Tag Archives for " Link-up "

Getting Organised For The Year Ahead – Personal Update, Jan 2020

A photo of a bookshelf with books and greeting cards. Title reads: Getting organised for the year ahead.

​I am so excited for the year that lies ahead; something about new beginnings just really ​makes me happy. For me, 2019 was quite a difficult year health wise. It started off really well and then I think I overdid things in May with my very ambitious ME awareness campaigns and it totally wiped me out for the rest of the year. So I will try hard not to make the same mistake again this year.

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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?
A crocheted twiddle muff with tassels and buttons on it lying on the carpet. Title reads, How to crochet s twiddle muff
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.

This Week’s M.E. News – Week 36, 2019

Picture of green ferns, Title reads: M.E. Community News, News headlines and blog highlights from week 36 of 2019

​I'm running a bit late this week, but here's a summary of the latest news ​on Myalgic Encephalomyelitis as well as blog updates from our fellow warriors. So, make yourself comfortable and let's catch up!

It seems to have been a busy week in our community, lots of new articles were published and there was the annual symposium at Stanford too. So I'm sharing a couple more articles than usual. Enjoy.

​This Week's M.E. News

If you enjoy any of these linked articles, please share them on social media. The more you share our content, the more people will see it and the more understanding there will be around M.E. Thank you for your support!

M.E. charities got together in Scotland to discuss healthcare and support for people with M.E.

A number of M.E. charities, including the Scottish ME Coalition, the ME Association, #MEAction Scotland, ME Research UK, Action For ME and Tymes Trust, got together with reprasentatives from the Scottish Health and Social Care Department, the lead for Patient Participation Groups and the research manager in the Chief Scientist Office last month to discuss what changes might be made to health care and support services for people with M.E. 

You can read reports about the meeting, which was chaired by the Neurological Alliance of Scotland, by the ME Association, #MEAction and Action For ME  

​Cort Johnson continues to explore exciting treatment options for Neuroendocrine Dysfunctions in M.E.

​In this article, Cort explores the use of supplementary Thyroid hormones, Adrenal hormones and Growth hormones ​as well as treatments regulating the hypothalamus and pituitary glands. 

Apparently there are many instances where people with M.E. and Fibromyalgia have ​recovered through the use of T3 Thyroid supplementation. ​High doses of T3 seem to have positive effects on the immune system and metabolic rates, but more research is needed.

Carefully controlled Growth hormone has also shown to have positive effects on reducing ​muscle and protein loss, ​aiding tissue repair, controlling inflammatory cytokines, and more. All of which seem to reduce pain levels and improve overall quality of life in long term illness.

Low doses of Hydrocortisone have also had some positive results, including the reduction of fatigue and lowering overall disability scores. As exciting as this all sounds, ​​research into long-term critical illness ​suggests that treatments ​targeting the functioning of the ​Hypothalamus and Pituitary glands could be safer and ​more effective ​at normalising metabolism than supplementation with the peripheral hormones mentioned above.​ More research and robust trials are definitely needed. >> Read Part 1 & Part 2

#MEAction celebrates Wilhelmina Jenkins' tireless advocacy

​Wilhelmina has been ill with M.E. since 1983. At the time she was ​working on her PhD in physics at Howard University as well as teaching physics. Her advocacy journey started before the internet and social media were around and she has ​continued to raise awareness and advocate for almost 40 years now.

Since joining #MEAction, she has taken on key activism roles like managing the People Of Colour With M.E. Facebook group and organising #MEAction Georgia. This week she is the featured volunteer at #MEAction and is sharing her story. >> Read More

​This month the ME Association ​is featuring a series on ​life as a student with M.E.

​First up in this series, Emily walks us through her first term of undergraduate study. It's not been easy at all, but she's made it through and is sharing some of her experiences, both good and not so good - giving ​future chronically ill students lots to consider.

There are so many things that could hinder success when you have a debilitating chronic illness or disability, ​so Emily has had to be her own advocate for all sorts of things. ​Some of the things she's has to push for are ​having lecture rooms moved ​because they were inaccessible, ​getting the on-campus shop to organise quiet hours to reduce sensory overload ​and working with the student support team to make adjustments ​that best suit her needs. >> Read More

People in the UK with invisible disabilities can now apply for a Blue Badge

England's Blue Badge scheme has been extended as of 30 August 2019 to include people with invisible disabilities such as autism, arthritis, dementia, Parkinsons and other invisible disorders. The Department for Transport in collaboration with specialists has expanded the eligibility criteria for the badges in the hope that it will provide better access to more people and help combat the loneliness and isolation often caused by disability. >> Read More

A group of US M.E. experts provide a handout on the diagnosis and management of ME/CFS

The ME/CFS Clinician Coalition in the US has put together a handout to help the medical community better understand how to recognise and treat M.E. The document also contains a number of links to help clinicians find further information.

