From Lifechangeswithme. What is Pacing? Rest? Unfortunately with ME there isn’t one magic pill or treatment to help us get better – less ethical individuals may claim there is. Such is the nature of an illness where individuals with similar symptoms yet unknown causes are grouped together with the term “Chronic Fatigue Syndrome, Post-Viral Fatigue and ME.” […]
The Guilt of ME When the beast descends we know the score Strength and hope go through the floor We’ve all been on this road before Another day of guilt Want to take my part in life Want to spend some time with wife Want to cause no further strife Another day of guilt […]
By David Tuller, DrPH Professor Esther Crawley, Bristol University’s methodologically and ethically challenged pediatrician and star researcher, has weighed in with an interim analysis of FITNET-NHS, her trial of online cognitive behavior therapy for adolescents with what she calls CFS/ME. Poor Professor Crawley! Despite her ambitious goal of enrolling a whopping 734 participants, early […]
By Dylan Murphy, Guest Blogger, ME Association. Professor Chris Ponting is Chair of Medical Bioinformatics at Edinburgh University and a Principal Investigator at the MRC Human Genetics Unit, Institute of Genetics and Molecular Medicine. His research group has made substantial contributions to protein science, evolutionary biology, genetics, and genomics. He has served on the editorial boards of […]
By Cort Johnson in Health Rising. Could COVID-19 studies already be providing clues about what went wrong with the long haulers and people with post-infectious chronic fatigue syndrome (ME/CFS), fibromyalgia and other diseases? Two articles in the New York Times – a feature length one, “How Covid Sends Some Bodies to War With Themselves“, […]
From Stanford Medicine. She is an author of extraordinary success. Laura Hillenbrand’s Seabiscuit and Unbroken are literary phenomenons: Together, there are more than 13 million copies in print, and both have been made into blockbuster motion pictures. Seabiscuit, published in 2001, tells the story of a racehorse that captured America’s heart during the Great Depression. Unbroken, published in 2010, […]
By Katarina Zimmer in The Scientist. The COVID-19 pandemic is sparking renewed efforts to study the underlying causes of this complex, debilitating disease, which might be triggered by the novel coronavirus. People with myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) suffer from a chronic, debilitating fatigue that can leave them unable to maintain a job or […]
By David Tuller, DrPH (*Thanks to the the very informed discussion–and discussants–on the Science For ME forum for alerting me to this study and its many problems!) In 2011, Professor Trudie Chalder declared at a press conference for the high-profile PACE trial that twice as many chronic fatigue syndrome patients who received cognitive behavior therapy and […]
By Ryan Holmes in Matza Review. A singer who has ME has launched her debut album, after spending two years recording it whereas bedbound, with it presently quantity two within the Amazon Best Sellers chart forward of Taylor Swift. Kara Jane Spencer, 29, from Shirebrook, Derbs., was recognized with the debilitating situation when she was simply […]
By Jennie Jaques. This is an article to assist patients with the long-haul symptoms following COVID-19. My article is likely most relevant to Long Covid sufferers in their ‘post-viral’ stage – i.e those who find themselves still battling the symptoms after 4 months. But the sooner the advice can be understood the better. We will […]
By Valerie Eliot Smith in Law and Health. “The history of ME remains one of the worst examples of unacknowledged institutional abuse in modern times.” ~ Valerie Eliot Smith 2019 ***************************** Note: this blog works across all devices but can be viewed most easily on a computer or tablet. Thank you for visiting […]
By Adrienne Dellwo in Very Well Health. You still hear that chronic fatigue syndrome (ME/CFS) is a “mystery illness,” but that viewpoint is becoming dated. The nature and mechanisms of the disease are beginning to take shape, thanks to the ongoing efforts of researchers. Over the years, especially recent ones, we’ve learned a huge amount. Some of that […]
