Myalgic Encephalomyelitis / Chronic Fatigue Syndrome Protests Tuesday

People suffering from chronic pain are increasingly taking “to the streets” to express their frustration with research and treatment.

On Tuesday, thousands protested in 24 cities worldwide demanding support for people suffering with Myalgic Encephalomyelitis / Chronic Fatigue Syndrome to urge public health officials to ramp up funding for research, clinical trials and education.

Myalgic Encephalomyelitis is a Neuroimmune Disease That Impacts as many as 2.5M Americans.

Myalgic Encephalomyelitis (ME), or Chronic Fatigue Syndrome (CFS), is a systemic neuroimmune disease characterized by post-exertional malaise (a severe worsening of symptoms after even minimal exertion). It causes dysregulation of both the immune system and the nervous system. The effects of ME are devastating enough to leave 25% of patients housebound or bedbound and an estimated 75% unable to work.

The global day of action spearheaded by, an international network of patients and allies empowering each other to fight for health equality for Myalgic Encephalomyelitis, also aims to bring attention to the #MillionsMissing around the world who suffer from the disease with little hope for improvement- lacking a clear cause of their disease and path to treatment.

The events will take place in 24 cities around the world, with rallies in 12 cities in the United States and actions in the United Kingdom, Europe, Australia, Canada and South Africa.

The #MillionsMissing movement has emerged as patients are outraged over the continued lack of research funding and the promotion of inappropriate medical education - currently there is no training for ME in medical schools and mainstream medical education still promotes treatments that advocates believe can harm patients.

Earlier this month, 55 members of Congress signed a bipartisan letter to National Institutes of Health Director Francis Collins urging increased funding for biomedical research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS).

The #MillionsMissing day of action comes on the heels of a landmark paper published by Robert Naviaux, a researcher at University of California, San Diego, that suggests ME may cause the body to go into a semi-hibernation state.

“This is about more than just a disease. This has become a social justice issue. There simply must be more research funding and appropriate medical education in order to stop this epidemic,” said Jennifer Brea, co-founder of #MEAction. “For too long, people living with ME have been missing from their lives - from their careers, their family and friends, their daily routines - but that time is over.  We need real investments in research to guarantee that people who suffer from this disease will no longer be relegated to the shadows.  That’s why we are calling on our government to dramatically increase funding into ME research and treatment to help alleviate the millions currently missing from their lives.”


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Authored by: Staff

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Mary Carrazza

No amount of research into ME/CFS or Fibromyalgia will be rewarded with successful understanding of cause or result in a cure or appropriate disease specific medication.
Why? Because ME/CFS & Fibromyalgia are not neuroimmune diseases. It’s not in my head - it’s my Body which is in pain. You’re all looking in the wrong place. Its physiological not neurological. Somebody please help us.

Tim Mason

@ Dave. Join


@Tim Obviously The federal governments hysteria toward Kratom opioids marijuana is immune to science based evidence or reason or moral sensitivity or democratic deliberation. The federal response is best characterized by fascism that results since their typical laissez faire market fundamentalism has failed and they are too reckless to consider the harms of their extremism and too lazy to know or consider alternatives.
Note well how few pain specialist have spoken out about how harmful the governments restrictions will be for people in pain. But i always knew the paon specialists are much more concerned for their own interests and not the interests of people in pain.
Only people in pain can save pain care from the cruel designs of government and the selfisness of the health care industry. Scientists wont save the day for people in pain.

So tired of being tired. I have no meds at the moment and spend 95% of my time in bed. This sounds great though. Here’s hoping that something actually comes of it one day.

Tim Mason

@ Dave. I read a report on Lab Roots today that talked about Kratom. Scientists were unable to cause an addictive response in mice using Kratom. The next step was to use the active alkaloids alone to see if they got an addictive response. They could not. The study actually proved that Kratom to be non addictive.


Have any of you heard of Thalamic Pain Syndrome? Or called Central Pain? Mine is the result of right Thalamic hemorrhage 15 years ago. It took therapy, injections, procedures and a truckload of medications trying to find the right combination of meds that would just get me out of bed with some relief, oh it helps! I can’t believe people who know nothing of our pain are the ones making these decisions
They spend millions. watching a shrimp running on a treadmill for some reason, but can’t even talk to someone like our physicians about the real “us.” I didn’t know anything about NPR doing a petition or I would have been happy to sign it. I haven’t been on here long. Just long enough to wish I knew what to do. They will kill more of us this way than the junkies and addicted. They will manage to get the ones they want. What they are doing to us is like my Neurologist said, like taking insulin from a Type 2 diabetic patient. They don’t take it because they want to, they take it because they have to! We are not addicts, we are hurting. I had to have Scoliosis surgery a few years ago, my pain levels were raising my BP so bad and the surgeon said no matter if you take BP medicine, pain will Still raise BP levels. I don’t know we are going to do, sounds more like Socialiism everyday,,,,,,,,!


Those who know me know i dont give out complements often but MEAction has an excellent web page and excellent ideas on participating and advocating for progress in ME. I even join and made a small donation today.
For those of you who care about pain and suffering and wish to see the lives of people in pain improve- I recommend you consider joining MEAction. And i hope they will joing with the American Kratm Association and marijuana organizations and the rallyagainst pain. United, we have numbers too large to ignore and hope enough to make reforms in our health care system.

Kathleen E Hirte

Would be helpful to gibe s heads+up for Pain Demonstrations.
Its high time to organize against the cut offs that the CDS Or NIH and so on..have maliciously forced on pain patients.
Seems they lost their “studies” on long term, intractable pain patients. Who rarely turn into addicts. And whose lives have virtually stopped even with moderate releif from meds.
Yet mrds are all that those in worst pain fight to stay pn their own.
Pushed into instant withdrawals? Instant cold turkey, docs cant even go slow if too afraid to defend their patients?
I dont like seeing events hitting the media..after the fact.
Its going to be a terrible winter, locked down, in wild, meaest pain..all winter.
Rotten ambivalence- for those who silently suffer Millions of legit pain patients now, are kicked off our little gravel road, yes, recklessly kicked, +left in a dark ditch..


Kudos to those brave souls who are speaking up about m.e. and troubling the sleep of nih.
If they will combine forces with advocates for kratom opioids and marijuana in a fusion movement then there would be additive advantages.
Critical mass is needed to change the moral and mental laziness of big brother.
Vision, moral sensitivity, and motivational intensity are also needed.
With a new administration around the corner we need to change the leadership at nih fda cdc dea. The old guard and old boy network in government will not recognize the needs of people in pain.