By Cort Johnson in Health Rising. Ronald Reagan said to Gorbachev, “Take down that wall!” and it did ultimately fall. The ME/CFS version of that might be, “Get rid of those stubborn psychiatric ideas!” It’s a cultural problem. The authors pointed out that anytime a physician sees a patient with unexplained fatigue, their default […]
By Cort Johnson in Simmaron Research. Most chronic fatigue syndrome (ME/CFS) studies focus on females, but for once we have a study contrasting females and males. It makes sense that this group – hailing from Dr. Klimas’s Institute for Neuroimmune Studies, the University of Miami, the Veterans Center in Miami, the University […]
By Cort Johnson in Health Rising. Please note, if it’s not obvious, that I’m not a doctor – I’m a patient. Take these musings as you will. We don’t know if people with ME/CFS or FM are more at risk of: a) getting COVID-19; or b) coming down with a severe case of […]
By Cort Johnson in Health Rising. “It comes down to the simple fact that I do not have enough energy to sustain my recovery. I am not sure that everyone in the CFS is like me, maybe I’m an outlier or just have a unique presentation of the condition. In any case I […]
By Cort Johnson in Health Rising. The most primitive part of the brain, the brainstem – a part of “the reptilian brain” – doesn’t get much respect in medical research. VanElzakker pointed out that most brain scan studies focus on the upper, more highly developed parts of the brain. Because brain imaging techniques can’t […]
By Cort Johnson in Health Rising. It was a project birthed in hope. Pal Schaathun, a Norwegian filmmaker would document what he hoped might be the end of chronic fatigue syndrome (ME/CFS). That, unfortunately, turned out not to be but Schaathun ended up documenting – in strikingly beautiful fashion – the next best […]
By Cort Johnson in Health Rising. The Ron Tompkins Effect Ron Tompkins had recently come back from a meeting with over a dozen MD’s and specialists from Mass General Hospital who’d evinced a strong interest in ME/CFS. Dr. Bateman has said it’s easy to get researchers, at least, interested in this disease but […]
By Cort Johnson in Health Rising. In 2015, Dean Echenberg, MD, PhD, a former public health official and Director of Disease Control in San Francisco at the height of the HIV/AIDS epidemic, had a question. His own course of ME/CFS had been anything but smooth. Echenberg had experienced years of illness punctuated sometimes […]
By Cort Johnson in Health Rising. The talk was titled, “Now for Something Completely Different: A microbe hunter turns to ME/CFS”. Except that Ian Lipkin is not just any microbe hunter: for many people, he’s THE microbe hunter. Internationally known for his breakthrough work on Bornavirus, SARS, MERS, tick-borne illnesses, and others, and his […]
By Cort Johnson in Health Rising. David Systrom, a Harvard pulmonologist, uses invasive CPET tests to find that oxygen extraction problems at the muscle level are common in ME/CFS. Chronic fatigue syndrome (ME/CFS) has a reputation for falling through the cracks. Test after test is run to no avail. From the […]
By Cort Johnson in Health Rising. It’s the simplest of medical tests. The erythrocyte sedimentation rate (ESR or SED rate) test simply measures the rate at which the red blood cells in whole blood descend in a test tube over a period of one hour. This non-specific measure of inflammation works because, during an inflammatory process, […]
By Cort Johnson in Simmaron Research. The immune system in chronic fatigue syndrome (ME/CFS) has been kind of like a mirage in the desert. Given the way the disease starts and its symptom presentation – so close to the “sickness behavior” produced during an infection – it seems that the immune system must […]
By Cort Johnson in Health Rising. Pain – A Surprisingly Complex Experience Pain seems pretty elementary – it hurts! When it really hurts, you want to throw yourself out of your skin. It’s actually not so simple. Pain is often described as a complex, “biopsychosocial phenomenon“. The International Association for the Study […]
By Cort Johnson in Health Rising. I met Dr. Chheda of the Center for Complex Diseases at Ron Davis’s Working Group Meetings funded by the Open Medicine Foundation. She graciously agreed to talk more about how she approaches treating ME/CFS in her practice. I was particularly eager to talk to one of the younger […]
By Cort Johnson in Health Rising. Just about everyone with chronic fatigue syndrome (ME/CFS) has the sense that the disease has an astonishing ability to fall through the cracks. It’s a major disease that affects around a million people in the U.S. yet gets very little funding. It has no home at the NIH; it […]
By Cort Johnson in Health Rising. The similarities are striking: the symptoms, the shoddy research funding, the poor treatment from doctors, the gender imbalance and the stigma both still face. Both diseases still really exist on the fringes of medicine and medical research. Yet one disease is moving forward rapidly and the other […]
