From BMJ Opinion. “Has covid-19 gone?” My first thought every morning for six months. A few weeks ago, I was jubilant. The muscle aches had evaporated, my head was clear. I announced this to Rachael, a friend who knows chronic fatigue well. “Fantastic, Paul. You have found your baseline.” Crestfallen, I realised this […]
By Linda Geddes in The Guardian. Six weeks after contracting Covid-19 in April, Dr Amy Small felt well enough to attempt a walk around Holyrood park in Edinburgh with her young family. Her kids wanted to climb Arthur’s Seat – the craggy hill at its centre. Thinking it would be OK if she walked slowly, […]
LIVING LIFE ‘LIGHT’ WITH M.E. When ME strikes We know the score Our lives won’t be As they were before We learn to pace Wind things down Cut things out Try not to drown Living on the edge of fun As if your life is all but done In the shadows, out of sight […]
By ME/CFS Skeptic. In a previous blog, Evelien and I argued that ME/CFS is getting less research funding than illnesses with a comparable prevalence and disability. In this article, we will try to get a better understanding of why ME/CFS gets so little research funding. Many causes have been proposed such as stigma, lack […]
From the ME/CFS Clinician Coalition USA. “Striking the right balance between activity and rest is one of the most difficult aspects of coming to terms with M.E. On one hand is the need to take an appropriate amount of rest and relaxation, especially during the very early stages, as well as during periods of […]
By Brian Hughes in The Science Bit. The newly released draft NICE guidelines for the management of “myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome” continue to cause a stir. And rightly so. The new guidelines not only repudiate a heretofore favoured treatment approach for a particular illness, they also threaten to discredit an entire (albeit quirky) branch of medicine — […]
Written by Di in Stanford Wood Studio. Di has had a fascination with beautiful handmade items all her life and always had a yen to try making some herself, yet forever found herself putting it off. She got to the stage where she thought, if not now; when? And that’s how she […]
By MElivit. On November 10th 2020, English health authorities published a draft of a new set of guidelines for ME/CFS. It is confirmed that ME is a physiological disease, and it is advised against therapy and exercise as treatment. It is especially warned against the Lightning Process (LP). Read more here: English health authorities reject […]
By Valerie Eliot Smith in Law and Health: due process and civil society. Note: this post runs at 2270 words. It falls naturally into two sections of approximately the same length. ************** The blog has been rather quiet for a while. While my day-to-day work does not stop, my ability to write blog posts is […]
Despite NICE potentially dropping Graded Exercise Therapy as a treatment for ME, it’s still being suggested by GP’s to those with Long-Covid that they should exercise more as a way out of it. If your GP recommends exercise, please ignore, as it is very likely to make you worse.
By Gem Turner in WheelAir. At the time of posting this, it’s Disability History Month in the UK. It’s not very widely known – and when I talk about it, it gets a lot of questions from people. The main one is something like “it’s quite good for disabled people now though isn’t […]
By DAVID TULLER and STEVEN LUBET in Statnews.com. irrational fears they had an organic illness. The favored treatments were graded exercise therapy, designed to counter the deconditioning with a program of progressively increasing activity, a form of cognitive behavior therapy specifically designed to address the unfounded illness beliefs, or a combination of the two. In the […]
From Science For ME. This thread has a Science for ME ‘News in Brief’ post for each week in November 2020 written by a team including @Trish, @Kalliope and @ahimsa. Scroll down to see this week’s news. Week beginning 2nd November 2020 News, articles, videos UK NICE ME/CFS guideline The draft guideline is due to be published on […]
By David Tuller, DrPH Every year, Jennie Spotila posts her analysis of annual funding for ME from the US National Institutes of Health on her invaluable blog, Occupy M.E. (On the other hand, Occupy Me is a 16-minute gay drama from 2015 about an interlude between two guys. I have no idea if it’s any good, but looks […]
By Jean-Benoit Legault The Canadian Press. A discovery by Montreal researchers is expected to improve the diagnosis and treatment of patients with myalgic encephalomyelitis (ME), better known as chronic fatigue syndrome. In most instances, ME is currently diagnosed by elimination, as doctors put aside other possible causes of the patient’s symptoms. But researchers from the University […]
By Bill Clayton. Just a little update on the tooth extraction. I’ve just been talking about this as ME means that I needed a general aesthetic due to not being able to deal with the lights, vibrations, and the whole construction team that would have to climb into my mouth at the same time ! […]
From #MEAction. Today we announce that #MEAction’s co-founder and executive director, Jennifer Brea, is going to be transitioning to a board position so she can take time to focus on her health after five intense years of ME and advocacy. This will not happen immediately- we will be working hard to find a […]
By Brian Hughes In The Science Bit. Mark this day in your calendar. We could be observing the beginning of the end of a decades-long medical scandal. In the UK, the National Institute for Health and Care Excellence (NICE) have published new draft guidelines for the management of “myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome”. […]
After a very long wait, too long, NICE have publised their draft guidlines on the treatment of ME. It seems that at long last, and after huge pressre by the ME Community, Graded Exercise Therapy has been removed as a recommended treatment for ME. It shouldn’t have taken this long, and too many individuals […]
By Dr. Danielle Weitzer and Dr. Christie Richardson in ABC News. By this point, many people can identify symptoms of COVID-19 — fever, fatigue, shortness of breath — but fewer know that those can occur after a successful recovery and closely resemble another illness: chronic fatigue syndrome. “There may well be a post-viral syndrome associated with COVID-19,” Dr. Anthony […]
By Lorna Hayden and Marieke Pingen in The Conversation. Usually our immune system protects us from harmful microbes such as bacteria or viruses. It does this either by directly attacking a microbe, or producing an antibody which recognises and removes microbes from the body. But, in patients with multiple sclerosis (MS), their immune response is overactive, […]
By Justine Jordan in The Guardian. Sixteen years ago, Susanna Clarke’s debut novel became a publishing phenomenon. Jonathan Strange & Mr Norrell is an unlikely story of intellectual obsession, set in a Regency England in which the buried powers of English magic are reawoken by two scholar magicians. The prose style mashes together Jane Austen […]
By Samantha Renke in the Metro. I have a confession: I seem to have fallen out of love with London, something I never thought would (or even could) happen. Having moved to the Big Smoke almost nine years ago to follow my dreams and live independently, I imagined spending the rest of my adult […]
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.