The handout is available for download, free of charge (click here) and may be printed off or emailed by patients to their health care providers. >> Read More

NICE calls for evidence for M.E. guidelines review

The National Institute for Health and Care Excellence (NICE) in the UK is calling for evidence to help them with their review of the guidelines regarding the diagnosis and management of M.E.

They are looking for scientific data based evidence (studies or trials) on specific areas of interest, like mortality, physical functioning, cognitive dysfunction, etc the full list is on their website. 

Anybody who knows of relevant studies is asked to forward the information to them. The call for evidence response form is available on the linked web page. All contributions must be in by 3 October 2019. >> Read More

​Updates From M.E. Bloggers

The following ​M.E. warriors ​have ​published updates this week. I'm sure they'd love to know you've stopped by, so if you find any of their content ​interesting or helpful, ​​why not leave a comment - it's always a blessing to receive feedback and encouragement from our readers.

​Lorna says M.E. has taught her who she really is

​Lorna shares her story, she talks about how she used to experience being a teacher and what this time of the year meant for her. She also talks about the self-doubt and shame one feels when you lose the job that had become your identity.

She goes on to point out that we are so much more than our careers. She has also discovered, as ​have I, that the characteristics and skills we once used ​for work can be transferred and used in new ways ​despite illness. >> Read More

​Amy ​shares 5 things she does to get ready for autumn

​​This week ​Amy ​is sharing her excitement about this new season and all the things she loves about it. ​It's a busy and exciting time for her... ​between preparing for the new school year ​and planning her wedding​ - she's sharing 5 ways she likes to prepare for Autumn. >> Read More

​Veronique shares 18 ways acting out can help you cope ​with chronic illness

​As a doctor and a patient, Veronique explores how trauma affects our body and the role it has in chronic illness. In this post she explains how acting out can liberate us from the fight - flight - freeze cycle that we might be stuck in. ​She uses it as a tool to free the nervous system, to get unstuck, experience the present moment and feel.

The idea is to act on our body's impulses ​by doing something a little rebellious. It's a concious choice to do something small, fun and a little daring rather than just letting our emotions or numbness take over. >> Read More

​Julie has had to let go of her dream, but trusts that something better lies ahead

​Julie has been staying in Spain while she builds her business, it has been a dream of hers which she has been working hard towards, but a recent change in social security has meant that she has had to make a tough decision. 

After mourning the loss of her dream, and despite her plans being unravelled, she has found acceptance and is excited for what lies ahead, ​confident that better things are ​coming. >> Read More

Jo discusses why asking for help is so hard

In this very honest post, Jo talks about her struggles with mental health - anxiety, panic, self-doubt and the fear of looking weak or being vulnerable. 

She goes on to recount her recent experience of asking for help and the positive response she got. She points out how much effort and courage it takes to reach out and let others know how much you're struggling. I loved reading her realisation that asking for help is not a sign of weakness, but of strength and wisdom. >> Read More

Sophie ​​shares the 5 s​tages we go through when coming to terms with a diagnosis

​For most people, getting a chronic diagnosis comes as a shock, I think there are few of us who head straight to acceptance the way I did. Most people will cycle through the 5 stages of grief for years.

Sophie walks us through these stages and how she experienced them. I​ found her observation on acceptance really interesting, she points out that acceptance isn't a final destination, but rather a place that ​people might visit from time to time, just like grief and anger, they come around again. The key being accepting ​which stage you are at now. >> 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

Man in a wheelchair with his hand on the wheel. Title reads: Not all disabilities are visible. International day of people with disabilities.
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.
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
Close up of herbs on a windowsill. Title reads: Enjoying nature while stuck indoors. Bring the beauty of nature to your room
ME CFS Flares, How to cope BLOG
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

This Week’s M.E. News – Week 35, 2019

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

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

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

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

​This Week's M.E. News

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

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

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

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

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

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

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

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

​Seven tips ​to help you apply for disability benefits

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

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

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

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

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

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

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

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

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

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

​Updates From M.E. Bloggers

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

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

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

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

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

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

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

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

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

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

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

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

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

Julie hosts a paint by numbers giveaway

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

A list of this week's MEcfs news

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A list of this week's blog highlights

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This Week’s M.E. News – Week 34, 2019

Picture of orange and red tulips. Title reads: M.E. community news. News headlines and blog highlights for week 34 of 2019

​It's that time of the week again! ​Pull up a chair and grab some snacks, we've got lots of exciting news and interesting blog updates from the M.E. community this week. Myalgic Encephalomyelitis is getting more and more visibility in the media and we have all sorts of allies stepping up to support our campaigns. These are exciting times!

Remember, an easy way to contribute to our ​cause is simply to share articles and personal stories from our community. The more you share, the more eyes will see our content, and the closer we get to eliminating stigma and educating the masses. ​Goal!

