By David Tuller, DrPH. The UK’s National Institute for Health and Care Excellence (NICE), which develops clinical guidelines for a range of medical conditions, is currently selecting a committee to develop a new guidance for the illness it refers to as myalgic encephaloymyelitis/chronic fatigue syndrome (ME/CFS). The new guidance will replace one written in 2007, when […]
By David Tuller. By David Tuller, DrPH After I posted yesterday’s blog about Per Fink’s upcoming appearance at the fourth annual Columbia Psychosomatic Conference being held this weekend, I received the following e-mail from Columbia’s Alla Landa. She is an assistant professor of “clinical psychology in psychiatry”–whatever that means–and director of the conference. I found […]
By David Tuller, DrPH. Someone uninformed or stupid or maybe both decided to invite Danish physician Per Fink to present at a conference on so-called psychosomatic medicine being held this weekend at Columbia University. Fink—I won’t dignify him by using an honorific–is a scary guy. He should never have been provided with this […]
By David Tuller, DrPH I sent the following e-mail today to Dr Nick Brown, the editor-in-chief of Archives of Disease in Childhood, the journal that published the Lightning Process study a year ago. I cc’d Dr Fiona Godlee, editorial director of BMJ, which publishes Archives. ********** Dear Dr Brown— As you know, I have […]
By David Tuller in Berkeley Wellness. Journalist Maya Dusenbery’s new book—Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick—is an in-depth examination of how gender bias in medicine has negatively impacted women’s health for generations. In a starred review, Publishers Weekly noted that Doing Harm “skillfully interweaves history, medical […]
By David Tuller, DrPH. I’ll be in Bristol later this week for the CFS/ME Research Collaborative’s annual conference. I was not welcome last year, since I was at that point engaged in harshly criticizing the organization for its unwillingness to acknowledge that its deputy chair had falsely accused me of libel. This year, things […]
By David Tuller, DrPH. Cochrane–formerly called the Cochrane Collaboration–is respected worldwide for its systematic reviews of medical treatments. These reviews are often cited as the definitive source of information about treatment efficacy and safety. In taking on the thankless task of assessing the data on commonly used interventions, Cochrane performs an invaluable public […]
By David Tuller, DrPH. A British medical education company has recently disseminated a recruitment ad for a high-profile pediatric study of treatment for what it calls CFS/ME. The recruitment ad’s headline describes the intervention being investigated as “effective,” without caveat or reservation. (Full headline: “Chronic fatigue syndrome (CFS/ME): effective home treatment for teenagers”) […]
By David Tuller, DrPH. Not long ago, Sir Simon scored an own goal by enticing a childhood buddy to enter the PACE debate. That buddy, attorney and social commentator Mike Godwin, soon pronounced the trial—which Sir Simon had called “a thing of beauty”–to be “so profoundly flawed that it cannot be trusted.” Sir Simon tweeted […]
By David Tuller, DrPH. Last summer, the US Centers for Disease Control removed graded exercise therapy and cognitive behavior therapy from its website as recommendations for treatment of the illness it was by then calling ME/CFS. Its stated explanation for the change–that readers had misunderstood the recommendations–was nonsense. Readers understood all too well what […]
By David Tuller, DrPH. Last week I admonished the US Centers for Disease Control for including fuzzy language about exercise in its new package of “information for healthcare providers.” The way the Mayo Clinic deals with the illness it calls chronic fatigue syndrome is an excellent illustration of why it is so important for the […]
By Steven Lubet and David Tuller in STAT News Brian Vastag was enjoying a life that many people would envy. At age 41, he had achieved professional success as an award-winning health and science reporter for the Washington Post, covering important stories from around the world. That came to an end in July 2012, when he […]
11 JULY 2018 By David Tuller, DrPH Earlier today, I e-mailed the following letter to the members of the House of Commons Science and Technology Committee, which has been investigating issues of scientific and research integrity. I thought it would be a good idea to make sure they knew that this quality appeared to […]
By David Tuller, DrPH. Last month, Professor Racaniello sent Lancet editor Richard Horton an open letter about the PACE trial signed by 94 scientists, clinicians, academics and other experts. The letter, a follow-up from one sent in 2016, cited the study’s “unacceptable methodological lapses” and called for a fully independent investigation. Since Dr Horton has not […]
