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Hi, my name Georgina and I am fundraising to help towards private medical treatment for our beautiful friend Louise Rainbow.
In Feb 24 Louise was diagnosed with Severe ME (Myalgic Encephalomyelitis) potentially linked with long Covid. Although it would appear that she has been living with a milder version of it for several years.
ME / chronic fatigue syndrome is a debilitating neurological disease. It has many symptoms that can change over time and differ from patient to patient.
ME/CFS is a silent killer as it doesn't appear in any medical tests, as a result of this it has been misinterpreted as a mental health condition for a long time, however it has now been recognised as a legitimate neurological condition. Despite this it still faces a lot of stigmatism from both GP practices and also wider society.
Due to this it has been painfully under researched and currently has no treatment, cure or diagnostic test. This means that the sufferers are often left to deal with their condition without medical assistance and on occasion hostility from family and friends.
Louise currently has a number of symptoms including overwhelming fatigue, extreme light & noise sensitivity, cognitive diffulties, unrefreshing sleep and pain in joints and muscles.
At its worst it can be life threatening with many developing digestive issues relying on feeding tubes and can lead to other serious internal issues.
On top of this Louise also suffers from postural tachycardia syndrome (PoTS) which means she is not able to be mobile and get around unaided. As her heart rate increases very quickly after getting up from sitting or lying down. Resulting in dizziness or light-headedness, fainting or almost fainting, heart palpitations, chest pain and shortness of breath.
Due to these issues Louise has had to spend the last 6 months confined to her bed in a dark room, her painful light sensitivity making it impossible for her to have natural light. Her light sensitivity combined with her cognitive difficulties mean she cannot handle using her phone, watching TV, reading, podcasts etc
These are activities that other illnesses can use as coping mechanisms, but not for ME sufferers. Severe ME has been compared to end-stage cancer, AIDS and Parkinsons, with the quality of life being rated lowest due to these factors.
The cognitive issues also mean that she suffers from postural exertional malaise when faced with social interaction in all forms e.g. in person visits, phone calls, texts/whatsapp meaning she's had ties cut off to all of her friends and family.
This lack of distraction makes every minute feel like an hour, every day a year so it feels like she has already been through a lifetime of this suffering. The boredom is unparalleled, the darkness is all consuming, the isolation is terrifying.
If her days sound bad her nights are no better another symptom of ME/ CFS is unrefreshing sleep and nightmares. Although Louise is fortunate to sleep (as insomnia is another potential symptom) her nights are plagued with vivid dreams and nightmares and when she wakes she feels more tired than when she went to sleep in a horrible vicious cycle of fatigue.
Louise's partner Greg is currently having to care for Louise whilst balancing, maintaining the house and working full time.
As there is no treatment available through NHS which is heartbreaking, there are however alternative medicines that may help Louise, which we have been looking into privately.
I have found a doctor, Doctor Charlotte Mendes Da Costa based in London who has over 20 yrs experience in homeopathy and treating people who suffer with ME/ CFS with successful results.
Pls see the link below.
I'm reaching out to all friends, family and co workers to please contribute funds towards this treatment for Louise to help in her recovery.
This is an extremely difficult time and journey Louise and her family are facing.
So we will to do whatever it takes to get her better ❤️
All further funds will go into the ongoing care for Louise to assist with her recovery.
Louise describes this as a living death and feels trapped in her body. She has truly never known suffering like this and also wants to urge anyone who thinks they feel excessive fatigue to seek medical assistance and to listen to their bodies, as she would never want anyone to go through what she is currently enduring.
We hope that you can help support Louise's rainbow shine bright once more
From the International Primer on ME :
“Myalgic Encephalomyelitis (ME): complex, acquired multi-systemic disease Pathophysiology: Profound dysfunction/dysregulation of the neurological control system results in faulty communication and interaction between the central nervous system and major body systems, notably the immune and endocrine systems, dysfunction of cellular energy metabolism and ion transport, and cardiac impairments.
Cardinal symptom: a pathological low threshold of fatigability that is characterized by an inability to produce sufficient energy on demand. There are measurable, objective, adverse responses to normal exertion, resulting in exhaustion, extreme weakness, exacerbation of symptoms, and a prolonged recovery period.”