Category Archives for "M.E. News"

This Week’s M.E. News – Week 3, 2020

A bunch of coral roses, title reads ME Community News. News Headlines and Blog Hightlighs, Week 3

​After a long break, I'm back with this week's ME News highlights and blog updates from the ME community. So make yourself comfortable and let's have a catch up with our fellow warriors and allies!

​Remember, if you find any of these posts ​helpful or interesting, please share them on your social media, it will help ​to raise awareness and eliminate stigma.

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This Week’s M.E. News – Week 43, 2019

A bunch of orange flowers with bluish leaves, Title reads: M.E. Community News, News headlines and blog highlights from week 43 of 2019

​Brrr... It's ​been so cold here in the UK this week. It's the perfect weather to wrap up in a soft blanket with a hot drink and catch up on some community news! As usual, I've summarised this week's top articles about Myalgic Encephalomyelitis as well as the latest blog updates from some of our fellow warriors. Enjoy!

​This Week's M.E. News

Please share any of these articles on your social media accounts - this will help raise awareness and eliminate stigma by highlighting ongoing good science and current advocacy campaigns.

​MEAction launches new campaign and petition

​The MEAction network has this week launched the "Not Enough For ME" campaign which will focus on 5 items they want addressed by the NIH ​now:

  1. Designated funding for ME research
  2. Experts to meet and decide on patient selection methods and criteria
  3. Funding ​to identify biomarkers
  4. Funding clinical trial networks and treatment trials
  5. Address stigma and the lack of clinicians which impede research

​They are leading this community campaign in order to push the NIH to action. They say that after 30 years of neglect and stigmatization, the community is in crisis and needs action - they need relief now. Promises and recommendations are no longer acceptable without action. >> Read More & Sign The Petition

Reprogram ​your immune system with micro-immunotherapy

​Micro-immunotherapy was developed in ​the 1970's and is still widely used in Europe today. It helps ​patients to reprogramme their immune system​ by taking ​small doses of bio-identical ​messengers of inflammation ​such as cytokines, growth factors, neurotransmitters, hormones and ​certain nucleic acids which produce anti-viral effects.

​This treatment is used in any condition ​of acute or chronic inflammation ​caused by chronic infection ​of a virus, allergy or autoimmunity. It can be safely combined with other treatments and is really helpful for severe patients who are intolerant to most other treatment options.

Dr Myhill is training NHW practitioners in this treatment. Here's how you can get started on it >> Read More

​Three ​new grants ​fund biomedical research in the UK

​This week the ME Association announced that their Ramsay Research Fund was able to make 3 new grants for biomedical research into M.E. The RRF, which has already invested more than a million pounds in biomedical research, is completely reliant on donations and membership fees.

The three grants will provide much needed funding for:

  • The UK ME/CFS Biobank - ensuring a steady supply of blood samples to researchers worldwide.
  • Dr Karl Morten ​and the University of Oxford - ​allowing scientists to continue ​their search for a link between blood plasma abnormalities and dysfunctional ​energy production​ in people with M.E.
  • Dr Keith Geraghty and the University of Manchester - analysing what happens to ​people with M.E. ​during the time between ​onset of their symptoms and ​getting a diagnosis. The data collected will be used in the development of the new NICE guidelines.

>> Read More

​Urging businesses to sponsor ​M.E. training in schools

​The recent House of Commons Education Committee Report on ​Special Educational Needs and Disabilities (SEND) made it clear that there is a lack of funding holding back the implementation of training for SEND staff in schools.

Stripy Lightbulb, an online training organisation that focuses on educating the pubilc as well as businesses, healthcare professionals and educators on the realities of M.E, is urging business to ​acknowledge the crisis and sponsor SEND training in schools. >> Read More

Uncovering the origin of POTS

Postural Orthostatic Tachicardia Syndrome is common in M.E. patients and involves the cardiopulmonary and peripheral vascular systems, which are controlled by the autonomic nervous system (ANS). 

