J

[Bert @Bert_with_ME]

The defenders of this will point to similar artistic expressions coming from other patient communities - just Google "cancer interpretive dance" to see plenty of examples. If other disease communities do stuff like this, why not ME/CFS?

But ME/CFS is not like other diseases. ME/CFS patients have been fighting for over 40 years to convince the world of the simple fact that they are actually sick. For decades the public at large mocked these patients with labels like "yuppie flu" and "raggedy Ann syndrome." Even the medical and government institutions tasked with the protection of the health of the American public belittled these patients behind their backs (eventually made public by the great investigational work by Hillary Johnson in her book, Osler's Web - https://t.co/ybr663MTJF).

The consequences of this stigma extended far beyond humiliation. The vast majority of doctors would proclaim ME/CFS symptoms as psychosomatic and refuse to treat them. Disability insurers would reject their claims on the same basis as many plans explicitly exclude psychosomatic/mental illnesses or limit them to 2-year benefit limits. The CDC would drag its feet for years before establishing a proper surveillance program to estimate ME/CFS prevalence in the U.S., and the NIH would throw crumbs at the feet of researchers pleading for funding to better understand this disease.

All this to say, if you are a researcher, advocate, journalist, etc. speaking about ME/CFS, you are being held to a different standard, one that accounts for decades of abuse and stigmatization. Your messaging needs to be tighter than that of other disease advocacy programs, because this disease still has people waiting on the other side to say "Look! They're outside and dancing! How sick could they be!?"

I don't dare speak for the whole community and certainly respect every patient's personal expression and coping strategies, but it's hard to see SolveME promoting this stuff with how bleak the broader situation often seems. I personally yearn for sober, constructive professionalism to cut through petty infighting, brain retraining nonsense, and pervasive grifting that continues to plague this community in 2026. I hoped that that level of seriousness would come from the largest and oldest ME/CFS patient advocacy organization in existence.

[J @Sp33dtrial5]

@aimee_hirayama @jewstein3000 💯

[J @Sp33dtrial5]

Respectfully, if it takes four follow-up posts to explain what the film doesn’t represent, the film wasn’t communicating the right message in the first place. You chose to make movement the centerpiece of an awareness campaign about a disease whose defining feature is post-exertional malaise.

[J @Sp33dtrial5]

@Lizzardo77 Yeah, what’s their purpose here? The wording feels very strategic—almost disinfo-adjacent.

[Brian Fog @useless_priest]

We’re at a crossroads now, where we can keep placating the ableist onlookers by falsely celebrating what some with ME can do…*

Or we can decide to put the most severe front and centre and find ways to reduce the hour by hour suffering and indignity they deal with.

[J @Sp33dtrial5]

If Paul calls it a watershed moment, it’s bound to be a sewer shed moment.

[Paul Garner @PaulGarnerWoof]

"Recovery is possible" by Sarah Cefai represents a watershed moment in #MEcfs #longcovid. We in medicine have by and large failed these patients. Recovery comes through a self-realisation of agency and then finding help to recover- outside of medicine. The medical establishment and @MEAssociation need to get up to date with the science and what PATIENTS are saying https://t.co/6wLlEChhqF

[J @Sp33dtrial5]

No one is criticizing the participants or saying people with milder ME/CFS shouldn’t have creative outlets. The concern is that an ME advocacy organization chose dance to represent a disease defined by post-exertional malaise. For many patients, especially those with severe ME, standing for a few minutes isn’t possible, let alone dancing. Awareness campaigns should help correct misconceptions, not unintentionally reinforce them.

[J @Sp33dtrial5]

We’re disappointed to see this from an organization that advocates for ME/CFS. This kind of campaign risks reinforcing the very misconceptions we’ve spent years trying to correct. Please don’t lose sight of the hallmark of this disease—post-exertional malaise—or the millions of patients who can’t safely participate in activities like this.

[J @Sp33dtrial5]

@surf4children Have friends who fell ill after single dose of HPV vax —not exclusive to C19.

[Dr. Roger Hugh @DrRogerHugh]

The US Gov (CDC, NIH, IDSA) refuses to recognize "chronic Lyme" because it would:

Flood disability with millions of claims
Destroy Psychiatry & Rheumatology revenue streams
Cripple insurance profits by forcing real treatment
Force them to admit they were wrong (lawsuits?)

[Carole Bruce @CaroleBruce17]

Open letter to The Royal College of Psychiatrists sent by Mark Harper and others on 13 July.
#ME

[Solve ME/CFS Initiative @PlzSolveCFS]

You can read our instructions on how to take action here (Deadline: July 13th): https://t.co/zdeLgXwBKj
4/5

[Christina Koch @CK65375]

We're losing people every single day to devastating complex chronic illnesses—#MEcfs, #LongCovid, #PostVac, #MCAS, and many others.

Luigi was only 24. I don't understand why those in power still don't see the urgency. This is an international health crisis, yet it's being ignored while patients deteriorate, lose their lives, or turn to assisted suicide because effective treatment remains out of reach.

This is a cry for help.

Young people are dying or choosing to end their suffering. We need urgent research, recognition, and medical care—now! Why does no one in charge seem to care?

We cannot keep losing lives in silence!

[Jon Douglas @atranscendedman]

San Francesco Hospital, 20 participants.

Researchers found the first in vivo evidence that Long COVID is linked to loss of cholinergic nerve fibers in the stomach lining.

This structural vagus nerve damage may help explain lasting dysautonomia.

https://t.co/DLSJ1hRh7P

[Ror Preston @RorPreston]

Sick every day with ME/CFS for 3,085 days. How much longer?

[#NotJustFatigue @njfatigue]

West Virginia State Senator Dr. Tom Takubo representing the 17th district argues for funding the ME/CFS Research Roadmap.

https://t.co/LH6Gruwyw5

[J @Sp33dtrial5]

@HarlingMayss @RobWust @ISLCPAIS Never understood this line of thinking

[J @Sp33dtrial5]

@ImmunoFever @Naomi_D_Harvey @NobleRingleader @einfachkaffee Mine ok?

[J @Sp33dtrial5]

@MEResearchUK @TomKindlon We’ve been hearing this same vague garbage for 30 years.