From #MEAction. Trial Uses Flawed Methodology That Can Lead To False Positives Following the release of the results of the SMILE trial, Ben HsuBorger of ME Action said: “The SMILE trial of the Lightning Process, a known quack treatment, for ME/CFS, used unblinded treatment coupled with subjective, self-report outcomes. It illustrates that such serious […]
By Cort Johnson in Health Rising. “This is not a disease that can be solved by one person. It needs a community, and lots of expertise. I will work with anybody to do this.” Ron Davis The Working Group was impressive. Davis had Bob Naviaux to his left and Maureen Hanson next to him […]
By Adrianne Tillman in Open Medicine Foundation. Leading scientists presented their research on ME/CFS at the day-long Community Symposium on the Molecular Basis of ME/CFS* at Stanford on Aug. 12. The researchers spoke at length about the complicated biological processes involved, their study results and the limitations of their conclusions presented thus far. The […]
Mike Harley is running an amazing 26 Marathons across Europe to raise awareness of ME, and funds for Invest in ME Research. Next one up, his 12th, is on Sunday 10th of September 2017 in Vilnius in Lithuania. A part of what Mike does is to get in touch with locals in the area […]
A Review of Osler’s Web by Hillary Johnson. About the book….. The publication of Osler’s Web was both a literary event and a rare example of immersive journalism, the result of shoe leather reporting undertaken by journalist Hillary Johnson over a period of nine years. Reviewers called Osler’s Web a watershed in the history of […]
By Cort Johnson in Simmaron Research. Most people with chronic fatigues syndrome (ME/CFS) and fibromyalgia (FM) know the consequences of poor sleep – the fatigue and pain, the difficulty concentrating, the irritability and more. Sleep is when our body rejuvenates itself; no sleep – no rejuvenation. Given how important sleep is to […]
By Cort Johnson in Health Rising. Researchers and doctors get interested in ME/CFS in different ways. Many have a personal connection, but for David Systrom, a pulmonologist, it was all about demand. He didn’t seek chronic fatigue syndrome patients out – quite the contrary. When Systrom was given control of a clinical cardiopulmonary […]
Invest in ME Research has now reached the target set for the B-cell/rituximab fund. This is another major target reached and is a wonderful achievement by dedicated supporters and friends across the world. The total of funds raised or pledged for B-cell/rituximab projects is £520,000. From this the charity has already funded […]
From storify.com. On August 12, 2017, the Community Symposium on the Molecular Basis of ME/CFS (myalgic encephalomyelitis/chronic fatigue syndrome) convened ~300 researchers, clinicians, patients, caregivers, families, and advocates at Stanford University – and nearly 3000 more via live-stream. Here’s what happened. There is a debilitating, mysterious disease out there that affects […]
From the Blog, puffins&penguins&me I have been wanting to write about The PACE Trial for some time, about the background, the controversy and where we are at today. I have tried, but unlike my usual posts it is very technical, involves a lot of research and there’s a lot to cover. I just don’t […]
By Lisa M. Kreiger in The Mercury News. As a renowned Stanford scientist, Ron Davis has a deep appreciation for the power of modern medicine. And yet an explanation for the disease afflicting his own beloved son eludes him. Son Whitney, 33, suffers from such severe Chronic Fatigue Syndrome that he is bedridden, unable to […]
By Cort Johnson in Simmaron Research. There’s been a great deal of controversy and confusion surrounding ME/CFS — even whether it is an actual disease. Our findings show clearly that it’s an inflammatory disease and provide a solid basis for a diagnostic blood test.” Mark Davis There’s nothing like a high-profile study from a […]
By Andy Coghlan in New Scientist. It’s as if a switch has been flicked. Evidence is mounting that chronic fatigue syndrome (CFS) is caused by the body swapping to less efficient ways of generating energy. Also known as ME or myalgic encephalomyelitis, CFS affects some 250,000 people in the UK. The main symptom is persistent […]
By Cort Johnson in Health Rising. The Real Action – The Working Group The Open Medicine Foundation’s “Community Symposium on the Molecular Basis of ME/CFS” is coming up next week. The Symposium follows a two-day workshop – an ME/CFS research jam session that dozens of researchers and MD’s will participate in. Davis […]
