Myalgic Encephalomyelitis
By Jamison Hill in Jamison Writes. I’m going to keep this post short because, to be honest, I’m burnt out and a few hundred words is all I can muster at this point. For the last several years, I’ve been devoting pretty much all of my free time to getting my book […]
A bit of a breakthrough on the BBC 2 Horizon programme where Dr Strain explains to Dr Xand van Tulleken that ME, a physical illness, will be gaining research based on the Long-Covid situation. It’s only a couple of minutes long, but worth a watch ! To watch the video, click on the […]
ME & Me is a brand new site for local ME sufferers to access information, news and support all in one place! Due to my increasing ME activism, I’ve launched the site as a platform and safe space for local ME sufferers. Since organising Leeds first ever Millions Missing protest in 2019 I’ve become part […]
From ME Research UK. Principal investigators Dr Nuno Sepúlveda & Prof. Carmen Scheibenbogen. Background and Aim. The emergence of so-called ‘long COVID’ has highlighted the potential long-term health consequences of infection with a virus like SARS-CoV-2, leading to symptoms such as fatigue, muscle pain and brain fog that may last for weeks or months. […]
By Frances Ryan in The Guardian. As lockdown continues, exercise is often touted as one of the best ways to promote good mental health. But as good as running and cold swimming are if they work for you, they do not appeal to everyone. Nor are they an option if you are ill, injured […]
By Kate Stanforth in WheelAir. Kate Stanforth shares her story, from being an active young girl, to developing a chronic illness and navigating ESA, DWP and public opinion. I’m going to open this by saying that this is the most honest blog I have ever written. It’s on a subject that I know lots […]
By John Pring in Disability News Service. The Department for Work and Pensions (DWP) has finally agreed that all disabled people being assessed for personal independence payment (PIP) will be able to have their face-to-face assessments recorded. The promise has come in a letter to the Right to Record action group, a disabled-led […]
By Victoria Strassheim, Julia Newton & Tracy Collins in ME Research UK. Key findings Very little research has been conducted in people with severe ME/CFS, partly because their health burden make it difficult for them to engage in studies Interviews with five people with severe ME/CFS explored their lived experience, challenges to everyday life, and management […]
By a Staff Writer at The Ohio State University College Of Medicine. Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and Gulf War illness are complex, chronic diseases with overlapping symptoms and no definitive way to diagnose or differentiate between them. The one symptom they share in common is long-term, disabling fatigue. But widely varying symptoms affecting […]
By David Tuller, DrPH It’s been ten years since The Lancet published the first results of the PACE trial. Wow! Ten years ago, I was 54 years old and still a graduate student in public health at UC Berkeley. I was also busy writing stories for The New York Times about the mouse retrovirus research that had roiled […]
By Cort Johnson in Health Rising. Cortisol, our body’s main stress hormone, has an amazing reach. Given the effects it has on our metabolism, inflammation, blood pressure, blood sugar, energy production and even the sleep-wake cycle, it’s no surprise that researchers early on latched onto signs of cortisol problems in chronic fatigue syndrome (ME/CFS) and […]
From ME/CFS Skeptic. Canadian historian Edward Shorter is one of the most influential writers to have dismissed the illness myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). In his articles, Shorter has described ME/CFS as a “trendy non-disease”, “a psychic epidemic” and a “pseudo-disease that does not exist.” Because Shorter’s work is still being cited, this blog […]
By Rachel Green and Wendy Rhodes in Weighted Blanket Guides. Post-Traumatic Stress Disorder (PTSD) is a psychiatric disorder that affects 7.7 million Americans every year. PTSD can occur in individuals who have witnessed or experienced a traumatic event, causing them debilitating stress. Some of the common causes of PTSD include war/combat, natural disaster, violence against […]
From Science For M.E. This thread has a Science for ME ‘News in Brief’ post for each week in February 2021 written by a team including @Trish, @Kalliope and @ahimsa. Scroll down to see this week’s news. To read the rest of this update, click on the link below: Link to February Update
by Jennifer Trueland in BMA. Long COVID is a new condition, but those who have endured years of ME/CFS can share their common experience – and a long history of being misunderstood. When it was becoming clear that COVID-19 was a serious issue early last year, Nina Muirhead (pictured) had a strong suspicion about […]
Updated by Rachel Bartholomew BA (Hons), Dip ION, mBANT, CNHC, GHW in Nutri Advanced. Despite the best marketing efforts of a huge drinks company, energy is not something you can buy in a can. Energy is actually something that your body makes. You supply the raw ingredients (aka food) and your body quickly gets to work on […]
By Jeff Woods in Health Rising. (Jeff Wood’s remarkable recovery following spinal surgery to correct craniocervical instability (CCI) and tethered cord shocked the ME/CFS community. It’s safe to say that almost no one saw that coming. In this piece Jeff – the former ME/CFS patient who started all this off – proposes that the pain, fatigue, […]
Listen To ME Good morning television My company for the day I hope you haven’t missed me While I’ve been away I’ve been in bed, not well you see There’s a big long word But we call it M.E. Used to be out there Working and doing ‘stuff’ Then one day, whilst away I […]
From #MEAction UK. #MEAction UK has written to the chairs of the Coronavirus All Party Parliamentary Group (APPG) and the Myalgic Encephalomyelitis APPG requesting they collaborate. We have highlighted 3 specific areas of overlap that could benefit from a collaborative approach: Graded exercise, post-exertional malaise and NICE guidelines Misleading and potentially dangerous advice […]
From ME Research UK. Following last week’s introduction to the brain, here is an overview of some of the brain research conducted in ME/CFS in recent years, and how it has helped us understand more about the illness. The World Health Organisation has classified ME/CFS as a neurological disease, and brain inflammation has long […]
By Cort Johnson in Health Rising. How fibromyalgia, chronic fatigue syndrome and allied diseases are so different from diseases like rheumatoid arthritis. Fibro-fog, brain-fog, chemo-fog… It can get pretty dim out there if you have fibromyalgia (FM), chronic fatigue syndrome (ME/CFS) and environmental illness (EI). If you have these conditions and feel like you’re […]
From MDPI. Special Issue Information Dear Colleagues, Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a systemic disease that affects the central nervous system, the immune system, cell energy metabolism, the autonomic nervous system, etc. The main clinical sign is persistent chronic fatigue that is not relieved by rest and lasts for more than six […]
By: Nancy Klimas, MD, Director, INIM Veterans with concerns related to Gulf War illness have a lot in common with ME/CFS patients, so my advice to them is the same. See the article below. I have been asked this question dozens of times over the past week. This is my opinion – […]
As you will know, Hansard is an edited verbatim record of all matters discussed in Parliament and records all votes and written ministerial statements. You may be interested in when ME has been mentioned, and so a link to that record is below.
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 !
To watch the video of Carol Monaghan MP addressing Parliament on M.E., click on the link below:
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:
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 York, and you see a vehicle parked across a dropped kerb, call the council's hotline on 0800 138 1119 and the Civil Enforcement Officers will respond and are able to issue tickets. We know this won't help you right then and there, but the hope is that the more people report it, the more people get tickets, then slowly behaviour will start to change.
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
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.
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.
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.
Dr Byron Hyde has dedicated his medical career to looking into M.E.
In this interview Dr. Byron Hyde, founder of the Nightingale Research Foundation in Ottawa, Canada, emphasizes the brain and enteroviruses. He also emphasizes his belief that Myalgic Encephalomyelitis and Chronic Fatigue Syndrome are separate issues.
To watch this interview on YouTube, click on the link below:
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.
