For those of you who don’t use Facebook. Below is a list of the external links shared within our Facebook Group during September:

 

“What is it like living with fibromyalgia? Difficult, unpredictable and painful.”

https://www.versusarthritis.org/news/2021/september/what-is-it-like-living-with-fibromyalgia-difficult-unpredictable-and-painful/?utm_campaign=n-21&utm_medium=vearne&utm_source=orsofa&fbclid=IwAR3EsA7N5xf_KK7am7dQ06JPr9vaEhMGR6vymTwE5b_ad3POaRONCi3FFBc

 

Experts launch world’s largest genetic study of ME

https://www.bbc.co.uk/news/uk-scotland-edinburgh-east-fife-62876472?fbclid=IwAR3G_PxBESucBkEO04djWCzZvJc0ihGNSErr3attf1uNsz68mcdeqYHfm24

 

Twitter – Maya Henning – #LongCovid and #MECFS are not psychosomatic diseases.

This thread 🧵 lists studies in which neurologic, immunologic, cardiovascular and other physical abnormalities were found in #LongCovid and #MECFS patients.

The thread will be gradually expanded by further studies.

https://twitter.com/maya_h_aus_k/status/1569677017091563520?fbclid=IwAR3btZqZJQFc69WO0D0xHfTrQFy4u7M7sv-7ekH1SyypqT3xtEAKbNcNp7E

 

Twitter – Teunkea Arvo – 1/ 🧵 A hallmark of the illness ME, also known as ME/CFS is a bad response to and tolerance of effort and exercise.

 

I have collected a bunch of papers, threads and articles about this. Unfortunately I do not have the time or energy to write a coherent thread abt it. #MECFS

https://twitter.com/teunkea/status/1570754853005332482?fbclid=IwAR3G_PxBESucBkEO04djWCzZvJc0ihGNSErr3attf1uNsz68mcdeqYHfm24

 

Course of illness survey 2022

https://www.me-foreningen.no/course-of-illness-survey-2022/?fbclid=IwAR2bBRxHP5hTFXq6xwWypkIUnApcq9at2Oeg6iW4SaG2qhiNuP2ukz-tTeE

 

Flippin’ Pain Formula: Learning resources to transform your understanding of pain

https://www.flippinpain.co.uk/formula/?fbclid=IwAR0FPMirTUNYxeo0jvLR_xMlPyDAZw-swnAbaCk858wWDLsqeiFa_x868VI

 

Care Opinion: Share your experiences of UK health and care services, good or bad.
We pass your stories to the right people to make a difference.

https://www.careopinion.org.uk/?fbclid=IwAR1Rg12Otw_1MyydriBjEOScxg5BH8T_fDpKZsAqCFn6Vi75LXLJ_U-n5dY

 

Survey of Individual Volunteers 2022

https://www.tfaforms.com/5012755?fbclid=IwAR2_66mCRigOPn-zAJlTO30UciHgxrS-OZ4B_lV-T09DvJW31Ahgr9mAHIA

 

Work underway to support the development of a Delivery Plan on ME/CFS

https://meassociation.org.uk/2022/09/work-underway-to-support-the-development-of-a-delivery-plan-on-me-cfs/

 

SNP government under pressure as ME sufferers make £6m plea amid Long Covid ‘alliance’

https://www.scottishdailyexpress.co.uk/lifestyle/health/snp-government-under-pressure-sufferers-28075472?fbclid=IwAR171oBXT7OUzyLreCv92W4UAMdZsRjRBjKWs3i3IDcH2zWMqtGWmnbZfAk

 

Help us create the world’s largest study of the causes of ME/CFS

https://www.decodeme.org.uk/portal/?fbclid=IwAR3SeCojDLGtAkh6MrlaCp6ZV-h-PVcpP-bhTQrfdZCHIewvN9eMiDZYjIs

 

Activity monitoring and patient-reported outcome measures in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome patients

https://pubmed.ncbi.nlm.nih.gov/36121803/

 

Medical Matters: Tinnitus

Dr Charles Shepherd and the ME Association’s other advisers answer questions from members of the MEA.

Q: Is tinnitus more common if you have ME/CFS?

https://meassociation.org.uk/medical-matters/items/symptom-tinnitus-mecfs/?fbclid=IwAR07ypkjwGtorb3QKa3hze7p7U8s-EDI0NUeRjOrXTWUxDRyP_Z-NXxhA64