Category Archives for "M.E. News"

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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​More About Life With M.E.

A girl lying on her bed, writing in her jouornal. TItle reads: bullet journal helpful for people with chronic illness
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
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ME CFS Flares, How to cope BLOG
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​Thank You For Stopping By!

​​For more conversation on this topic, why not ​join me on
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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!

​This Week's M.E. News

​The ​paragraphs ​in this section might include ​​some of my own thoughts in italics​, feel free to add your own thoughts in the comments section at the bottom of this page too!

Please share any of these articles if you have found them interesting or helpful - it will help us to raise awareness.

​Petition requesting EU fund biomedical research

​This week Evelien Van Den Brink, a dutch citizen with Severe ME, spoke to the Committee on Petitions in the European Parliament ​while lying on her stretcher. She made a powerful appeal to members of parliament, asking them to fund biomedical research into M.E. ​Her appeal was met with applause and a decision to keep the petition for funding open although the minister's reply was that they do not allocate funding to specific ​diseases. >> Read More & Watch Evelien's appeal

​EU citizens can sign the petition ​requesting biomedical research funding here.

​Disappointment over Cochrane review on ME/CFS

​Cochrane is an independent review agency​ of international researchers and organisations​. It evaluates the quality of medical evidence and their reviews are highly respected in the medical field. 

This week the ME community was once again disappointed by the Cochrane review on exercise therapies for ME. ​The main reason being their ​conclusion that ​exercise therapy "probably has a positive effect on fatigue in adults with CFS". They say that they reached this conclusion due to lack of evidence to support otherwise.

It is important to keep in mind that their review was based on evidence related to patients diagnosed with the very broad Oxford criteria which focuses on fatigue as the ​defining symptom, not PEM. So this review may not apply to people diagnosed with other criteria such as the CCC or ICC which require PEM/PENE as a ​mandatory symptom and likely includes patients with all sorts of conditions which have fatigue as a key symptom. Cochrane has announced that they will launch another review in 2020 as they realise this one did not resolve the issue for ME patients. ​ >> Read The Review

​Here are the responses from some of the leading ME charities:

  • MEAction​ does not support Graded Exercise as treatment for ME and ​is  very concerned about the conclusions of this review.
  • Emerge Australia doesn't think that this review accurately reflects the patient experience and are hoping to be included in the next review process.
  • The ME Association does not agree with the way​ Cochrane analysed the evidence for GET​ nor does it agree with their conclusions on the matter, but they are encouraged that Cochrane is willing to work with ME patients and charities to produce a more robust review in the future.

​Individual symposium talks now available on YouTube

​You can now ​watch or listen to the individual talks from the OMF-sponsored ​Community Symposium on the Molecular Basis of ME/CFS that recently took place at Stanford University​. Unfortunately transcripts are not yet available, but will be coming soon.​ >> ​Go To Playlist

​Postcards​ To Doctors ​is up and ​running again (US)

​Doctors, nurses and social workers, can receive continuing education credits by watching Unrest​. This CME program, in partnership with MEAction, is available through the American Medical Women’s Association and Indiana University School of Medicine.

ME Action launched a great ​initiative through which patients and allies can invite their local health care providers to participate in this ​program to earn extra CME credits by sending hand-written postcards. It's called Postcards To Doctors. >> Read More

​A leaflet to help school nurses support pupils with M.E.

​Emerge Australia have created a leaflet to help school nurses better understand M.E. and how they can help the pupil and the school better manage the condition. It includes facts about M.E. and how it affects a patient and ​lists recommended adjustments that can be made at school to accommodate the child with M.E. You can download the leaflet here or read more here.

​Flu Season​: Should you get the flu shot?

Whether or not to get the shot is a very personal choice, some people with M.E. seem to find it beneficial, while others say it made them worse. In the M.E. community there seem to be 2 distinct groups of people: those who fall ill constantly, picking up every bug going around, and those who don't seem to pick up another virus after falling ill with M.E. Personally, I'm in the second group and have never felt the need for extra protection from the flu. Below are some articles that could help you decide:

ME Association: free leaflet about the Flu vaccine (UK)

​There are no clear answers as to whether of not ​you should or shouldn't have the vaccine ​if you have M.E. The NHS does however provide free shots annually to those who are at higher risk of complications if they get the flu. This ​covers people with pre-existing conditions, including neaurological conditions such as M.E.