By David Tuller, DrPH. From the start, one of my strategies for this PACE-debunking project was to draw in outside experts–people with no ax to grind and no pre-conceived notions about the trial and its methodology–and encourage them to scrutinize the matter. It was telling that many well-regarded scientists and researchers were willing […]
By David Tuller, DrPH. When the PACE trial was published in early 2011, my New York Times editor sent it to me, along with the press release. As a non-staff contributor to the Times, I had started covering the debate over the mouse retrovirus hypothesis and science, but I’d heard nothing about anything called PACE or […]
By David Tuller, DrPH. On February 20th, Carol Monaghan, a member of Parliament from the Scottish National Party, led an extraordinary debate in the House of Commons about the ethical and methodological failings of the PACE trial. The debate included discussion of the debilitating nature of the illness, the conflicts of interests of the PACE authors, the […]
By David Tuller, DrPH. Two pieces of news dominated yesterday’s announcement from the CFS/ME Research Collaborative: First, the group is narrowing its scope of activities to focus on promoting “the discovery of the biological mechanisms that underpin CFS/ME.”Second, Professor Esther Crawley is not only stepping down as deputy chair of the executive board but leaving […]
By David Tuller, DrPH. So I’ve been asked about my plans after June 30th, which is the end of the period covered by last year’s crowdfunding campaign. There’s been significant progress since I launched that effort. Among other developments, the CDC dropped its recommendations for CBT and GET, NICE decided to withdraw its preliminary […]
By David Tuller, DrPH Last week, Professor Racaniello e-mailed a letter of concern signed by more than a dozen experts to Dr. Trish Groves, editor-in-chief of BMJ Open. The letter involved Professor Esther Crawley’s school absence study, which the journal published in 2011. As I’d documented in a post last year, the study exempted itself from ethical […]
By David Tuller, DrPH. Three weeks ago, Professor Racaniello e-mailed a letter of concern to Archives of Disease in Childhood about its recent study of the Lightning Process as a treatment for ME/CFS in kids. The journal’s editor, Dr. Nick Brown, answered within an hour, assuring Professor Racaniello that he took the matter seriously and that the […]
By David Tuller, DrPH. Last October, the British Journal of Sports Medicine published a short paper that was essentially a summary of Cochrane’s systematic review of graded exercise for chronic fatigue syndrome (as Cochrane calls the illness). This systematic review is problematic for a number of reasons—not least of which is that it includes the debunked PACE […]
By David Tuller, DrPH. Yesterday I reviewed an account of a publishing dilemma that had been submitted to the forum of the Committee on Publication Ethics. The COPE forum offers advice on thorny situations submitted anonymously by members. In this case, the submission appeared to be from BMJ Open and it appeared to be discussing […]
By David Tuller, DrPH. This post is about a serious issue–ethical approval for research studies involving children. It is also about how powerful institutions, like leading medical journals, respond to concerns. But the story is really too long and complicated. I recommend it only for those following things pretty closely or who for […]
By David Tuller, DrPH. My first recent freedom of information request to the National Institute for Health and Care Excellence (NICE) was for information about the experts consulted in the current process of reviewing CG53, the 2007 guidance for the illness the agency calls chronic fatigue syndrome/myalgic encephalomyelitis. In its response, the agency explained […]
By David Tuller, DrPH in Virology Blog. The National Institute for Health and Care Excellence, the U.K. organization that develops clinical guidelines for medical conditions, has rejected my freedom-of-information request for the names of the experts involved in the reassessment of the guidance for the illness it calls CFS/ME. This isn’t surprising, since […]
by David Tuller, Dr PH [June 25, 2017: The last section of this post, about the PLoS One study, has been revised and corrected.] I have tip-toed around the question of research misconduct since I started my PACE investigation. In my long Virology Blog series in October 2015, I decided to document the […]
By David Tuller, DrPH David Tuller is academic coordinator of the concurrent masters degree program in public health and journalism at the University of California, Berkeley. Wow, the research from the CBT/GET crowd in The Netherlands never ceases to amaze. Like the work of their friends in the U.K., each study comes […]
Wed 21 Nov at 2 pm - Coffee Club, Novotel York.
