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 […]
By Cort Johnson in Simmaron Research. Giardia hasn’t historically ranked high as a potential cause of chronic fatigue syndrome (ME/CFS). Some anecdotal reports suggest that a Giardia outbreak may have occurred prior to the Incline Village ME/CFS outbreak in the 1980’s. More recently, Corinne Blandino’s severe, decades long case of ME/CFS – which originated with […]
From The Quadram Institute. A coordinated, collaborative approach is vital to understanding the origins of this complex, debilitating condition. Myalgic Encephalomyelitis (ME), also known as Chronic Fatigue Syndrome (CFS), is a severely debilitating condition that is thought to affect up to 250,000 people in the UK. Symptoms include widespread pain, extreme tiredness […]
By Cort Johnson in Health Rising. The Lancet — one of the most highly regarded journals in the world — is back on the chronic fatigue syndrome (ME/CFS) community’s front page. That’s probably enough to either elicit curses from ME/CFS patients or to produce a strong desire to hide under one’s bed. […]
From Biomed Central. Authors as listed. Abstract Background There are considerable phenotypic and neuroimmune overlaps between myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) and multiple sclerosis (MS). While the precise aetiologies of both MS and ME/CFS are unclear, evidence suggests that deterioration in cognitive function is widely prevalent in patients with either condition. Little […]
From Open Medicine Foundation. Ron Davis: There is a great deal of evidence that a variety of viruses can initiate ME/CFS, but it is less clear that a virus is involved in sustaining the disease. However, some patients may have a continuous problem with viruses, especially those viruses we always carry like […]
From TraceyDuvall.com. In a recent paper, Dr. Willy Eriksen proposes a complete explanation for the development, diversity, and persistence of myalgic encephalomyelitis, aka chronic fatigue syndrome (ME/CFS). He also suggests a possible cure. Seeing that this potentially groundbreaking research was attracting little attention, I contacted Dr. Eriksen and interviewed him via […]
From ME Research UK. It’s a recurring theme, but the diagnosis of ME/CFS is severely hampered by the lack of a test that can distinguish people with the illness from those without. This is a challenge in many diseases, but particularly in ME/CFS which affects so many different systems of the body. ME/CFS […]
From University of Toronto News. A new U of T study may lead to help for sufferers of chronic fatigue syndrome (CFS) who face debilitating fatigue that can’t be cured by rest. The study, which looks at epigenetic changes in people with CFS, is the first to identify differences in sensitivity to a hormone found in the […]
By Cort Johnson in Health Rising. The NIH Research Center applications are in. The NIH is surely looking closely at how the chronic fatigue syndrome (ME/CFS) research community responds. After all, they haven’t responded very well over time. A Freedom of Information Act (FOIA) request indicated that the NIH receives few – really […]
By Monica L. Joustra ,Isidor Minovic, Karin A. M. Janssens, Stephan J. L. Bakker, Judith G. M. Rosmalen Published: April 28, 2017 https://doi.org/10.1371/journal.pone.0176631 Abstract Background Many chronic fatigue syndrome (CFS) and fibromyalgia syndrome (FMS) patients (35–68%) use nutritional supplements, while it is unclear whether deficiencies in vitamins and minerals contribute to symptoms in these […]
From Nevada Center for Biomedical Research. Physicians lack effective tools to aid in the diagnosis and treatment of those who are impacted by ME/CFS, a complex and often disabling disease. That could change now that scientists at Nevada Center for Biomedical Research (NVCBR) have taken the first step in developing a […]
By Remy in Health Matters. A Review of “Human Heart, Cosmic Heart” by Dr. Thomas Cowan The heart is rarely front and center currently when it comes to discussing the system failures and dysregulation in ME/CFS. Despite the focus some doctors (specialists such as the late Dr. Lerner and Dr. Cheney) have […]
From The Microbe Discovery Project. Anticipated work from the CII teams’ early investigative research into ME/CFS is starting to be published. The new study in the journal Microbiome from Drs Ian Lipkin and Mady Horning at Columbia University Center for Infection and Immunity (CII) finds abnormal levels of certain types of bacteria in the gut […]
From ME Research UK. As scientists, it is very easy for us to focus on the biological details of an illness like ME/CFS and forget about the patients themselves. Hence the value of studies such as that by Eva Stormorken at the University of Oslo and Prof. Leonard Jason at DePaul University in […]
By Cort Johnson in Health Rising. Producing energy is a big problem in Chronic Fatigue Syndrome (ME/CFS). In fact it’s probably the problem in ME/CFS, which is why the findings of mitochondrial dysfunction and lowered ATP production have made sense. When the metabolomics studies suggested that chronic fatigue syndrome (ME/CFS) was a […]
By Cort Johnson in Simmaron Research. Inflammation is a big deal in the medical world. Even mild inflammation, if it’s consistently present, is known to increase one’s risk of getting cardiovascular diseases, diabetes, Alzheimer’s and many others. Standard tests for inflammation such as C-reactive protein or cholesterol, however, are often unrevealing. For […]
By Mensah FKF, Bansal AS, Ford B, Cambridge G. in Pub Med. Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is characterised by multiple symptoms including fatigue, headaches and cognitive impairment, which have a significantly adverse effect on the normal functioning and well-being of the individual. These symptoms are often triggered or worsened following physical or […]
By Adrienne Dellwo in Very Well. GABA and glutamate are neurotransmitters—chemical messengers in your brain. One is calming, one is stimulating, and they’re supposed to stay in balance with each other. So what happens if this balance is thrown off? Some research suggests an imbalance of these two substances may play a role in fibromyalgia […]
From ME Research UK. Principal Investigator Prof. David Patrick Institution School of Population and Public Health, University of British Columbia, Vancouver, British Columbia, USA In many cases, the drugs used to treat various diseases are effective in only a proportion of patients. It can therefore be valuable to identify these individuals, so […]
After a pretty tough time, the guys riding as part of The Nomadic Knights group, have made it to Everest Base Camp. Their brief report is below. 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 peak of Mt Everest is located directly above the left hand corner of the flag with the snow being blown from it, not ideal climbing weather. Directly behind the flag in the valley you can just make out the orange tents, this is the base camp for the mountaineers, their teams and their support crew waiting for windows in the weather to commence their attempt on the summit and move to the next stage camp. Lots of waiting unfortunately.”
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 Wed 16 August 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.
ME Awareness At York Explore
Friday 28 July 2017
The York ME Community will have a 'Table' at York Explore Library on 28 July 2017 to inform visitors about ME and raise awareness. Please pop in for a chat if you're in town.
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 been one of the companies to support The York ME Community this year. One of their teams entered into our Inter Company Fantasy Football League were top on Christmas Day and so received a box of goodies from another of our supporters, Nestle of York, and so a big thank you to them and all the other York businesses taking part and supporting us. Now they've only gone and won the league and The York ME TGA Shield ! Our league is sponsored by TGA Mobility and the shield will be presented in due course.
If your company would like to take part next season, all it takes is a £25 registration fee which goes directly to Invest in ME Research. We make sure all businesses get a good mention in social media with their business Tweets being re-sent to hundreds more potential new clients.
Please get in touch by dropping me an email at bill@York-ME-Community.org to register your interest.
Why not take this opportunity to support your local community and raise the profile of ME Awareness in York, an illness that affects around 800 people in the York area, 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.........
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.
