom I have believed, and I am persuaded that he is able to keep that which I have committed to Him." Christ was at the everlasting council: He can tell you whether you were chosen or not; but you cannot find it out in any other way. Go and put your trust in Him, and His answer will be-"I have loved thee with an everlasting love, therefore with lovingkindness have I drawn thee." There will be no doubt about His having chosen you, when you have chosen Him.

"Sons we are through God's election,
Who in Jesus Christ believe."

Thursday, 13 July 2017

CDC removes CBT and GET as recommended treatments for ME/CFS


In America, the Centers for Disease Control and Prevention (CDC) has updated its website information for ME/CFS, improving diagnostic criteria and removing previous recommended treatments – CBT and GET.

While it seems that we must wait to see if this new information is reflected in updated guidance for medical professionals, it is nonetheless being heralded as an important development.

Yesterday, in the UK, NICE published its consultation document which confirmed the recommendation to take no action with regards to the current guideline.

The ME Association is protesting this decision and is currently considering its written response as a stakeholder in the consultation process.

We feel there are many aspects of the current guideline that warrant review including the continued recommendation of CBT and GET.

The ME Association’s online petition ‘The NICE guideline for CFS/ME is not fit for purpose and needs a complete revision‘, has attracted over 4,000 supporters in less than 24 hours. 

It will close on Monday 17th July at 5pm, when we will present it to the review committee for delivery to Sir Andrew Dillon (chief executive, NICE guidance executive).

David Tuller in his latest blog, Trial By Error: The CDC Drops CBT/GET, explains in more detail what has happened at the CDC and why this may herald an important and fundamental change for ME/CFS.

We have selected pertinent extracts from his blog, and reproduced them below:

“Just as The Lancet has published more “evidence” for graded exercise, the CDC has moved decisively in the opposite direction. In revamping the information on the part of its website geared toward the general public, the agency has “disappeared” all mention of CBT and GET as treatment or management strategies. Patients and advocates have long pushed for this step, as did Julie Rehmeyer and I in a New York Times opinion piece in March. Although the revised text is dated as having been reviewed on May 30th, it apparently went live sometime during the first week of July. (The CDC has still not revised the pages designed for health care providers, although old information has been removed. The agency calls the illness ME/CFS.)”

“For advocates, the CDC’s removal of the CBT/GET recommendations represents a major victory. “I think it’s huge,” said Mary Dimmock, an advocate who has long pressured the CDC to revise its website. Given the agency’s stature, she added, the decision could have widespread impact, not just in the U.S. but internationally as well. Many health care providers and institutions here and abroad look to the CDC for guidance in public health matters.”

“So many patients have been made worse by the treatments,” said Dimmock, who became an advocate after her son became seriously ill several years ago. “While there is more to be done, removing these recommendations is a significant step forward in protecting ME patients from harm.”

“In the revision, the CDC website has dropped the agency’s 1994 definition of the illness. The new definition, based on the one proposed in a 2015 report from the Institute of Medicine (now the Academy of Medicine), requires the presence of “post-exertional malaise.” In the 1994 definition, that was only one of eight optional symptoms. The immediate implication of the shift is that GET should likely be considered contraindicated, given the premium this intervention places on steadily boosting activity levels. The form of CBT prescribed in PACE could also be contraindicated, since the ultimate goal of that intervention is likewise to increase activity. (The CDC has not adopted the name proposed by the IOM report, “systemic exertion intolerance disease.”)”

“In addition to symptomatic relief, the revised CDC website suggests such management strategies as a balanced diet, nutritional supplements and complementary medicine.”

“Of course, avoiding “push-and-crash” is what patients already do when they practice pacing. The “push-and-crash” language itself appears to be closely aligned with the arguments provided by the PACE investigators and their colleagues; many patients might describe their experiences differently. Nevertheless, removing the CBT/GET recommendations is a welcome step, if overdue. For years, patients and advocates pointed out the problems with PACE and related research, and also cited the evidence that too much exertion caused harm because of physiological abnormalities, not the deconditioning presumed by CBT and GET. But until now, the agency refused to make the necessary changes.”

“The CDC has another urgent obligation: To communicate with the U.K.’s National Institute for Health and Care Excellence, which develops clinical guidelines for various medical conditions. NICE is currently debating whether or not its recommendations for the illness—which it calls CFS/ME–need to be reviewed; of course, these recommendations include CBT and GET as indicated treatments. NICE is soliciting input this month from stakeholders, but the expert panel assessing the situation has apparently made a provisional decision that no review is required.”

“The CDC has a long history of collaborating with key members of the PACE team and others in the U.K. medical and public health establishments; it is not surprising that prescribing CBT and/or GET should have become standards of care in both countries. It is now incumbent on U.S. public health officials to alert their British colleagues, including those at NICE, that they have just abandoned these longstanding recommendations. They should also explain why they have taken that major step, and why NICE should consider doing the same. (More on the NICE guidelines later this week.)”

David’s latest blog can be read in full, here.

Monday, 3 July 2017

THE SMILE TRIAL (part 1) – Author: johnthejack

Why the trial should never have been allowed in the first place.


There is no evidence the Lightning Process (LP), a mish-mash of elements of cognitive behavioural therapy, neurolinguistic programming, hypnotherapy, life coaching and osteopathy, is anything other than quackery. For decades Phil Parker has made claims for its efficacy, including as a treatment for myalgic encephalomyelitis (ME), but no proper trial has ever supported these claims.

