This Week’s M.E. News – Week 37, 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 going 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 visitor 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.