By Cort Johnson in Health Rising. “…many of these people spout nonsense and then freak out when confronted with facts or details about the research that they can’t explain away.” David Tuller David Tuller is a unique figure in the ME/CFS universe. A reporter and editor for the San Francisco Chronicle, Salon and […]
By Cort Johnson in Health Rising. Were you an avid exerciser prior to becoming diagnosed with chronic fatigue syndrome (ME/CFS)? Are you sure you were diagnosed correctly? Symptomatically, overtraining syndrome (OTS) and ME/CFS appear almost identical. Symptoms like fatigue, pain, post-exertional malaise, sleep problems and cognitive issues pervade both “syndromes”. If it was […]
By Cort Johnson in Health Rising. Chronic fatigue syndrome is a terrible name. It’s such a terrible name that you have to give the people around you a little break. With that name, they’re almost doomed, at least at first, to think ME/CFS is a milquetoast kind of disease best suited to […]
By Cort Johnson in Health Rising. Dr. Chheda’s Road to ME/CFS I met Dr. Chheda of the Center for Complex Diseases at Ron Davis’s Working Group Meetings funded by the Open Medicine Foundation. She graciously agreed to talk more about how she approaches treating ME/CFS in her practice. I was particularly eager to talk to […]
By Cort Johnson in Health Rising. In February of last year, Health Rising announced an unusual event was going to take place: a small drug company named Cortene was going to trial a new drug for chronic fatigue syndrome (ME/CFS). Cortene’s trial was unique in a number of ways. For one, it involved ME/CFS […]
By Cort Johnson in Simmaron Research. Dr. Maureen Hanson leads one of the three NIH funded ME/CFS research centers, but her ME/CFS research doesn’t stop there. Using samples from Dr. Daniel Peterson provided by the Simmaron Research Foundation, she’s also been assessing the metabolism of one of the most important cells in […]
By Cort Johnson in Health Rising. For the relief of certain kinds of pain, I believe, there is no more useful medicine than Cannabis within our reach. Sir John Russell Reynolds 1859. This is the third part of a five-part series on the use of Cannabis in chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM). […]
By Cort Johnson in Health Rising. It seemed ever so clear. The reduction in the number of small nerves in the skin and eyes of roughly forty percent or so of the people with fibromyalgia (FM) and chronic fatigue syndrome (ME/CFS) must bring the body – as opposed to the brain – into […]
By Cort Johnson in Health Rising. Times are changing. The Stanford area with its bevy of researchers and doctors (Ron Davis, Robert Phair, Mark Davis, David Kaufman, Bela Chedda, Jose Montoya, Rahim Esfandyapour, Michael Zeineh, Fereshteh Jahanbani and others) seemed like “it” for ME/CFS. But look at Boston now! A new hub […]
By Cort Johnson in Health Rising. ME/CFS Rears Its Head Again A commitment to social justice runs in Carol Head’s blood. She founded a non-profit which has given away millions to support entrepreneurs who work on global poverty, and was a founding board member of another non-profit that tells the stories of marginalized women’s lives. Her work […]
By Cort Johnson in Health Rising. This is the first in a series of blogs that report on the recent EMERGE conference in Australia. The different conference format – which allowed for long presentations – allowed the presenters to dig more deeply into their topics than usual. Longtime Australian metabolomics researcher Neil McGregor […]
By Cort Johnson in Simmaron Research. BV has been a virus of interest since almost day one in chronic fatigue syndrome (ME/CFS). In fact, at one point, EBV was such a hot topic that ME/CFS was called for a time “chronic Epstein-Barr virus” disease. While studies have generally failed to find evidence […]
By Cort Johnson in Health Rising. when you get it right you pass it on… Gary Snyder When things go wrong, the “If only I had known! “, “If only I could have that back!” mantra shows up in spades. Of course, we all make mistakes – major mistakes – that we wish we could […]
By Cort Johnson in Health Rising. The news of Dr. Montoya’s termination from his Stanford medical practice and center hit the ME/CFS community hard. The possible loss of even one practice is alarming, even to people who would never have the opportunity to visit that practice. Maybe now is a good time to […]
By Cort Johnson in Health Rising. The Spinal Series This is part three of a series examining spinal issues which may mimic chronic fatigue syndrome (ME/CFS) and fibromyalgia. The first two in the series involved two very ill ME/CFS patients who have recovered or are recovering following surgery to correct craniocervical instability. Could […]
By Cort Johnson in Health Rising. The Spinal Series This is part three of a series examining spinal issues which may mimic chronic fatigue syndrome (ME/CFS) and fibromyalgia. The first two in the series involved two very ill ME/CFS patients who have recovered or are recovering following surgery to correct craniocervical instability. Leader in the […]
If you wish to apply for a Blue Badge in the York area, or wish to know if you qualify, click on the link below:
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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.