The Advertising Standards Authority (ASA) guidance is clear:
To date, neither the ASA nor CAP has seen robust evidence for the health benefits of LP. Advertisers should take care not to make implied claims about the health benefits of the three-day course and must not refer to conditions for which medical supervision should be sought.

There are people who claim to have been helped, of course, but such claims are made for all bogus therapies. It seems that some people are simply amenable to these interventions. In addition, perhaps there are those who have become stuck in a rut, experiencing a generic chronic fatigue, believing themselves to have ME, and who are helped to kickstart their lives again by the LP. Since there is no biomarker for ME, diagnosis of the illness can be difficult: 40% of patients in an ME clinic may not actually have ME.

There is currently no treatment for ME, so it is understandable that some patients would be easy prey for and would seek more information about interventions hawked about with exaggerated claims.

Parents of children with ME were apparently contacting the charity Association of Young People with ME (AYME) (1) and asking whether it was worth trying the LP. Bewilderingly, Esther Crawley, a Bristol paediatrician and then medical adviser to AYME, instead of telling patients and parents that the LP had no scientific basis and was not worth the considerable amount of money it costs, decided to do a trial. Just as bewilderingly, the SMILE trial received funding and ethical clearance.

First, this trial should never have been allowed. Good science is not just about evidence, but about plausibility, so any such trial immediately gives a spurious credibility to the LP. Asking a question, even sceptically, can offer an implicit endorsement of its premises.

Second, it was the first study of any kind to use the Lightning Process, and it was doing so with children. There had been no opportunity to measure harms: there have been reports of patients who do not respond to the LP who then blame themselves and in desperation contemplate killing themselves. Exposing vulnerable adolescents to such a potential risk would seem particularly irresponsible.

Third, LP patients are made to accept a number of onerous conditions (such as taking responsibility for their illness) before taking the course. It is ethically questionable to ask trial participants to agree to such conditions in order to take part in a trial of a possible treatment for their illness. Making these demands of children would seem even more ethically dubious.

Fourth, patients are told to ignore their symptoms and to resume normal activity (from SMILE study):
‘It has been a bit confusing, I have to say, because obviously we have got the [Lightning Process practitioners] approach, where, “Right, finally, done this, now you don’t need to do the pacing; you can just go back to school full time.” I think, the physical side of things, YP9 has had to build herself up more rather than just suddenly go back and do that’.

Research, backed up by patient surveys, shows the harms caused by exertion in patients with ME (see Kindlon). The recent report to the US Institute of Medicine found post-exertional malaise to be so central to the illness that it suggested a new name: systemic exertion intolerance disease or SEID. Even in disputed clinical trials such as PACE which use graded exercise therapy, patients are monitored by physiotherapists and nurses and plan a gradual increase in activity. Here service providers with no professional qualifications simply tell child patients that after three sessions in three days they should return to normal activity. It is deeply irresponsible.

Fifth, to anyone with genuine ME, that is ME as defined by the International Consensus Criteria, the Lightning Process is a form of torture. It is a physical torture simply to complete the course, again from the SMILE study:
In addition to specialist medical care, children and their parents in this arm were asked to read information about the Lightning Process on the internet. They then followed the usual LP procedure (reading the introductory LP book or listening to it in CD form) and completing an assessment form to identify goals and describe what was learnt from the book. On receiving completed forms, an LP practitioner telephoned the children to check whether they were ready to attend an LP course. The courses were run with two to four children over three sessions (each 3 hours 45 minutes) on three consecutive days.

That is a very heavy burden. The homework is taxing enough but then to undergo 3 sessions of almost 4 hours each on 3 consecutive days is immense. The effort, the intensity and the busyness, would be punishment to anyone hypersensitized by the illness.

It is also a form of emotional torture as fundamental to the process is that patients take responsibility for their health, their illness and their recovery, from here, here,  here and here:
LP trains individuals to recognize when they are stimulating or triggering unhelpful physiological responses and to avoid these, using a set of standardized questions, new language patterns and physical movements with the aim of improving a more appropriate response to situations.

* Learn about the detailed science and research behind the Lightning Process and how it can help you resolve your issues

* Start your training in recognising when you’re using your body, nervous system and specific language patterns in a damaging way

What if you could learn to reset your body’s health systems back to normal by using the well researched connection that exists between the brain and body?

the Lightning Process does this by teaching you how to spot when the PER is happening and how you can calm this response down, allowing your body to re-balance itself.

The Lightning Process will teach you how to use Neuroplasticity to break out of any destructive unconscious patterns that are keeping you stuck, and learn to use new, life and health enhancing ones instead.

The Lightning Process is a training programme which has had huge success with people who want to improve their health and wellbeing.

This responsibility is an enduring one: patients must continue to apply the training to their lives after their course and accept that improvement in their health lies entirely within themselves.

To take chronically ill patients, who want only to get better, and spend three days attempting to brainwash them into believing their illness and recovery lie within their control is deeply unethical. Adult patients in the days after enduring this nonsense, blaming themselves for lack of improvement, have been left in such depths of despair as to want to take their own life. To expose chronically ill adolescents to such a danger was extraordinarily irresponsible.

Of course, with the broad criteria and the self-selection involved in determining who took part in the trial, it may well be that not a single participant actually had ME but had instead simply ‘chronic fatigue’. That would be even worse, though: the results may show that the LP has some effect with ‘chronic fatigue’ but would be used to claim effectiveness for patients with ME. Many children who genuinely do have ME could be gulled into paying for this nonsense only, potentially, to do themselves considerable harm.

