After a long break, I’m back with this week’s ME News highlights and blog updates from the ME community. So make yourself comfortable and let’s have a catch up with our fellow warriors and allies!
Remember, if you find any of these posts helpful or interesting, please share them on your social media, it will help to raise awareness and eliminate stigma.
This Week’s M.E. News
Please forgive me if my summaries aren’t too detailed this week, I’m still struggling a bit after a recent virus, so some articles are hard to digest at the moment.
New All-Party Parliamentary Group (APPG) on ME
Carol Monaghan MP is reviving the APPG this year. After a few successful parliamentary debates last year Carol, in collaboration with ME Action, is hoping to maintain momentum and strengthen the push for government to fund ME research and eliminate harmful treatments and procedures still in use.
The first APPG meeting was held this week, but there will be others. They are asking the ME community, patients and allies, to reach out to your MPs and invite them to participate. There is an email template available as well as a tool to help you find your MP and email addresses to get in touch with Carol or ME Action if you have any further questions. >> Read More
The ME Association Funds Six Student Bursaries
The ME Association (UK) is keen for undergraduate and postgraduate science and medical students to develop an interest in ME/CFS, so they have pledged funding for 6 bursaries. They are creating a number of annual awards funding spots at the UK CFS/ME Research Collaborative (CMRC) conference which is Continuing Professional Development (CPD) certified. Attendees will have the opportunity to learn about the pathology of ME, the key areas of research and communicate with other health professionals and researchers. >> Read More
Dr Craig interviews Dr Myhill on Spoonie Radio
Dr Courtney Craig, who was diagnosed with ME/CFS at age 16, but is now recovered, hosts the Spoonie Radio podcast where she interviews various guests about the condition. This week you can listen to her interview with Dr Sarah Myhill (transcript also available) about how she treats patients with Myalgic Encephalomyelitis or Chronic Fatigue Syndrome. >> Read More
UK Researchers Submitting Application For Research Funding Require Patient Sign Up
Researchers are about to submit an application to 2 of the biggest research funders in the UK. Their aim is to conduct a 20 000 person genetic study into ME (using ICC criteria), so they are asking patients to sign up to show they back this research project in order to help the application succeed.
The study will be based on a saliva sample which will be mailed in, so even bedridden patients can participate in this research. Signing up doesn’t commit you to anything, it is only used as a guage of interest. There are only a couple of questions, it will take 3 minutes. Anybody with or without ME may sign up to show support for this study, so please share widely. >> Read More
Cort Is Analysing Temporary Remission In ME and Fibromyalgia – Take the poll!
Cort has been collecting data from people with ME and FM who have experienced short periods of remission/recovery where they have improved dramatically for a few weeks or more. This data is being used to compare treatments and triggers.
With just 9 multiple choice questions, this poll shouldn’t take too long to complete. Also featured are 3 such temporary recovery stories. >> Read More
Other Items Of Interest
- David Tuller: once again highlighting the 2018 PACE reanalysis and the SMC’s expert appraisals >> Read More
- Denmark: health authority refuses to accept WHO definition of ME despite unanimous vote in favour by Danish MPs last year. >> Read More
- Dr Myhill: since she cannot accept new patients at this time, she lists other practitioners trained to treat ME/CFS in a similar way. >> Read More
- OMF: Dr Ronald Tompkins has accepted the position of Chief Medical Officer of Open Medicine Foundation. >> Read More
- Solve ME/CFS Initiative: celebrating 6 congressional victories from 2019, including funding and access to additional bids, policy changes and pediatric studies. >> Read More
ME/CFS In The Media
- LancsLive: Former weight-lifter Gemma Allen’s experience of ME has been featured on her local Lancashire news site this week. She had a busy and active life as a quality assurance consultant, weight-lifter and mother of 2, but shortly after the birth of her second child, her life completely changed. >> Read More
- The Times: Accountant Jade’s wedding was featured in The Times this week. She’s been diagnosed with CFS since 2015 and describes feeling groggy and weak and being unable to lift her limbs or her head at times. Like having the flu, but without the runny nose. >> Read More
- ABC News: Former police officer, Tony Wallace shares his experience of Severe ME in a feature titled “The Hollow Man”. From a demanding and varied carreer, patrolling Perth CBD as well as being a persuit driver and police prosecutor to being barely able to get out of bed. >> Read More
- ChronicleLive: Former ballerina, Kate, who fell ill at age 14 shares her story 10 years later. Grieving the fact that she is unable to be the dancer she always dreamed she would be, she has gone on to teach dance from her wheelchair. >> Read More
Updates From M.E. Bloggers
The following M.E. warriors have updated their blogs this week. I’m sure they’d love to have visitors and comments. If you find their content helpful or interesting, please share the posts on social media too – the more people read our stories, the less stigma and misunderstanding there will be around M.E.
Greg discusses listening skills around chronic illness
Greg is highlighting the value of being listened to, being really heard, when you have chronic illness. He’s covers the harmful effects of poor listening skills within the medical and professional sectors as well as among family, friends and between partners and explains why good listening skills are so important. >> Read More
Julie shares easy ways to make the world a better place
Julie has been sharing easy ways we can all contribute to making the world a better place despite our current circumstances. This week she focuses on how we can support each other by sharing the good that others are doing. >> Read More
Corina is the featured artist in the Dungarvan Observer
Donal Buckley interviewed Corina Duyn, a fellow ME warrior and artist, in his weekly column “Portrait of an Artist”. Corina is not only an artist, she’s also a designer, writer and lecturer and she is passionate about puppetry – the art of making puppets! You can read the entire interview all about her fascinating life and craft over on her blog this week. >> Read More
Ali explores the different ways people respond to fatigue
This week Ali shares a quote about fatigue that has spoken to her, something she wishes she had read earlier when she still struggled with ME. It explores 3 different ways that people respond to fatigue – some pushing through, some being immobilised by it and others being kind to themselves and finding ways to manage life around it. >> Read More
Anna reveals date for the 2020 Tea Party For ME
If you’ve been part of the annual ME awareness campaigns you will likely be familiar with Anna’s Blue Sunday tea parties. These are annual fundraising events which she hosts in her local area.
Over the years more and more ME warriors have started hosting their own Blue Sunday tea parties, participating from home and posting photos online to help raise awareness to help the fundraising effort. Find out when and where this year’s tea party will be and how you can join in. >> Read More
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Thank you for this incredibly informative post! Love being able to see what’s going on out there in one spot. It feels encouraging to see so much plowing ahead in the communities aiming to bring us answers (fingers remain crossed). And thank you for the mention. 💙 Hoping your days are better this week. Take good care 🌸
It is really encouraging, isn’t it? Thanks, lovely. So far so good, things are looking up.
Oh and I forgot to mention one the last sections seems like maybe it’s not coming in correctly – More About Life With M.E.
Thanks for letting me know, it’s working for me on laptop and phone at the moment. I think my new hosting might be giving trouble. Sometimes my images vanish too… Never happened before, so I assume it’s the new hosting service, switched at the end of last year. Will have to contact them. Thanks again.
I’m going to send you a screen shot on IG because that’s the only place I know where I can show you an image. I frequently have WP issues so it could totally be me😁