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!
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
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
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
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
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
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!
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
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 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
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 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
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!
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 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
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
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
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
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.
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
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
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
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
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
I can't read this without a smile on my face and shaking my head in agreement. In this three-part series our guest author, David Graham, shares his humorous take on life with Myalgic Encephalomyelitis. I think it also ties in wonderfully with our Effects Of M.E. awareness campaign. I hope it makes you giggle as much as I am!
Grab a cuppa and get comfy - it's time for some weekend reading! I've gathered together a collection of some of this week's M.E. news as well as some lovely blog updates from the community.
Greg has been caring for his wife, Linda, for over 20 years and is a passionate advocate for those most severely affected by Myalgic Encephalomyelitis. In this first part of the series he explains how incredibly sensitive Linda is to any sort of stimulation. How every aspect of her care can have a detrimental effect on her well being and how every moment has to be thought out and executed carefully, including when and how he moves, speaks or does anything anywhere in the house. >> Read More
As many people with M.E. know, it doesn't take running a marathon to feel like we have. We get similar effects from just walking a few steps and in the more severe cases, just sitting up can have the same effects as running a race would have on a healthy person.
This is due to the body moving from aerobic metabolism to anaerobic metabolism - it starts to produce lactic acid, carbon dioxide and lactate in the cells, and reduces our endurance. In a healthy person this process only kicks in after very strenuous or prolonged activity. Using a heart rate monitor can track this process and help us manage our activity levels. >> Read More
Gigi has Severe M.E. and has been suffering neglect and abuse at the Children’s Ward in Lewisham Hospital, London where she has been for 4 months. Her parents fought for months to get her the help she needed and she was eventually admitted when she was at risk of dying. She is now tube fed and unable to speak or move after being forced to sit upright, participate in physiotherapy and made to remove her eye mask and use tinted glasses instead.
They refuse to acknowledge her symptoms are from Myalgic Encephalomyelitis and have stopped her pain medication. They have also threatened forced institutionalization, blaming her inability to talk, eat or walk on "pervasive refusal syndrome" which means they believe she is consciously or subconsciously refusing to participate in life due to a real or imagined trauma.
Gigi wants to go home and her parents want her back home, they are in desperate need of legal council and are also fundraising for the eventual legal fees. Can you help in any way? >> Read More
It turns out that just because your doctor does home calls or you can get your blood drawn from the comfort of your bed, doesn't mean all services will be provided at home.
For those who are housebound with chronic illness and disability, this means that potentially life saving exams like the cervical screening are unobtainable. Even though the test itself is quite easy to perform, there is no provision currently in the NHS that allows for these screenings to be carried out in a patient's home. >> Read More
An recent independent study by Cara Tomas et al found that the mitochondrial energy score (MES) protocol used in the Mitochondrial Function Profile Test is an unreliable diagnostic test for ME/CFS.
In this article Dr Sarah Myhill and Dr John McLaren Howard respond to the paper with clear and detailed explanations for the seemingly contradictory findings in the Cara Tomas study. They also explain that the test was never meant to be a diagnostic tool, but has been very helpful in monitoring mitochondrial function and identifying the reasons for dysfunction. >> Read More
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!
It took Emma years to finally start accepting that she was ill and that this was her new life. She first had to learn that acceptance does not mean giving up or resigning herself to being ill, but instead brought her peace of mind and allowed her to start really living within her limits. >> Read More
When living with M.E. we are often confined to our homes and unable to participate in the day to day activities that might seem mundane and boring to everybody else. This means that we tend to experience great joy and gratitude when we are able, on the odd occasion, to accomplish a very ordinary task. >> Read More
We know that 25% of people with M.E. are severely affected, but did you know that 2% are Very Severely affected - living with an unrelenting onslaught of debilitating and torturous symptoms. After more than 20 years of caring for his wife, Greg has accumulated a great wealth of knowledge about caring for people with Very Severe M.E. That vast knowledge and his compassionate nature come together in a new series of blog posts focusing on the 2% >> Read More
We've all been there: your symptoms start flaring and then you crash - you've overdone it again despite your best efforts. The next thing we do is try to figure out what went wrong. We tried so hard to stay within our limits. We took precautions. Why is this happening?
I agree completely with Julie on this point, I think rest and distraction are far better for us than stressing over why. >> Read More
Living with Severe M.E. has changed her life a lot, including the purose of her blog. dSavannah shares 7 things that have changed and 7 lessons she's learned over the past 7 years of blogging. Some great truths in this post! >> Read More
It's so wonderful to see people coming together to help a fellow warrior give their garden a make-over! Corina spent much time and energy designing her new garden and then it was over to her friends to make it happen. Now she has a beautiful oasis to enjoy. >> Read More
August 8 is Severe M.E. Awareness Day. A day to give a voice to the millions of people around the world who are living in isolation and torment due to the harsh effects of Myalgic Encephalomyelitis.
25% of people with M.E. are housebound or bedridden. The most severe living in darkness and silence for years... decades even. Neglected, misunderstood, vulnerable and severely disabled, yet they carry on fighting, waiting, hoping. Moment by moment. One day their breakthrough will come. One day they will be believed and helped.
This day is for them, we speak for them, we shine a light into that darkness and show the world what Severe M.E. is really like.