This trial was unnecessary, gave spurious credibility to quackery and was unethical. It was also very poorly conducted, as will be shown in part 2.

1. AYME has now ceased trading and its role has effectively been taken over by Action for ME 

Saturday, 1 July 2017

Looking back with ME

Looking back with ME – Living for a quarter of a century with the neuroimmume disorder ME (Myalgic Encephalomyelitis). 

Published by Day One Publications – click here for further details or contact -

Day One Publications, 
Ryelands Road, 
Leominster, 
HR6 8NZ

Phone: 01568 613 740   
Email: sales@dayone.co.uk

Also on Amazon at http://amzn.eu/hzuH9Yo

I appreciated reading Hazel’s witness to the Lord’s grace in saving her, and all His subsequent dealings, which comes over very well and much to His glory. I trust the information given about ME may open the eyes of people to take this condition seriously, especially the medical profession.
Rev. John Thackway, Pastor, Holywell Evangelical Church

It was most moving to read of the way the Lord has led Hazel these past years, and I was richly blessed by her regular reminders that God is sovereign in every detail of our lives.
Derek French, Elder, Hanney Chapel near Wantage

This book documents Hazel’s life both before and since her illness. No, it isn’t cheerful to read about a chronic illness and some of the difficulties both with diagnosis and in terms of management of the condition. Yet Hazel is a Christian and is clear that she has a hope greater than this life. Of course, this book is of relevance to people with ME, but it is also relevant to those of us who have been given many years of good health. It is easy to moan and forget to be thankful for this gift. It is encouraging to be reminded of the Lord and His promises.
Sarah Jones, former consultant physician, London

Saturday, 24 June 2017

#MillionsMissing Sacramento Rally

From the Open Medicine Foundation website:


Below are the greetings read at the #MillionsMissing Rally on June 2nd behalf of Janet Dafoe.

I send my greetings to everyone!I wish I could be there with you. My husband, Ron Davis, and daughter, Ashley Haugen, are in London at the Invest in ME International Research Conference, so I must stay home with our son, who is severely ill and bedridden with CFS and can’t speak, talk, move, or eat. We can’t ever all go anywhere together. This highlights that this horrid disease affects much more than just the patient! Caregivers, family members, friends, everyone who knows and loves the patient is very significantly affected. Sad, desperate, despondent. And this has been going on for over 40 years for millions of Americans and people all over the world! It’s so unbelievable that such ill people could be ignored, not believed, and left alone with few resources and no help from medicine or our government! I often feel like I’m in some kind of surreal horror movie. I look at my beautiful, gentle, creative, amazing son, who could be contributing so much to the world, and who desperately wants to, and then I think of my brilliant scientist husband who has the ability to figure out this disease, and then I realize that neither our government, nor many other sources of funds have stepped up to make sure that this disease is figured out and dealt with, just like other diseases that affect our citizens. It’s astounding, it’s unbelievable, and it’s absolutely not ok.  I know NIH has increased commitment to help. However, I strongly believe that it is NOT ENOUGH. We have the ability to figure this out and ease the suffering of all these people and we could do it in a few years WITH ENOUGH RESOURCES! Ron always tells me, he and his team need $5 million dollars for 5 years to find the answers. I believe him! I have watched this amazing man do collaborative interdisciplinary science solving “unsolvable” problems for over 40 years. He can to it, with the team of fabulous scientists that he is able to gather. Why is this not happening as fast as it can? If people could personally connect with the suffering, I believe it could happen faster. We must all do all we can to show the government and the world the extent of the suffering! Send photos, Don’t be shy! Bring photos and recent science papers everywhere you go! We can speed this up together! I look forward to working with you till we get answers and my baby can come back to me!

Tuesday, 20 June 2017

David Tuller: The last ten days of my campaign...


The response from the community to my campaign has been incredible--beyond what I imagined when I launched it a few weeks ago. I’ve been enormously touched and heartened by the donations and comments. I certainly didn’t think I would have to consider what I’d do if I over-shot my goal of $60,000. But yesterday the donations passed $55,000, and that has triggered Erica Verillo’s amazingly generous $5000 matching contribution. I’ve now secured my half-time position for the next 12 months, with 10 days more to go in this campaign. So I need to explain why I hope people continue to donate.

PACE-busting is a big, big job! Basically, more donations will allow me to do more. Over the last year or so, I’ve been asked by many people in many countries—Australia as well as across Europe, in addition to the U.K.--to visit and expose the harms caused by their own domestic PACE/CBT/GET ideological brigades. Since February of 2016, I’ve gone to the UK four times and once to the Netherlands, for research and interviews as well as talks in Amsterdam, Belfast and London. I have travelled as cheaply as possible, crashing with friends and sometimes staying in hostels--I haven’t noticed many others of my advanced age in these dormitory rooms! But the costs have still added up.

In the next 12 months, I hope to go to Australia, because the situation there is awful, and take at least two more times to the U.K. and hopefully to one or more of the other European countries suffering under this terrible burden. In addition to conducting research and interviews, I will seek to arrange talks to both patient groups and professional/academic audiences; these talks, I have seen, are an important means of spreading awareness of what’s gone on. I will budget up to $10,000 for travel—about half for Australia, and the other half for Europe. Any additional funds will be used to extend my Berkeley appointment proportionally beyond next June 30th--for a month, two months, or whatever.

Before the end of the campaign, I am hoping to post another couple of blogs. One is about an 87-year-old retired GP who was patient #234 in the Royal Free outbreak. The second is about an issue I have tip-toed around and finally raised in my Invest in ME talk: Is PACE a case of scientific misconduct? (It’s probably not hard to figure out what my answer will be.)

