severe me

After a long saga for the past 8 months involving chronic infections and adverse reactions to multiple treatments, I am due to have surgery soon, a ureteroscopy, to remove a kidney stone. I would prefer not to have surgery of course but there is apparently no other options given the placement of...

In November, as part of the UK Malnutrition Awareness Week, Helen Baxter of The 25% ME Group gave a presentation at the Malnutrition Taskforce Learning Event on how dietitians and the wider MDT can help people with ME. You can watch the presentation on YouTube, and a transcript is available...

Has anyone who is severe found a cell phone that they can tolerate? Member Samuel needs a phone but he has severe photophobia, sensitivity to flicker, and general neuro intolerance to the devices he has interacted with. Has anyone else here with photosensitivity due to very severe ME found a...

Full title: Investigating antibody reactivity to the intestinal microbiome in severe myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) Preprint Abstract Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a multisystemic disease of unknown aetiology that is characterised...

I saw this post by @MEFoggyDog on Mastodon so I thought I'd share. This same hashtag - #MPDoYourJobForME - is also being used on twitter so you can search for it there. I did not watch the whole video, but the title of the document linked in the post is: Politician's Guide: How To Advocate...

Presentation Name of the event: 19th Biennial European Society for Health and Medical Sociology Conference Sted: Forli, Italy Date from: 25 August 2022 Date until: 27 August 2022 Organizer: Arrangørnavn: European Society for Health and Medical Sociology About the result Scientific lecture Year...

Ensuring the Voice of the Very Severely Affected Myalgic Encephalomyelitis/Chronic Fatigue Syndrome Patient Is Heard in Research—A Research Model 25% ME Group Abstract Most of the research about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has focused on ambulant patients who...

Hi All, I have just had a request from the Department of Health & Social Care policy team for a citation supporting the often cited statistic that 25% of people with ME are severely or very severely affected. Does anyone have a supported source for this? My first round of searches (ME-paedia...

What is ankle bathing? Is this similar to contrast bathing? Comparison of the acute effects of ankle bathing versus moderate-intensity aerobic exercise on vascular function in young adults, 2022, Cho et al Abstract We examined the efficacy of ankle bathing versus aerobic exercise to...

I would like to see a campaign to end malnutrition in patients with severe ME. For this purpose, I am currently gathering information so I can produce a briefing document. I would be grateful if anyone can share any information with me including academic articles, statistics, surveys, media...

Abstract Background: About 10% of individuals who contract infectious mononucleosis (IM) have symptoms 6 months later that meet criteria for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Our study for the first time examined whether it is possible to predict who will develop...

This is a post collating what I learned, when trying to access surgery as someone with the symptoms of Severe / Very Severe ME. I hope it is concise and can help support others who find themselves in my situation or similar situations. (Note: I had a thread on this forum where I shared all my...

ABSTRACT Objective The prevalence of pediatric Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) has been estimated from an ethnically and sociodemographically diverse community-based random sample of 10,119 youth aged 5–17. We assessed whether a salivary biomarker of fatigue could...

UNDEREXPOSED within four walls of severe m.e photography exhibit trailer https://www.youtube.com/watch?v=dT53W0GWQIg

Hello everyone, I'm doing some research which may or may not lead to writing an article. When reading old newspaper articles from The Netherlands, I came across a 2003 piece featuring Judith Prins and Gijs Bleijenberg. Apart from the usual tripe, they make the claim that due to their CBT...

https://www.rochdaleonline.co.uk/news-features/2/news-headlines/140850/gifts-to-make-severe-me-sufferers-smile-posted-in-merryn-crofts-memory-by-smile-for-me-charity

I'm a bit late sharing this, since it was published on March 8, and I keep forgetting to post! But I really enjoyed this essay written by @Michelle : https://www.hippocampusmagazine.com/2021/03/salisbury-steak-day-by-michelle-strausbaugh/

Abstract Myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) is a complex, only partially understood multi-system disease whose onset and severity vary widely. Symptoms include overwhelming fatigue, post-exertional malaise, sleep disruptions, gastrointestinal issues, headaches...

Advocacy work can involve surveys - online/ telephone/ hard copy. Much of the time, those who are most severly affected can find it difficult to engage with this unless a fanily member/ carer can assist them- some may struggle to have this assistance. The PLP will feature a survey and there are...

Severe ME: More Notes for Carers by Greg Crowhurst https://www.stonebird.co.uk/