From The Journal of Translational Medicine. Authors and Contributors as listed in article. Abstract Myalgic encephalomyelitis or chronic fatigue syndrome (ME/CFS) is a common and severe disease with a considerable social and economic impact. So far, the etiology is not known, and neither a diagnostic marker nor licensed treatments are available yet. The EUROMENE […]
By Leah Rosenbaum in Seeker. A recent study shows that cytokines are elevated in patients with severe chronic fatigue syndrome, potentially paving the way for a more definitive test and cure. Almost everyone feels sleepy in the morning without their first cup of coffee. But there’s a big difference between “I need caffeine” fatigue […]
From Stanford Medicine. Researchers at the Stanford University School of Medicine have linked chronic fatigue syndrome to variations in 17 immune-system signalling proteins, or cytokines, whose concentrations in the blood correlate with the disease’s severity. The findings provide evidence that inflammation is a powerful driver of this mysterious condition, whose underpinnings have eluded researchers for […]
By Giorgia Guglielmi in Science. After a 5-month road trip across Asia in 2010, 22-year-old college graduate Matthew Lazell-Fairman started feeling constantly tired, his muscles sore and head aching. A doctor recommended getting a gym membership, but after the first training session, Lazell-Fairman’s body crashed: He was so exhausted he couldn’t go to work as […]
From the Institute For Neuro Immune Medicine Thank you for your interest in the ME/CFS Genes Study! We are currently recruiting ME/CFS patients AND Healthy Controls for this completely web based study to create a one of a kind genetic database for individuals with ME/CFS. Participation for this study requires you to have a computer […]
From Centre for Welfare Reform. A Special Issue of the Journal of Health Psychology on the PACE Trial, is to be published and freely available online on Monday 31 July 2017. It marks a special contribution of the Journal of Health Psychology to the literature concerning interventions to manage chronic health problems. The […]
By Cort Johnson in Simmaron Research. The NIH’s Intramural Study on ME/CFS now underway is almost certainly the most comprehensive chronic fatigue syndrome (ME/CFS) study ever done. In fact, it may be one of the more multi-faceted studies done in any disease. It’s breadth is astonishing. Besides the blood, urine, fecal matter […]
19 May 2017.
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.
17 May 2017.
“We are now at Tingri which is the last stop before Everest Base Camp, the plan is to head to Base Camp early tomorrow morning.
Unfortunately two of our team have been hospitalised with quite serious cases of Altitude Mountain Sickness which can be unpredictable and affect different people in different ways, unfortunately their ride is over and they will be transferred back to Lhasa hopefully within 3/4 days. Naturally the team is extremely disappointed for them, so close to seeing and experiencing Everest. Our thoughts and spirits are with them. Today’s photo of the Flag on route was taken at the entrance to Mt Qomolangma National Park at an elevation of 5248 mtrs which is the highest we should be going. “Qomolangma” is the Tibetans name for Everest. In 2012 this area was awarded the National Park status, it is the highest national park in the world and covers 78000 sq kms. It holds 5 peaks over 8000 mtrs – Mt Qomolangma (Everest), Mt Shishapangma, Mt Chi Oya, Mt Lhotse and Mt Mhakalho.
The park is a holy land for scientists, mountaineers, tourists and pilgrims.
13 May 2017. ME Awareness Flag Update from the group heading to Everest Base Camp for The York ME Community / Invest in ME !
“Here it is on display inside the Potala Palace in Lhasa, built in 7th century and home of Dali Lamas and the centre of local Tibetan Government. Has over a 1000 rooms. Just after this we were approached by Chinese officials who confiscated the flag, obviously with hindsight westerners openly displaying and photographing a flag inside such a highly politically sensitive area was a bit suspect and ignorance on my part.
Anyways eventually they allowed me to continue with the tour. At the end I went back to try to collect the flag but main entrance was closed, there was me in a ludicrous position of banging my fist on the Dali Lamas main door shouting “hello, hello” anyone home” no one answered, only advice I got from a colleague was “pretend you are planting something and I bet the police come running” not entirely wise.
Anyways found a side entrance and a surprisingly helpful security guard, they confiscated 4x flags that day but couldn’t find mine. Eventually they got it, returned it and wouldn’t accept a tip so all good and faith in human being truly restored.”
More updates to follow as I hear back from the guys !