What else will I be working on over the next year? I plan to smack down the recent Cochrane review, which was able to conclude that GET worked only because of the egregious decision to include PACE and other Oxford criteria studies. I plan to look at the challenges people face in obtaining desperately needed help from government agencies and insurance companies. I plan to examine the PACE investigators’ conflicts of interests, including their intervention in specific cases in which patients have sought benefits. I want to track down other surviving patients from the Royal Free outbreak, and to deconstruct the 1970 paper that reinterpreted that that seminal event as a case of mass hysteria. And so on.

I certainly have my work cut out for me! Even though I have reached my initial ambitious fund-raising goal, every additional contribution will be put towards a single purpose--helping me bust the false PACE/CBT/GET paradigm for good.

Tuesday, 13 June 2017

Whosoever will, let him take the water of life freely


C H Spurgeon's Morning Devotional for 13th June

"Whosoever will, let him take the water of life freely."

Revelation 22:17

Jesus says, "take freely." He wants no payment or preparation. He seeks no recommendation from our virtuous emotions. If you have no good feelings, if you be but willing, you are invited; therefore come! You have no belief and no repentance,-come to Him, and He will give them to you. Come just as you are, and take "Freely," without money and without price. He gives Himself to needy ones. The drinking fountains at the corners of our streets are valuable institutions; and we can hardly imagine any one so foolish as to feel for his purse, when he stands before one of them, and to cry, "I cannot drink because I have not five pounds in my pocket." However poor the man is, there is the fountain, and just as he is he may drink of it. Thirsty passengers, as they go by, whether they are dressed in fustian or in broadcloth, do not look for any warrant for drinking; its being there is their warrant for taking its water freely. The liberality of some good friends has put the refreshing crystal there and we take it, and ask no questions. Perhaps the only persons who need go thirsty through the street where there is a drinking fountain, are the fine ladies and gentlemen who are in their carriages. They are very thirsty, but cannot think of being so vulgar as to get out to drink. It would demean them, they think, to drink at a common drinking fountain: so they ride by with parched lips. Oh, how many there are who are rich in their own good works and cannot therefore come to Christ! "I will not be saved," they say, "in the same way as the harlot or the swearer." What! go to heaven in the same way as a chimney sweep. Is there no pathway to glory but the path which led the thief there? I will not be saved that way. Such proud boasters must remain without the living water; but, "WHOSOEVER WILL, LET HIM TAKE THE WATER OF LIFE FREELY."


Monday, 5 June 2017

Good News for ME patients in Northern Ireland

From the Hope 4 ME and Fibro Northern Ireland Facebook announcements page, posted on June 1 


We have some very important news to share, with permission from the Health and Social Care Board Lead Commissioner for ME and fibromyalgia, Mr. Iain DeBoys.

Dr. Ian Clements, Chairperson of the Health and Social Care Board has confirmed, ALL 365 General Practitioner (GP) practises in Northern Ireland will receive new updated informative on ME and fibromyalgia, including biomedical research, confirming the very physical nature of the diseases. This decision was agreed, by DOH officials attending the Stormont conference, immediately after the speaker's presentations! 

Further, more detailed information, will be posted as soon as possible, when confirmed.

We expect this breakthrough to happen within a maximum of 8 weeks after further negotiations with the commissioners and Public Health Agency.

Hope 4 ME & Fibro Northern Ireland, has been bringing world experts and researchers from around the world to N.I. since 2011 to educate decision makers, effectly, it has taken six years to bring us to this welcome and much needed move by the Department of Health.

We can again thank this year's speakers at our Seeking Solutions for ME and Fibromyalgia' conference, 

Professor Mella, Linda Tannenbaum, David Tuller and Dr. W. Weir, Dr. Christine McMaster and the others before them. 

Previous educational conference speakers have included Professor Mark VanNess, Dr. Derek Enlander, Dr.Judy Mikovits, Dr. Vance Spence (MERUK) Dr. Gregor Purdie and Dr.Charles Shepherd (MEA), Dr. Pamela Bell, Louise Skelly (P&CC) and Dr. Joe McVeigh, who have presented educational information and groundbreaking research to the heart of our government and healthcare decision makers in Northern Ireland. 

Thanks too to Invest in ME and the Irish ME Trust who have helped and supported our efforts in bringing international experts to Northern Ireland.

A more detailed report is being complied on the speaker's presentations at our recent 'Seeking Solutions for ME and Fibromyalgia' educational event, held in Stormont government headquarters, Belfast, 30/5/2017. 

(A short summary of the conference can be found at –

Thursday, 1 June 2017

12th Invest in ME International ME Conference 2017


This annual international, CPD accredited research conference provides a platform for the latest and most promising biomedical research into ME. IIMEC12 will be the twelfth conference and has attracted researchers, clinicians, doctors, nurses, occupational therapists, healthcare professionals and patient groups twenty countries from around the world.

The conference is a full day event on Friday 2nd June from 09.00 to 17.30.

The agenda for the day can be found by clicking here.

