By Adele Paul in The Mighty. When it comes to my chronic fatigue syndrome (CFS), I have been known to tell a tall tale now and then, or simply omit the truth completely. The reasons for this may not be what think — I’m in no doubt of the existence of my illness […]
By Adrienne Dellwo in About Health. Sensory overload is a common problem in fibromyalgia (FMS) and chronic fatigue syndrome (ME/CFS.) It’s a symptom that can have a significant effect on your daily life and discourage a lot of activities. Sensory overload can make you feel panicky, confused, and overwhelmed. It can result […]
By Julie Rehmeyer in Slate Magazine. (An American view) Last month, a team of researchers released their latest study on chronic fatigue syndrome. Psychotherapy and a gradual increase in exercise, the researchers claimed, were lasting, effective treatments that could lead to recovery. The study was an update of the largest treatment trial in CFS […]
Story by Katie Gu in the Stanford Times. (A view from the US). Two years ago, Tom Camenzind, 16, was a sophomore at Stanford studying computer science. He had a 4.0 GPA and summer job offers from Facebook and Dropbox. According to him, his “medical history was a clean slate.” Then, in January 2014, […]
By Cort Johnson in Health Rising. The Chronic Pain Connection. From “hand-warmers” to ion channel blockers to magnetic field generators more and more different approaches to get at the chronic pain are being tried. Now comes an entirely different approach. First, studies indicated that in rodents in chronic pain neurons thought to be associated with […]
By Cort Johnson in Simmaron Research. Ian Lipkin flew to Lake Tahoe this December to fundraise for work he’s doing with the Simmaron Research Foundation. In a talk covering his virus hunting career, the threat of pathogens to humanity, and his work with chronic fatigue syndrome (ME/CFS), he dropped a bombshell: he stated […]
By Andrew Gelman in his blog. James Coyne wrote to me a couple weeks ago: This time I’m critiquing a horrible mediational analysis. The larger context is that the authors have refused all requests to share data that would be needed to make an independent evaluation of their interpretation. I am now in what […]
By Llewellyn King in White House Chronicle. We all know about the dark side of the holidays: the pain of the lovelorn; the stress for the recovering alcoholic; the torment of parents who cannot provide gifts, even homes, for their children. Then there are those who bear loss: loss of employment, loss of a […]
From ME Research UK. Fatigue is a disabling consequence of a wide range of chronic diseases, including cancer and multiple sclerosis. It was one also of the symptoms associated with past outbreaks of myalgic encephalomyelitis (ME); in his famous 1959 review of outbreaks Sir Donald Acheson described, “…a period of convalescence prolonged by fatigue, […]
A Blog by Lussy in Health Facts. Fibromyalgia and chronic fatigue syndrome can affect every area of your life, right down to the most ordinary tasks of daily life. Sometimes, you might be surprised by how difficult “ordinary” things have become for you. Through talking to a lot of people with these illnesses, I’ve identified […]
By Dr Charles Shepherd in The Telegraph. For too long the medical community has dismissed ‘Chronic Fatigue Syndrome’ as a mental illness which can be cured with therapy and exercise. Back in 1955, a mysterious polio-like illness affected 262 doctors and nurses at London’s Royal Free Hospital. The hospital had to close for just […]
By David Tuller in California Magazine. Years ago, I never thought to myself, ‘Hey, I’ve gotta be the guy who writes about chronic fatigue syndrome.’ I mean, why would I? It just sort of happened. When research suggested in 2010 that the illness might be linked to a mouse retrovirus, I wrote a piece about […]
The debate over this mysterious disease is suddenly shifting. By Julie Rehmeyer in Slate.com Last month, a team of researchers released their latest study on chronic fatigue syndrome. Psychotherapy and a gradual increase in exercise, the researchers claimed, were lasting, effective treatments that could lead to recovery. The study was an update of […]
Washington (AFP) – As reported in Business Insider (UK). I am told that the heading may not be totally accurate, but worth a read nonetheless. Chronic fatigue syndrome is a disease with distinct stages that can be identified through biomarkers in the blood, researchers said Friday, offering hope that earlier diagnosis may improve treatment. Scientists […]
An article from The Faculty Lounge. Is Chronic Fatigue Syndrome an organic disease that should be addressed by biomedical research, or is it a only psychological condition best treated by some form of psychotherapy? Until recently, the answer to that question was in dispute, with immunologists and microbiologists tending to take one side, and a group […]
An Article in ‘About Health’. By Adrienne Dellwo, Fibromyalgia & Chronic Fatigue Expert Chronic fatigue syndrome (ME/CFS) is considered a multi-system illness with dysfunction in the immune system, central nervous system and hormones. However, research is suggesting that the abnormalities don’t stop there — ME/CFS is being tied to several irregularities in the heart. These […]
Post by Emma Franklin a.k.a @myblondevoyage: The specific cause of Chronic Fatigue Syndrome (CFS) and Myalgic Encephalomyelitis is currently unknown. Despite this, there are numerous triggers and variable factors that are known to often play a part in the development of this chronic illness. One of the most common triggers is a viral infection. You […]
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 19 July 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.