Through cardiopulmonary exercise testing with iCPET measurments, they have found that people with M.E. appear to have a preload failure (PLF) pattern at maximum exertion. Patients fall into two groups, Low Flow and High Flow Phenotypes. Some possible causes are:

  • Low Flow group: either low blood volume or a failure of the ANS to move blood from the venous side to the arterial side of circulation.
  • High Flow group: either reduced oxygen delivery (or reduction of use by the mitochondria), or what seems to be a shunt from the arterial to venous side in the peripheral circulation.

This study will provide the opportunity to identify possible drug treatments for M.E. >> Read More

​Long-awaited recognition and research into M.E.

​The Canadian government recently announced ​a $1.4-million grant to fund Alain Moreau's research. This comes after his grant application was denied just 3 years ago when they ​insisted that M.E. was not a real disease. 

​His research ​includes numerous scientists and physicians from accross Canada as well as 200 M.E. patients from Quebec who form the largest group of regularly tested patients in the community. Moreau's research ​focuses on the changes that happen at a cellular lever under mild physical stress.

This week ​CBC News covered the story and did a great job in explaining the condition and the difficulties patients and researchers face. >> Read More

​Updates From M.E. Bloggers

​Here are this week's blog updates from our fellow M.E. warriors. I'm sure they'd ​appreciate a visit and even some comments to let them know you stopped by. If you find their content helpful or interesting, ​please share the links on social media too!

​Learning lessons from ​nature in Autumn

​​Julie realised that her motivation seems to dip at the same time every year. This week she shares a lesson she has learned from nature and why she feels at peace and content with her diminished drive to be creative and get things done.  >> Read More

​Supplements to reduce chronic pain and fatigue

​This week Char is sharing ​her entire supplement ​protocol. Find out which ​supplements have helped ​her come off all ​her prescription painkillers as well as helped reduce fatigue and brain fog.​ >> Read More

​Celebrating the joys of Autumn

​Sue is sharing all the fun ways she and her family celebrate this new season. From family outings to pumpkin spiced food and of course halloween, she's included lots of photos too. >> Read More

​Reclaiming Wednesdays

​Anna highlights the difficulties caused by weekly treatment or therapy sessions, how much preparation they take and how much time we need to recover from them. She also shares her personal struggle to find some dedicated "me time" despite being isolated with chronic illness.  >> Read More

​10 must read health related books

​This week Jo shares her 10 favourite books on health. They cover a range of topics from patient experience of M.E and Mental Health ​to Doctor's and Nurse's experience at work. >> Read More

​Handy tips for when you're out in a wheelchair

​Sophie is sharing some great tips for wheelchair users. She's found some products that help make those rare outings easier and more comfortable. >> Read More

What to do when doctors refuse to do tests or help?

Brett shares Bella's latest visit to the ER. She has been in excriciating pain and is at high risk for infection. The IV pharmacy has still not helped them and the ER doctor refused to do tests - just sent them on their way. >> Read More

A list of this week's MEcfs news

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​More About Life With M.E.

Natural Health Worldwide, Healthcare for Housebound, ChronicallyHopeful
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Thank you for stopping by. Hugs, Char xx

Let's Stay In Touch

My Chronic Life Pages: Facebook | Instagram | Twitter 
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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.

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Thank you for stopping by. Hugs, Char xx

Let's Stay In Touch

My Chronic Life Pages: Facebook | Instagram | Twitter 
M.E. Awareness Pics: Facebook | Instagram | Twitter | The ME/CFS Community
I'm also on: Pinterest | Bloglovin’ | Mix | Flipboard 
Support My Work: Buy My Art | Shop My Favourite Things
Or if you'd like to send me something, here's my Amazon Wishlist - Thank you!

email chronically hopeful char at gmail dot com

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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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A list of this week's MEcfs news

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A list of this week's blog highlights

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Thank you for stopping by. Hugs, Char xx

Let's Stay In Touch

My Chronic Life Pages: Facebook | Instagram | Twitter 
M.E. Awareness Pics: Facebook | Instagram | Twitter | The ME/CFS Community
I'm also on: Pinterest | Bloglovin’ | Mix | Flipboard 
Support My Work: Buy My Art | Shop My Favourite Things
Or if you'd like to send me something, here's my Amazon Wishlist - Thank you!

email chronically hopeful char at gmail dot com

This blog was designed using Thrive Themes.

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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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