​This Week's M.E. News

​​​Canadian Health Minister ​pledges $1.4 million to study ​Myalgic Encephalomyelitis

​On Thursday the Canadian Institutes of Health Research announced they will be spending $1.4 million on M.E. in a bid to attract more researchers to the field. The money will be used to create a national network whose aim will be​:
- investigating the causes of M.E. (including viral and genetic)
- linking patients and researchers in Canada and the US, sharing their work.
- supporting graduate students who are working on M.E.
- drawing on the wisdom of people with M.E. as active research partners.
The network headquarters will be at the Sainte-Justine University Hospital Research Centre in Montreal. >> Read More

​A group of Physiotherapists in the UK aim to improve the experience of people with M.E.

​A group of Physiotherapists, in collaboration with The M.E. Association, have conducted a poll among people with M.E. to assess patient experience and learn how their experience of Physiotherapy can be improved.

The results showed that each person experiences the illness in a different way and things that some people found beneficial, others found detrimental. The conclusion is ​that a standardised approach is not appropriate and ideally Physiotherapy interventions need to be tailored to each individual person with M.E. >> Read More

​School nurses and colleagues in the US can earn extra credit through an online continued education course on Myalgic Encephalomyelitis in young people

​The Northeastern University School Health Academy, ​in collaboration with the Massachusetts ME/CFS & FM Association, are launching a continuing nursing education program where school nurses, councelors, social workers and teachers can earn contact hours and Personal Development Points by learning about M.E. from pediatricians, children with M.E. and their parents. >> Read More

​Registration is now open for Stanford University's Community Symposium on the Molecular Basis of ME/CFS

​The symposium will be held at Stanford University on Saturday, ​7 September 2019. ​The speakers will meet for a 2-day conference prior to the symposium on Saturday where they will then share their research with the community. The M.E. community, whether patient or ally, ​is ​welcome to join the ​symposium​ in person or through live stream. ​A great opportunity to meet the scientists and clinicians who are tirelessly fighting for us and find out about the latest research ​on M.E.

Be sure to register whether attending in person or online​. Registration closes on ​26 August 2019. >> Read More

​How mobility service animals can help people with M.E. 

​The Bateman Horne Centre, with input from dog trainer Kelley Rosequist,​ explain how service animals can help people with M.E. with mobility support. Mobility support animals are different to therapy dogs or emotional support animals in that they help the ​handler physically in very practical ways.

A mobility service dog could help a person with M.E. navigate through crowded areas, pick things up ​off the floor, help them in and out of vehicles or chairs, bracing ​them, opening doors, ​switching lights on ​or off as well as fetching ​carers or medical help​ when needed. >> Read More

​Updates From M.E. Bloggers

The following ​M.E. bloggers have published updates this week. If you find any of their posts interesting or helpful, why not let them know in a comment and share the links on social media​? Sharing will help raise awareness ​as well as support your fellow warriors.

​Clare shares her thoughts on various power assisted wheelchair options

​As many of us with Moderate to Severe M.E. know, self-propelled wheelchairs can be extremely tiring to control. Clare ​has been on the hunt for an affordable alternative that ​would be easy enough to assemble and dismantle as well as offering the freedom of indepentendly moving about. In this post she discusses her options and thought process in choosing the ​chair she ​eventually got. >> Read More

Greg publishes a pdf about proper symptom identification in M.E.

Unlike other major illnesses, there is no clear clinical pathway for Myalgic Encephalomyelitis. There is no monitoring, no support and hardly any respect. The services that have been set up are few and far between and many are horribly unfit for purpose. This is due to decades of misinformation, psychiatric lobbying and a severe lack of government funding for research worldwide. 

In his article, Greg discusses why digging deeper to identify the causes of each symptom is so important and how it will help eliminate misunderstanding, neglect and abuse of people with M.E. >> Read More

​David shares 20 humorous quotes about life with M.E.

​For the past 2 years ​David has been struggling with post viral M.E. In this post he shares some of his observations on what it's like to live with Myalgic Encephalomyelitis.

​What would you do if you saw Ron Davis at the supermarket? Do you hold the fate of the oceanic ecosystem in your hands? What do you have in common with deep-fried ice cream? If you're in need of a giggle, this one's for you! >> Read More

​Emma shares some ​helpful insights​ on the power of letting go

​The struggle between fighting to recover and acceptance seems to be something every chronically ill person struggles with at some point. But realising that acceptance is not the same as giving up is an important part of moving forwards. In this post, Emma shares some incredibly helpful ​truths about surrender and letting go. Some of my favourite points are:
- ​You can feel peace, even ​while experiencing phyical discomfort.
- Trust that ​God is supporting you.
- Don't push through just to please others.
- Let go of over-analysing and worry. >> Read More

​Jo shares 10 reasons why pets are beneficial for people with M.E.

​We all know that pets offer unconditional love, companionship and cuddles, ​and those alone are plenty of reason to think about adopting a pet, but there are many ​other great reasons to have a pet too, if you can. ​Although, this post isn't just a list of reasons to get a pet, Jo has actually shared loads of quotes and pet photos ​from the chronic illness community! It's a wonderful gallery of cute critters and their loving humans. So, if you're up for a cuteness overload, go check it out! >> 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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