This fall, an international group of people known as Team Nevra has led an ongoing campaign to fundraise and help find care for Nevra Elis, an advocate living with severe myalgic encephalomyelitis (ME).
Nevra, 30, from Karachi, Pakistan, has been living with ME since she was six years old. She became more severe over her childhood and became permanently severe in 2018, worsening this past year due to a variety of circumstances, including a flooding crisis and domestic violence, which the Canary wrote about last year. Team Nevra recently wrote The Sick Times, stating that she has a craniocervical instability (CCI) flare-up and is hoping to get funding for a prolonged hospital stay and stable housing, as well as specialized medical care that she currently cannot access in Pakistan.
Nevra has been a prominent advocate in Pakistan for the disease and other infection-associated illnesses; she educated her community about ME, including translating and screening Jen Brea’s documentary “Unrest.” “She brings people together, introduces friends with similar interests, connects polyglots, and creates safe spaces for fellow spoonies,” Team Nevra wrote.
Her experience highlights the continued challenge of seeking care for these infection-associated diseases in countries with little understanding, education, or acknowledgment, and how support for severe people often falls on other advocates, many of whom are severe themselves.
Team Nevra is composed of many people living with ME, many of whom are severe, and with related diseases. Only one member of the team is able-bodied, which the group said “makes things quite hard as many of us have to step back intermittently due to disease flare-ups.” Team Nevra formed a formal support network in 2024, after Nevra escaped from domestic violence, and includes people from Germany, the Netherlands, the U.K., and the U.S.
The Sick Times conducted an email interview with Nevra herself and members from Team Nevra, including Fran Haddock and Iman Rahman. This interview has been condensed and edited for clarity.
The Sick Times: What caused Nevra’s health to worsen in 2025?
Team Nevra: This year, her health declined even further. In 2025, she underwent her first-ever surgery: a diagnostic laparoscopy and hysteroscopy. For someone born with Ehlers-Danlos Syndrome (EDS), any surgery or anaesthesia is a gamble. Although the procedure itself was successfully completed, the toll it took on her body was devastating. During anaesthesia, her neck was placed in flexion, triggering a major flare of her CCI. Anaesthetic agents themselves also carry additional risks for EDS patients.
Afterward, her baseline collapsed. She began experiencing nonstop fainting episodes, severe autonomic instability, suspected vascular compression, and worsening neurological symptoms. Because she has very severe ME — a condition not recognized at all in Pakistan — she was repeatedly dismissed as “too complex” and denied appropriate treatment. None of the local hospitals follow safe ME protocols, leaving her without care.
Her situation was compounded by environmental harm. The ceiling of the hotel bathroom where she was staying became mold-ridden, and soon the entire premises were affected. She was forced to move hotels repeatedly, pack her belongings, and physically exert herself immediately after surgery, worsening her condition even more.
At the same time, she had to use her extremely limited energy on fundraising to survive and to escape domestic violence — a level of exertion that would be dangerous even for a healthier patient, let alone someone with severe ME and EDS.
In August, due to the severity of her condition, we completely lost contact with Nevra. Only recently were we able to reconnect and understand how drastically her health had deteriorated.
TST: This fall your team produced a short video that explained Nevra’s current medical situation. Are there any updates you would like readers to know about since then?
Team Nevra: Nevra’s skin lesions have started worsening rapidly. It’s now beyond a “whack-a-mole” pattern, and her doctors believe she needs to be hospitalized for two days every week to prevent complications. This is extremely costly but far safer than the emergency room, which has repeatedly harmed her.
She also urgently needs supervised steroid treatment, as steroids could worsen her PMDD [premenstrual dysphoric disorder] and trigger neurological instability if not monitored closely.
In addition, Nevra is now unable to tolerate solid food at all. She often goes 30 hours or more without being able to eat, only managing small amounts of liquid. Even meal-replacement shakes are no longer tolerable. She is significantly weaker than before and increasingly afraid for her life.
These developments make continuous medical supervision and stable funding even more critical than they were when the video was filmed.
She often goes 30 hours or more without being able to eat, only managing small amounts of liquid. Even meal-replacement shakes are no longer tolerable. She is significantly weaker than before and increasingly afraid for her life.
TST: What are Nevra’s main needs and fundraising goals right now?
Team Nevra: Nevra’s main needs right now are medical care, safe housing, and access to specialists. She’s often gone with one or the other, having to choose between housing or medical care, which has played a part in her worsening.
She urgently needs:
- Specialized tests — including critical diagnostics that would determine treatment for her comorbidities, but are not available in Pakistan;
- ongoing mold-free, stable housing;
- local carer for day and night and local infusion nurse;
- appointments with international experts (ME/CFS, EDS, immunologists, allergists, vascular and neurological specialists);
- medications and treatments she must privately source;
- and short hospital admissions for steroids and specialist reviews — because she is now too ill to attend in-person appointments. The only safe way doctors can see her is by admitting her for two days at a time.
She is fundraising to stay safe, stay housed, and access the medical treatment she can not get locally.
TST: In educating people about Nevra’s story, your team has talked about how racism and systemic neglect have dramatically impacted her health — can you explain more how these have shaped her care as a person with severe ME in Pakistan?
Team Nevra: Racism and systemic neglect have shaped every part of Nevra’s medical journey. ME/CFS is not recognised in Pakistan, so she has never had access to specialists, treatment pathways, or basic disability accommodations. Every doctor she sees must be educated from scratch, and her symptoms are often dismissed as “stress” or “psychological,” even when she is paralyzed, unable to eat, or in medical crisis.
