Saturday, 24 June 2017
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
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
C H Spurgeon's Morning Devotional for 13th June
"Whosoever will, let him take the water of life freely."
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
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
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
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
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