This Week’s M.E. News – Week 38, 2019

M.E. researchers are hopeful about the near future

Linda Tannenbaum of The Open Medicine Foundation shares her excitement after the recent 3-day working group and community symposium - she says researchers and patients have reason to be more hopeful and inspired than ever before!

Sixty scientists from all over the world participated in the working group, sharing their research and brainstorming new ideas. After that they held a community symposium which was attended in person by hundreds of interested parties from all over the globe and by thousands more online. >> Read More

​Kyle McNease's recovery story

​The latest in this series by Cort Johnson is a hope-filled account of ​Kyle McNease's incredible recovery from Very Severe M.E. Kyle was an active student when he fell ill and after three and a half years of severe illness, ​seemingly close to death, ​his family found his solution and he has regained much of his ​health. >> Read More

​Using ​a Disability Passport if ​you need adjustments at work

​A disability passport is a ​document outlining the ​adjustments an employer has agreed to make for a disabled employee. It is kept private, an agreement between an employee and their manager, and will travel with the employee as they ​are transfered or promoted within the company.

Having a written agreement means that if an employee moves to a new department or a new manager is employed, the transition is made much smoother by simply showing the disability passport to the new manager in question so they are aware of previously agreed upon adjustments that are in place. >> Read More

​​The surprising growth rates ​​of ME​ vs FM ​in recent years

​Cort has put together a very interesting comparison ​​between ​the ME/CFS and Fibromyalgia communities. He has compared patient population, social media interest, research programs and funding, advocacy groups and more. ​

​Surprisingly, despite FM having a much larger ​patient population, a much bigger online presence, and even more funding over the years, it seems that the ME community is the one that is growing faster in terms of biomedical research, scientific conferences and effective advocacy. These really are exciting times for the ME community! >> Read More

​​New anti-neuroinflammatory treatments developed for Alzheimer's may ​help ME/CFS and FM

​Alzheimer's research is ​ever growing as the population grows older and lives longer. Scientists now believe, after hundreds of failed clinical trials, that the problem might be neuroinflammation and are ​more recently focusing on that. 

This is exciting because their treatments could be beneficial to the ME and FM communities ​since neuroinflammation seems to be a key factor in both ME and Fibro. >> Read More

A few exciting projects by The Harvard ME/CFS Collaboration

• Using Invasive Cardiopulmonary Exercise Testing (iCPET) in people with ME/CFS has revealed Developing a pattern of “preload failure” (PLF) that seems to be associated with postural orthostatic tachycardia syndrome (POTS) and post-exertional malaise (PEM). >> Read More
  
• Exploring Post Exertional Malaise (PEM), a study to compare skeletal muscle at rest and during recovery after exercise in people with ME/CFS and explore the biological changes that happen. >> Read More
  
• Understanding the biological pathology behind Postural Orthostatic Tachycardia (POTS) in people with ME/CFS. >> Read More
  
• Studying the activation of microglial cells in the brain and the role of neuroinflammation in people with ME/CFS. >> Read More
  
• Developing a patient-driven tool called the “Personalized Automated Symptom Summary (PASS)” aimed at helping clinicians to more efficiently define and prioritise a patient’s symptoms. >> Read More
  

​Sophie shares one of her favourite quotes and what it has meant ​in her life

​Sophie's favourite quote is about change​ - something that all chronic illness warriors ​will be familiar with. The quote she shares this week is actually one of my favourite quotes too and I love how she has applied it to her life as a disabled person. She reminds us that although ​there are things in life cannot be changed, there are still many things that can be. I think that is so empowering! >> Read More

​Jamison shares his experience of mold exposure

​Over the years ​Jamison knew his homes had mold, but he ​never thought it was affecting him personally until 2013 when he noticeably became ill everytime he entered a certain house. 

In this post he shares how he and his mum found and dealt with the hidden mold he discovered was in his current home.  >> Read More

​Char answers some frequently asked questions about M.E.

​In the M.E. community we often use acronyms or other jargon in our writing and advocacy posts, but we sometimes forget that not everybody who reads our content knows what these terms mean. This week I have answered some of the questions I get asked most frequently by my readers and I've even created graphics to share so you can help others understand it too. >> Read More

​Sue shares her latest camping trip and highlights the restorative power of nature

​Sue and her family have been going on regular camping trips for years - even when 3 of them had ME at one point. She's ​not only sharing her latest camping trip, with some very picturesque photos, but it also sharing her thoughts on the healing power of nature and the different ways one can experience it even when ill. >> Read More

Amy ​is getting ready to start full-time work ​for the first time

Amy has a busy year ahead with her upcoming wedding and starting a new job. Her dream has always been to become a teacher and it's finally happening, but she's never had a full-time job before and isn't quite sure if she will manage. She shares her thoughts with us this week. >> Read More

​More blog posts published this week

• ​​Living with pain and the Pathways app review, by dSavannah
  
• ​Another ​day in the ER ​for Bella, by Brett
  
• Celebrating ​mom's life, by Mishka
  
• Analysing the British Association of CFS/ME guidelines on severe ME, by Naomi
  
• Spoonie Radio transcript: interview with Ken L​assesen about remission, by Dr Courtney Craig
  
• W​hen will medical schools accept ME/CFS as neurological? - by Sally
  
• A period of transition, by Emma
  

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