This Week’s M.E. News – Week 34, 2019

Picture of orange and red tulips. Title reads: M.E. community news. News headlines and blog highlights for week 34 of 2019

​It's that time of the week again! ​Pull up a chair and grab some snacks, we've got lots of exciting news and interesting blog updates from the M.E. community this week. Myalgic Encephalomyelitis is getting more and more visibility in the media and we have all sorts of allies stepping up to support our campaigns. These are exciting times!

Remember, an easy way to contribute to our ​cause is simply to share articles and personal stories from our community. The more you share, the more eyes will see our content, and the closer we get to eliminating stigma and educating the masses. ​Goal!

​This Week's M.E. News

​​​Canadian Health Minister ​pledges $1.4 million to study ​Myalgic Encephalomyelitis

​On Thursday the Canadian Institutes of Health Research announced they will be spending $1.4 million on M.E. in a bid to attract more researchers to the field. The money will be used to create a national network whose aim will be​:
- investigating the causes of M.E. (including viral and genetic)
- linking patients and researchers in Canada and the US, sharing their work.
- supporting graduate students who are working on M.E.
- drawing on the wisdom of people with M.E. as active research partners.
The network headquarters will be at the Sainte-Justine University Hospital Research Centre in Montreal. >> Read More

​A group of Physiotherapists in the UK aim to improve the experience of people with M.E.

​A group of Physiotherapists, in collaboration with The M.E. Association, have conducted a poll among people with M.E. to assess patient experience and learn how their experience of Physiotherapy can be improved.

The results showed that each person experiences the illness in a different way and things that some people found beneficial, others found detrimental. The conclusion is ​that a standardised approach is not appropriate and ideally Physiotherapy interventions need to be tailored to each individual person with M.E. >> Read More

​School nurses and colleagues in the US can earn extra credit through an online continued education course on Myalgic Encephalomyelitis in young people

​The Northeastern University School Health Academy, ​in collaboration with the Massachusetts ME/CFS & FM Association, are launching a continuing nursing education program where school nurses, councelors, social workers and teachers can earn contact hours and Personal Development Points by learning about M.E. from pediatricians, children with M.E. and their parents. >> Read More

​Registration is now open for Stanford University's Community Symposium on the Molecular Basis of ME/CFS

​The symposium will be held at Stanford University on Saturday, ​7 September 2019. ​The speakers will meet for a 2-day conference prior to the symposium on Saturday where they will then share their research with the community. The M.E. community, whether patient or ally, ​is ​welcome to join the ​symposium​ in person or through live stream. ​A great opportunity to meet the scientists and clinicians who are tirelessly fighting for us and find out about the latest research ​on M.E.

Be sure to register whether attending in person or online​. Registration closes on ​26 August 2019. >> Read More

​How mobility service animals can help people with M.E. 

​The Bateman Horne Centre, with input from dog trainer Kelley Rosequist,​ explain how service animals can help people with M.E. with mobility support. Mobility support animals are different to therapy dogs or emotional support animals in that they help the ​handler physically in very practical ways.

A mobility service dog could help a person with M.E. navigate through crowded areas, pick things up ​off the floor, help them in and out of vehicles or chairs, bracing ​them, opening doors, ​switching lights on ​or off as well as fetching ​carers or medical help​ when needed. >> Read More

​Updates From M.E. Bloggers

The following ​M.E. bloggers have published updates this week. If you find any of their posts interesting or helpful, why not let them know in a comment and share the links on social media​? Sharing will help raise awareness ​as well as support your fellow warriors.

​Clare shares her thoughts on various power assisted wheelchair options

​As many of us with Moderate to Severe M.E. know, self-propelled wheelchairs can be extremely tiring to control. Clare ​has been on the hunt for an affordable alternative that ​would be easy enough to assemble and dismantle as well as offering the freedom of indepentendly moving about. In this post she discusses her options and thought process in choosing the ​chair she ​eventually got. >> Read More

Greg publishes a pdf about proper symptom identification in M.E.

Unlike other major illnesses, there is no clear clinical pathway for Myalgic Encephalomyelitis. There is no monitoring, no support and hardly any respect. The services that have been set up are few and far between and many are horribly unfit for purpose. This is due to decades of misinformation, psychiatric lobbying and a severe lack of government funding for research worldwide. 

In his article, Greg discusses why digging deeper to identify the causes of each symptom is so important and how it will help eliminate misunderstanding, neglect and abuse of people with M.E. >> Read More

​David shares 20 humorous quotes about life with M.E.

​For the past 2 years ​David has been struggling with post viral M.E. In this post he shares some of his observations on what it's like to live with Myalgic Encephalomyelitis.

​What would you do if you saw Ron Davis at the supermarket? Do you hold the fate of the oceanic ecosystem in your hands? What do you have in common with deep-fried ice cream? If you're in need of a giggle, this one's for you! >> Read More

​Emma shares some ​helpful insights​ on the power of letting go

​The struggle between fighting to recover and acceptance seems to be something every chronically ill person struggles with at some point. But realising that acceptance is not the same as giving up is an important part of moving forwards. In this post, Emma shares some incredibly helpful ​truths about surrender and letting go. Some of my favourite points are:
- ​You can feel peace, even ​while experiencing phyical discomfort.
- Trust that ​God is supporting you.
- Don't push through just to please others.
- Let go of over-analysing and worry. >> Read More

​Jo shares 10 reasons why pets are beneficial for people with M.E.

​We all know that pets offer unconditional love, companionship and cuddles, ​and those alone are plenty of reason to think about adopting a pet, but there are many ​other great reasons to have a pet too, if you can. ​Although, this post isn't just a list of reasons to get a pet, Jo has actually shared loads of quotes and pet photos ​from the chronic illness community! It's a wonderful gallery of cute critters and their loving humans. So, if you're up for a cuteness overload, go check it out! >> Read More

A list of this week's MEcfs news

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A list of this week's blog highlights

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  • Tamara says:

    That was great. It appears that we are starting to get some recognition in the World at last. Very exciting. Thanks for sharing. You are such a ray of sunshine!

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