12 May 2017. Just to let you know that The York ME Community / Invest in ME Flag has reached Lhasa in Tibet, on its way to be raised at Everest Base Camp for ME Awareness ! Future communications might be difficult with the Internet and emails in Tibet being controlled by the Chinese, but hopefully it’ll make it !
FEATURED ARTICLE
By
Sally Duffin
Hello to all the members of York ME Community. I’m Sally, a Naturopathic Nutritional Therapist at ‘Nutrition in York’ and Bill has asked me to share some nutritional therapy approaches for managing ME.
Many nutritional therapists – myself included – are trained in the Functional Medicine approach to healthcare which means we are less concerned with the name of a condition (ME, CFS etc.) and more interested in the underlying cause and contributing factors of the condition. (more…)
The Coffee Club
Our Coffee Club meets on the third Wednesday of each month for a cuppa and a natter at The Novotel York.
Our next get together is on Wednesday 18 October at 2 pm. The Coffee Club is open to anyone either with ME, or friends and family looking for support from people who understand.
Due to the nature of the illness, there will be times when numbers are low, but if you'd like to attend, either just turn up on the day, or email me at bill@York-ME-Community.org. If you're a member of our Facebook Group (below), you can of course say you'll be going via the Events area.
STOP PRESS: There will be a Morning Coffee Club on Monday 2 October at 11.00 am at The Bar Convent on Blossom St,York to provide a chance for those who would like to get together for a natter and a cuppa who can't always make it to the usual afternoon gathering.
Raising ME Awareness At York Explore Library
Friday 28 July 2017
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 it themselves who now know we're here for them.
Thanks to the Anne twins, Mal and Dionne who turned out to man and woman the table, but also to all who were there in spirit and would have been there in body but for a certain little beasty we all know so well......
More to come on York TV........
Our Facebook Group
The social element of this site is via a Facebook Group called The York ME Community.
This is available to people in the York area looking for help, advice and support, whether those diagnosed, family or friends. We are a close knit group who discuss more than just ME, as we like to think that we are not defined by this illness. We discuss every day things, have a laugh, and try to meet on a monthly basis if the beast that is ME allows us ! If you apply to join, please check your Facebook messages, as I tend to get in touch for a quick 'chat' before adding applicants to the group.
Please don't apply to join if you are promoting your preferred remedy. I'm happy to mention your company within the group, but it's for individuals to choose what they wish to try in their battle to seek an improvement in their health.
Congratulations to Bransby Wilson Ltd, the York based Parking Solutions company who have won The York ME TGA Inter Company Fantasy Football League sponsored by TGA Mobility for season 2016/17.
The second season has just got underway ! With the aim of raising ME Awareness, it has attracted 10 business teams, including two from Belfast, up on last year, raising over £400.00 for Invest in ME Research.
Why not put it in your diary to join us next season ? Take the opportunity to support your local community and raise the profile of ME Awareness, an illness that affects around 800 people in the York area alone, with 200 being severe, meaning house or bed bound. Tomorrow it could hit you or one of your family, so you could be helping yourself too.........
Hopefully, even more teams from across the country next season.....
Calling On All York Businesses !
Would you like to help your local community ? By current research, there are around 800 people in the York area suffering from Myalgic Enecephalomyelitis (ME). This might include the work colleagues you haven't seen in some time, or your friends and family, maybe one of the lads that hasn't turned up for five-a-side for a while.
There is information above to explain how it affects people and ruins lives. These are your neighbours; would you like to help ?
The York ME Community is here to help support those in the area in need whilst raising awareness. Unfortunately, this is hard to do when you have the illness ! I'm looking for more foot soldiers to spread the word. Can I come into your workplace and chat to your HR Staff maybe ? It could be that ME is having an effect in your workplace.
How would you like to take part in our online Inter Company Fantasy Football League in support of Invest in ME Research ? Nestle of York have already donated a prize to the business team that was top of the league at Christmas and there's a trophy to be had at the end of the season. Why not enter a team for next season ?
Is your business taking part in any runs coming up such as The London Marathon, The Great North Run, or maybe something similar ? If you haven't decided on what cause to run for, what about Invest in ME Research ? Any donations can be passed via the Just Giving link at the top of the site, but I'd also be able to advertise your generosity and your business name to thousands across the world via our social media connections.
There are lots of things going on locally to try and raise awareness, but we need your help to help others. Please get in touch. Be a part of your community. The York ME Community. Thanks.