Her ethnicity, sect, and heritage place her within groups that have been persecuted for centuries. This makes it unsafe for her to speak up and easy for doctors and institutions to ignore her without legal consequences. As an activist in white spaces, Nevra has repeatedly faced white saviorism. Much of her unpaid work was taken or used without credit, erasing her from the very movements she helped build. Throughout her life, people tried to “save” her while ignoring her voice as a brown woman with her own agency. Instead of support, she was infantilized and exploited.
This pattern continues today, and it has been deeply traumatizing. But Nevra has learned to recognize it now. As a BIPOC individual navigating disability, she understands how much more vulnerable people like her are compared to their white counterparts and how easily their labor, stories, and suffering are exploited or overshadowed.
Internationally, the discrimination continues. Experts in the West often refuse to review her documents or offer guidance, despite the minimal time required. Their silence reflects a broader pattern where disabled people from the Global South — especially brown women — are devalued and deprioritized.
As a survivor of lifelong domestic violence, gendered neglect overlaps with medical racism. Her pain and neurological symptoms are repeatedly dismissed, and her physical decline is ignored.
In short: Nevra is not just medically neglected — she is structurally erased. Her identities make her easier for systems to ignore, even as her life depends on people finally choosing not to look away.
In short: Nevra is not just medically neglected — she is structurally erased. Her identities make her easier for systems to ignore, even as her life depends on people finally choosing not to look away.
TST: How does Nevra’s story reflect wider patterns in which people of color and those living in countries with less access to medical care are left out of global ME and chronic illness media and advocacy?
Nevra’s story reflects a much wider, rarely-discussed reality: ME patients in the Global South live in an entirely different universe of care, visibility, and opportunity. There is almost no awareness of ME here, which means there are no disability benefits, no clinical guidelines, no safe hospital protocols, and no structural support. Patients are left to survive alone.
Even fundraising — often a lifeline for patients in wealthier countries — is not accessible to us. GoFundMe doesn’t operate in the Global South, so we rely on friends in EU countries to set up pages for us. Transferring money home comes with financial xenophobia, documentation hurdles, and automatic suspicion of fraud, even when we continuously verify our identities. Our European and North American peers simply do not face this degree of systemic doubt and gatekeeping. Another factor that makes fundraising hard is the fact that the algorithm favors white faces over brown. This has been quite a harsh realization for us.
And even when we do raise funds, passport privilege becomes another barrier. Many of us are rejected for visas to countries where treatment exists, meaning survival is determined not only by illness severity but by nationality, race, and global mobility.
Locally, disabled people face cultural stigma that can be life-altering. Misinterpretations of religion often frame disability as a punishment or divine test, which normalizes neglect, self-blame, and spiritual “solutions” instead of medical care. Many of us are taken for exorcisms rather than treatment, told we are cursed, or denied the option of seeking care abroad even when it exists.
Nevra’s story is not an isolated tragedy — it is a window into how ME patients of color in the Global South are systematically excluded from research, advocacy, media representation, and life-saving care.
TST: South African writer and advocate Sam Pearce wrote an op-ed for The Sick Times earlier this year about the need for an international emergency task force to help advocate for people with Severe ME around the world, calling on less severe advocates to help.
How can people in the chronic illness community better help people with severe ME and Long COVID around the world who are in similar medical crises as Nevra?
Team Nevra: Sam Pearce was right — people with severe ME urgently need an international emergency response system. Until that exists, the chronic illness community can play a crucial role in closing the gap. The issue is that visibility alone is not enough. People with severe ME are too often treated as props for awareness campaigns while decisions are made without us. We need to be included in policy, infrastructure, and leadership, not just in stories of suffering.
Nevra herself pitched the idea of building a Global South–based organization for chronic illness, one that would work alongside Western groups, expand research beyond wealthy countries, and ensure equity for patients like her. Her proposal was not accepted — and that same year, she deteriorated from moderate to severe ME. It remains one of her greatest dreams.
Here are ways people can meaningfully help patients like Nevra and others globally:
- Use your voice when we cannot use ours. Severe patients often can’t speak, write, or attend online meetings. Advocates with more capacity can amplify our stories, demand policy change, and make us visible so we are not forgotten.
- Share information, fundraisers, and urgent cases. Visibility can mean survival. A retweet, a newsletter mention, a video share — these things change real outcomes when someone is critically ill and isolated.
- Build international mutual aid systems. People in the Global South often can’t access GoFundMe, disability benefits, or home care. Allies can help host fundraisers, assist with banking barriers, and reduce the friction of simply receiving support.
- Help navigate bureaucracy. Visa applications, medical record organization, grant writing, research compilation — these tasks are impossible from bed during a flare, yet they determine whether we access treatment or not.
- Push for equitable research representation. Advocacy shouldn’t center only Western patients. We need African, Asian, South American, and Middle Eastern voices in publications, conferences, and funding discussions.
- Offer skill-based support. Graphic design, media editing, logistics planning, grant writing, translation — these are labor-intensive but can be life-saving contributions.
- Believe us. And don’t look away. The sickest among us are often unseen. When someone becomes too severe to show up online, they disappear from the narrative. The community must actively keep them included.
People with severe ME and Long COVID do not need pity — they need advocacy, infrastructure, and people willing to stand in the gap when we physically cannot.
No one should have to fundraise for emergency survival or fight to prove they’re ill while dying in bed. But until governments and health systems step up, the community can be the difference between someone making it through the next month — or not.
No one should have to fundraise for emergency survival or fight to prove they’re ill while dying in bed. But until governments and health systems step up, the community can be the difference between someone making it through the next month — or not.
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