News from #MEAction UK Website: https://www.meaction.net/countries/uk/ Twitter: https://twitter.com/MEActNetUK
"Join us in chatting to Caroline Kingdon and Adam Lowe - two of NICE’s ME/CFS guideline committee members at 5pm on Tuesday 30th November 2021. There are only 100 places to attend so follow the link below to RSVP now." http://ow.ly/rOCv50GQ7oI Code: https://twitter.com/MEActNetUK/status/1461258116520198152 https://www.meaction.net/2021/11/17/chat-to-nice-me-cfs-guideline-committee-members-2/
"interestingly nice often publishes something in the bmj but in this case nothing has been published yet" does anyone know if NICE have anything in the pipeline on this?
"by saying post-exertional malaise is a key symptom for me cfs i think is critical" yes, but it still isn't mentioned on the NHS websites. Also, PEM is now being picked up by others not just the ME community and they are putting their own spin on it. It is crucial that it is put out there asap as the defining symptom of ME, but that this is expanded on with the full NICE guideline description of what it is. " Post-exertional malaise The worsening of symptoms that can follow minimal cognitive, physical, emotional or social activity, or activity that could previously be tolerated. Symptoms can typically worsen 12 to 48 hours after activity and last for days or even weeks, sometimes leading to a relapse. Post-exertional malaise may also be referred to as post-exertional symptom exacerbation. Activity Any effort that uses energy, which includes cognitive, emotional and social activity as well as physical activity. Different activities combine and interact to cause a cumulative impact for the person."
#MILLIONSMISSING LONDON SEPTEMBER 2022 SEPTEMBER 13 @ 1:00 PM – 3:00 PM BST #MEAction UK is excited to be able to meet again in-person this September for #MillionsMissing London 2022! Join us at Parliament Square, London SW1A 2AA on 13th September from 1-3pm to demand the millions of pounds missing from ME research in the UK! Mark your calendars now! ... Speakers: Prof Douglas Kell – microclot research in ME. Hayley Valentine-Howard – pregnancy and ME CureME – Eliana Lacerda ... More details at link: https://www.meaction.net/event/millionsmissing-london-september-2022/
From ME Action: #MillionsMissing London is Postponed Due to the death of her majesty Queen Elizabeth II and the period of national mourning that we are entering we have postponed #MillionsMissing London that was due to take place on September 13th in Parliament Square. https://www.meaction.net/2022/09/09...ostponed/?mc_cid=fa704a8adc&mc_eid=83ddbd3a71
https://www.meaction.net/2022/09/09/elementor-58714/?mc_cid=865fd5cab4&mc_eid=83ddbd3a71 The #MillionsMissing Scotland demonstration, due to take place on Wednesday 14th, has had to be postponed. Following the death of Her Majesty the Queen, the Scottish Parliament is suspended, which means we won’t be able to achieve the aims of the event. We appreciate that it’s disappointing and apologise for any inconvenience caused, particularly to those of you who have been planning your journeys and managing your energy to make it. We’re looking at new dates in the last week of September and we’ll update you as soon as we can. Thank you for your understanding.
Millions Missing London is on next week. From an email: #MillionsMissing London is getting nearer and we are excited to be able to meet up again in person. Just one week to go now, Tuesday, 18th Oct, Parliament Square 1-3pm and we would love you to be involved either in person or virtually! We have some fantastic speakers planned. Prof Douglas Kell from Liverpool University will talk about his micro clot research. Hayley Valentine-Howard will talk about how ME affects pregnancy and its implications on delivery and the postnatal period and Claire Tripp will discuss the Decode ME Study. Sarah Boothby, Maeve Boothby O’Neill’s mum, a registered social worker advocating (pro bono) for families where death from ME is a possibility will be talking about her experiences. We are delighted to get so much support from MPs. Emma Lewell-Buck MP, Hywel Williams MP and Alex Chalk MP, Lord Bethell, Baroness Scott and Fleur Anderson MP have all accepted our invitation. Lord Bethell has kindly agreed to speak. https://www.meaction.net/event/mill...new-date/?mc_cid=ce8dc3d882&mc_eid=83ddbd3a71 Also suggestions for virtual actions: https://www.meaction.net/?s=Millions+Missing+London
This article https://www.thecanary.co/uk/2022/10...ocial&utm_source=Twitter#Echobox=1666186257-2 on the recent MillionsMissing protest in London states that patients are now lobbying the Wellcome Trust for funding. This is new(s) to me. It seems like it might be an MEAction initiative, but I'm wondering if there is any more on this?
Join the UK and Scotland’s digital campaign this #MillionsMissing https://www.meaction.net/2023/04/14/join-the-uk-and-scotlands-digital-campaign-this-millionsmissing/ Two photo categories: 1) Your view with ME (photo from bed/couch/chair showing reality of being confined to home) 2) The spaces people with ME are missing from (photo showing all the places and activities that people with ME can't experience in person)
#MEAction UK And Scotland Update Prevalence Figures Based On New Data "Both the UK and Scotland branches of #MEAction will start using updated figures for the prevalence of ME, based on a recent US survey." "The Center for Disease Control (CDC) has published results of a survey which provides data following the onset of the COVID-19 pandemic and is the most recent credible data we are aware of. Importantly, it will include any increase in the prevalence of ME due to the pandemic, as well as many with Long Covid, due to the overlaps between the two conditions." "The US survey results show that 1.3% of adults in the US have ME/CFS. This is significantly higher than the 0.4% estimate derived from UK Biobank data before the COVID-19 pandemic and used in the NICE guideline on ME/CFS. Applying these new estimates to UK populations gives estimates of 700,000 people with ME in the UK and 58,000 in Scotland. Prior to this we were using figures of 250,000 and 22,000 respectively." https://www.meaction.net/2024/02/01...-update-prevalence-figures-based-on-new-data/ Our discussion thread for the CDC survey is here, CDC Data Brief: Myalgic Encephalomyelitis/Chronic Fatigue Syndrome in Adults: United States, 2021–2022, 2023, Vahratian, Unger et al
Open letter by MEAction UK asking for use of stricter criteria in research. (Basically asking to stop using Fukuda). https://docs.google.com/forms/d/e/1FAIpQLSecBUYptb8h1PZJz3IMgjg0CfzI_9bYIMAtVUsT42KBjqJG9Q/viewform
A number of posts have been moved to a new thread 2024: Call for a Research Case Definition Consensus Statement for ME/CFS