From ME International. Some of these links refer to ME/CFS as per the IOM which is a broad criteria encompassing many patients who may not have ME as defined by the ICC. For choosing proper research candidates, the IC Primer states on page ii: “…the ICC [International Consensus Criteria] select patients who exhibit explicit multi-systemic […]
By Simon McGrath in ME/CFS Research Review. A patient-led petition asked the Dutch parliament to tackle ME properly. It instructed the Government to take action, which eventually led to the Dutch health research agency recommending a €25m biomedical research programme. Patients are playing a central role in the process. The Dutch national health […]
To help highlight those missing from their lives, this being Severe ME Awareness Week. Millions Missing Tommy missing from the five a sides A different postman today Jenny not out, not seen her about Maybe she’s just gone away No Mary at the Bingo Charlie, where is that guy? Rang the teacher, couldn’t […]
By Brian Hughes in The Science Bit. The people who want you to think that everything is “all in your mind” are back, their schtick now revised and updated for a COVID-19 world. Here’s the Daily Telegraph: Some local coronavirus outbreaks could be ‘mass hysteria’, Joint Biosecurity Centre warns Some local coronavirus outbreaks may just be mass […]
From Star News. In a cruel twist, many Covid-19 survivors could be affected by a once-obscure chronic fatigue condition, initially termed the Tapanui flu, and whose existence was once ridiculed and denied.Emeritus Prof Warren Tate (73), of the University of Otago biochemistry department, officially retired recently but is continuing his molecular-level research into […]
From Genetic Engineering & Biotechnology News. Biomedical engineers at Tufts University School of Engineering have developed tiny lipid-based nanoparticles that incorporate neurotransmitters, which can help to carry drugs, large molecules, and even gene editing proteins across the blood-brain barrier (BBB) and into the brain in mice. The researchers believe the new neurotransmitter-derived lipidoids—or […]
From the Open Medicine Foundation. Open Medicine Foundation (OMF) is excited to announce a new collaborative study between the ME/CFS Collaborative Research Center at Uppsala, Sweden and the Harvard ME/CFS Collaboration. This study focuses on biomarkers for long-term neurocognitive outcomes. It provides an excellent opportunity to understand the mechanism of long-lasting viral-induced cognitive complications, commonly referred to […]
By Helen Salisbury, GP in BMJ. Author affiliations helen.salisbury@phc.ox.ac.uk Follow Helen on Twitter: @HelenRSalisbury In the heat of the pandemic, news reports focused on patients who were severely ill, in hospital and on ventilators. Fortunately, this was a minority of patients, and most people with covid-19 remained at home—some of them horribly unwell but not […]
From The Week. As the UK’s daily death tolls fall and the immediate threat of Covid-19 recedes, doctors are warning that the outbreak may lead to a long-term surge in cases of a debilitating and untreatable disease. Chronic fatigue syndrome, also known as myalgic encephalomyelitis or CFS/ME, is an “illness with a wide […]
By David Tuller, DrPH Professor Trudie Chalder is a lead investigator of a series of studies of rehabilitative interventions for so-called “medically unexplained symptoms” that have failed to meet expectations but have nevertheless been promoted as demonstrating treatment success. The piece of crap known as the PACE trial is a prime example. Most famously, Professor […]
By Dr. Anthony Komaroff in Center For Solutions For ME/CFS. On July 21, 2020, the results of a proteomics study by the Center for Solutions for ME/CFS was published by the journal PLoS ONE. Proteomics uses new technologies—that have become available in the last two decades—to precisely identify large numbers of proteins and measure their levels. The measurement […]
There are so many questions banded about as to the story of Myalgic Encephalomyelitis (ME), but this video gives a better and fuller insight than most. Once you've watched it, please copy the link and spread the word to raise awareness. Thank you.
To watch this video, click on the link below:
As has been stated by Dr Sarah Jarvis and others, it’s possible that the Coronavirus could trigger M.E. in those people who get through the worst of the virus, and are seen to be in the recovery phase.