The ME Association has updated their leaflet about the flu vaccine, you can download it here and speak to your doctor about the options​ or read more here.

Virology: 2 reasons to get the flu shot annually

Gertrude U Rey from Virology Blog is explaining the reasons in favour of getting the flu shot and says that although both vaccinated and unvaccinated people can fall ill, the most severe cases are usually those who were not vaccinated. >> Read More

​ICO slaps decision notice on General Medical Council

Passionate ME advocate, Dr Sarah Myhill, made a complaint to the General Medical Council (GMC) about the PACE Trial authors ​last year and they recently rejected the complaint. Dr Myhill tried to obtain the evidence base for their rejection, and has been consistently denied proof of evidence for their decision. She then complained to the Information Commissioner's Office (ICO) and they have upheld her complaint.

The ICO has given a Decision Notice ​to the GMC. The GMC ​is now required to release the evidence ​on which it based its decision not to investigate the PACE authors. If they don't, they are to admit that th​eir decision was not based on any evidence at all. If there is no evidence base,​ Dr Myhill will take their decision not to investigate the PACE authors to the High Court for a Judicial Review. >> Read More

Additional Articles Of Interest

​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!

​Clare shares her adventures on her ​powerchair named Frog

​Clare has spent the past 9 years being pushed in wheelchair, dependent on others to get her around, ​but last month she was able to go on a little holiday with her family to the coast and this time she could move about more independently on her new powerchair. This week she's telling us all about her ​adventures with Frog. >> Read More

​Ali shares some tips on ​learning to trust your instincts

​Being a very rational and logical thinker, Ali was not used to even recognising her natural instincts about things. It is something she has learned since becoming ill with ME. This week she is sharing some of the ways she has learned to hear and trust her instincts when making decisions. >> Read More

​ME/CFS Skeptic ponders why scientists are turning a blind eye to blinding

​Blinding is the process by which trial participants and therapists are kept unaware of who is reveiving the treatments and who is not. This process is meant to prevent ​placebo effects and result bias which comes when you are expecting a certain outcome. This week ​Skeptic shares the fascinating history of, and highlights the importance of, blinding in randomised, controlled trials.  >> Read More

​Whitney applies Dumbledore's advice to life with ​​invisible illness

​People with M.E. often hear the comment ​"it's all in your head". Harry Potter asked Dumbledore once "​Is this real? Or has this been happening inside my head?" and he replied "Of course it’s happening inside your head, Harry, but why on earth should that mean that it is not real?" 

This week Whitney shares her thoughts on the subject and uses that scene from Harry Potter to illustrate her point. She's also sharing a few responses she will use next time she is told "it's all in your head". >> Read More

​Corina shares her love of puppet-making

​Corina has loved making dolls and puppets since she was a young child. This week she shares her story, how it all started, how illness affected her ability to teach puppet-making and how she finally adapted her methods so that she could continue making puppets and teaching others to do the same. >> Read More

​Naomi continues her review of the BACME guidelines

​A couple of weeks ago we saw Naomi's first post in this series on the British Association of CFS/ME (BACME) guidelines on ​ME.  This week she is ​​focusing on ​the guidelines' incorrect ​assumption that deconditioning ​is a key factor in the ongoing symptoms of ME and ​their recommendation for ​incremental pacing and graded activity as a treatment​, ​as well as their failure to address other issues ​relating to severe ME. >> Read More

A list of this week's MEcfs news

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​​For more conversation on this topic, why not ​join me on
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​More About Life With M.E.

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Title reads Join The MEcfs Community, Social group for ME & CFS patients and carers. Photo of blue forget-me-notspin by Chronically Hopeful

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.
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​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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​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.

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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 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
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