By Steve Topple in The Canary. There will soon be a watershed moment for millions of chronically ill disabled people. Because what one MP described as a “medical scandal” will now face a full parliamentary debate. To read the rest of this story, click on the link below: Link to ME story
By Björn Regland, Sara Forsmark, et al in PLos ONE. Abstract Background Patients with myalgic encephalomyelitis (ME, also called chronic fatigue syndrome) may respond most favorably to frequent vitamin B12 injections, in vital combination with oral folic acid. However, there is no established algorithm for individualized optimal dosages, and rate of improvement may […]
By Cort Johnson in Health Rising. The Best, Most and Least of 2018 A look back at a most interesting year which has to start with Cortene… Treatment Nicest Surprise It wasn’t supposed to go like this. First, in a disease like ME/CFS, you’re supposed find a repurposed drug or two to treat […]
By Eiren Sweetman et al in Sage Journals. Abstract. Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a poorly understood disease affecting 0.2%–2% of the global population. To gain insight into the pathophysiology of ME/CFS in New Zealand, we examined the transcriptomes of peripheral blood mononuclear cells by RNA-seq analysis in a small well-characterized patient group […]
By Michael B. VanElzakker, Sydney A. Brumfield and Paula S. Lara Mejia in Frontiers in Neurology. Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is the label given to a syndrome that can include long-term flu-like symptoms, profound fatigue, trouble concentrating, and autonomic problems, all of which worsen after exertion. It is unclear how many individuals with this diagnosis are […]
By Jaime in #MEActionNet. Though science may speed along a bit fast to ‘catch’ on audio, you can also listen to me read this article on #MEAction’s Soundcloud here. We are pleased and proud to announce that our two research fellows, Sydney A. Brumfield and Paula S. Lara Mejia, have written and released their first […]
By Simon McGrath in ME/CFS Research Review. OPINION Although there are no treatments for ME/CFS on the horizon, things are looking up thanks to recent findings and a substantial increase in the amount of high-quality research. The field still needs much more funding. Do you remember the buzz around rituximab? Oncologists Dr Fluge […]
By KATARINA ZIMMER, in The Scientist. EDITOR’S CHOICE IN CELL & MOLECULAR BIOLOGY The paper B.H. Abuaita et al., “Mitochondria-derived vesicles deliver antimicrobial reactive oxygen species to control phagosome-localized Staphylococcus aureus,” Cell Host Microbe, 24:625–36, 2018. According to biology textbooks, a macrophage engulfs a bacterium, internalizes it in a toxin-filled vesicle called a phagosome, then shuttles the […]
By JENNIFER SPOTILA in statnews.com. When I first developed myalgic encephalomyelitis in 1994, I had no idea that I would be just as sick 25 years later, or that there would still be limited scientific understanding of the disease and no effective treatments. Nor did I imagine that my career as a lawyer was over, and […]
By Valerie Eliot Smith in valarieeliotsmith.com. The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times. IntroductionI strted writing this blog in 2012. For several years since then, I have kept starting drafts on a particular topic, only to then abandon them because the subject-matter is complex […]
By David Tuller, DrPH In addition to giving a couple of talks in Norway, I also answered some questions from Trude Schei, assistant Secretary General of the Norwegian ME Association. I doubt I said anything I haven’t stated many times before. However, members of the GET/CBT ideological brigades–in Norway and elsewhere–continue to maintain […]
By Marilyn Simon-Gersuk in #ME Action. Researchers have published a paper that shows various measures of deformability in the red blood cells of people with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME/CFS) indicating that they are significantly stiffer in people with ME/CFS than those from healthy controls. The observations suggest that red blood cell transport through microcapillaries may […]
An old story, but worth repeating for those who believe ME is all in our minds. By Michelle Roberts in BBC News. Patients with ME will no longer be able to donate blood in the UK under new safety guidelines. Officials say the ban, starting on 1 November, is designed to protect the health of […]