Please do not think that once you’re in that phase that you should just get back to your normal routine. As someone who has just passed his 14th anniversary with ME, the most important thing you can do is rest.
Resting should be from both physical and mental / cognitive activities.
Do not push beyond what your body is telling you. Your head might tell you something different, and you’ll be keen to make up for lost time, but please take advantage of this lockdown to recover properly. If you push beyond your limited energies now, and M.E. follows, it could change your life for years to come.
Be sensible and rest up. Take care.
The York Access Group is a Facebook group which is aimed at improving Accessibility in York for those trying to get around with a Disability. Feedback on bad, and good Accessibility of shops, streets, cafes, restaurants and any other facilities are welcomed.
It's also the place to discuss mobility aids from walking sticks to scooters. If this sounds like a group for you, you're most welcome !
As we all know, especially those who need Wheelchairs or Mobility Scooters to get around, vehicles parking on pavements and blocking our way can have a major effect on our lives. It can mean that we are likely to put ourselves in danger by going onto busy roads because of inconsiderate parking. 
If you live in Fulford York, the details of your local PCSO are below, and he should be contacted in the first instance. If he is not on duty, you may be dealt with by whoever is on duty. If you live in other areas of York, ring 101 and ask for the PCSO covering your area. In all cases, you will be required to give as much information about the vehicle and location as possible. You will NOT need to stay by the vehicle till the police arrive.
Simon Hall
PCSO 5648
North NPT
NORTH YORKSHIRE POLICE
Dial 101, press option 2 and ask for him by his full name or collar number
If using his collar number please state each number individually
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:
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."
The York ME Community
@YorkMEAwareness
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.
There has since been an All Party Parliamentary Group (APPG) formed to discuss the way ahead in helping MP's Constituents with ME. Contact your MP to ensure they're representing 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).
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 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 likely to be around 800-1,000 people of all ages in the York area with ME 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.
Those within the ME Community have always known how damaging being prescribed Graded Exercise Therapy (GET) can be to their future health. We have a broken energy production system and therefore normal rules do not apply. The PACE Trial tried to show that it helps, but has been debunked by scientists and researchers worldwide. The PACE Trial in fact is now held up as an example of how NOT to conduct such trials.
To understand better the truth of GET and The PACE Trial, click on the link below to watch two short videos.
We are the ME/CFS Biomedical Partnership, a collaboration between researchers and people with ME/CFS, carers and the public.
The DecodeME DNA study aims to help us understand the disease and ultimately find treatments.
To read more, or get involved, click on the link below:
This is open to any organisation looking to have a bit of fun whilst supporting your local community. We're underway now for the current season but will be recruiting teams for our 6th season around July 2021. Although the aim is spreading ME Awareness, as a bonus we have also raised over £920.00 for Invest in ME Research, so why not join us ?
To join in for next season, click on the Fantasy Football League tab at the top of the site for all the information you'll need.
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 |
To read the ME Research Summary 2019 by ME Action covering the last ten years, 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 supported The York ME Community.
They headed off from The York Eye (Clifford’s Tower) on Sun 28 Apr on a run out to the coast, 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.
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. I will be aiming to keep up the pressure to ensure future support.
The motion put before Council with regard to support in raising ME Awareness in York was passed unanimously !
The City of York Council has followed through on their promise by lighting up the city walls and Clifford's Tower in blue over the ME Awareness Weeks since that meeting.
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The first Monday of each month at 11 am - The York ME Community Coffee Club at Bar Convent, 17 Blossom Street, York. There is parking available just around the corner at Nunnery Lane Car Park. Blue Badge holders can park for free.
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The third Wednesday of each month - at 2 pm - The York ME Community Coffee Club at The Novotel, York. Parking is free at the hotel.
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Weekly - Every Wed, 8 pm - 9 pm on Twitter, ME Awareness Hour using the #MEAwarenesshour hashtag.
