#MEAction Swimming Through the Research Lagoon

Research Lagoon
Research Lagoon

Hi, everyone! It’s Jaime, the Director of Scientific & Medical Outreach at #MEAction. During this week’s #MEAction Giving Adventure we swam through the Research Lagoon as we surpassed our second fundraising level of US $20,000/UK£14,820. While our fundraising format this year is fun and lighthearted, the work #MEAction is doing to advance research and clinical education is more critical than ever. 

As your Wizard of Medical Education and Research, I have been brewing the Chronic Illness Survey Adventure with great care, and I have wonderful news: we have 2,100 survey responses for section one that meet all inclusion criteria — and thousands more signups! That isn’t magic, of course. It’s been a lot of hard work from you and me. If you haven’t taken section one, I encourage you to do so today by clicking here.  Anyone with ME or ME/CFS, Long COVID, MCAS, POTS, and hEDS or hypermobility disorders can take the survey — and so can healthy people!

Community-sourced research represents the heart of what we do at #MEAction. We know that your voice matters, your account of your experiences matter, YOU matter. And this isn’t just because being heard feels good: when patients are heard, better research, better treatments, and a better world is the ultimate result. If I had a potion to make the powers that be fund more patient-led research, believe me, I would be brewing it! But together, we have a collective power that outstrips all fantasy: we have a network of tens of thousands — people like you — that make all the difference.

I’ve been a part of this community for a long time, leading medical education campaigns, running studies, speaking at #MillionsMissing events, and advocating for equity at university research centers, on interviews, at the legislative level, and at protests. I am only a wizard because of YOUR power: the power we have when we fight together, to keep pushing for change, to keep the flame lit. 

Will you join me in continuing to create the most powerful community magic of all?

I have some great magic to announce as well as a reminder! 

FIRST: We’ve been granted a wish of a $5k match of anything we raise from tonight until this TUESDAY, November 23rd. If we get the match, dollar for dollar, we will unlock our next step on the path towards the #MillionsMissing Castle. And we will be one step closer to the $50,000 fundraising level challenge, where Adriane Tillman and I will host an “Ask Me Anything” event where you can ask the questions most important to you, whether the subject is press outreach, clinical care, science, interviewing!

So click on that donate button, share this email… whatever you can do to help us reach our goal! 

SECOND: No donation necessary: just tell us what your fantasy character will be on Twitter or Instagram and tag us @MEActnet. You will then be entered to win a “You Are Not Alone” t-shirt! You can post a photo/ design/ or a description of who your fantasy character is and why! Maybe you’re a knight, a goblin, a princess… the sky’s the limit! Contest ends November 21st at 12pm PST. #pwME #GivingTuesday

A long-time advocate Wilhelmina Jenkins already joined the fun on social media: 

Wilhelmina's Tweet

Join in the fun with Wilhelmina? Tag us for a chance to win! Who knows? Maybe more magical merchandise will befall more than one lucky winner!

Join #MEAction staff for an Instagram Live event on Tuesday, November 23rd at 10am PST/1pm EST/6pm GMT. We will discuss where we are on the fundraising map and if we can REVEAL any new fundraising levels that have been achieved! 

We traveled this week through the Research Lagoon and I can’t wait for all of us to navigate to the Press Jungle together as we keep going on our quest. 



Latest News

A laptop sitting on a desk. In the background, you can see a cup and saucer, some post-it notes and a folder. On the screen is the Scottish Government's website, with a large title that says 'Scottish Good Practice Statement on Myalgic Encephalomyelitis / Chronic Fatigue Syndrome (ME-CFS).' A red banner is at the bottom of the photo with white writing which says, '#MEAction Scotland responds to the updated Scottish Good Practice Statement on ME.’ The ME Action Scotland logo is in the top left corner.

#MEAction Scotland responds to the updated Scottish Good Practice Statement

The Scottish Government published the updated Scottish Good Practice Statement (SGPS) on ME-CFS on 28th February 2023.  The decision to update the Scottish Good Practice Statement, originally published in 2010, was a result of the Scottish stakeholder review of the 2021 NICE guideline on ME/CFS, and its recommendations for implementing the guideline in Scotland. The

Read More »

Help keep our work going

We rely on donations from people like you to keep fighting for equality for people with ME.


Get actions alerts and news direct to your inbox

You can choose what you want to be kept up to date on.

Scroll to Top