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Mon 3 Dec at 11 am - Coffee Club at Bar Convent, 17 Blossom St, York.
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April 2019 (Date tbc) - The York Inset Scooter Club will be setting off on their annual Mods and Rockers Charity Ride Out from York to the coast in aid of The York ME Community.
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Weekly - Every Wed, 8 pm - 9 pm on Twitter, ME Awareness Hour using the #MEAwarenesshour hashtag.
Would you like to help your local community ?
By current research, there are around 800 people in the York area suffering from Myalgic Encephalomyelitis (ME). This might include the work colleagues you haven't seen in some time, or your friends and family, maybe one of the lads who hasn't turned up for five-a-side for a while.
There's information at the top of this site to explain how it affects people and ruins lives. These are your neighbours; would you like to help ? To read the rest of this request, click on the link below:
The social element of this site is via a Facebook Group called The York ME Community.
This is available to people in the York area looking for help, advice and support, whether those diagnosed, family or friends. We are a close knit group who discuss more than just ME, as we like to think that we are not defined by this illness. We discuss every day things, have a laugh, and try to meet via our Coffee Club if the beast that is ME allows us ! If you apply to join, please check your Facebook messages, as there are a couple of automated questions to be answered before being welcomed to the group.
Please don't apply to join if you are promoting your preferred remedy. I'm happy to mention your company within the group, but it's for individuals to choose what they wish to try in their battle to seek an improvement in their health.
Some companies and organisations offer discounts for disabled people and their carers – click on the link below to find out what you could save.
Carol Monaghan SNP spoke in Westminster Hall about the need for support and funds for ME Research. Many other MP's spoke passionately on the subject as it affects their constituents UK wide. Click on the link below to watch the full debate.
Looking after your Accessibility Holiday needs with escorted coach tours with qualified care teams. To find out more, click on the link below:
Anil's interview gives a great insight to the man and his ME mission !
Link to Anil van der Zee's Interview
Having read the above interview, I'd recommend a visit to David's Blog below:
After a pretty tough time, the guys riding as part of The Nomadic Knights group, made it to Everest Base Camp. I hope we can use this story to gain interest from media sources to help raise awareness for us all. It's the least the guys deserve for all their efforts.
19 May 2017.
“Very pleased to report that we reached Mt Qomolangma (Everest) Base Camp with the ME Awareness Flag at 1528hrs on Thursday 18th May. Three and a half hours after we had planned but time in Tibet can sometimes be very fluid. The base camp is located at 5200m, walking to the final destination was challenging in itself due to low oxygen levels.
Conditions at base camp were extremely windy (good for flag flying) with intermittent clouds with no particular destination in mind and the sun was not ideal for photos."
Debbie North, our TOG wheelchair walk designer uses an off-road mobility scooter, also called an all terrain hopper to access the countryside and wants to inspire other wheelchair users to do the same through her wheel friendly walks.
Wheelchair friendly walks are a selection of walks that the TOG team have carefully selected for families using pushchairs, wheelchairs or bicycles.
The Jen Brea ME film 'Unrest', about her story and struggle with Myalgic Encephalomyelitis (ME) was shown to a sellout audience at City Screen York on 1st November, prompting a second showing on 16 November. This film has won awards at The Sundance Film Festival and is a must see for all wishing and needing to know more about an illness affecting over 800 people in the York area alone.