By Authors: Saha, K. Amit et al in IOS Press Library. BACKGROUND: Myalgic encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) is a poorly understood disease. Amongst others symptoms, the disease is associated with profound fatigue, cognitive dysfunction, sleep abnormalities, and other symptoms that are made worse by physical or mental exertion. While the etiology of the disease is […]
By David Tuller, DrPH. Earlier this month, NIH director Francis Collins and other agency officials held a meeting with five representatives from #MEAction. According to the group’s post about the meeting, the goal was “to discuss accelerating research in order to more rapidly provide diagnostics and treatments to people with ME.” Specifically, #MEAction urged […]
By Cort Johnson in Health Rising. Your family, friends and even your doctor may, probably will at some point, prod you to get moving. They think that if you can just get on your feet again and start exercising, you’ll be so much better. It’s irritating to hear and just reinforces how isolated you […]
By Cort Johnson in Health Rising. This is the first of a couple of blogs that will celebrate visionaries within the ME/CFS/FM communities who took action to make their visions real. Dr. Bateman was doing yeoman’s work serving the ME/CFS/FM community in her medical practice in Salt Lake City, Utah. She could […]
From Solve ME/CFS Initiative. My ME/CFS story is 30 years long. It began in 1985 when I was stricken with a virus that never left and evolved in its effects. In the early days, I had to go back to bed after cleaning my teeth. Now, fatigue is not so much a problem but still […]
By Cort Johnson in Health Rising. The Deconditioned ME/CFS Patient? A huge (n=345) 1998 UK study set the stage. The smaller, less muscular hearts and carotid arteries found in ME/CFS made it clear – at least to those researchers – that both physical and cardiovascular deconditioning was present in ME/CFS. They recommended a graded exercise program to […]
By David Tuller, DrPH in Trial By Error. In an eagerly awaited draft report, an Australian advisory committee on ME/CFS has called for the development of up-to-date domestic clinical guidelines and an increase in biomedical research into the pathophysiology of the illness. The draft report, which could have a major impact on health policy […]
From Solve ME/CFS Initiative. Solve ME/CFS Initiative (SMCI) is pleased to announce that we have received funding to support additional Ramsay studies for the 2018 Ramsay Award Program Class that will be led by Dawei Li, PhD, an Assistant Professor at the University of Vermont, and Malav Trivedi, PhD, an Assistant Professor at Nova Southeastern University. Both Dr. Li […]
By David Tuller, DrPH I haven’t had time to cover the new and wildly over-hyped study about prolonged fatigue–and purportedly about “chronic fatigue syndrome”–that was published this week in the journal Psychoneuroendocrinology. Thanks no doubt to the involvement of the Science Media Centre, this mildly interesting piece of research has received widespread media attention. […]
From #MEAction. As always, our community continues to amaze us with its tenacity, creativity, intellect, hard work and generosity. Enjoy a round-up of some of the community happenings these past few months where people with myalgic encephalomyelitis (ME) around the world continue to fight for recognition, treatment, care and dignity. Austrian broadcast station @ATV […]
4 DECEMBER 2018 By David Tuller, DrPH Earlier today, I sent the following e-mail to Dr Fiona Godlee, editorial director of BMJ. I cc’d Carol Monaghan MP, Darren Jones MP, and Nicky Morgan MP. I also cc’d Teresa Allen of the Health Research Authority. ********** Dear Dr. Godlee— As you know, I […]
By Laurel Ives, BBC Health. An overactive immune system may help explain the cause of chronic fatigue syndrome, scientists from King’s College London have suggested. Many sufferers of CFS, or ME, say their condition began with a challenge to their immune system like an infection. The scientists studied 55 patients with Hepatitis C who were […]
By David Tuller, DrPH. I spent the last week of November in Oslo. The Norwegian ME Association invited me to give a couple of talks and have some meetings with public health officials. The city was charming, even if dark and overcast at this time of year. Not surprisingly, the same tussle taking […]
By Michele Lent Hirsch in Cosmopolitan. She’s lying on a gurney in a white room, a blanket covering her body, an IV pinched into her arm. A nurse is sticking electrodes to the side of her head, like stickers. Soon they’ll send electric currents into her brain, inducing a seizure. She’s aware […]
