Severe ME Awareness Day

Remember them!

All those in the ME community, those who are suffering, their families, and advocates, are in Kara Jane’s family’s thoughts and prayers on this Servere ME Awareness day, the 8th of August, 2024.

Myalgic Encephalomyelitis was acknowledged as a physical illness in the 1950s and has been classified as a neurological disease by the WHO since 1969. Regrettably, mistreatment, disbelief, and lack of understanding by the general public and medical professionals still persists today.

If you are a praying person, we believe it’s also important to pray for those mistreating ME sufferers and their families. When they realize the depth of the injustice, they will desperately need our forgiveness, just as those involved in the recent Post Office scandal in the UK, and so on.

We, Kara’s family, firmly believe that it is essential to educate people about the needs of those affected by ME or similar illnesses like fibromyalgia and long Covid.

Recently, there has been an increase in media attention mainly because the ME community and their advocates are frustrated and angry at the lack of action from WHO, Governments, and the some of Medical Establishment.

We express our gratitude to everyone who has contributed to raising awareness about these terrible and debilitating illnesses. Since our last update, it has been an honor to advocate for the ME community on a global scale.

Unitetofight has specifically requested Kara’s music for their inaugural community-driven conference addressing ME/CFS and Long Covid. Additionally, we shared an interview featuring Kara Jane, which was recorded before her passing in 2023.

ME Action continues to exert tremendous effort on our behalf, and we were delighted to visit Kingsmill Hospital to support the Teach ME Treat ME campaign. Furthermore, we are scheduled to meet with our new Member of Parliament, Toby Perkins, with the hope of furthering our advocacy work within local hospitals and the UK Goverment.

Kara’s music continues to support the ME Ascociation  Ramsay Research Fund, where it will be ring fenced with no salaries or admin costs taken out. If you are able and would like to donate please click here or buy here music or merchandice here.

Recently, Kara’s father, David Spencer, has been reflecting on the family’s need to be cautious and wise in keeping Kara safe from doctors and social services professionals who did not believe that ME was a physical ilness. That sounds wrong, but professionals are not always right, are they?

Kara was living in Skelmersdale, a town in the West of Lancashire, as she was completing her master’s degree at Edge Hill University. She had worked really hard with physiotherapists to try to regain strength in her legs after being in a wheelchair since the age of sixteen. This was based on the advice from medical professionals that graded exercise and cognitive therapy would be best for her.

This situation led to a relapse, resulting in Kara’s admission to the hospital for further assistance. Placed in a highly active ward, her heightened sensitivity to noise, light, and smell was exacerbating her condition. Kara’s parents, Jenny and David, at once traveled the 120 miles to be with her. As they arrived, they found Kara in tears, and her friend, a student nurse, who had just voiced a complaint at the nurses’ station about Kara’s treatment.

David, after learning more about Kara’s treatment, went to the nurses’ station to inquire about the possibility of meeting with the consultant in charge of her case. Later that morning, David met with a doctor and a consultant in a small meeting room. David asked for their thoughts on Kara’s condition, ME.

The consultant explained that he believed it would be best for Kara to be admitted to a specialist psychiatric ward, where her pain medication would be removed, and a try to reprogram her mind would be made. Acknowledging that this would bring great suffering, and it would be difficult for the family to see, he emphasized it as the best course of action. He then sought David’s input, who sat quietly, recalling cases of ME patients’ suffering and having seen the documentary “Voices from the Shadows,” and then suggested involving Kara in the decision.

David was aware that they were approaching the crucial consultant interaction with Kara and took great care to avoid saying anything wrong as there was a great risk that the consultant would seek to section Kara. They went on to visit Kara at her bedside.

The consultant explained his plan to Kara and asked for her agreement. In tears, she expressed, “if you think it’s best.” David, sensing that things were taking a turn for the worse, suggested to Kara, “I can see this is very upsetting.” He added, “Why don’t you spend some time with your friend, the student nurse? You can talk with the consultant again tomorrow.” He then looked at the consultant and asked, “Is that ok?” The consultant replied, “Yes, that’s fine,” and left for his next patient.

David knew the consultant’s proposal would harm Kara, later discussed with Kara her wishes and with agreement from her, set out to find the best way to remove her from their care. Kara was taken home by her family the next morning as it was obvious that they did not believe that ME was a physical ilness.

There are many more memories of mistreatment of Kara Jane, including her family being accused of Munchausen by proxy. This is why education, awareness, and research funding are so important.

We strongly recommend that as many people as possible watch the documentary “Voices from the Shadows.” It is still a very powerful film that explains more about what may have happened to Kara if her family did not protect her.

Kara Jane passed away primarily due to the lack of acknowledgment of ME as a legitimate condition. This resulted in incorrect diagnosis, improper treatment, and mistreatment. Only a small number of doctors, nurses and consultants truly listened to Kara and her family.

This is still happening today! Maeve Boothby-O’Neill died in 2021. A mother whose daughter had myalgic encephalomyelitis (ME) said her death was “wholly preventable” and her local hospital failed in its duty of care. Carla is still suffering in hospital at risk of loosing her life. I’m scared my daughter will die in hospital.

There are hundreds of thousands of people suffering from ME in the UK alone. Please join us and let’s educate our friends, families, medical professionals, social workers, and our local MPs. There is more information at The Me Association, ME Action, Unite to Fight, Action for ME, World ME Alliance and a link to a recent document requesting action from our NHS here,

Finally, as many of you already know, we are still hard at work on Kara’s upcoming album, “In Limbo.” We are excited to share that six out of the eight tracks are now completed, and we can’t wait to provide you with further updates. God bless you, Kara Jane’s Family.