Although still showing around the UK and worldwide, it's now also available on Amazon and iTunes and through the Unrest UK Store on DVD and Blu-Ray by clicking on this link: Unrest site to save having to undertake a journey to the cinema.,
Please spread the word through your GP, MP, Company HR Teams and any other people of influence you may know. Thank you.
One of the major questions raised is the blending of ME with CFS. This chart on the Hummingbirds site illustrates the many differences between Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis (ME).
For confidential and independent advice for everyone on welfare benefits, debt, housing, employment, consumer rights and much more.
Welcome to Broken Puppet Theatre Company.
We are a small team of creative professionals who live with chronic illness and invisible disabilities. We work with theatre, film and puppetry to support children, families, schools and communities who are learning to share their world with chronic illness and invisible disabilities too. Our aim is to provide creative expression and escapism wherever they are needed.
Helpfulpeeps is a platform that allows people in any given area to ask for and offer help to one another. Although this is a nationwide facility, by adding your street name, the system automatically drops a pin on that location and you only see posts from a 20 mile radius. You have the option to narrow or widen this radius. I hope this is a useful facility for members of our Community.
If you're given the time and space to talk things through, you can find a way through your problems.
Samaritans help you to explore your options so you can make decisions that are right for you.
Upon request, North Yorkshire Fire & Rescue Service can carry out a home fire safety visit to your home, completely free of charge. This visit involves fire service staff coming to your home to give you advice on fire safety in the home, actions you can take to reduce the risk of fire, and discuss escape routes should fire occur.
If you don't aim to take up this offer, please at least check the batteries on your smoke alarms on a regular basis. If you want to read more, click on the link below:
The Sandbag Times is an Online Magazine written by Veterans for Veterans
which brings you all the latest national and international Armed Forces and Veterans news. With insights each week into Veterans Charities, organisations, events and lots more. It also supports the work being done by The York ME Community.
To keep in touch with all things military, click on the link below:
The York Inset Scooter Club is based in York (UK) and has a membership of around 250.
They are a thriving, active club and look to support local charities when they can. They have an annual Mods and Rockers charity ride out, and for 2019 have agreed to support The York ME Community.
They will head off from The York Eye (Clifford’s Tower) on a run out to the coast, and be set off by the Mayor of York and the York Normandy Veterans.
All money raised will be used to raise the profile of ME in York through posters being produced and put up in local business premises, clubs, schools, GP Surgeries and venues. The picture shows the club gathering before last year’s Charity Ride Out. More details will be given nearer the time, and will be highlighted on this site.
This is a call out to all York Businesses, Clubs and Venues to put it in your diaries for next season and support your local ME Community.
To help raise ME Awareness in your local area, have a look at the tab at the top of the site for more information.
Our Coffee Club meets twice a month for a cuppa and a natter.
Dates and times will always be shown in our diary at the top left of this site.
The Coffee Club is open to anyone either with ME, or friends and family looking for support from people who understand.
Due to the nature of the illness, there will be times when numbers are low, but if you'd like to attend, either just turn up on the day, or email me at bill@York-ME-Community.org. If you're a member of our Facebook Group, you can of course say you'll be going via the notice in the Events area.
Euan’s Guide is the disabled access review website used by disabled people to review, share and discover accessible places to visit. The charity was founded in 2013 by Euan MacDonald, who is a powerchair user, and his sister Kiki. As Euan’s access requirements changed, both went in search of recommendations for accessible places to go, but a platform for this kind of information didn’t exist. Built as a friendly and honest alternative to hours of web searching and phone calls before visiting somewhere new, Euan’s Guide now has thousands of disabled access reviews and listings for places all over the UK and beyond.
To go to Euan's Website, click on the link below:
Help us raise money for The York ME Community to pass onto Invest in ME Research every time you shop online, and it doesn't cost you a penny !
