This Week’s M.E. News – Week 21, 2021

The Richest Database Of Complex Chronic Illnesses

The ME Action Network is asking anybody with ME, CFS or related chronic illnesses (POTS, MCAS, hEDS, etc) to take this survey to help them gather the richest database on complex chronic illnesses ever created. 

The idea is to collect as much data on symptoms, and their overlap between various conditions, so that they can identify subgroups and potentially find underlying mechanisms which could be addressed for each group.

Having a database like this could potentially help to educate healthcare professionals, making diagnosis faster and easier, it could help researchers to focus on specific mechanisms which could be causing symptoms, and potentially help find treatments for the various sub-groups.

How The Survey Works

The survey is pretty long, so it has been broken into shorter segments which will be released on a monthly basis. You will get your own personal link in an email, so that you can save your progress and return to it whenever you are able to, you go at your own pace. 

So each month, for 6 months, you will get an email with a link to the following segment of the survey. Your information remains confidential and the data studied will be kept anonymous. The emails also contain tips on how to pace to help you avoid PEM from taking the survey.

The questions are multiple choice, black text on white background with a "save progress" button after about every 3 or 4 questions, which makes it easy to take breaks without losing your progress. The survey will remain open for a year to make sure everybody has time to complete it. >> Read More

Warning Against The Use Of Abilify For ME/CFS 

The ME Association (UK) has issued a statement of warning against the use of Abilify (Aripiprazole) as a treatment for ME/CFS. Dr Charles Shepherd of the ME Association is concerned that patients are approaching doctors to request prescriptions for this drug when there is not yet enough research to back its use.

In contrast to the positive outcomes we might hear about online, there have also been reports of serious negative side-effects. Therefore, the perceived potential benefit does not sufficiently outweigh the possible side-effects of using such powerful antipsychotic drugs. >> Read More

New "What's Up Doc?" Interview Series

Cort Johnson has launched a new video interview series where he sits down with different doctors who work within the ME/CFS/FM and related illnesses field and discusses what has caught their attention lately and what they're exploring. It's less about established treatment protocols and more about exploring new avenues in research or treatment options. First up is Dr. Eleanor Stein. >> Read More

Expert Consensus On Diagnosis, Treatment And Care For People With ME/CFS

The European Network on ME/CFS (EUROMENE) has published a paper in which researchers and healthcare professionals from various European countries provide evidence and recommendations for diagnosis, service provision and care for people with ME/CFS.

Their main goal was to assess the existing understanding and care services for people with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in Europe. They aim to improve research and health care provision by sharing their findings and collaborating to create appropriate recommendations. 

"We report our findings and make recommendations for clinical diagnosis, health services and care for people with ME/CFS in Europe, as prepared by the group of clinicians and researchers from 22 countries and 55 European health professionals and researchers, who have been informed by people with ME/CFS". >> Read / Download The Paper Here

Summertime Strawberry Tea For The ME Trust

The Effects Of The Second COVID Jab

Julie has now had her second Pfizer vaccine and this week she's sharing her experience as well as what she's doing to try minimise the negative side-effects.  >> Read More

Delicious Pancake Recipe

A fellow warrior shares their favourite pancake recipe this week. The recipe uses just a few common ingredients you probably have at home and doesn't require much time. It looks like an easy to manage, delicious treat. >> Read More

The Emotions That Come From Being Unable To Walk Freely

This week Anna openly shares her mixed feelings about not being able to walk or even use mobility aids to get further than the mailbox. >> Read More

Celebrating May's Achievements

Char is celebrating the fact that she managed to complete a Tiny Task in the house each week this month. Tiny Task Tuesday is a weekly challenge to tackle just one small thing in the house, while pacing to avoid PEM, and create sanctuary at home. Whether it's a chore or decorating or something else that brings some beauty, peace and joy to our homes. >> Read More

The Importance Of Setting Boundaries And Limiting Stress

Veronique shares a downloadable fact sheet she created to help those with chronic illness explain to those around them the importance of setting boundaries and limiting stress in order to protect themselves from further deterioration. This can be especially helpful since these types of boundaries often don't make sense to healthy people. >> Read More

Champion ME Bloggers Announced

The ME Association has published a list of "Champion Bloggers" who regularly write honest and emotive blog posts about life with ME and much more. This varied group of bloggers write in a personal capacity as well as writing about topics or events that interest the ME Association. >> Check Them Out!

In case you weren't aware, Chronically Hopeful has a growing Directory of ME websites, including Blogs, Charities, Advocacy Groups and other related organisations, listed by country. Be sure to check them out, it's a great way to connect with other people with ME, share ideas and experiences and support each other.

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