This Week’s M.E. News – Week 36, 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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Thank you for stopping by. Hugs, Char xx
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Chronically Hopeful
Chronically Hopeful

Char was born and raised in South Africa, but has been settled in Europe for over 20 years. She's passionate about finding ways to live well, despite chronic illness.

Apart from blogging, she enjoys art, cooking, reading, gardening, gaming and learning new things. She speaks English, Italian and Afrikaans fluently and is slowly learning French too.

She used to be a teacher, but has been housebound with Myalgic Encephalomyelitis since 2015. Since then, she's focused on spending the little energy and strength she has each day on the people and activities she loves. Finding joy in the little things and celebrating the ordinary.

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