By using the link below, when you shop online with a huge number of shops, they will pass a percentage of your purchase cost to our fund. THIS MONEY IS DONATED BY THE RETAILERS, NOT YOU !
Written Question to the Department of Health and Social Care on 22 May 2018 by Carol Monaghan SNP, answered by Caroline Dinenage Minister of State (Department of Health and Social Care)
| Financial Year | £ |
| 2014-15 | 280,442 |
| 2015-16 | 295,626 |
| 2016-17 | 130,958 |
A TRUE STORY BY JESSICA TAYLOR-BEARMAN
Book Description: From a darkened world, bound by four walls, a young woman called Jessica tells the tale of her battle against the M.E Monster. The severest form of a neuro immune disease called Myalgic Encephalomyelitis went to war with her at just 15 years old. From beneath her dark glasses, Jessica glimpses a world far different from the one she remembers as a teenage school girl. This true story follows her path as she ends up living in hospital for years with tubes keeping her alive.
This harrowing story follows the highs and lows of the disease and being hospitalised, captured through her voice activated technology diary called `Bug' that enables her to fulfil her dream of one day becoming an author.
It provides a raw, real-time honesty to the story that would be impossible to capture in hindsight.
To order the book through Jessica's site, click on the link below:
This book is also now available at York Library
An album of original songs and poetry composed and performed by people with M.E. from all over the world, has been released to mark and support ME Awareness Day, 12 May 2018.
It’s hoped that by releasing this album, it will help those with ME to know that they are not alone, and for others to understand the nature of this illness and give what support they can.
Please consider downloading the album, or even a couple of tracks to help raise awareness of ME, and much needed funds for research into this illness that affects so many, but is understood by so few who may be in positions to help. Proceeds to ME Research and Education. All further information and questions, please direct via the website below: The album can be downloaded now from:
PLEASE SPREAD THE WORD !
I had a very productive meeting with Cllr Aspden and Cllr Runciman of City of York Council where they have stated they will back efforts to raise awareness of ME, understanding that much more is needed to increase understanding of this debilitating disorder, in York and across the UK.
The motion put before Council with regard to support in raising ME Awareness in York was passed unanimously !
The City of York Council followed through on their promise by lighting up the city walls and Clifford's Tower in blue over ME Awareness Week.
Are you a member of a York based Sports or Fitness Club ? Looking for a local cause to run or do an activity for ? The York ME Community are looking to be 'adopted' by anyone willing to maybe run for us and help raise our profile. There are around 800 people of all ages in the York area who would be so very grateful for your help.
We had a brilliant day at York Explore Library raising ME Awareness. Lots of interest in what we're doing from local health groups, charities, the council and most heart warmingly, from those dealing with ME themselves who now know we're here for them.
If you'd like to hear more about ME, get in touch.
Time For Unrest: Why Patients With ME Are Demanding Justice.
If you want the full story on ME and will read just one article about it this year, please make it this one,
Are you on Twitter? Learn more about ME every Wednesday, 8 pm - 9 pm (UK) using #MEAwarenesshour
Mike Harley is a very special guy who's running a marathon in each EU country to raise awareness and funds for Invest in ME Research. Please visit his site to learn more.
To go to the Government's Disability Benefits Advice Guide, click on the link below:
DisabledGo in York provides information on Shopmobility, Talking Signs, Dial & Ride, York Wheels and accessible Public Toilets in our city. To find out more before setting off for York, click on the link below:
FEATURED ARTICLE
By
Sally Duffin
Hello to all the members of York ME Community. I’m Sally, a Naturopathic Nutritional Therapist at ‘Nutrition in York’ and Bill has asked me to share some nutritional therapy approaches for managing ME.
Many nutritional therapists – myself included – are trained in the Functional Medicine approach to healthcare which means we are less concerned with the name of a condition (ME, CFS etc.) and more interested in the underlying cause and contributing factors of the condition. (more…)