Tag Archives for " Raising Awareness "

This Week’s M.E. News – Week 40, 2019

A bouquet of blue hydrangeas, Title reads: M.E. Community News, News headlines and blog highlights from week 40 of 2019

​It's that time of the week again! M.E. news headlines and blog updates from the community. There's been a lot of buzz this week with bold M.E. activism in the EU parliament, the Cochrane review being released and flu season around the corner for those of us in the North. ​Get comfy and enjoy!

If you​'ve missed my previous summaries and would like to catch up with older communty news, click here!

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This Week’s M.E. News – Week 39, 2019

A bouquet of pink flowers, Title reads: M.E. Community News, News headlines and blog highlights from week 39 of 2019

​Hello lovelies! Scroll down for this week's M.E. news highlights and the latest blog updates from warriors in our community summarised just for you. Please share any of these articles if you find them interesting or helpful​ and why not leave a comment to let the authors know you stopped by. It's always encouraging to get feedback from our readers.

If you missed last week's good news, click here - there is much to be hopeful about!

​This Week's M.E. News

​Take a survey ​to aid NICE guideline review

NICE (The National Institute for Health and Care Excellence in the UK) is calling for evidence to aid in the guideline review, so MEAction has put together a survey on patient experience of the treatments offered to people with M.E. (​Due 7 Oct 2019)

It's a simple 8-10 min survey about the treatment options and advice we were given when first diagnosed.  It has multiple choice answers and space for personal notes and will be anonymous. Most questions are optional too. They ask that we complete the survey once for each treatment facility we attended. >> Read More

​The vicious circles in M.E. and CFS

​I call this illness the ME Monster because it really can be vicious. Here Craig Robinson, an M.E. warrior and Dr Myhill's co-author, explains some of these vicious circles that patients will experience and provides possible solutions to help us manage them. ​Some of these vicious circles are:

  • ​Metobolic Syndrome - gut health imbalance due to modern day convenience foods causes poor energy metabolism and fermenting gut, weakening us and further inhibiting ability to cook nutritious meals.
  • ​Patent ​Foramen ​Ovale - a common heart defect in M.E. causing blood to bypass the lungs resulting in poor oxygenation which in turn inhibits cellular function throughout the body.
  • Mitochondrial Function - impaired energy metabolism in the motochondria means that all bodily functions are impaired, including our energy metabolising mechanisms which further depletes our energy.
  • Oxygen Delivery / Hyperventilation - the low energy and oxygen levels trigger hyperventilation which in turn causes blood to become more alkali and sticky which inhibits cellular oxygenation even further.
  • Magnesium Deficiency - ATP (energy) production is magnesium dependant, but low energy impairs magnesium absorption into cells making it hard to restore or maintain sufficient ATP production.
  • Toxins - detoxification is ​inhibited in the same way nutrient absorption is inhibited by poor energy metabolism, meaning that toxins remain inside cells, while nutrients remain outside, further inhibiting function. 
  • Lactic Acid - poor mitochondrial function means people with M.E. exceed their anaerobic threshold too soon, as a result we get hyperventilation, burning muscles and further inhibited mitochondrial function.
  • Look-alike Toxic Metals - fermenting gut results in absorption and accumulation of toxic metals, the body can mistake these for essential trace elements if the patient is low on these​ minerals, further weakening detox functions.

For more vicious circles and ​tips on how to avoid or manage them >> Read More

New research on the impact of M.E. in Australia

The Medical Research Future Fund will be funding new research on the impact of Myalgic Encephalomyelitis in Australia. Due to all the debate and misinformation over the decades, there is little data to speak of. 

Emerge Australia will be a part of this new research. They want to know as much as possible about how many people are affected and the impact it has on patients, carers, the community, economy and health care system as a whole. With more accurate data they can better serve patients, whether that's with support or advocacy efforts. >> Read More

​Surprising similarities between Overtraining Syndrome and Chronic Fatigue Syndrome

​​Studies into Overtraining Syndrome (OTS) have ​revealed that the condition, which affects athletes, ​is almost identical to ​ME or CFS in terms of ​symptoms and duration. The only ​obvious difference is that one is triggered by a virus, ​toxin or trauma while the other is triggered by ​physical exercise.