Speakers for the conference include –

Dr Ian Gibson, Former Dean of Biological Sciences, University of East Anglia

Prof Ian Charles, Director of Institute of Food Research, Norwich, UK

Dr Vicky Whittemore, National Institutes of Health, USA

Professor Sonya Marshall-Gradisnik and Professor Donald Staines, Griffiths University, Australia

Professor Nancy Klimas, Director, Institute for Neuro Immune Medicine, Nova Southeastern University, Miami, USA

Dr Jakob Theorell, Department of Medicine, Karolinska Institutet, Stockholm, Sweden

Dr Jo Cambridge, Principal Research Fellow Inflammation, Div of Medicine Faculty of Medical Sciences, UCL, UK

Professor Simon Carding, Professor of Mucosal Immunology at UEA-MED and leader of the Gut Biology Research Programme, Norwich, UK

Associate Professor Mady Hornig, Center for Infection and Immunity (CII), Columbia University Mailman School of Public Health New York, USA

Professor Olav Mella, Haukeland University Hospital, Bergen, Norway

Dr Øystein Fluge, Department of Clinical Science, Haukeland University Hospital, Bergen, Norway

Professor Warren Tate, University of Otago in New Zealand

Professor Ron Davis, Director Stanford Genome Technology Center, Palo Alto, California, USA

Happily, for those of us unable to attend, the talks will be recorded and available to purchase on DVDs.

Tuesday, 23 May 2017

Mum's New Books



I am pleased to say that Christian Focus Publications (CFP) have published two more books written by my mother, Jean Stapleton. 


"Boys Just Like Me - Bible Men who Trusted God" and "Girls Just Like You - Bible Women who Trusted God" have been produced as small, padded, hardback giftbooks for children and each contain 50 short accounts of men or women in the Bible who trusted God. According to the CFP site, both books are suitable for children aged 6 - 10 to read by themselves, or for 3 - 5 year olds to have them read to them - although we think age 3 is a little optimistic! The books are designed to help children get to know more about people in the Bible and, as a result, about the Bible as a whole and the God Who these people put their trust in, and who He used in many different ways. 

To see all four books that Mum has now had published by CFP, please click here.


Saturday, 20 May 2017

For children with ME, school education can be a grave threat


By Lesley Scott of the TYMES Trust

Lesley Scott explains why the Scottish Government presumption that attending school is always best can affect the health of children with ME

In this ME Awareness week, the Scottish Parliament held a members’ debate to highlight this much misunderstood and ignored illness. Gail Ross MSP lodged the motion and opened the debate citing over 21,000 adults and children in Scotland as suffering from this illness but added that we have no idea of the numbers who are undiagnosed or misdiagnosed. Demonstrations will take place in 25 global cities world-wide this week under the slogan Millions Missing to highlight the millions of people across the world who are missing out on normal lives with displays of shoes representing the 25% severely affected.

For children and young people with this illness, insistence on school attendance as required through the Scottish national framework GIRFEC (Getting it Right for Every Child), can impede recovery and is a key cause of deterioration and relapse often to a greater severity. Many children miss out completely on education when, with a more appropriate response, they could have maintained education and recovered their health more quickly. For children with ME, what is known as energy efficient education, such as home education, home tuition, distance or virtual learning, can maximise achievement whilst protecting health.

Education provision needs to fit the child, not the other way around.

Amid the revelation this week of declining standards of literacy and numeracy amongst Scottish children and young people, John Swinney, cabinet secretary for education, told parliament that the “statistics need to improve”. 

GIRFEC, the literature tells us, “begins with good attendance at school” with those who fail to attend being highlighted as not meeting their wellbeing outcomes. One family were reported to child protection services by their son’s Named Person because of his prolonged absences from school due to a rare chronic immune system disease. The mother stated that “the council do not have policies for chronic illnesses in schools and force ill children to attend full-time whatever the cost to their health.”

Education is the legal responsibility of parents. Government, be it local or national, is there to offer a service to help parents meet that responsibility. The government role is not to target families for state interference when they do not fit the current mould.

Those children and young people with the potentially chronic and severe neurological condition ME, formerly known as Atypical Polio, and their families are only too familiar with such a scenario. ME causes more long-term sickness absence from school than any other illness – in children and staff alike. It affects the brain and thinking processes as well as the rest of the body. The Institute of Medicine recognise “that exertion of any sort – physical, cognitive, emotional – can adversely affect these patients in many organ systems and in many aspects of their lives.”

For children and young people with ME, getting an education has become a very grave threat to their health and their future. In order for them to be given any chance of sustainable and appropriate education provision it must be accepted that children with ME need to be missing from school.

Lesley Scott is Scottish officer for the Young ME Sufferers (Tymes) Trust


Friday, 12 May 2017

The Ambiguous Term “ME/CFS” Has Become a Problem for Research

12th May is ME Awareness Day

The Ambiguous Term “ME/CFS” Has Become a Problem for Research


JERROLD SPINHIRNE - WEDNESDAY, 10 MAY 2017

For International Awareness Day, May 12, 2017

Increasingly, researchers, doctors, advocates, and patients are using the mixed term “ME/CFS” as if it had some clear, specific meaning and referred to some identifiable disease. In actuality however, the mixed term “ME/CFS” is ambiguous, logically incoherent, and a major impediment for making progress in research of the neurological disease myalgic encephalomyelitis, ME, ICD G93.3. 

Additionally, patients diagnosed with chronic fatigue syndrome, CFS, and not meeting the more specific diagnostic criteria for ME, are also adversely affected by the use of the mixed “ME/CFS” term in research. Non-ME CFS while combined with ME under a single term cannot rationally be researched to identify other coherent patient groups, which could then be renamed and removed from the more encompassing CFS group. This rational strategy for resolving the current impasse in research was called for in the 2011 ME International Consensus Criteria paper, published in the Journal of Internal Medicine, and the 2012 International Consensus Primer, based on the ME-ICC. 

