severe

https://www.mdpi.com/2227-9032/8/2/169 Looks like this study is related to this one discussed here: https://www.s4me.info/threads/cerebral-blood-flow-is-reduced-in-me-cfs-during-head-up-tilt-testing-even-in-the-absence-of-hypotension-or-tachycardia-van-campen-et-al-2020.13583/

Moderator note posts below have been moved from: https://www.s4me.info/threads/news-from-scandinavia.647/ "Help Holger now!" 13 minutes long video in Swedish about Holger who is very severely ill with ME. Made by his younger brother. (I haven't been able to watch the whole video yet, but...

http://www.meresearch.org.uk/our-research/living-with-severe-me/

Ketra has been forced to live in an aged care facility due to her severe chronic fatigue syndrome. Unable to find suitable accommodation elsewhere, Ketra has had no choice but to stay, and now she's trapped inside as the coronavirus pandemic continues. full article...

Full Title: Assessing diagnostic value of microRNAs from peripheral blood mononuclear cells and extracellular vesicles in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome https://www.nature.com/articles/s41598-020-58506-5

full article here https://www.lancs.live/news/lancashire-news/former-weightlifter-pendle-tells-how-17538569

Survey, https://apps.mhs.manchester.ac.uk/surveys/TakeSurvey.aspx?PageNumber=1&SurveyID=m4KKln9MH&Preview=true Participant Information Sheet, https://www.research.manchester.ac.uk/portal/files/145778415/Our_PIS_GDPR_UoM_oct_1_verion.pdf

Moderator note: We've merged a number of threads to collect Naomi's blog posts into one thread. An article originally printed December 2016 but now updated with an audio version as well...

I have been thinking a lot about the evidence base for ME/CFS management. There are some good negative studies but a positive evidence base is hard to find, as we know. At the NICE scoping meetings there was a consensus that what could be justified in the current situation was more ongoing...

I thought I would also post this here. A freelance journalist contacted my mum, Clare Norton, about her experiences with the NHS and How they treated both her and Merryn Crofts (her daughter and my sister). It details how we was investigated for Munchausen by proxy etc. Many thanks and hope...

I just came across this this morning and it fills me with what I can only describe as the collywobbles. Firstly how many children with severe ME will go to the GP or hospital? Almost never. What condition will the Dr/Paediatric know what to look out for? I now need a bucket of coffee and to...

CFS/ME National Services Survey Feb 2018 Snap shot audit BACME National Services Workstream Report Published March 2019 https://www.bacme.info/sites/bacme.info/files/BACME CFS ME National services survey March19.pdf

An alarming-sounding study ("Fearful beliefs about activity could be targeted using cognitive-behavioural interventions.")! Source: Journal of Behavioral Medicine Preprint Date: January 25, 2019 URL: https://link.springer.com/article/10.1007/s10865-019-00010-x Psychological and demographic...

I think it would be useful for all of us, and perhaps for the NICE committee members, to gather together resources about severe and very severe ME. This could include research and patients stories that illustrate good and bad practice in care for the very severely affected.

https://bmjopen.bmj.com/content/8/9/e020775

Hi, I apologise if this is the wrong area to post this but this is our last formal statement as a family. I’m unsure how to get it to come up on here so I have included a link to the Facebook post we have written. I’m a bit useless with technology so I do apologise! Many thanks and sending...

Paywalled at http://journals.sagepub.com/doi/abs/10.1177/1359104518794764?journalCode=ccpa

" Atlanta (CNN)Every morning, I shave, brush my teeth, and swallow a dozen pills. I look in the mirror and thank God I can even walk out the door. Since 2007, I've lived with an incurable disease known as chronic fatigue syndrome. Internationally, doctors call it myalgic encephalomyelitis, or...

HI everyone there is a feature on bbc radio five live about severe me today.with Charles shepherd ,a severe me person and also be a phone in . from 3pm. I''m severe / very severe and struggling today - so its on the me association website if any body could put up a link etc and if anyone...

Jessica Taylor-Bearman's kickstarter-funded book is out on 3rd July,