This Week’s M.E. News

It’s May, which means it’s M.E. Awareness Month, so to get things going, I’m sharing this week’s ME News Highlights and Blog updates from the ME Community. Although most of the news this week is focused on the awareness campaigns that will be running this month, there are some other interesting articles to read too.

Are you comfy? Got a drink or snack ready? I know how hard it can with brain fog to read or stay focused on long blocks of text, so I’ll do my best each week to summarise the latest ME News and Blog Posts into short, easy to read paragraphs for you.

Please let me know in the comments below if there is any way I can improve these posts to make them more accessible to you.

Please share any of the following articles on your social media accounts, it will help raise awareness and support the organisations that are working so hard for people with M.E.

Should People With M.E. Or CFS Be Vaccinated?

This week Cort Johnson asks four doctors whether or not they think people with M.E. should take the vaccination. Months ago a few of them had said it was better to wait, but they all now agree that the benefits outweigh the risks for the majority of people with M.E.

Apparently, out of the vaccines available, the Pfizer and Moderna vaccines seem to have the best outcomes with potentially shorter and less severe flares as well as better protection compared to the Astra/Zeneca and Johnson & Johnson vaccines. Most patients return to baseline within 2 weeks.

Also, the second shot generally causes a more severe reaction than the first one, regardless of which vaccine it is.

All the doctors interviewed, as well as Dr Nancy Climas, have suggested taking antihistamines and antioxidants prior to and on the day of the vaccine. Dr Climas also suggests staying in the hospital for a few hours after the shots in case of a reaction as Mast Cell activation is a possibility.

The only reason not to take the vaccine, according to the doctors interviewed, is if you suffer from allergies to any of the ingredients or if you are currently flaring. They suggest you be at baseline on the day of vaccination.

In this article, Cort also reviews the vaccine reaction poll results and urges anybody with M.E. who has had a COVID vaccine to take the poll too. Some people with M.E. have reported improvement from M.E. since having the vaccine shots, so this poll will help to create a clearer picture of how the vaccines are affecting people with M.E. on a larger scale and whether this could be a viable area of investigation. >> Read More

Long Term Effects Of COVID On People With M.E.

This week ME Action, in collaboration with Action For ME, have shared the results of their survey on the effects of contracting COVID if you already have ME/CFS.

Over 70% of respondents reported a worsening of ME symptoms and the majority also reported new symptoms like breathlessness, dizziness or chest pains. Also, over two thirds of participants have experienced this worsened state for more than 6 months.

They believe these results prove that people with ME are vulnerable to COVID and should be put on the at-risk list for early vaccination. The survey is still open for those who have not yet reported their experience of having COVID and ME. >> Read More

Messages Of Hope

The Bateman Horne Centre is hosting a campaign of hope. Patients and allies can make a simple poster, writing a word or phrase of hope to ME patients worldwide and sending a photo of themselves holding the poster And a pair of unused shoes to a dedicated email address.

They will put all these images into a video which will be used to encourage people with ME as well as raising awareness. Some phrases used last year were: We are in this together, You are loved, You are not alone, Keep the hope alive, etc. >> Read More

A Moment Of Pause To #RememberME

The ME Association are hosting a minute of pause to remember those lost to ME and everybody else affected by this life-draining illness, including family, friends and wider communities.

On May 12 at 12 noon we will stop and collectively pay our respects to those we have lost along the way, think about the effects of ME and what it is that would most inspire hope in our community. Then if possible, they ask us to go online and share our stories to help raise awareness. They’ve created a Twibbon you can add to your profile pictures too. >> Read More

A 1 Million Dollar Donation For ME Research!

As the Open Medicine Foundation launches their May Momentum fundraising campaign today, they have announced the very generous and much needed donation of $1,000,000 by the Khosla Family Foundation. This grant will be funding important research at the ME/CFS Collaborations at Uppsala and Melbourne.

OMF is hosting an open house today where you can hear the latest updates on the exciting research happening. They also invite people with ME and allies to host their own fundraisers to help boost funding for research this year. Tips and resources available. >> 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!

Protecting Wildlife While Stuck In Bed

This week Penny shares her heartbreak at the way the nearby landscape is being developed, forcing local wildlife to find new pockets of nature to call home. She shares beautiful photos, memories and poetry about these beautiful fields that have brought her and her family so much joy and respite over the years. >> Read More

Writing A Book On A Smartphone

Jamison shares his experience of writing a book on his mobile phone while suffering from Very Severe M.E. He shares how he became less and less functional after starting the writing process until he was unable to walk, talk or eat on his own anymore and had to stop writing too.

He slowly returned to writing when his health started improving again, but light sensitivity made the writing process difficult. He found some creative ways to overcome this obstacle only to discover, when he had finished the manuscript, that no literary agent wanted to accept his book proposal.

Well, his book has finally been published, almost a decade after he started writing it, and this week he’s shared how he made that happen. >> Read More

What Pacing Really Looks Like

Anna shares some interesting thoughts on what pacing looks like in the real world. When we have responsibilities and commitments and relationships and when life just happens.

She points out that sometimes we will make the choice to do more than we know we should, just because we can in that moment, and that should be okay. We shouldn’t be judged or even judge ourselves too harshly for sometimes “getting things wrong” or making choices that will affect our health negatively. Sometimes it’s required and sometimes we just want to get things done. >> Read More

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Creating Sanctuary At Home, One Tiny Task At A Time

Char invites you to join in her new weekly challenge – tackling chores and home decor while chronically ill and with very little energy. Each week she’ll be sharing a Tiny Task which will be done over multiple short sessions, including before and after photos and tips on how to make each task more manageable. First up, her very cluttered bedside trolley! >> Read More

Hypersensitivity In ME/CFS

Jo has been sharing her experience of hypersensitivity and other bizarre symptoms lately and has had quite a bit of feedback from others in the ME/CFS community who are experiencing similar things.

This week she shares a personal account of how the behaviour of a careless carer is affecting her body as well as sharing some quotes from her readers that have sent in their own experience of hypersensitivity. >> Read More

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M.E. Advocacy Tools And Resources For May

Photo of hundreds of empty pairs of shoes in a town square representing th millions of ME/cfs patients missing from society. Title reads, How you can help the Millions Missing, Myalgic Encephalomyelitis awareness and advocacy,by Chronically Hopeful

Find out how you can help people with ME, by Chronically Hopeful Char

Profile Pics To Use On Your Social Media Profiles

These profile pictures are all square, but were designed to work as round profile pictures just like I’ve demonstrated below. This is the same image, but one is in a round frame like many social media platforms would use. Feel free to download and use any of these to help you raise awareness on Facebook, Twitter, Instagram, WhatsApp, or anywhere else you have a profile.