We can’t believe it! Another $50k matching gift!

I am so thrilled to tell you that we have another $50,000 (£39,873.50) matching gift for #MEAction’s #MillionsMissing fundraiser. That means that everything you give will be matched dollar for dollar until we reach our goal of $200,000 (£159,490)!

Donate Now

Here are three ways you can help us maximize this matching gift:

1. Donate 

2. Start a fundraiser on Facebook or through our website

3. Share this email with friends and family

Your support of #MEAction will allow us to continue the vital work of advocacy and activism. 

Our goals are to increase research funding and improve how ME research is conducted, improve patient care, and advocate for treatments by holding officials accountable and by changing the narrative so that people with ME are believed and supported in all areas of their lives.

In six short years, our grassroots activism, collaborations, and coalitions have accomplished:

• Improving Patient Care

  • Our activism led to the removal of Cognitive Behavioral Therapy and Graded Exercise Therapy from the Centers for Disease Control website.

  • We launched a petition with over 12,000 signatures against the PACE trial which caused much harm to our community. This action and years of work by #MEAction, #MEAction UK and other amazing advocates led to the removal of Cognitive Behavioral Therapy and Graded Exercise Therapy from the NICE guideline.

  • We are fighting for a NCHS ICD-10-CM coding change, which we hope will be implemented soon. If we succeed, this will have a huge impact on diagnosis and treatment. 

  • We are continuing to collaborate with Mayo Clinic so that people with ME are at the center of care.  

• Improving Research

  • #MEAction ensured ME/CFS experts were a part of the RECOVER initiative, without it there would be little to no connection to ME.

  • We fought for the renewal of the Collaborative Research Centers. 

  • #MEAction launched a patient-led research project to collect data that connects ME with other comorbid conditions. Patient-led research puts us in the driver’s seat of improving research.  

• Increasing Research Funding

  • Through a coalition of organizations, we fought to increase the CDMRP appropriations which increased research funding for ME.  

• Improving & Advocating for Treatment

  • We put people with ME first. We developed pacing guides, toolkits, groups, and information to educate individuals and clinicians

  • At the beginning of the pandemic, when we knew the number of people with ME was going to escalate, we created the #StopRestPace campaign for newly diagnosed individuals. We are seeing this make a real difference in preventing harm to the newly ill as well as serving as a critical reminder for many long-term patients. 

• Holding Officials Accountable

  • #MEAction had recent productive and open meetings with HHS and Department of Labor in order for people with ME to be more supported in all areas of life. 

  • After strategic protests in over 100 cities worldwide, we secured meetings with the highest leaders of the NIH to demand change. 

  • We’ve met with policymakers in the UK and held a historic parliamentary debate.

  • We continue to hold institutions accountable and launch urgent actions whenever they fail us.  

• Changing the Narrative

  • It was #MEAction that successfully bird-dogged Dr. Fauci at the beginning of the pandemic, to get him to link COVID-19 and ME/CFS (something only grassroots activism can accomplish)! 

  • We have been featured in major press outlets including The New York Times, CNN, The Guardian, Vox, TIME, The Atlantic and more- changing the narrative on a very large scale. 

  • #MEAction hosted virtual #MillionsMissing storytelling events (including training) to connect Long COVID and ME, and to change the narrative on complex, chronic illness.  

• Fighting for Patients and Putting People with ME at the Center

  • #MEAction petitions harmful institutions that mistreat severe patients. We’ve been successful in releasing patients held against their will and demanded patient autonomy. 

  • Hosted events, brought thousands of people with ME around the world together for community, support, and strategy. Because this is how we change the landscape. Support, love, connection all matter.

Throughout these six years, we have made great strides toward our goals—and we’re not slowing down. Every single day, we continue to fight to make equity for people with ME a reality and for your life to improve through care, treatment and one day, a cure. 

People with ME are at the center of all we do. 

Please share this news today and help us to keep up this fight.

Support #MEAction

Thanks kindly,

Laurie Jones

Interim Executive Director

#MEAction