By Cort Johnson in Health Rising. It’s always hard to lose a loved one, but the deaths in ME/CFS seem particularly hard. They tend to be quite painful, they often take place in the midst of a non-supportive medical system, and they’re a complete mystery. With no seeming way out it’s no […]
By Amy Proal and Trevor Marshall in Frontiers in Pediatrics. The illness ME/CFS has been repeatedly tied to infectious agents such as Epstein Barr Virus. Expanding research on the human microbiome now allows ME/CFS-associated pathogens to be studied as interacting members of human microbiome communities. Humans harbor these vast ecosystems of […]
By Frank NM Twisk in World Journal of Methodology. Abstract Although myalgic encephalomyelitis (ME) and chronic fatigue syndrome (CFS) are considered to be synonymous, the definitional criteria for ME and CFS define two distinct, partially overlapping, clinical entities. ME, whether defined by the original criteria or by the recently proposed criteria, is not equivalent […]
By Jennie Spotila, in the Inquirer. I recently went to a new doctor. He looked over my chart: “Chronic fatigue syndrome,” he read, and then he glanced up at me. “You don’t look tired,” he quipped. “There, I made it go away.” I’ve been sick for 24 years, and I get comments like […]
By Cort Johnson in Health Rising. Could the microvascular system – the small capillaries and the red blood cells that run through them – hold the key to energy problems in chronic fatigue syndrome (ME/CFS) and perhaps fibromyalgia? The idea that the blood delivery system – not some metabolic derangement per se – is […]
By Cort Johnson in Health Rising. Having any disease is scary, but having chronic fatigue syndrome (ME/CFS) and/or fibromyalgia (FM) often adds a hefty dose of confusion and bewilderment to that fear. Not only are people with ME/CFS and FM typically exhausted and in pain, but problems with short-term memory and information processing […]
By Eliana M. Lacerda et al in Frontiers in Neurology. Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a disabling disease characterized by unexplained incapacitating fatigue, accompanied by variable multi-systemic symptoms. ME/CFS causes a significant personal and public health burden, and urgently requires the coordination of research efforts to investigate its etiology and pathophysiology and to develop […]
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Mon 4 Mar at 11 am - The York ME Community Coffee Club at Bar Convent, 17 Blossom Street, York.
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Sun 17 Mar 2019 - Mike Harley is running a marathon in each EU member country (28 currently) for Invest In ME (www.investinme.org) for biomedical research to treat and cure ME. Next up: #20 Paphos (Cyprus), 17/03/19
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Wed 20 Mar at 2 pm - The York ME Community Coffee Club at Novotel York.
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Sun 28 Apr 2019 - 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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31 May 2019 - Invest In ME Research Conferences, London.
This annual international, CPD accredited research conference provides a platform for the latest and most promising biomedical research into ME.
IIMEC14 will be the fourteenth conference and regularly attracts researchers, clinicians, doctors, nurses, occupational therapists, healthcare professionals and patient groups twenty countries from around the world.
The conference is a full day event from 09.00 to 17.30.
For up to date information, click on the link below:
Link to Invest In ME Research Conferences Information
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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.
STOP PRESS: FULL DEBATE TO BE HELD IN PARLIAMENT ON THURSDAY 24TH JANUARY 2019
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 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.
Last season was a great success with 15 teams involved, and this season is going brilliantly with the aim of spreading ME Awareness. As a bonus, we have also raised £725.00 for Invest in ME Research.
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 join in for next season and 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, was released to mark and support ME Awareness Day, 12 May 2018.
It was 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…)