@M.E_And_more Community Survey
Goal: To establish preliminary data on phenomenon known to the ME/CFS community but currently under- or unresearched.
https://www.meandmore.net/survey
—
SURVEY SECTIONS
1. Consent
2. Demographics
3. Diagnosis
4. Trajectory & Severity
5. Pacing
6. Adrenaline Surges
7. Financial & Environmental
Stressors
8. Mast Cell Comorbidity
9. Mental Health
10. Hormonal Influences
11. Documenting Your Experiences
12. Experimental Treatment
13. Open Questions
14. Sources
All questions besides diagnosis and consent are optional and sections can be skipped completely.
—
WHY PARTICIPATE?
•Participate in patient led research
•Help build data to convince researchers to study prominent community issues
•Data will be analyzed in multiple ways to look for interesting correlations
•Only takes 10-30min, most sections are skippable
•Completely anonymous
•Work is saved in browser for 15 days to allow for pacing
•Can be completed on behalf of a patient if needed
—
ELIGIBIBILITY
Open to patients or caregivers of patients with:
Diagnosed or suspected
- Myalgic Encephalomyelitis
- Long Covid
- ME/ CFS
Survey is open to patients of all severity meeting any diagnostic criteria. Patients will be subgrouped by severity and International Consensus Criteria during analysis.
—
DATA PRIVACY
The survey does not collect your email, name or other identified features. We ask that for your privacy you refrain from including these in your free responses.
Anonymous aggregate results and quotes from free responses that have consented to be shared will be made available at www.meandmore.net/surveyresults after the data is collected. The anonymized data will also be made available to any researchers wishing to use it to prompt further study. If additional permission is given anonymous quotes may be used in social media posts and reports.
—
ANALYSIS
Analysis will be done on the content of the questions, and summary analysis done of the free response questions.
The goal of the analysis is to determine how frequent various phenomenon are within the community as a prompt for further study. The data will be both directly analyzed and analyzed for correlation between different questions for example: do patients who report symptoms of mast cell activation more frequently carry a comorbid diagnosis of fibromyalgia?
—
SURVEY TEAM
@sunnivainnstrand and I, Samantha Lincroft, are working together on this project. The content of the survey was largely influenced by responses from followers of my Instagram account @m.e and more
This project is not affiliated with a research team or university although we encourage those looking to further utilize this data to contact us at
—
ACTION ITEMS
Here's what you can do to help us find out unstudied questions in ME patients:
AL.) Fill out the survey at www.meandmore.net/survey
À2.) Share this post to stories, like, commont or repost it.
À3.) Share this survey with your ME / CFS / Long Covid facebook groups, group chats and friends.
This project is by people with ME for people with ME and we can only succeed with community help and participation.
—
The Myalgic Encephalomyelitis community has so much knowledge and experience to share. Yet the vast majority of this knowledge is completely unstudied.
⠀
I am calling on the ME, CFS, and Long Covid community to help use gather preliminary data on things like Adrenaline Surges Mast Cell Activation Hormonal Influences Experimental Treatments and more that are under-studied or unstudied despite community demand by:
⠀
☆Going to www.meandmore.net/survey and answering as many questions as you can (sections are skippable)
☆Sharing this survey with Facebook groups, group chats, and spoonie friends ♡
☆Sharing, liking, reposting and/or commenting on this post so as many ME patients as possible see this
⠀
Motivations in research matter. This survey is built on lived experience and aims to validate our community's experiences and knowledge.
⠀
This survey doesn't just repeat the same questions about fatigue and symptoms you've answered a million times before. It aims to pinpoint the most important and least studied questions about post-viral illness. I have done everything in my power to minimize your energy use while maximizing available data and ways to analyze it.
⠀
By using the international consensus criteria and screening for PEM/PENE (post-exertional malaise / neuroimmune exhaustion) the survey is open to anyone regardless of formal diagnosis while still ensuring a well-defined sample.
⠀
I truly hope that I have managed to capture a snapshot of our experience in this survey. It is the most ambitious project I have tackled since having severe ME and I absolutely could not have done it without the help of another incredible spoonie @sunnivainnstrand
⠀
The results and data analysis of the survey will be posted here as well as in a comprehensive report for researchers to encourage further study.
⠀
Thank you in advance to everyone who fills and shares this survey. We cannot do it without you.
