A young woman, Nevra, who lives with severe myalgic encephalomyelitis (ME/CFS) is issuing an urgent call out for an in-person medically knowledgeable ME ally and advocate. She lives in Pakistan, where hospitals are unable to treat her for her various complex comorbidities.
However, she’s still seeking medical support from clinicians in Karachi where she can for these. Yet currently, she has no-one in the country she can depend on to take her to vital hospital appointments and advocate for the necessary medical care.
Until recently, she was also trapped in an abusive household with a family that has actively denied her chronic illnesses and prevented her from getting the help she needs.
Severe ME/CFS and a constellation of comorbidities in Pakistan
Nevra Liz Ahmed is a 29-year-old woman from Karachi, Pakistan. She has lived with ME/CFS since the age of six, after an unidentified virus caused her to come down with a high fever. Over the years, it has progressively worsened.
ME is a chronic systemic neuroimmune disease which affects nearly every system in the body. It causes a range of symptoms that impact patients’ daily lives. These include influenza-like symptoms, cognitive impairment, multiple forms of pain, and heart, lung, blood pressure, and digestive dysfunctions, among other significantly debilitating symptoms.
Significantly, post-exertional-malaise (PEM) is the hallmark feature of ME, which entails a disproportionate worsening of other symptoms after even minimal physical, social, or mental activities.
At least 25% of people with the ME/CFS live at the severe end of the scale.
In these cases, people living severe ME are mostly, if not entirely permanently bed-bound or hospitalised. On top of this, they are often unable to digest food, communicate, or process information and are fully dependent on others for their care.
This is what Nevra lives with. However, she also has multiple other devastating conditions impacting her daily. These include:
- Postural Tachycardia Syndrome (POTS)
- Hypermobility Spectrum Disorder with Marfanoid features
- Craniocervical instability (CCI)
- Mast Cell Activation Syndrome (MCAS)
- Premenstrual Dysphoric Disorder (PMDD)
- Gastroparesis
- Vulvadynia and polycystic ovaries
- Temporomandibular disorder (TMJ) with an underdeveloped lower jaw
- Irritable Bowel Syndrome (IBS)
- Complex post-traumatic stress disorder (CPTSD)
- Hypertonic pelvic floor
- Scoliosis
- Asthma
- Dyslexia
- Dysgraphia
- Intracranial hypertension
Severe ME/CFS: a life-threatening chronic illness
Severe ME/CFS can be fatal – and many patients with it also live with a number of these comorbidities which seems to increase this risk. Crucially, medical ignorance, gaps in official clinical guidance, psychologising stigma, and a culture of medical professional arrogance has endangered severe ME patients’ lives, as is currently the case with 24-year-old Carla Naoum in West Middlesex Hospital near London.
Nevra too has come up against these walls in the medical system in Pakistan. And like Carla, it threatens her life, since she’s unable to even get tests and treatment that could stabilise, let alone improve her conditions.
She told the Canary that the disease and her comorbid conditions are particularly “poorly understood and treated” in South Asia. There’s been little research into ME in South Asia, but a 2013 study suggested it is hugely underdiagnosed. Obviously, this is over a decade old, but the lack of more recent research implies it’s likely little changed since.
Deteriorating fast
On top of this, she has a number of other suspected conditions she has been unable to get diagnosed to date. Endometriosis is one of these, and it has been causing Nevra intense and agonising pain on a daily basis.
Another suspected condition – Myasthenia Gravis (MG) – a neuromuscular disease that causes muscle weakness is causing intermittent paralysis for hours at a time and is making speech difficult for Nevra. She is experiencing significant breathing difficulties, choking, and problems swallowing, likely due to weakening muscles in her diaphragm.
The severity of her MG symptoms means that she could require hospitalisation to stabilise her breathing.
What’s more, Nevra emphasised that her PMDD is severely impacting her. It causes mood changes, severe anxiety, and other cognitive problems. Of course, the PMDD also exacerbates all her other comorbidities as well. Treatments have so far failed to alleviate it. So now, doctors have advised surgical intervention – including a hysterectomy and removal of her ovaries and fallopian tubes.
Disbelief, denial, and domestic violence
Despite her worsening condition, Nevra can’t rely on her family to get her to the hospital or support her with her health. In fact, it has been quite the opposite. This is because her family actively denies and dismisses her chronic illnesses.
Nevra previously told the World ME Alliance that:
My family doesn’t believe me. My Mum says if I end things, God will punish me more by sending me to hell over and over again. And that is why I’m sick, because God gets angry when I want to give up and makes me worse. My folks won’t help me fundraise either. They claim Allah will send money down from the sky in suitcases and that if I was a true believer I would be patient. I’m terrified that they’re not understanding how fast my ME and PMDD are progressing.
She showed the Canary some of her exchanges with family members. They had trivialised her chronic health conditions and had been overtly gaslighting her. One told her not to mention Covid and said to her:
Liz why are all your major signs never showing in tests and always hiding behind symptoms?
