An ever expanding list of things patients, advocates, allies or anyone else can do to help people with ME:
Doctors
Teach your doctor
Teach your doctor about ME/CFS. Send them ME/CFS Resources for Clinicians.
Report Harmful Doctors
A lot of doctors do not know much about ME/CFS. That is not a reason to report them. However a small minority of doctors will prescribe harmful treatments (such as exercise), or give harmful advice and refuse to reconsider/learn when presented with evidence to the contrary. This is unacceptable and should be reported for the safety of all future ME/CFS patients.
Correct Misdiagnoses
If you were misdiagnosed with something that should have been ME or Long Covid, inform the original doctor once you get a correct diagnosis. Otherwise the doctor will never know they made a mistake, and future patients will likely be misdiagnosed.
Friends and Family
Inform them
Explain to them what ME/CFS is and why it matters.
Fundraising
Where to Donate
My recommendation on “cost-effective” charities:
- Research, ME Research UK (based in UK but funds research around the world)
- Advocacy, MEAction
- Both, your local/national ME organisation (make sure to vet them)
Other Popular Choices
- Open Medicine Foundation
- While they are a solid choice, I think they aren’t very good at sharing research results or publishing negative findings, in fact as of december 2024 they have an average 2 million donation per study published.
Charities to Avoid
- Long COVID Action Project (UK)
- ME Association (UK)
- As of December 2024, their chair Neil Reiley has denied experiences of severe people and recommended harmful “treatments” (See Petition)
If unsure about any organisation, please ask about them in a community with informed users, such as the Science for ME Forum. Some organisations are are harmful or use their funds poorly.
Membership
By paying a small fee to be a member of your chosen organisation, you get some benefits and help fund their efforts.
Fundraising Ideas
- Birthday Fundraiser
Fundraising for Free
- Generate Small donations through online shopping (while not paying any more than you would)
- For the Open Medicine Foundation, sign up here.
- UK Only: For ME Research UK, sign up here
News
Help Correct News Articles
It is rare for news sources to not make mistakes when reporting on ME. If you spot a mistake, contact the news service or journalist and kindly point out their errors. There is a chance they will listen and fix the article.
See Common Mistakes/Inaccuracies
- Does not mention Post-Exertional Malaise although that is the defining and most prominent symptom
- Uses the name “Chronic Fatigue Syndrome” or even “Chronic Fatigue” when the official name is ME/CFS or ME.
- Fails to mention that it is a disabling illness, ie. referring to it as a “fatiguing condition” while listing “common symptoms” like “nausea” without mention that it leads people to be unable to work/bedbound/housebound etc.
- This document from one of the largest ME/CFS organisations guides journalists through the do’s and dont’s of reporting on ME.
Tell your story
Contact your local news source explaing your story and why it would make a good news bit.
Write about ME/CFS
There are plenty of citizen journalism news websites that get a considerable about of traffic. Consider writing for them to advocate ME/LC.
Some Websites
- UK: Bylines Network
Online Knowledge
Improve Wikipedia’s References to ME/CFS
Although the ME/CFS page on wikipedia has improved a lot recently, there exist thousands of other pages referencing ME/CFS which have outdated or incorrect information. You can help by editing these. Alternatively, simply fixing spelling errors and formatting helps too!
Improve and make MEpedia upto date
Me-pedia is a collaborative effort to host our knowledge of ME/CFS and related illnesses online in an accessible format. Think of it like the wikipedia of ME. Anyone can help, and there is always something to do!
Petitions
Long Term Petitions
Places to find Campaigns
- Collection of ME/CFS petitions.
Social Media Accounts that Often Share Petitions
Twitter:
Politics
Contact your Representative
Contact your politician/reprsentative and tell them about your struggles with ME/CFS and what they could do to help (more research funding, better disability benefits, medical education etc.)
Research
Participate in Research
- Sign up to the OMF’s Study ME registry so you are notified when the OMF needs participants for ME studies in your area
- See if there are any Long Covid Studies recruiting near you.
Places that advertise studies looking for Participants
- Science for ME has a collection of active studies looking for participants
- Australian ME Registry
- Your local/national ME/CFS organisation will likely promote studies looking for volunteers; it can be useful to sign up to their newsletters or equivalent
- ME Research UK
Social Media
Help Combat Misinformation and Inform Others
- This Discord Group coordinates fact checking and promoting ME/CFS articles
- This Twitter Account does the same as above
Volunteer
Organisations often looking for Volunteers
- MEAction
- Solve ME/CFS Initiative
- Emerge Australia
- Action for ME
- Your local ME/CFS organisation (make sure to vet them properly first)