Some even suggest they might be two ​branches of the same disease. One affecting ​athletic types and the other affecting non-athletic types. >>​ Read More

​​What matters most to the M.E. community

​Last November MEAction launched a poll to​ find out what ​is most important to ​the community. The poll was designed to help them clarify their values, tactics and positions going forward, to unify the community.

275 people took the poll and provided much insight on ​values, policy, tactics and position ​in relation to various topics such as accessibility, inclusion, disease definition, treatments, research, funding and more. ​MEAction has provided all the results and many of the comments patients sent in too. A very interesting read! >> Read More

You can follow the entire ​values and policy clarifying initiative here.

​Dr. Ron Davis ​gives an update on latest M.E. research

​Video below, but here are notes​ for those who cannot watch the video:

  • Every patient has a gene mutation called IDO2 - so they're investigating what the gene does and what its function is in the disease. They have a hypothesis about it, they're calling it the Metabollic Trap hypothesis. 
  • They must aim to disprove it in order to test this hypothesis. Their hope is that this will clear the path to a cure.
  • They have found that there is ​a compound, made in the gut, which is missing in ​people with M.E, ​it has the function of protecting the brain, so the lack thereof is causing neurological problems. Patients are not crazy, they have biochemical problems that could maybe be fixed. 
  • The goal would be to find a way to replenish these ​compounds that are missing in the body - this will probably not cure patients, but will make them feel better and these treatments will be easier to figure out than a cure, but they want to work on both the treatment and cure.
  • These supplements will be in the form of drugs, so they will have to go through the ​drug approval process which takes long. Hopefully, because these are compounds that appear naturally in the body of healthy people, they will not take ​as long to be approved.
  • ​The working group is a collaboration between scientists, who are dedicated to solving this disease, all sharing their ideas to help each other move forward.
  • When they collect data, they have a website for researchers where the data is uploaded so that researchers around the world can access the data and study it. This means that professors who are good at analysis and physiology can study the data and come up with ideas without the expense of having to do the experiments and collect the data.
  • Unfortunately it takes longer to get ​work published than to do the ​work, so this method speeds up the whole process because they can share data which they know is correct without waiting through the long process of first being published. This is the same process used in the Genome Project.
  • ​Stanford Medical Centre is making their CFS clinic a multi-disciplinary clinic which will have various medical experts on site and will include collaboration with Dr Ron Davis' team. This way doctors and scientists can work together, sharing what works and come up with new ways to test things.
Fundraiser & Giveaway In Support Of The ME CFS Foundation South Africa

click for info about the fundraiser, giveaway & the foundation we're supporting

​Updates From M.E. Bloggers

The following people with M.E. ​have updated their blogs this week. ​If you find their content helpful or interesting, why not leave a comment and share the links on social media too!

​Penny takes us on a virtual outing to her peaceful place

​A tree canopy above, an ivy carpet ​below, the cool breeze on your skin, dog happily bouncing ahead, sunlight shimmering on the surface of the water as it rushes under ​a wooden foot bridge... Just some of the scenes I imagine while reading about one of Penny's favourite places to go ​on her rare outings in her wheelchair. >> Read More

​Rebecca shares how she ​explains M.E. to people

​We've all been there, we meet somebody new or see somebody we haven't seen in a long time and they want to know about this illness that they don't really understand because we totally look fine... Rebecca is sharing a few dialogues which she usually uses depending on who is asking the questions. >> Read More

​Jo explains why giving unsolicited advice is inappropriate

​As somebody with chronic illness, many of us will understand the frustration of healthy people offering advice on treatments or even cures for our complex diseases when we never asked for any advice. Jo explains very clearly in this post why giving unsolicited advice is not only inappropriate, but can actually be invalidating and harmful. >> Read More