In another, the same family member seemed to imply Nevra was faking her illnesses, stating:
You don’t need to be seriously sick for people to care for you
To make matters worse, another family member has been physically and emotionally abusive since Nevra was young. She detailed how his abuse and manipulative behaviour regularly ramps up after hospital stays. Obviously, this has hindered her recovery after surgeries and worsened her severe ME/CFS.
Her family home was also an unsuitable environment for Nevra due to mould, loud traffic noise and fumes. These caused Nevra to relapse in March after a chest infection.
She is now living in a hotel away from home to escape the domestic violence.
Longer-term goals
As a longer-term goal, Nevra hopes to travel abroad for surgeries she’s unable to get in Pakistan for her various conditions. For instance, she urgently needs surgery for her endometriosis, which has been causing her daily agonising pain and bleeding. However, due to her health worsening – and in particular, intracranial pressure – it’s unsafe for her to travel overseas in anything other than an air ambulance.
Right now then, her most urgent priority is to get well enough to travel. And currently, she needs the local hospital to run a series of particular tests and offer potential treatment. However, due to her severe ME/CFS and comorbidities, Nevra can’t get to, or enter hospital alone.
Moreover, as the Canary has consistently documented, hospital settings are dangerous for people living with severe ME. This is due to the noise, light, and other stimuli that trigger PEM and routinely cause severe ME patients to deteriorate. What’s more, it’s also down to the dismissive, and oftentimes abusive attitudes of medical staff that regularly mistreat and psychologise patients living with the condition.
It’s why she’s issuing an urgent appeal for a medically and ME knowledgeable ally to fly out to Pakistan and support her for a short period.
Calling for an ME knowledgeable advocate
Specifically, Nevra is asking for someone who can stay in Pakistan with her for a minimum of two weeks to progress the tests and treatments she needs next.
She explained that the person would need to:
be my voice, help me pace, and be with me in hospital, especially as I’m going nonverbal. Keep in touch with ally drs internationally and locally and with you guys. Uber me to tests together and hospital. Help me arrange medical files. Make sure the tests that we need on the list are carried out and my comorbid conditions are always highlighted.
Additionally, they would also need to:
read up on my health history, keep all my meds on hand (med list will be provided), check for interactions on my app, and keep referring back to comorbid conditions and make sure the hospital doesn’t do anything without my consent such as psych ward.
Nevra has been tirelessly fundraising for her various medical needs, and her escape from domestic violence. Thanks to the generous mutual aid of allies all over the world, she told the Canary that she could cover flight expenses, and provide a daily stipend for patient advocacy services. Nevra said she would also fund grocery costs for shared meals, transport, and household supplies, as well as provide accommodation, WiFi, and other basic amenities.
Since Nevra is mostly non-verbal right now due to the severity of her interacting conditions, an international team of ME/CFS advocates has rallied round her. Largely, the team comprises caring allies – many chronically ill themselves with ME – who’ve stepped up to support Nevra voluntarily.
Members of the team have said they can provide the advocate with all the information they would need.
Nevra’s advocacy for the ME/CFS community
Nevra herself has been an unwavering advocate for members of the ME/CFS community. While living with her worsening conditions, she has given huge amounts of her time and wellness to fellow patients.
In a letter she penned to an EDS specialist doctor who has championed Nevra’s medical needs, she wrote to him that:
I really do want to live because a lot of patients and friends are counting on me. They are my chosen family. There is a huge lack of help for SEPTAD patients, both financially and because of a knowledge gap. I am advocating for these patients to get help and I do not want to leave it halfway.
SEPTAD refers to ME patients who live with a constellation of particular comorbidities, which include EDS, dysautonomia or POTS, MCAS, gastroparesis, neurosurgical conditions like CCI, among others.
What’s more, Nevra self-taught fluency in multiple languages including English, Turkish, Azeri, Farsi, Urdu, Hindi, Bosnian/Croatian/Serbian, Irish Gaelic, and Greek. She has already used her incredible talent for languages to aid people in the ME community:
She previously translated award-winning documentary Unrest into several languages to help spread awareness of ME. She wants to continue to use her skills like this, and to support other survivors of domestic abuse living with under-researched and abysmally supported chronic health conditions.
Nevra emphasised this in her letter as well:
I have lots of potential as a multilingual translator and patient advocate. I feel like I will have a lot to offer to disabled patients who are also experiencing DV in our community.
Could you or someone you know help Nevra?
She told the Canary that her article on the World ME Alliance website barely scratches the surface. She wants to tell her full story – but is currently too sick to do so. So for now, her priority is to get the help she can to treat some of her debilitating conditions.
She’s afraid that if she doesn’t get this help soon, she could die. Therefore, it’s paramount she finds an advocate who can support her in Pakistan with her next steps as soon as possible.
If you or someone you know might be able to take on this role for Nevra, please contact her via X, or email me at [email protected]. Or if you can donate to support Nevra’s ongoing medical care and safe accommodation, please find her GoFundMe here.
Nevra needs this help – and urgently – so she can not only tell her story, but continue to live it, and flourish.
Featured image supplied
