Urgent Call to Action: Implementing existing effective ME/CFS Research and Treatment Strategies

 My letter to ME/CFS organizations 

Dear Advocacy Organizations,

There is a palpable disconnect between ME/CFS advocacy organizations' research initiatives and the actual needs of patients. Despite grand declarations, media attention, and calls for increased research funding, a significant gap between political efforts and patient care continues to widen.

Simultaneously, medical professionals often issue prescriptions aimlessly for symptoms, which some insurance policies cover. However, these are frequently not grounded in a deep understanding of ME/CFS, leading to inadequate treatment strategies. Even when referrals to specialists are made, patients face lengthy waits and often receive partial diagnoses that delay effective treatment, exacerbating their conditions and pushing doctors toward burnout.

While certain scientific studies suggest potential causes and effects, the broader medical community fails to pursue these leads adequately, neglecting to order specific tests due to a lack of understanding of the disease’s complexities. This includes failing to consider patients' full medical histories and existing comorbidities.

Patients who trust and follow their diagnoses often continue to take medications without seeing improvement. Those who question their treatments risk being marginalized or psychologically labeled, leaving them to suffer with severe symptoms and no relief in sight.

I pose these critical questions to all organizations and advocates: How long will you continue to endorse funding for research that, while valuable, is not being translated into practical clinical applications?

It is imperative to advocate for comprehensive testing—including blood tests for hormones and minerals, as well as MRI, CT, and genetic tests—to uncover underlying causes. Even if these do not always lead to a cure, they can provide symptom relief and prevent the mismanagement of ME/CFS.

For example, ME/CFS may occasionally stem from a single cause, but it frequently involves a complex interplay of organic and immunodeficiency issues, leading to a cascading effect over time. 

Sometimes I wonder if ME/CFS research findings are intentionally suppressed or ignored, given that even advocacy groups and related organizations often overlook past studies. Instead, they continue to allocate funds—some of which come from their members—towards new research, rather than building on existing knowledge.

Too often, inaccurate diagnoses and prolonged inappropriate treatments have deteriorated patients' health. My own medical history (see example), which includes a range of misdiagnosed conditions from an early age, underscores the dire need for improved diagnostic accuracy and treatment approaches.

I finally saw some improvement in my condition after taking proactive steps to identify appropriate tests and treatments based on my extensive research. Similarly, several of my friends have also experienced significant neglect, only finding relief after persistently seeking thorough examinations and multiple tests.

To wait for research to identify a singular cause or cure for ME/CFS would condemn many to a lifetime of pain and a diminished quality of life. Therefore, I urge you to take immediate action to ensure that research findings are not just published but are also implemented in medical practice to truly make a difference in the lives of those affected by ME/CFS.

Thank you for your attention to this critical matter.

Sincerely,

[SWA]

Example: 

The Emerging Role of Gut Microbiota in Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS): Current Evidence and Potential Therapeutic Applications

ME/CFS can sometimes stem from a singular cause, but it often involves organic and immunodeficiency issues, leading to a consequential physical chain reaction over time. Most patients suffer from worsened conditions due to incorrect diagnoses and prolonged inappropriate treatment.

My medical history is extensive and has often overwhelmed doctors. It began with infections of HHV6 and polio at age 5, which resulted in muscle weakness that was not accurately diagnosed until 2022 by a doctor in the UK. At the age of 8, a doctor in Bavaria identified a potential spinal problem, but no further examination or treatment was ordered. By the age of 11, I had developed psoriasis.

At 29, I was diagnosed with low cortisol at UNI Klinik Erlangen, but no treatment was prescribed, and my persistent colon problem was ignored.
While living in the USA in 1992, I was diagnosed with depression. The more fashionable approach at the time was SSRIs. When none of my long-standing symptoms improved, cognitive behavioral therapy (CBT) was their final solution. My muscle weakness in my legs, upper arms, and skeletal muscles continued to worsen.

The first significant diagnostic breakthrough came in 2008 when an endocrinologist ordered an MRI with contrast after another alarming test result showed a cortisol level of 1.1. The MRI revealed Chiari malformation, stenosis at L4&5, ankylosing spondylitis, and a Tarlov cyst, among other findings.

In 2016, I underwent spinal surgery which led to complications, including the growth of rare bacteria such as Staph epidermidis and Peptostreptococcus in my lumbar spine. Treatment with an eight-week course of Vancomycin and Ciprofloxacin via a PICC line followed, during which I developed cellulitis ("Red Man Syndrome") and further muscle weakness.

Additionally, a deficiency in potassium was discovered, related to my ongoing low cortisol/adrenal insufficiencies.

In 2020, back in Germany, I was hospitalized for severe stomach problems. Despite my requests, a cortisol test was ignored, and due to another misdiagnosis, I was offered an unnecessary sigmoidectomy.
A subsequent CT scan confirmed "Serratus Anterior Palsy bilateral," but again, no treatment or support was provided.

I have also explored my genetic data from 2000 and found evidence of Spinal Muscular Atrophy (SMA), which further complicates my medical history. In January 2021, following COVID-19 infection and BioNTech vaccination, I developed a series of complex conditions including Antiphospholipid Syndrome, von Willebrand Factor II & V deficiencies, and Mast Cell Activation Syndrome, and Lupus, which exacerbated my ongoing issues. Despite my immunodeficiency (Lupus) and previous allergic reactions, doctors continued to prescribe NSAIDs.

In December 2021, I experienced a total health collapse, but I managed to find some relief through self-medication with cortisone and Cetirizine and by consulting with an endocrinologist, strategies I learned from medical seminars. These actions, described in detail on my blog (languages translatable), have helped me regain some functionality.

Is ME CFS Spinal Muscular Atrophy (SMA)?: https://swaresearch.blogspot.com/2024/01/is-me-cfs-spinal-muscular-atrophy.html

When Aldosterone to Renin Ratio (ARR) is elevated: https://swaresearch.blogspot.com/2024/08/when-aldosterone-to-renin-ratio-arr-is.html