Search results

9.40 am - 10.45 am Clinical Cases Presentation A severe illness for the long-haul: patient experience, novel treatments, and current state Melissa Siller, Susan Levine Private Practice Can discordant identical twins become concordant for ME/CFS? Lucinda Bateman, Bateman Horne Center, USA...

We have four threads, one for each day of the conference. Please add the following to these threads: * reports from forum members attending the conference * tweets and reports from other social media * your thoughts about the information presented. * any questions you would like asked of...

METABOLISM 2.30 pm - 3.30 pm Feasibility of investigating oxygen consumption (VO2), heart rate variability, blood pressure and lactic acid levels of people with myalgic encephalomyelitis during normal daily activities. Nicola Clague-Baker, University of Liverpool, England Pre-Illness...

1.30 pm - 2.30 pm IMMUNOLOGY Inhibition of autophagy induces chronic fatigue in mice: a potential mouse model to study ME/CFS Avik Roy, Simmaron Research Inc., Investigating T cell populations for immune cell exhaustion in ME/CFS using flow cytometry Jessica Maya, Cornell University, USA...

10.30 am - 12.30 pm Provocative Maneuvers: Methods to Induce Symptomatic Features of ME/CFS Rochelle Joslyn (moderator), IACFS/ME Mark VanNess, University of the Pacific, USA Peter Rowe, Johns Hopkins University School of Medicine, USA Dane B. Cook, University of Wisconsin - Madison, USA Alain...

We have four threads, one for each day of the conference. Please add the following to these threads: * reports from forum members attending the conference * tweets and reports from other social media * your thoughts about the information presented. * any questions you would like asked of...

3.00 pm - 5.00 pm ME/CFS and Long COVID Federal Advocacy Update Emily Taylor, Solve ME/CFS Initiative, USA BG Wright, Shea McCarthy, Thorn Run Partners, USA Occupational and physical therapy: increasing function & quality of life for ME/CFS patients Amy Mooney, Sallie Rediske, Melinda Maxwell

11.30 am - 1.30 pm Patient/ Caregiver Perspectives on Research - Participation and Priorities Rochelle Joslyn, US National Institutes of Health ME/CFS Collaborative Research Centers Community Advisory Committee, USA; Jaime Seltzer; Susan Taylor-Brown Research updates on POTS Lauren Stiles...

We have four threads, one for each day of the conference. Please add the following to these threads: * reports from forum members attending the conference * tweets and reports from other social media * your thoughts about the information presented. * any questions you would like asked of...

A warm welcome to the Science for ME forum! We’re glad you found us. Science for ME is an independent, patient-led, international forum for people with ME/CFS and the carers, clinicians, scientists and advocates who support us. ME/CFS is a debilitating disease or group of diseases, often...

From the committee: The views expressed by members in this thread were summarised and considered as the letter was drafted by Jonathan in consultation with the committee and guideline group. Although the letter was submitted by Jonathan as the Roundtable participant, the committee endorse its...

3/3 1.17 Care for people with severe or very severe ME/CFS 24. Recommendations on 'Severe and very severe ME/CFS' have been moved into a single section (1.17) at the end of the guideline, separating them from related recommendations they should be read in tandem with and creating the...

2/3 Medicines 15. Page 32, 1.12.15 There are no medicines or supplements that have been shown to be an effective treatment for ME/CFS. Therefore the removal of the word 'treat', present in the draft recommendation, 'do not offer any medicines or supplements to treat or cure ME/CFS' does not...

Science for ME's Feedback on substantive errors in the August 2021 version of the Guideline Submitted to NICE on 11 August 2021 1/3 We have studied the final guideline carefully and provide here a list of corrections and point out some substantive errors. We wish to make it clear that...

S4ME Press statement: New NICE guideline creates hope for change at last The National Institute for Health and Care Excellence (NICE) has today, Friday 29 October 2021, published the guideline for Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management...

This post will be used to link other threads with relevant information and discussions. NHS website pages on ME/CFS updated 29th October 2021 (NICE publication date) NICE ME/CFS guideline - Stakeholder submissions to the draft and NICE responses - published 29th October 2021 - discussion...

Stakeholder submissions and NICE responses This thread is for discussion of the published tables of stakeholders submissions to the NICE ME/CFS guideline draft, which also include responses from NICE. The submissions were made by stakeholders in December 2020. These tables with both the...

This public thread is for general discussion of the much anticipated NICE 2021 ME/CFS Guideline including media and social media responses and other organisations' press releases. The NICE ME/CFS Guideline Project documents page gives links to: the Final Guideline the Evidence Review the...

From S4ME Management Committee On Monday 30th August (a UK bank holiday), the S4ME committee sent by email the letter posted in the opening post of this thread. On Thursday 2nd September S4ME received a brief email from NICE inviting us to send a representative to the roundtable meeting. The...

The following letter was sent by email by the S4ME management committee to NICE to express our concerns and ask for clarifications about the 'pause' they announced to publication of the final version of the ME/CFS guideline. * a few words have been removed from this copy which refer to sections...