This Week’s M.E. News – Week 42, 2019

A selection of succulents, Title reads: M.E. Community News, News headlines and blog highlights from week 42 of 2019

​Time to catch up on the latest M.E. news headlines and blog updates from the community. So grab a cuppa and get comfy,​ there are many great articles to read this week!

*If you missed last week's round up, I'm sorry, that was my fault, I never finished writing it due to ill health, I will finish it off and get it published soon. There ​were some excellent posts published last week! You can find all ​my previous news posts here.

​This Week's M.E. News

​Here's this week's M.E. news summarised just for you. Please remember to share these articles on social media to help raise awareness, promote good science and end the stigma associated with Myalgic Encephalomyelitis. ​Team work, people!

Accelerating ME/CFS research, diagnosis and treatment

Dr. Suzanne Vernon from Bateman Horne Center has raised millions for M.E. research which has restulted in the publication of over 85 papers. This week she shares her 2-pronged approach to accelerating ME/CFS research ​for better diagnosis and treatment options.

The first prong focuses on biomarker discovery, almost 80% of their patients participate in research by providing biological samples which are used in studies worldwide. Bateman Horne is then able to supplement the scientific data with medical records to provide a bigger picture which they think might provide additional insight.

The second prong focuses on developing, preferably non-invasive, ways to ​objectively measure ​the various symptoms​ patients experience. Things like physical and cognitive function as well as unrefreshing sleep and orthostatic intolerance. For example, they are ​working on a wearable device that passively measures impaired function​​.

So far this two-pronged approach has attracted much interest and they have already partnered with ten ​research organizations and ​continue to attract new partners from the research, pharmaceutical and wearable technology sectors. >> Read More

​Also from Bateman Horne

​Race & ethnicity: building an inclusive movement

​MEAction continues their ​values and policy initiative, this week they interview Wilhelmina Jenkins ​who underlines the importance of building a movement that accurately represents the whole M.E. community.

Wilhelmina was completely disabled by M.E in 1983 while doing her PhD in Physics and has been a passionate advocate ever since.

​In this interview she explains why people of colour with M.E. are often ​left undiagnosed ​causing additional difficulties​ and the cultural differences that ​make people ​with M.E.​ ​in minority communities unnecessarily isolated and underserved.​ She also provides a few ​ideas on how we can make ​our advocacy campaigns more inclusive. >> Read More

Dr Myhill's Travelling Workshops for Ecological Medicine

​Bookings are now open for Dr Myhill's ​t​ravelling workshops. She'll be touring the country in her campervan from January 2020 and will be running these workshops for one week each month.

The workshops, which are based on Dr Myhill's book "Ecological Medicine", will be comprised of 10-16 people each​. The focus will be on any health conditions, not only M.E, and attendees are ​to bring along their medical history and test results as well as a laptop or tablet to take notes and develop their "illness management frame". 

​Dr Myhill will help each participant complete their ​frame in a way that provides a personalised management plan. There will ​be time for discussion and questions too. By the end of the day, participants will know what their symptoms mean and how to treat the ​underlying causes, these treatments ​will be logical, easily available and generally affordable. 

Workshops can be hosted by anybody, so patients or carers​ and other interested parties can get in touch with Dr Myhill's staff if ​they would like to have her come by​. >> Read More

​Llewellyn King interviews Dr. Ron Tompkins

​Here are my notes from the video which you can see below, I've focused on the M.E related content.

Ron explains that ​there ​is a lot of interest in the study of M.E. accross various medical and scientific disciplines. There are hundreds of scientists in the Harvard medical ​group which consists of 30 different ​institutions. They recently held symposiums which were organised for approximately 50 scientists and clinicians, but he had to turn away at least ​50 others who were also interested in attending.

​They also have affiliations with engineering or technical groups, including Stanford and MIT, so there are exciting opportunities to contribute to the field. The​y ​are collaborating with a facility which ​has studied ​neural inflammation, microglial activation, particularly in ​the brainstem in Lyme and Fibromyalgia patients, and they'd like to study this in ME/CFS too since there is so much overlap among these conditions.

​They have ongoing treatment programs for patients, but they do not have the resources to care for all the patients as it requires a huge amount of resources. So philanthropic interest is key to expanding ​those services and setting up centers of excellence.

Medical students are graduating with huge student debts and are ​unlikely to establish a practice that focuses on an illness like ME/CFS, especially if patients are unable to pay for their treatment.

Ron Tompkins' team ​has been working on inflammation, metabolism, pro​teomics, genomics and computational biology and for ​about 30 years he has also been studying how the body responds to stress. 

He believes the disease origin is complex, but has noticed ​similarities between his stress patients and M.E. patients. He points out that stess can come from physical injury, sepsis or infection or emotional ​triggers. Most people would return to a healthy state after a while, but M.E patients have immunological ​and metabolic problems ​that persist and fail to return to normal function.  ​

They are looking into what the difference is in skeletal muscle in ME patients at baseline and then again after exertion compared to healthy controls. He ​is amazed by the large number of young people who ​had been very active and suddenly fell ill, pointing out that they can ​often remember exactly ​when they fell ill.

Evidence for NICE: M.E. services in UK not fit for purpose

MEAction recently did a survey asking patients in the UK to describe their experience of ME/CFS services and treatments. The survey was created in response to NICE's request for evidence to help them with their new guidelines for M.E.

