This Week’s M.E. News – Week 33, 2019
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.
This Week's M.E. News
The M.E. Association is hosting a new series focused on Very Severe M.E.
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
The Solve ME/CFS Initiative explains how we can use a heart rate monitor to manage activity and help reduce PEM
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's family urgently need legal help to restore her pain medication and get her back home
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
Jo, who has Severe M.E, shares how she fought for years to get access to a cervical screening and why many disabled women are denied this basic, potentially life-saving, medical exam.
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
Dr Myhill and Dr McLaren Howard respond to the paper on the Mitochondrial Function Profile Test
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
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!
Emma shares her journey to acceptance
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
Anna Celebrates something that might seem very ordinary to most people
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
Greg highlights the struggles of the 2% who are most severely affected by M.E.
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
Julie reflects on the energy we waste wondering "why?"
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
dSavannah celebrates 7 years of rambling
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
Corina gives us a walk through her newly made-over accessible garden
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