The IC Primer states:

The purpose of diagnosis is to provide clarity. The criterial symptoms, such as the distinctive abnormal responses to exertion can differentiate ME patients from those who are depressed or have other fatiguing conditions. Not only is it common sense to extricate ME patients from the assortment of conditions assembled under the CFS umbrella, it is compliant with the WHO classification rule that a disease cannot be classified under more than one rubric. The panel is not dismissing the broad components of fatiguing illnesses, but rather the ICC are a refinement of patient stratification. As other identifiable patient sets are identified and supported by research, they would then be removed from the broad CFS/CF category.”

The 2011 ME-ICC: 

The 2012 IC Primer: 

Patients can use this convenient guide, prepared by the MEadvocacy organization, to determine if they meet the ICC criteria for ME. 

Understanding the problems created by combining the two disparate terms ME and CFS together as a single mixed diagnosis “ME/CFS” requires an understanding of how the two terms originated.

Myalgic Encephalomyelitis

The term “encephalomyelitis” was used in a 1956 paper by Dr. A. Melvin Ramsay describing an outbreak of infectious disease at the London Royal Free Hospital in 1955, “Encephalomyelitis simulating poliomyelitis,” published in the Lancet. In the same May 26, 1956 issue of the Lancet, an editorial attributed to Dr. E.D. Acheson suggested use of the name “benign myalgic encephalomyelitis.”

The objections to any but a purely descriptive name for a disorder without a known cause or established pathology are obvious. For this reason, the term "benign myalgic encephalomyelitis" may be acceptable. It in no way prejudices the argument for or against a single or related group of causal agents; and it does describe some of the striking features of a syndrome characterized by (1) symptoms and signs of damage to the brain and spinal chord, in a greater or lesser degree; (2) protracted muscle pain with paresis [partial paralysis, muscle weakness] and cramp; (3) emotional disturbances in convalescence; (4) normal C.S.F.; (5) involvement, in some variants, of the reticuloendothelial system [part of the immune response system]; (6) a protracted course with relapses in severe cases; and (7) a relatively benign [death was not immediate] outcome. It remains to identify this syndrome more precisely; but we believe its characteristics are now sufficiently clear to differentiate it from poliomyelitis, epidemic myalgia, glandular fever, the forms of epidemic encephalitis already described, and, need it be said, hysteria.”  

It is important to note that fatigue of any kind is NOT mentioned in this early description of ME, based on the systematic clinical observation of patients with related symptoms identified during outbreaks of disease.

Acheson, writing later in a 1959 paper based on clinical observations made during 14 related outbreaks of disease, again did not mention fatigue of any kind as a commonly observed or diagnostically useful symptom:

"All the outbreaks shared the following characteristics: (1) headache; (2) myalgia; (3) paresis [muscle weakness, partial paralysis]; (4) symptoms or signs other than paresis suggestive of damage to the brain, spinal cord or peripheral nerves; (5) mental symptoms; (6) low or absent fever in most cases; (7) no mortality. In addition, (1) a higher attack frequency in women; (2) a predominantly normal cerebrospinal fluid, and (3) relapses have occurred in almost all outbreaks. In eleven of the fourteen epidemics symptoms which suggest activity of the disease have persisted for months or years in a few cases, and in eight instances there was an apparent predilection for the nursing or medical professions. Lymphadenopathy was a feature in four outbreaks.

Neither does Dr. Melvin Ramsay in his 1986 case definition of ME mention fatigue of any kind:

A syndrome initiated by a virus infection, commonly in the form of a respiratory or gastrointestinal illness with significant headache, malaise and dizziness sometimes accompanied by lymphadenopathy or rash. Insidious or more dramatic onsets following neurological, cardiac or endocrine disability are also recognised. Characteristic features include:

(1) A multisystem disease, primarily neurological with variable involvement of liver, cardiac and skeletal muscle, lymphoid and endocrine organs.

(2) Neurological disturbance – an unpredictable state of central nervous system exhaustion following mental or physical exertion which may be delayed and require several days for recovery; an unique neuro-endocrine profile which differs from depression in that the hypothalamic/pituitary/adrenal response to stress is deficient; dysfunction of the autonomic and sensory nervous systems; cognitive problems.

(3) Musculo-skeletal dysfunction in a proportion of patients (related to sensory disturbance or to the late metabolic and auto immune effects of infection)

(4) A characteristically chronic relapsing course." 

In the last paper published by Ramsay in 1990, and with Dr. Elizabeth Dowsett, this was the ME research case definition they used:

"We adopted the following clinical criteria for investigation of ME: a syndrome commonly initiated by respiratory and/or gastro-intestinal infection but an insidious or more dramatic onset following neurological, cardiac or endocrine disability occurs. The pathognomonic features are: a complaint of general or local muscular fatigue following minimal exertion with prolonged recovery time; neurological disturbance, especially of cognitive, autonomic and sensory functions; variable involvement of cardiac and other systems; a prolonged relapsing course."

The symptom of post-exertional muscle fatigue used here is very different from the symptom of perceived general fatigue, the subjective feeling of tiredness, that is used as the basis for making a CFS diagnosis. Muscle fatigue can be objectively measured. Perceived, general fatigue can only be evaluated by psychometric questionnaires – an important distinction. 

People with ME may experience episodes of profound fatigue, but many people with ME do not have a feeling of persistent, chronic fatigue. Dr. Elizabeth Dowsett said in an 1992 interview:

"One of the most striking features of ME is that the patient is not tired all the time! Extreme and sudden variability of energy levels both within and between episodes of illness differentiate this syndrome from other diseases associated with fatigue. One can only deplore the current fashion in the United States as well as the United Kingdom to redefine and rename a disability which has been clearly described in the literature for at least 100 years."

