This Week’s M.E. News – Week 19, 2021

A black butterfly on pink azaleas

It's been a busy few days of advocacy as it's M.E. Awareness Week, so there are a lot of ME News and Blog Highlights to share this week. I am constantly amazed at the incredible creativity in this community. This week we feature quite a few poems as well as a beautiful stop motion film. Please share any of the articles linked today - they are all excellent ways to raise awareness and sharing will support and encourage the creators too.

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Note: I do my best to make these posts easy to read, if you have any suggestions that would improve the accessibility of these M.E. News  posts, please let me know in the comments below.

This Week's M.E. News

Please share any of the following articles to your social media accounts. It will help to raise awareness and support those organisations and individuals who work so hard for the M.E. community.

Paper Published On Patients In ICU With Similar Symptoms To M.E.

The Open Medicine Foundation funded a paper which has been published in Frontiers Of Medicine. It's an overview of the treatment trials Uppsala University is doing on people with prolonged critical illness in ICU.

Because of similarities in metabolic and immune dysregulation, they suggest that lessons could be learned from the treatment trials for the ICU patients which could help to solve ME/CFS as well as Post COVID-19 Syndrome.

This study could be beneficial to ME/CFS due to the similarities of the mechanisms that prevent recovery in both conditions, like suppressed endocrine activity and the cycle between inflammation, oxidative and nitrosative stress, and low thyroid activity. 

The critical conditions studied could be any severe infection or injury that results in a prolonged ICU stay. Things like heart surgery, liver disease, burns, sepsis, HIV or SARS-Cov-2 infections, etc. These patients survive critical illness, injury or trauma, but fail to recover at the usual pace, requiring treatment independently from the original illness or injury.

The paper goes on to compare various treatments for prolonged critical care patients to similar treatment trials on people with ME/CFS, highlighting similarities and lessons learned from them. >> Read The Paper Here

Requesting Feedback On Your Experience Of Healthcare For M.E.

The ME Association in the UK want to publish a report on the state of healthcare for people with M.E. They are requesting feedback from people with M.E. about their recent experiences of:

  • Primary and Secondary Healthcare:  doctors, diagnosis, specialist clinics, referrals, management plans, etc. Feedback on positive and negative experiences will be accepted. 
  • Social Care: local authorities, assessments, accessibility, carers, etc

They'd also like to hear from people who haven't been in contact with healthcare services due to bad experiences in the past, and would like to know what you think needs to be changed to improve NHS and Social Care services for people with M.E. >> Read More

A Stop Motion Animated Film About M.E.

The Open Medicine Foundation interviews Inga Topolnicki from "An Existence Project" about her powerful stop motion animation about M.E. This beautiful video (watch it below and share) is an incredibly creative and touching explanation of what life is like with M.E.  >> Read The Interview Here | Watch The Video On YouTube

You+M.E. Patient Registry Spreads Internationally

Cort Johnson has written a great article about the Solve ME/CFS Initiative's You+M.E. patient registry's branching out to Australia and what it will mean for people with M.E. globally if this project continues to grow. 

Emerge Australia is the registry's first international partner. The UK will be next.

He explains how and why patient registries work and how it might benefit the M.E. community and M.E. research. >> Read More

Other Articles Of Interest

  • The Open Medicine Foundation's useful "What Is M.E.?" webpage >> Check It Out & Share It!
  • Bateman Horne Centre shares Joe Ivie's poem "Courage" >> Read It Here
  • The ME Association shares this week's research roundup >> Read It Here
  • Bateman Horne Centre shares COVID Longhauler Lisa's Thank You message to people with M.E. >> Read It Here
This week's ME News Headlines

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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!

A Day In The Life Of A Person With M.E.

Clare shares her annual "a day in my life" post. She walks us through her daily routines, comparing this year's routine to last year. She also shares her feelings about the lifting of lockdown, the gradual return to normality and what it means for her. >> Read More

Looking For Silver Linings During The Pandemic

Susan shares her thoughts on ME during times of COVID, grateful for the fact that the pandemic has shone a light on ME/CFS and pushed for more urgent research into Post Viral Syndromes.  >> Read More

Beautiful Review Of "A Still Life: A Memoir"

Jennie shares a beautiful and thorough review of Rosie George's powerful memoir: A Still Life. >> Read The Review | Buy The Book

Time For Tea And Cake!

Anna gives us a glimpse into what her Tea Parties for M.E. look like and what the purpose behind it is, for those with M.E., their family and friends and the wider community. Find out how you can join in this Sunday's Tea Party For M.E.  >> Read More

#MillionsMissing Is For Us, Not Them

Whitney shares her misdiagnosis story and how she eventually found her diagnosis and a supportive community thanks to a tweet by somebody with M.E. during a #MillionsMissing campaign. She talks about the disappointment we experience when we feel like our posts go unread or ignored and how she's overcome that disappointment by changing her goals. >> Read More

The Effects Of COVID Vaccine On People With M.E.

Sue shares her thoughts about the effects of the COVID vaccines on people with ME. She compares her observations from within support groups to the results from Health Rising's Vaccine Side Effects Poll. >> Read More

Poetry About Life With M.E.

In the background, Char lying on her bed looking exhausted. Her poem about ME is written over the top of the photo. See tect below image.

Share The Poem!

A list of this week's MEcfs news

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A list of this week's MEcfs Blog Highlights

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More About Life With M.E.

Blue emojis with quizzical look on their faces. Title reads: Frequently asked questions about M.E. Elaborating on terminology and topics I commonly refer to.
Title reads Join The MEcfs Community, Social group for ME & CFS patients and carers. Photo of blue forget-me-notspin by Chronically Hopeful
A man sleeping next to his dog. Title reads 12 tips to help you adjust to your new normal. Are you struggling to adjust after your ME / CFS diagnosis?
A long list of symptoms, title reads: my symptoms of ME/cfs in 2015. Dozens of fluctuating symptoms.
A bed with lots of pillows in front of a blue wall. Title reads: The Effects of M.E. awareness campaign featuring quotes from people with M.E.
A woman carrying a bucket of cleaning products. Title reads: Don't do your best, do less. How to avoid the boom and bust cycle.
Thank you for stopping by. Hugs, Char xx

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email chronically hopeful char at gmail dot com

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