This Week’s M.E. News – Week 35, 2019

Picture of purple clematis. TItle reads: M.E. community news. News headlines and blog highlights for week 35 of 2019

​It's time for this week's M.E. ​news ​and ​blog updates from the ​community. So ​get ​a nice cup of tea or coffee and make yourself comfortable - let's catch up!

If you're wondering about ways you can help raise awareness of Myalgic Encephalomyelitis, but are unsure how you could ​be helpful, know that one of the easiest ways to help is simply to share our content with the world.

​So share the link to this page (there are some one-click share buttons at the bottom of this page), share the graphics I've created (also at the bottom of the page), and share any of the articles I have linked below. ​The more you share, the more eyes will see and learn the truth about M.E. Thank you!

​This Week's M.E. News

​Cortene is moving forward on a possible new drug for treating ME/CFS

A small drug company called Cortene​ has been working on the idea that excessive levels of a receptor, called CRF2, ​on ​some neurons in the brain ​are producing​ a hyperactive stress response in people with M​.E. ​They believe that this receptor is responsible for various issues ​that other studies have proven to be present in M.E.

​In 2018 they started a small, 14-person trial at the Bateman Horne Center. Their goal ​was to normalize the stress response in ​people with M.E. by causing the CRF2 receptor to ​part from the neurons in the brain.

They discovered that the new drug, called CT38, appears to be safe for humans and that people with M.E. respond to much lower doses than the healthy controls. ​These results are encouraging, so Cortene are now moving forward with publishing their results, applying for a patent ​and ​getting funding ​for a larger trial. >> Read More

​#MEAction is looking for people with M.E. who are willing to share their experience of GET and CBT

​The National Institute for Clinical Excellence (NICE) is in the process of updating the current M.E. guidelines which are only ​expected to be published in October 2020. ​In the meantime the old, ​inadequate guidelines remain in place and continue to cause harm to people with M.E.

The ME Action Network ​is collecting ​personal stories as part of their campaign to immediately stop GET and CBT from being prescribed ​as treatments for M.E. They are urging NICE to have​ measures put in place now to protect people with M.E. from the ongoing harm being caused by these treatments until the new guidelines are published in 2020​. Unfortunately it seems that NICE is taking their time implementing any safety measures and are not providing clear answers when questioned.

If you have had experience of GET or CBT for ME/CFS and would like to contribute to this campaign >> Read More

​Seven tips ​to help you apply for disability benefits

​Ann Innes is a consultant welfare rights advisor for the ME Association in the UK. She ​has had Severe M.E. for about 8 years and now offers support to help people though the claims process. In this article, she's sharing 7 great tips to help people with M.E. improve their chances of getting the help they need.

​For example, she ​advises to ​focus on the variability of our symptoms ​rather than focusing on ​our worst day scenario during the application process​. She also highlights the need to explain our type of fatigue or exhaustion instead of mentioning tiredness​. The key is to ​assume the assessor doesn't know anything about the condition at all. >> Read More

​The first fecal transplant study shows exciting results for people with M.E.

​This first fecal transplant study​ was not a statistically rigorous, randomized, placebo-controlled trial, but rather a series of detailed accounts from a physician's practice, collected over time.​ The results were quite promising.

So far there are ten studies that show gut health issues ​in people with M.E. so this sort of trial is long overdue. In this study, 42 patients with CFS participated, 30 of these also have IBS. Half the participants were treated with oral pre and probiotics, diet, etc. and the other half were treated with the fecal microbiome transplantation.

The results were quite ​exciting, showing that the fecal transplant treatment was either hit or miss, with ​not much of a grey area, and when it worked, it seemed to work very well. ​Of the 21 ​participants, 7 reported returning to​ near normal health, and 6 of them had significant improvements in energy. >> Read More

​LP study co-author is ​lead author of Cochrane’s ​new “risk of bias” tool

Professor Sterne, who has co-authored 11 papers with ​Professor Crawley, ​will be a lead author on a revised tool for assessing risk of bias in randomised trials. At least 2 of those papers, the Lightning Process trial and the BMJ Open’s school absence study, broke core principles of scientific inquiry.

Both had methodological and ethical ​issues, including outcome-swapping, and were exempted ​from ethical review. If they had been put through ​peer review, neither article ​would have been published.  

This new revision ​makes it easy for unblinded studies ​(which rely on self-reported outcomes) to be ​regarded as having ​low risk of bias when actually such studies​ are at a much higher risk of bias. ​The same sort of studies that seem to be favoured by ​GET and CBT promoters. >> Read More

​Updates From M.E. Bloggers

The following people with M.E. ​have updated their blogs this week. I'm sure they'd love to know you've stopped by, so if you find any of their content ​interesting or helpful, ​please leave them a comment to let them know and share the links on social media too!

Jamison ponders the new kind of normal we experience when chronically ill

Life with a chronic illness means living with a constant onslaught of debilitating symptoms that are anything but normal - but after years of suffering such pain and illness, we seem to adjust our expectation of "normal".

What is normal for a healthy person is far from what normal is to somebody with a chronic illness and we often feel like we can't even remember what normal feels like. I love how he explains, with vivid descriptions, how our memories of healthier times are in fact memories of what normal is. >> Read More

Ellie is fundraising for M.E. by doing exercise every day for 6 months

After finding out about the stigma and misinformation around Myalgic Encephalomyelitis from her sister-in-law, Ellie decided to hold a fundraiser for #MEAction. She aims to do 1000 bodyweight reps in half an hour every day for 6 months!

Basically, she will attempt to do 100 each of various exercises like crunches, squats, knee lifts, lunges, push-ups, burpees, leg raises, etc. Her fundraising target is £3000 which works out to £500 a month. She will be documenting her progress on Instagram and you can donate here. >> Read More

​Clare shares her journey through education while housebound with M.E. ​plus tips for other students

​Clare became unwell when she was just 12 years old which means that most of her ​education was ​achieved while at home. She initially missed out on much of her schooling, but ​later had tutors who would come to her home to teach her. After experiencing some improvement, she joined a local community ​learning centre ​and then the Open University where she finally got her degree.  

In this post, she explains how she overcame her many obstacles along the way and shares some great tips for anybody thinking about studying while chronically ill. >> Read More

​Veronique shares 15 ways ​to support the ​​social nervous system (a branch of the vagus nerve)

​Living with chronic illness, especially when we've experienced trauma, often means that our nervous system is in fight or flight mode. On high alert, anxious, fearful. This state is perfectly healthy and natural during a crisis, but when it remains switched on for prolonged periods, it becomes exhausting and even unhealthy. 

​​As a person with chronic illness and a doctor, Veronique discusses the importance of listening to our body's needs and how impulse and play can help the healing process. She shares many great insights into the nervous system and how we can switch gears and return to peace, calm​ and rest. >> Read More

Julie hosts a paint by numbers giveaway

Julie is sharing 5 reasons why painting by numbers is a great activity for people with chronic illness. I know I enjoy painting very much and even manage to paint while in bed. She's also hosting a giveaway in which you could win a paint by numbers canvas of your choice! Entries due before 7 September 2019. >> 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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  • mishka says:

    I love these posts! Such a great way to share an incredible amount of awareness!

    I just wanted to let you know I nominated you for the Chronically Hopeful Award. 😊 No pressure to participate, just letting you know I enjoy your blog and find it has a hopeful nature and makes me smile.

    https://craftschronicillnessandadulting.wordpress.com/2019/09/03/chronically-hopeful-award/

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