The 15th Invest in ME Research International ME Conference 2020 - IIMEC15 - will take place on 30th May 2020 in London.
15 years of researchers, clinicians and patients interacting.
More details of the conference day will be announced in the coming months. It will be preceded by the 10th Invest in ME Research International Biomedical Research into ME Colloquium - BRMEC10 - a two day closed researchers' meeting with researchers from around the word, and the third year of a full day Thinking the Future - Young/ECR Conference for young and early career investigators.
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:
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.
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 aim is to share ideas in promoting various disability services, whilst continuing to raise Awareness of ME through both organisations. Through their #Think Access group and our own group, The York Access and Mobility Club, we will be looking at accessibility issues in the York & Harrogate areas, with the aim of advising on suggestions for change.
Disability Action Yorkshire aim to find solutions for disabled people whatever their aspirations. Whether you are a disabled person or support someone who is, they are here to support you. They provide a range of services, from training to accommodation and help with independence, among others. To find out more about Disability Action Yorkshire, click on the link below:
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
Access Your Life is a site run by Felix and Lauren, with a little input from Fliss, the dog!
The site is full of great information that I feel will benefit many within The York ME Community and beyond.
To go to Access Your Life, click on the link 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 !
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) is available on Amazon and iTunes and through the Unrest UK Store on DVD and Blu-Ray by clicking on this link: Unrest site
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.
To go to the Government's Disability Benefits Advice Guide, click on the link below:
Mike Harley is a very special guy who's aim was to run a marathon in each EU country to raise awareness and funds for Invest in ME Research. Please visit his site to learn more, especially since our exit from the EU has meant a revision of his plans !
The Changing Places Consortium launched its campaign in 2006 on behalf of the over 1/4 of a million people who cannot use standard accessible toilets. This includes people with profound and multiple learning disabilities, motor neurone disease, multiple sclerosis, cerebral palsy, as well as older people.
To use the toilet in safety and comfort, many people need to be able to access a Changing Places, which have more space and the right equipment, including a height adjustable changing bench and a hoist.
To find out more, click on the link below to go to the Changing Places website.
The York Access and Mobility Club 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 !
![old-telephone[1]](http://www.york-me-community.org/wp-content/uploads/2015/10/old-telephone1-300x240.jpg)
Accessibility
Dial & Ride: 01904 551441
Shopmobility: 01904 679222
York Wheels: 01904 630080
Helplines
NHS Health Enquiries (non emergency): 111
Samaritans: 01904 655888
York Hospital: 01904 631313
Patient Transport Service: 01904 630080
Benefits Service: 01904 551556
Local MP's
York Central Rachel Maskell: 01904 784847
York Outer Julian Sturdy: 01904 784847
Thirsk & Malton Kevin Hollinrake: 01347 666880
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.
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.
To order the book through Jessica's site, click on the link below:
This book is also now available at York Library
This is open to any business, club, pub, or organisation looking to have a bit of fun whilst supporting your local community. Our 4th season is well under way and going great guns ! 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 tab at the top of the site for more information, or just to register your interest through the email address supplied.
To read the ME Research Summary 2019 by ME Action covering the last ten years, click on the link below:
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 |
There is a great need for the training of those with a Duty of Care to those with Myalgic Encephalomyelitis (ME) or Chronic Fatigue Syndrome (CFS). For those in Healthcare, Education or Business with this Duty of Care, this E-Learning Course is the one for you.
To learn more, click on the link below:
AccessAble in York provides information on Shopmobility, Talking Signs, Dial & Ride, York Wheels and accessible Hotels, Restaurants, Public Toilets and a whole lot more in our city. To find out more before setting off for York, 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.
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 !
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.
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.
