NICE announced today that it will hold a roundtable in September as the next step in the publication of the ME/CFS guideline. The roundtable will include representatives from patient organisations and charities, relevant professional societies, NHS England and NHS Improvement, NICE and the guideline committee. It aims to, “better understand the issues raised and determine
We call on the National Institute for Health and Care Excellence (NICE) to publish the finalised ME/CFS guideline in its current form. Sign the petition On 18th August 2021, NICE were due to publish their newly developed ME/CFS guideline. It would have transformed the care people with ME receive in the UK and abroad. But
#MEAction has sent a letter to the Congressional House Subcommittee on Health (Energy & Commerce Committee), following their recent congressional hearing on Long COVID. Our letter urges Congress to hold the National Institutes of Health (NIH) accountable for expediting treatments to people with ME/CFS and Long COVID. To make this happen, we urge Congress to
#MEAction has written an open letter to NIH institute director, Dr. Walter Koroshetz, and CDC division director Dr. Inger Damon to express our lack of confidence in their interagency approach to ME/CFS. Drs. Koroshetz and Damon co-lead the Interagency ME/CFS Working Group, which met last month, and oversee the ME/CFS program activities within their respective
We want to make you aware of new funding allocated through the Covid-19 relief package that has potential to make a real impact for ME, and why our federal agency work is at the forefront of all that we do. It was announced before the new year that $1.25 billion will be allocated to the
On December 3-4, 2020, the National Institutes of Health (NIH) / National Institute of Allergy and Infectious Diseases (NIAID) hosted a virtual Workshop on Post-Acute Sequelae of COVID-19. We know acute COVID-19 has an extraordinary number of multisystem manifestations: pulmonary, cardiovascular, neurologic, psychiatric, musculoskeletal, endocrine, renal, hepatic, gastrointestinal, and dermatologic. The workshop’s goal was to
#MEAction is proud to join Solve ME/CFS Initiative (Solve M.E) and 18 other chronic disease stakeholders to sign a strong letter to Congress asking them to urgently prioritize long COVID and post-viral disease funding in future Congressional COVID-19 relief packages or appropriations agreements. The goal of the letter is have Congress fund millions of dollars
Last week the U.S. National Institutes of Health (NIH) announced it will hold its next ME/CFS Telebriefing on Thursday, Nov. 5 at 11am Eastern Time. #MEAction staff and volunteers worked quickly to draft a letter with detailed questions for NIH in advance of this meeting. You can read the full letter here. We will keep
NIH Director Francis Collins just published a blog post highlighting the plight of COVID-19 “long haulers” and the role of citizen-science efforts at the Body Politic COVID-19 Support Group in compiling the first detailed patient survey of long COVID and analyzing the results.
The NIH is shaping research initiatives to study the long-term consequences of COVID-19 (long COVID), but it lacks the coordinated, outcomes-focused strategy necessary to deliver biomarkers and treatments to the people who need them.