This Week’s M.E. News – Week 37, 2019

Picture of large pink proteas, Title reads: M.E. Community News, News headlines and blog highlights from week 37 of 2019

It's time for some weekend reading! Curl up with a cuppa and let's catch up on some community news.  I've summarised this week's M.E. news as well as the latest updates from bloggers in the community. Enjoy!

​This Week's M.E. News

​You can ​help raise awareness of M.E. by ​sharing any of the linked articles or ​sharing this page. Every share means more people see our content and that is just what we need if we want to spread accurate information and eliminate the stigma around Myalgic Encephalomyelitis. 

​Llewellyn King interviews Ron Davis about his M.E. research

​​​Ron Davis discusses the biomarker they've discovered and the Nanoneedle that measures it. He also describes the process they're currently going through to create a portable Nanoneedle for wider use. They ​also discuss the metabolic trap theory which he thinks might be the primary cause for M.E. as well as various medications ​​Davis' team wants to look into.

​Davis ​​goes on to highlight the need for more funding ​as current funding is mostly patient donated ​and he doesn't want to use patient donations on anything other than M.E. research. >> ​Watch the interview below or watch it on YouTube

​Letters sent to Dr Godlee about the ​BMJ's decision to republish​ the Lightning Process study

​After recently signing David ​Tuller's open letter to Dr Godlee, some of the 55 experts have now decided to write to her directly, urging her to reconsider the republication of the Lightning Process study.

The Lightning Process study was published online by a BMJ journal in 2017. After some early questions about the study's timeline were raised​, Tuller ​uncovered that Professor Crawley and her colleagues had actually recruited ​over half the participants before the trial registration. They ​even swapped outcome measures after collecting ​the early data and ​didn't disclose ​any of those details in the published paper.

Naturally, quite a few scientists, clinicians and other experts are starting to doubt the BMJ's credibility as a result of this mess. >> Read More

​A collaboration of M.E. charities meet with the Assistant Director of the Medical Schools Council

​Forward ME, a collaboration of ME and CFS charities under the chairmanship of the Countess of Mar, met with Clare Owen this week ​in order to ​​help improve knowledge and understanding of M.E. among medical students.

They also discussed ​​awareness campaigns, DWP initiatives, ​the NICE guideline review, the ​Royal College of GPs conference​ and more. The ME Association is sharing the minutes from the meeting. >> Read More

The ME Association continues their series on g​oing to university as a disabled student

​An informative article for any disabled student thinking about attending university in the UK. ​Emily shares how she made her choices and what ​some of the things are that one needs to think about before making decisions. She covers university applications, choosing the right campus, student finance, personal assistants and social care. >> Read More

​Updates From M.E. Bloggers

The following ​M.E. warriors ​have updated their blogs this week. I'm sure they'd love to have a visit​or stop by. If you find their content helpful or interesting, why not share the links on social media too - sharing is caring!

Mishka is readjusting her focus after a difficult month

Mishka had a very trying August, if it wasn't one thing that went wrong, it was another. But now as the dust settles, she is readjusting her focus. Rather than stay focused on all that went wrong and could still go wrong, she is choosing to seek out and celebrate the good things in her life.

She's sharing a lovely list of things she's grateful for this week. And as always, there are some sweet watercolour paintings to see too! >> Read More

Jo discusses environmental issues and why disabled people should be involved in the law making process

Jo points out, with some very practical examples, just how important it is to include disabled people in law making processes. She focuses on environmental issues in this article, providing some eye-opening facts.

The need to consult disabled people when making policy changes really needs to be addressed in all areas of life if we are to become an inclusive and accessible society. >> Read More

​Brett walks us through the frustrations of trying to ​get Bella's prescriptions filled

​What do you do when your doctor, pharmacist and insurance company can't get their stories straight and you're in need of medication? Brett is Bella's partner and carer, in this post he walks us through what has unfortunately become quite common for many with chronic illness - fighting to be heard and helped.

It shouldn't be this hard to get the ​medication ​one needs. Especially ​when the paperwork is in order and the insurance company has approved it. >> Read More

​Sophie reflects on the many blessings ​in her life

​The start of a new month is ​a time of reflection for many people, so just like Mishka above, Sophie has also shared some of the beautiful things that make her life richer despite chronic illness. And the two lists couldn't be less alike!

​I ​really enjoy reading such reflective pieces and love how varied each person's ​reflections are. They often make me think about my own life in a new way. >> Read More

Char is celebrating her birthday like never before

Rather than ask for gifts, this year ​I am hosting a fundraiser and giveaway!

​I'm aiming to raise at least £600 in aid of The ME CFS Foundation of South Africa. And ​asking anybody who sees this to consider donating even just 1 Pound/Dollar/Euro. It could make a huge difference to a very vulnerable community.

As the only organisation of its kind in Africa, the ME CFS Foundation plays a vital role in supporting ME and CFS patients on the continent. Educating health care professionals, advocating for health equality, and meeting the practical needs of patients.

In addition to the fundraiser, ​I am also hosting ​my first giveaway! Donors stand a chance to win an original piece of art, hand painted/drawn by ​me. Click the banner below to donate now or read more about it.

Donate to Char's Birthday Fundraiser to support The MECFS foundation of South Africa
A list of this week's MEcfs news

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A list of this week's blog highlights

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​More From ChronicallyHopeful.com

Feet in a bath tub, water moving. Title reads Shakes and Tremors with ME/CFS. Myalgic Encephalomyeitis causes visible body tremors.
Photo of hundreds of empty pairs of shoes in a town square representing th millions of ME/cfs patients missing from society. Title reads, How you can help the Millions Missing, Myalgic Encephalomyelitis awareness and advocacy,by Chronically Hopeful
A messy bed. Title reads: Imagine... a day in the life of M.E. Have you ever wondered what chronically ill people do all day?
Char lying on the bed, feeling ill. Title reads: Living with severe M.E. Who am I now? When it feels like you've lost your identity to chronic illness
Char pulling a funny face. Title reads: How to have M.E. successfully. A humorous look at life with Myalgic Encephalomyelitis.
An empty bed in a dark room, title reads: Poem, Severe M.E. is... What it's like living with severe Myalgic Encephalomyelitis
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  • mishka says:

    Thank you for the great OMF video! It’s nice to hear researchers are still moving forward and to hear him still sounding hopeful. And thank you for sharing my blog. ?

    • Glad you enjoyed this week’s round up. I loved the interview and your post too!

      They covered some interesting topics in the interview – it’s all very exciting isn’t it?

      A very hopeful time for our community.

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