It's that time of the week again - grab some snacks, make yourself comfortable, and let's catch up! I've summarised 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!
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
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
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
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
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
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'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
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
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 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 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
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As this community grows I get more and more questions about certain words or acronyms I use in my writing and graphics, so I thought I would create a page to answer some of the most frequently asked questions about M.E.
I hope this will be helpful to you, please share any of the images from this page. It would help us raise awareness and eliminate stigma if more people understood this condition.
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!
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.
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
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
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
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
The following M.E. warriors have updated their blogs this week. I'm sure they'd love to have a visitor stop by. If you find their content helpful or interesting, why not share the links on social media too - sharing is caring!
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 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
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
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
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.
Did you know that with a small donation you could help fund vital support for people with Myalgic Encephalomyelitis in Africa? It's true! My birthday is coming up in a couple of weeks, and this year I've decided to dedicate it to support this vulnerable and chronically ill community in South Africa - and I'm counting on you to help me do it!
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.
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!
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.
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
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
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
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
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 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
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 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
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
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 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
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
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