"There is nothing to be said in favour of the American acronym CFIDS (chronic fatigue immune deficiency syndrome) with its connotation of a primary immune dysfunction. The term 'chronic fatigue syndrome' recently adopted in this country also is nonspecific and non-descriptive because most of the definition is based on a vast number of exclusions (some of which, for example, endocrine disturbance, are actually found in ME)."

"'Post-viral fatigue syndrome', another British name, describes one essential feature (the association of the illness with viral infection) but gives the impression that the infection was antecedent rather than, as we now know, persistent. I prefer to use the more specific term 'myalgic encephalomyelitis' as it emphasizes the essential encephalitic component of the illness, the muscle pain, and the close clinical and epidemiological similarity to poliomyelitis." 


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Tuesday, 9 May 2017

Who hath blessed us with all spiritual blessings

http://bible.christiansunite.com/Morning_and_Evening/chme0509.shtml 

C H Spurgeon's Morning Devotional for 9th May

"Who hath blessed us with all spiritual blessings."

Ephesians 1:3

All the goodness of the past, the present, and the future, Christ bestows upon His people. In the mysterious ages of the past the Lord Jesus was His Father's first elect, and in His election He gave us an interest, for we were chosen in Him from before the foundation of the world. He had from all eternity the prerogatives of Sonship, as His Father's only-begotten and well-beloved Son, and He has, in the riches of His grace, by adoption and regeneration, elevated us to sonship also, so that to us He has given "power to become the sons of God." The eternal covenant, based upon suretiship and confirmed by oath, is ours, for our strong consolation and security. In the everlasting settlements of predestinating wisdom and omnipotent decree, the eye of the Lord Jesus was ever fixed on us; and we may rest assured that in the whole roll of destiny there is not a line which militates against the interests of His redeemed. The great betrothal of the Prince of Glory is ours, for it is to us that He is affianced, as the sacred nuptials shall ere long declare to an assembled universe. The marvellous incarnation of the God of heaven, with all the amazing condescension and humiliation which attended it, is ours. The bloody sweat, the scourge, the cross, are ours for ever. Whatever blissful consequences flow from perfect obedience, finished atonement, resurrection, ascension, or intercession, all are ours by His own gift. Upon His breastplate he is now bearing our names; and in His authoritative pleadings at the throne He remembers our persons and pleads our cause. His dominion over principalities and powers, and His absolute majesty in heaven, He employs for the benefit of them who trust in Him. His high estate is as much at our service as was His condition of abasement. He who gave Himself for us in the depths of woe and death, doth not withdraw the grant now that He is enthroned in the highest heavens.

Monday, 1 May 2017

The Care Needs Of People With Severe ME

25% ME Group – ME Awareness (May) Information –

The care needs of people with Severe ME – 

With so much misinformation, misinterpretation and misunderstanding about ME in the public domain, it is important that Carers and Agencies providing care are in receipt of accurate and safe information on how to provide care in the best way. 

First and foremost it is essential to know that Myalgic Encephalomyelitis is a serious physical disease, with complex multi-system dysfunction.

Enormous harm can be done by someone who is not fully aware that the person with Severe ME is seriously physically ill and that they are not going to be “made well”  by changing their thoughts or increasing their activity in a graded way.

When you work with someone who has Severe ME you need to be more sensitive and aware than you can possibly imagine.  Harm, even death for some, may follow poor treatment, care and ignorance. The physical frailty and the high risk of deterioration, of someone with Severe/Very Severe ME, cannot be exaggerated nor adequately described. You need to take the greatest of care.

The most important aspect of caring for a person with Severe Myalgic Encephalomyelitis (ME) is the 'how' of caring; the basic core beliefs the carer has about caring and the person to be cared for. What the carer believes will subtly or overtly impact on how caring is provided and has a huge effect on the relationship, quality of care and health of the person receiving the care.

The basic principles behind Severe ME-aware care are:

1. Never define the person by their behaviour.

2. Acknowledge the serious and severe physical illness underlying the person’s symptom experience.

3. Adhere to a strictly defined definition of ME (The International Consensus Criteria).

4. Honour the WHO classification of ME as a neurological disease and respond appropriately and equally as in any other recognised neurological disease.

5. Treat the person with respect on all levels; respect for the way interaction occurs, the physical and the cognitive limitations enforced on the person by their severely disabling multi-system dysfunction.

6. Honour what the person says regarding their physical and cognitive needs.

7. Listen to the person and to only interact at the correct time in the correct way. We call this the MOMENT approach, honouring the severe illness the person has whilst maximising the opportunity to engage safely in order to help, not harm them, when undertaking all care needs. 

8. Understand any hypersensitivity issues (chemical, drug, touch, noise, light, movement, motion, food); never ignore, undermine, negate or belittle them, recognising the danger of the ordinary environment as real, not just perceived.

9. Understand and comprehend that the person with Severe ME is not experiencing the world the same way as a well person and cannot fit into the demands and obligations imposed on them by others, easily or at all. A flexible, knowledgeable, sensitive, compassionate, non-judgmental, person-centred not goal oriented approach at all times is critical. Being aware of the after impact of any interaction is essential; that even something once achieved cannot necessarily be achieved or tolerated again or regularly or increased.