​Sophie is sharing some of her tips for using a powerchair

​Being ​unable to walk much is not easy, getting out of the house independently can make a ​big difference to one's mental health and wellbeing, so having a powerchair can be a huge asset. Sophie is sharing some things she has learned since hiring a couple of powerchairs to try. >> Read More

Anna shares how she recently accepted her need for help

This week Anna is sharing her personal struggle with accepting how much help she really needs and the moment she became brave enough to ask for the extra help. >> 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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​More From ChronicallyHopeful.com

A pill bottle and glass of water in the foreground, in the background a woman sleeping on a bed. Title reads: using MSM supplements to relieve chronic pain. Methylsulfonyl Methane, also called the miracle supplement
A woman carrying a bucket of cleaning products. Title reads: Don't do your best, do less. How to avoid the boom and bust cycle.
Why I don't go to emergency room for ME CFS flares BLOG
Char pulling a funny face. Title reads: How to have M.E. successfully. A humorous look at life with Myalgic Encephalomyelitis.
A bed and bedside table with a lamp on it. Title reads: You might be an M.E. sufferer if... part 1, guest post by David A Graham.
Man in a wheelchair with his hand on the wheel. Title reads: Not all disabilities are visible. International day of people with disabilities.

​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 | Gallery 
My Amazon Wishlists: ​Art & Hobbies | Books
​I'm also on: Pinterest | Bloglovin’ | Mix | Flipboard 

This Week’s M.E. News – Week 38, 2019

Picture of colourful wildflowers in a field, Title reads: M.E. Community News, News headlines and blog highlights from week 38 of 2019

​It's that time of the week again - grab some snacks, make yourself comfortable, and let's catch up! I've summari​sed the latest news articles and blog updates from the M.E. community just for you and this week there is so much to be excited about!

If you enjoy reading any of these articles, please consider sharing the links on your social media or leaving a comment to show your support. Thank you!

​This Week's M.E. News

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

​Updates From M.E. Bloggers

​So many M.E. warriors ​have updated their blogs this week - I've not even managed to get through all their posts, but I'll link to them all below. I'm sure they'd love a visit and some comments. If you find their content helpful or interesting, ​please share the links on social media too!

​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

A list of this week's MEcfs news

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A list of this week's blog highlights

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A list of this week's blog highlights

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​More From ChronicallyHopeful.com

A bed and bedside table with a lamp on it. Title reads: You might be an M.E. sufferer if... part 1, guest post by David A Graham.
An empty bed in a dark room, title reads: Poem, Severe M.E. is... What it's like living with severe Myalgic Encephalomyelitis
Title reads My chronic illness Story, How it all started and how you can help, by Chronically Hopeful, Picture of Char lying in bed under blankets, shes in an ME flare wearing sunglasses and headphones
#MillionsMissing Personalised poster for ME awareness. How to get your own millions missing poster
10 Important Life Lessons learned from Chronic Illness, by Chronically Hopeful. A woman sits by the window, gazing out while holding a cup of tea. She has shoulder length hair and is smiling contemplatively.
In a dark room a hand is held up to block the light that is shining in. Title reads, Photophobia in ME and CFS. 20 Patients share their experience.

​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 | Gallery 
My Amazon Wishlists: ​Art & Hobbies | Books
​I'm also on: Pinterest | Bloglovin’ | Mix | Flipboard 

Frequently Asked Questions About Myalgic Encephalomyelitis

Blue emojis with quizzical look on their faces. Title reads: Frequently asked questions about M.E. Elaborating on terminology and topics I commonly refer to.

​As this community grows I get more and more questions about certain words or acronyms I use in my writing and graphics, so I thought I would create a page to answer some of the most frequently asked questions about M.E.

I hope this will be helpful to you, please share any of the images from this page. It would help us raise awareness and eliminate stigma if more people understood this condition.

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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.
A girl lying on her bed, writing in her jouornal. TItle reads: bullet journal helpful for people with chronic illness
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