By Cort Johnson in Health Rising. A riff on Dr. Peter Rowe’s presentation at the 2020 Dysautonomia International Conference (note that I expand on many of Rowe’s points; i.e. not all the words are his.) Lauren Stiles, the founder of Dysautonomia International, has long believed that the chronic fatigue syndrome (ME/CFS) and dysautonomia fields […]
By Cort Johnson in Health Rising. Ivabradine appears to work quite well in POTS – but should we stop there? Ivabradine was approved for use in the European Union in 2005, but it’s pretty new to the scene in the U.S. It was FDA approved in only 2015. That means it doesn’t have much […]
By Cort Johnson in Health Rising. As time has gone on, the energy production issue in chronic fatigue syndrome (ME/CFS) has become better and better documented as researchers take different slants on it. Take the whole body energy production tests. Workwell’s two day cardiopulmonary exercise tests (CPETs) have documented the damaging effects that exercise one day […]
By Cort Johnson in Health Rising. Question: When does a graded exercise study explain why graded exercise is not helpful for chronic fatigue syndrome (ME/CFS)? Answer: when it employs an exercise test with it. Just as NICE was pulling back on graded exercise therapy (GET) a GET study was published showing why it doesn’t work. The authors […]
By Cort Johnson in Health Rising. This blog is one of a continuing series of blogs that are attempting to peer into the future and see what treatments possibly await us. This blog provides an overview on CoQ10 – what forms work best and how to take it – and then takes a look at […]
By Cort Johnson in Simmaron Research. The failed Rituximab trial might seem like the death knell for autoimmunity in chronic fatigue syndrome (ME/CFS) but it’s not – not by a long shot. While the B-cells that Rituximab targeted are at the heart of much autoimmunity, T-cells can also cause autoimmune diseases. They also play a […]
By Cort Johnson in Health Rising. It’s Whitney Dafoe’s 37th birthday. He’s had chronic fatigue syndrome (ME/CFS) since 2004 and has been severely ill since about 2012. Fed by feeding tubes, eyes and ears covered, too weak to move, unable to speak or tolerate almost any stimuli. Whitney has hovered in a kind of […]
By Cort Johnson in Health Rising. The exercise physiologists at the Workwell Foundation are pretty darn good at providing thought provoking case reports. A couple of years ago, a Workwell case report indicated that a very ill ME/CFS patient was able, using Workwell’s heart rate-based exercise program, to not just halt the steady decline […]
By Cort Johnson in Health Rising. The two Dutch researchers, C. Linda van Campen and Frans Visser, and Peter Rowe from the U.S., have been on a tear recently. The Van Campen/Visser team (mostly with Peter Rowe) have published 6 ME/CFS studies thus far in 2020, one in 2019 and three in 2018. This […]
By Cort Johnson in Health Rising. “If you look anecdotally, there is no question that there are a considerable number of individuals who have a post-viral syndrome that in many respects incapacitates them for weeks and weeks following so-called recovery. They report symptoms such as brain fog, difficulty concentrating and fatigue that resemble the […]
By Cort Johnson in Health Rising. Travis Craddock heads Dr. Klimas’s biocomputational modeling team at the Institute for Neuroimmune Medicine (INIM) at Nova Southeastern University. This is the team responsible for crunching the hundreds of thousands of data points gathered from Dr. Klimas’s intensive exercise studies into a massive model of how the […]
By Cort Johnson in Health Rising. Chronic fatigue syndrome (ME/CFS) and fibromyalgia (FM) produce so many symptoms that diagnosing them can be difficult for uninformed doctors. While we know that small fiber polyneuropathy (SFPN) (or small fiber neuropathy (SFN) commonly occurs in both these diseases, what I didn’t realize until I read the […]
By Cort Johnson in Simmaron Research. “Testing is so important to everyone in our community, especially front-line workers and people who are at higher risk of severe disease. Simmaron is excited to serve our neighbors and lead the way to broader testing, so we help keep Nevada safe and learn more about this […]
By Cort Johnson in Health Rising. Mackay A, Tate WP. A compromised paraventricular nucleus with a dysfunctional hypothalamus: a novel neuro-inflammatory paradigm for ME/CFS. Int J Immunopathol Pharmacol. 2018:32:1-8. The HPA’s nexus in two important systems – the stress response and the immune system, both of which almost everyone believes are impaired in ME/CFS – […]
By Cort Johnson in Simmaron Research. “Testing is so important to everyone in our community, especially front-line workers and people who are at higher risk of severe disease. Simmaron is excited to serve our neighbors and lead the way to broader testing, so we help keep Nevada safe and learn more about this […]
By Cort Johnson in Health Rising. “I have sympathy for people with chronic fatigue syndrome now, and I believe this disease fast-tracks you into experiencing these symptoms.” Paul Garner – Infectious Diseases Specialist A lot of infections can trigger chronic fatigue syndrome (ME/CFS) but in some ways SARS-CoV-2 is different in ways that reminds […]
By Cort Johnson in Simmaron Research. This is another hypothesis paper that gives one hope – and makes one wonder if the authors might have a handle on what’s happening with chronic fatigue syndrome (ME/CFS). The paper proposes that a tantalizingly simple problem – an autoimmune attack on just one receptor – out […]
By Cort Johnson in Health Rising. Unexpected synchronies are always a good sign. Many, of course, are familiar with Bob Naviaux, MD, PhD from the University of California, San Diego (UCSD). Naviaux’s metabolomic work and his Cell Danger Response (CDR) hypothesis have opened up new possible ways of understanding ME/CFS, autism and other diseases. […]
By Cort Johnson in Simmaron Health. The first SARS epidemic in 2003 featuring SARS-CoV now seems like a poor dress rehearsal for today’s SARS CoV-2 outbreak. With just 8,000 cases in total and 774 deaths, (compared to almost 1,000,000 cases and 4,000 plus deaths and rising rapidly) it seems hardly worth including in the same […]
By Cort Johnson in Simmaron Research. The first SARS epidemic in 2003 featuring SARS-CoV now seems like a poor dress rehearsal for today’s SARS CoV-2 outbreak. With just 8,000 cases in total and 774 deaths, (compared to almost 1,000,000 cases and 4,000 plus deaths and rising rapidly) it seems hardly worth including in the same sentence. […]
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 […]
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 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
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.
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:
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.