10. Recognise the irrelevance, unhelpful and dangerous nature of a psychosocial response and interpretation of Severe ME, a physical disease. Psychiatry has no right to first hand intervention in this disease which requires a biomedical response and care pathway.

It is vital to ensure that that you never put any overt or covert pressure, demand or expectation to improve, upon the person with Severe ME, nor any underlying belief that is in opposition to the truth and severity of the disease and very real lack of valid treatment and cure.

Why a Moment by Moment approach is required

When your whole body  and head is on fire with multi- level pain and you have unimaginably complex multiple system dysfunction, resulting in complicated hypersensitivities and massive indescribable cognitive disruption, blanking out your mind, with a high risk of deterioration, just by someone being in the room with you, a Moment by Moment approach is realistically the only way that you can possibly get any of even your most basic needs met and even that is incredibly difficult and painful to achieve. 

If you take the first letters of the word “M.O.M.E.N.T, you could say that it means:

M aximising
O the opportunity
M to meet
E each
N need
T tenderly

We call this the MOMENT approach.

Maximising the Opportunity to Meet Need Tenderly

If you are to care for someone at this level of illness, you must learn what is tolerable to the person, when it is more tolerable, if at all and how you might safely approach the person and engage in practical care such as cooking, cleaning, washing, shopping or more intimate care such as helping the person eat, wash, dress, move, urinate or evacuate their bowels.

Every instant counts when you are caring for a person with Severe ME. Every single movement you make, every noise you make, every activity you undertake impacts them.

In order to truly interact in the right way, you need to be committed to learn more about yourself and develop real body awareness, not only when you are with the person but when you are anywhere in the home, so that you perform everything gently, carefully, with awareness of the potential impact.

You must also develop an acute awareness of sound, movement, light, chemical sensitivity , so that you can see, feel, recognise danger instantly and so help protect the person from harm and further deterioration, by reacting quickly and effectively.

You need to notice how you do things, then determine whether you can be more careful in the way that you do them in future, so that they perhaps take less time or can be done with more care to keep noise to a minimum. It might involve slowing right down and taking longer than normal, especially in first hand, direct care.  

It is surprising how loud footsteps can be and how easy it is to bang a cupboard door too loudly or cut food too noisily without any awareness that it could be quieter. Obviously no noise at all is impossible to achieve; nevertheless you must grow in awareness of how every single thing you do might inadvertently cause pain and increase in symptoms.

You need to consider how you are going to avoid chemical, perfume exposure and unnecessary harm from light; this is not as easy as it sounds.

You need to be incredibly sensitive to the person when you are moving around the home, especially the room they are in and even more especially when you are close to them. The slightest quick movement or action, cough or head scratch, unnoticeable to you possibly, can cause tremendous pain and trigger other symptoms.

With Severe ME, natural responses are foreign now.

Nothing seems as it is, for the body does not respond in the normal way to the expectations of most people in the ordinary world. Here you enter a different landscape; the terrain here needs careful investigation and traversing. You may need to adjust your assumptions and presumptions.

Here :

rest does not bring relief
friendly chatting and conversation are often if not always intolerable
information is not easily received, understood or remembered
movement leads to deterioration
touch hurts
ordinary light is painful to agonising
your favourite perfume or deodorant can nauseate and harm
even quiet noise can torment and at worst paralyse
movement can irritate and confuse, can even cause pain
communicating need is not easy
speaking may even be impossible
the possibility even of simple movement may come and go or not materialise
the way you cook things may not be appropriate, delicious -seeming food to you, is simply not what it seems and may be inedible or harmful to the person, especially if you add ingredients not tolerated or cook with the wrong method
gifts, unless incredibly well thought through, can lead to illness deterioration
visitors calling unannounced may be far too much to deal with
the telephone ringing with a friendly message may be an unintentional torture

Everything is turned on its head with Severe ME, where there is not necessarily even enough energy in the body for organs to work effectively and even things kindly, yet ignorantly done, are dangerous.

The result is isolation, from normality and people, on every level. Any interaction can literally be a torment and potential for distress and deterioration.

Nothing is simple; it is rarely obvious what to do. Follow any instructions or guidelines the person provides.

Your focus must be on the person and how they are experiencing your interaction with them. You need to be present mentally, emotionally and physically to the person. You need to be able to sense when the person cannot tolerate your contact or presence. They may not necessarily be able to tell you directly. Some people cannot speak. For others it may be unpredictable. You must learn the subtly of communication and develop understanding together.

With Severe ME everything is unpredictable and relentless, you simply cannot control the illness itself and neither can the person experiencing it themselves.

It is easy to get frustrated when the action you want to do, seemingly quite simple and easy for a well person, is impossible in that moment for the person with Severe ME.

It is a matter of waiting, looking, hoping for the best moments to arise before you can act.  It is essential that you understand that the symptom experience is beyond the person’s control or you may fall into false expectations or wrong interpretations. The relationship will deteriorate if you do not understand or at least accept their inner reality, the complex, intolerable symptoms they are experiencing, the difficulties with the environment and even with you, being near them.

There is nothing more wonderful than connecting and flowing together, especially in difficult circumstances and feeling good about yourself as a carer. If you can get it right you can bring comfort and reassurance, trust and valuing to both your lives. You can genuinely help, not inadvertently harm.

Adapted from “Severe ME : Notes for Carers
by Greg Crowhurst

Ref : Myalgic Encephalomyelitis: International Consensus Criteria, Journal of Internal Medicine, 20 July 2011

Article produced by
Stonebird www.stonebird.co.uk 
The 25% ME Group www.25megroup.org