It covered topics such as recommended strategies, experience of clinics, cognitive behavioural therapy (CBT) and activity management.

A total of 1906 patients completed the survey and the results clearly show that treatments offered in the UK are not fit for purpose. They've made charts to show the outcomes for each section.  >> Read More

​Is ​exercise intolerance unique to M.E?

​Cort shares the results of a few studies which clearly show not only that exercise intolerance is unique to M.E. but also that post-exertional-malaise is ​different to exercise fatigue that other people experience.

The studies done usually involve ​a 2-day exercise test. In this test patients are required to use an exercise bike until exhaustion on one day and then again 24 hours later while various ​parameters ​are measured. 

​This test has generally been abandoned since exercise seems to benefit almost everybody no matter what they're suffering from, but people studying M.E. are using it to study and prove exercise intolerance.

​Studies have shows that people with all sorts of serious health conditions, including end-stage renal disease, heart failure, cystic fibrosis, pulmonary hypertension, ​MS and stroke can all bounce back on the second day and redo ​the exercise test without any trouble, some even perform better on day 2, but people with M.E. cannot.

​While most candidates recover within 24 hours and are able to complete the second test in the same way or even better on the second day, people with M.E's ability to function is still greatly diminished even 24 to 48 hours after exertion, and the decline is evident in almost every parameter measured. >> Read More

​Updates From M.E. Bloggers

The following people with M.E. ​have updated their blogs this week. I know they'd love to have a visit and some comments. If you find their content helpful or interesting, why not share the links on social media too!

​​Why did it take ​months to diagnose a broken ankle?

​Whitney went on holiday to Europe where she sustained an injury while hiking in Scotland. Being in chronic pain daily, she was able to continue her holiday, walking on her broken ankle, simply because she is usually in much more pain. The problem was that her doctors wouldn't take it seriously because of ​her stoic ​behaviour.

This week she talks about how ​we downplay our injuries because we suffer from chronic pain that is often much worse and how ​our behaviour affects the way our doctors and loved ones respond​, influencing our care and treatment. >> Read More

​When managing hospital appointments become your full time job

​Clare has managed to get her degree while chronically ill, but has not been well enough to sustain a job that makes use of ​her degree. This week ​as she gives us a look into her daily life, it becomes clear that managing a chronic illness, with regular ​visits to multiple hospitals and specialists, is really a full time job. >> Read More

A photo journey through the decades

dSavannah has been snapping pictures since she was little, this week she's sharing some of her photos in this beautiful and nostalgic collection. It includes old camera negatives, disc film negatives as well as her more recent photos taken on her iphone. >> Read More

​Learning acceptance and self love

​This week Carrie shares her journey of self-discovery, walking us through the feelings she had after diagnosis and the things she learned ​as a result of her illnesses over time and finally the difficult task of learning to love herself. >> Read More

When doctors are not so wonderful

​This week Mishka shares her experience of doctors. You'll see why she learned from a young age that doctors don't always get things right and that they're only human. She also shares the all too familiar story of her latest doctor who would rather dismiss her with a prescription than listen to her or explain her diagnosis or labs and why she calls him Dr Wonderful. >> Read More

​​E​xplore ​our garden with me!

​This week I'm taking you on a virtual outing through my garden. I've shared a selection of photos ​I took this summer on my occasional walks out in our little garden. I share how our garden evovled since we moved in last year and our first family BBQ in years and I also talk about my latest experiment in grounding.
>> Read More

A list of this week's MEcfs news

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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 About Life With M.E.

A crocheted twiddle muff with tassels and buttons on it lying on the carpet. Title reads, How to crochet s twiddle muff
Char pulling a funny face. Title reads: How to have M.E. successfully. A humorous look at life with Myalgic Encephalomyelitis.
Woman lying on bed, exhausted. Title reads, How to cope when you're low on energy. 10 tips for managing life with debilitating exhaustion.
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
A man sleeping next to his dog. Title reads 12 tips to help you adjust to your new normal. Are you struggling to adjust after your ME / CFS diagnosis?
A stack of pebbles with clouds in the sky in teh background. Title reads: Ten commandments for reducing stress. How to reduce stress if you're chronically ill.

​Thank You For Stopping By!

​​For more conversation on this topic, why not ​join me on:
My Chronic Life Pages: Facebook | Instagram | Twitter | The ME/CFS Community 
My Art & Crafts Pages: Facebook | Instagram | Twitter | My Art Shop 
​M.E. Awareness Pictures: Facebook | Instagram | Twitter
My Amazon Wishlists: ​Art & Hobbies | Books
​I'm also on: Pinterest | Bloglovin’ | Mix | Flipboard 

email chronically hopeful char at gmail dot com

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  • Another great update! I so wish I could get to the Bateman center. I’m unable to tolerate high elevation and in order to travel there the elevations are too high. I just love what they are doing in every direction.

    What a great interview that was with Ron Tompkins! He leaves me filled with even more hope. And thank you for the shout out. I try to be candid, but the posts often leave me feeling a little over exposed. If they help just one person though, they’re worth it. Hoping the rest of the week goes smoothly for you. ?

    • Yes! There is so much to be hopeful and excited about. So grateful for all the allies working tirelessly to find answers for us.

      I think people respond and relate better when your writing is real and honest.

      Sending hugs your way x

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