This Week’s M.E. News

M.E. Awareness Month is well under way now, but among all the advocacy campaigns and fundraisers there is still research and other news to catch up on too. Below you’ll find a summary of this week’s M.E. News Headlines and this week I’ve also added links to all the current advocacy events I could find, so you can easily decide which ones you’re able to join during the focused M.E. Awareness Week.

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.

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.

20 M.E. Experts Agree On These Treatments for M.E.

The ME/CFS Clinician Coalition has released a PDF with their recommended treatments for M.E.

The coalition is made up of 20 doctors, each with years of experience treating people with M.E. and in this document they share the treatments that they all agree on. The document includes medicinal and non-medicinal treatments, as well as recommended dosage and notes on use.

To see their treatment recommendations and download the file, click here (PDF).

POTS, The Vagus Nerve And A TENs Machine

Dr. Myhill shares tips on how to improve Postural Orthostatic Tachycardia in M.E. (the reason many of us can’t stay upright for long).

One of the most interesting methods that seems to be causing a stir in her support group is stimulating the Vagus nerve with a TENs machine. She shares the success of one of her support group members who was very severely ill and is now able to walk around and continues to improve. >> Read More

DecodeME Q&A Video And Transcript

DecodeME has shared the video and transcript of their April webinar where they discussed their DNA study and how it will be for those participating. Below are the timestamps for the various topics covered, you can find the video below.

0:00 – Intro + apologies for technical issues.2:00 – Prof Chris Ponting ‘5 steps for a successful co-production’ presentation.9:37 – Dr Sadie Whittaker ‘You + ME registry’ app overview.15:30 – How the You + ME registry will be used for DecodeME.17:56 – How people with lived experience of ME are involved in the study.27:15 – The value of PPI to Chris as a scientist.30:45 – Start of q’s to to the Management Group + signposting to website FAQs.31:52 – Will everyone who signs up be able to take part?32:50 – Are SolveME working with others to broaden the use of info from study sign-ups?36:05 – Closing statement.

The transcript of the video below and slides used are available for download >> Click Here

People With M.E. Have Higher Levels Of Cytokines Post-Exercise

This week the Open Medicine Foundation shared a research update from the Brigham and Women’s Hospital. They have been collecting samples from people with M.E. using ICPET (Invasive Cardiopulmonary Exercise Testing) which analyses respiratory, cardiovascular and metabolic function during exercise.

They are analysing plasma samples taken before exercise, during peak exercise and an hour after exercise to check for any abnormalities in blood pumped to the heart and from the heart. It is likely that through analysing the proteins, cytokines and metabolism, they will find the cause of the severe fatigue and exercise intolerance of people with M.E.

They will also be analysing muscle biopsies of patients and healthy controls. But so far the plasma analysis has revealed that people with M.E. have higher levels of cytokines than the healthy controls. These are the molecules which aid cell-to-cell communication during immune and inflammatory responses in the body. >> Read More

Investigating Physiological Changes During Daily Activity

The ME Association in the UK is looking into the viability of measuring various data from people with M.E. during their daily activities.

The heart rate, blood pressure, oxygen consumption (VO₂), activity levels and lactic acid levels of people with moderate and severe M.E. will be monitored during their normal daily activities. They will be monitored for 7 days using heart rate monitors, VO2 monitors as well as various scales and questionnaires to evaluate severity of PEM and symptoms.

They aim to assess whether patients can handle the constant monitoring, wearing the devices and whether this could be an effective way of collecting data. >> Read More

M.E. Events This Month

The following is a list of M.E. awareness events happening this month, most are focused on the week ahead, surrounding May 12, which is M.E. Awareness Day. Due to COVID, this year’s awareness events are all virtual (online), so most of us will be able to join in, even from our beds or sofas. I hope this list helps you to find a campaign or two that you will be able to participate in.

ME Action Network: Millions Missing Campaign

MEAction have a few things planned for awareness week: organised global and local virtual events, an artist salon and a meet and greet event. >> Read More

Volunteer led campaign: the request form for the Personalised #MillionsMissing Posters campaign has been reopened. There are over 380 powerful posters already in the online gallery. You’re invited to download and share them on social media to raise awareness. Request your own poster here. >> Read More

ME Association: Pause To #RememberME

The ME Association in the UK is having a moment of pause and reflection to remember those lost to M.E. at noon on May 12. They suggest we use the rest of the afternoon to think about and share how M.E. affects us and the wider community, what keeps us going and what would give the M.E. community hope. >> Read More

Open Medicine Foundation: May Momentum

The Open Medicine Foundation is currently running their May Momentum fundraising event. You can find various ways to support their incredibly important and exciting research projects on their website as well as tools to help you create a fundraiser. >> Read More

Emerge Australia: Poster Generator and #SayME Challenge

Emerge Australia is hosting live virtual events on Facebook and Twitter this month, they have a “missing poster” generator and have relaunched the #SayME challenge to highlight in a fun way that M.E. “is hard to say, but harder to live with”. >> Read More

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Action For M.E: Years In Lockdown Campaign

Action For M.E. are running a virtual campaign where people with M.E. share photos of themselves holding a poster which shows how many years they have been “in lockdown” due to M.E. >> Read More

In June they will be launching their “Walk With ME” fundraising campaign too. >> Read More

Blue Sunday: Tea Party For M.E.

Anna’s Tea Party For M.E. is bigger than ever this year and supporting various M.E. charities. Have a bit of tea and cake (alone, with friends and family, joining a virtual event online) and donate to the fundraiser the price you’d pay for tea and cake at a café. >> Read More