UTIs, HIV, Cancer & Me - what's the link?
"Though encumbered everywhere, I am free."
Queen Judith, Vikings
Six years into my “post” viral journey with M.E., I remain periodically dysfunctional, limiting my ability to advocate as strongly as I’d like. Yet, I am steadfast in my commitment to be a voice for the millions missing. And can report, overall, I am improving even if it is at a snail’s pace.
Please check out The ‘Wicked’ Christmas Bake Off with BAKE4ME.
Evolving Management Strategies and Rest
More recently, I have been in touch with Harry Leeming about his Visible app to help with my pacing.
We are in the end all conditioned to push hard like dung beetles! I will let you know how I get on with it!
Pacing has emerged as my most effective strategy, enabling better functionality while acknowledging my limitations. This approach requires careful planning and strict adherence to energy boundaries.
I wrote an article called “Purely Pacing” in August 2020 which is useful as an introduction to pacing, but after I have used Visible, I do intend to write a much better one. Purely Pacing 2.0 hopefully coming soon!
I’ve shared my experiences with some fantastic therapies like HBOT over time, but I have since stopped any interventions requiring travel, largely to accommodate stricter pacing. Since my last article I began Metformin for mild PCOS, which may have modestly improved my energy levels. Introducing Mitochondrial NRG to my supplementing seems to help, though individual results may vary. To be honest, other than pacing, it remains problematic to pinpoint exactly what’s serving me! But the ingredients in Mitrochondrial NRG proved to be a concentrated combination of many I was taking separately at one point.
I write my personal insights not as medical advice, but to encourage Doctors reading this to explore options regarding supplementation which could support the immune system and mitochondria. And please ensure your patient with M.E does not have other illnesses (such as PCOS, POTS and/or an underlying infection) which could be diagnosed and appropriately treated, or at least managed.
Another diagnosis for which I am newly experimenting with medication is ADHD. And I have gone back to trialling LND (low dose naltrexone) again. I’ll talk more about my journey with this in my next article.
This will likely be after my meeting with ARMIN LABS who I intend to use to test for Lyme Disease and any other infection which they advise might be worth me looking into. I will also do my best endeavours to provide a PART 2 regarding my meeting with Professor Jack Lambert PART 1 who I’ll book an appointment with to discuss the results from Armin Labs.
Like so many of us with ME, I am constantly trying to get a better quality of life and adapt, adapt, adapt. Even rest requires adaptation. My “rest” often means lying flat rather than sitting. Standing and/or sitting for too long can be brutal. This is potentially due to oxygen distribution issues to the brain. The ‘why’s’ are being further explored by scientists pioneering in this area of research. I champion Polybio and Decode ME.
Bladder Pain and Restricted Mobility
Chronic bladder issues remain a significant challenge. Weekly urethral injections were as unpleasant as they sound. However, I did not complete the course because recent private testing revealed a chronic bacterial infection missed (likely for many years!) by standard NHS tests. This led to targeted antibiotic treatment.
I am working closely with a UK Laboratory outside of NHS provision called Digital Microbiology who carried out the private testing. And then discussing the results with my GP and Urologist to get the right antibiotics prescribed. I will do my best to provide a more detailed ‘update’ in case it can help others with similar, but I talk a little about my journey with bladder pain in this interview here.
The weekly hospital visits for the iAluRil bladder installations
are a great idea in principle, but I wonder if they are developed against a backdrop of use in recurrent UTI sufferers and help combat the damage being done by an undiagnosed infection? My preference is to identify the infection and get rid of it.
I did not finish the course so I can't comment as to how they made me feel. But the hospital trips certainly illustrated the restrictions of my life with M.E.
On one occasion, inadequate hospital transportation forced me to miss an appointment. Sitting upright for extended periods without elevating my legs is simply not feasible. When I did make it to an appointment, I’d resort to lying across chairs (or on the floor) in waiting rooms...
We all know trying to get a bed at an NHS hospital is like trying to get an Oasis ticket! Jokes aside, I am lucky to get some good days and enjoy getting out and about when I can, but even my better days are a long way from full health.
Hope in Science
The work of Dr. Tim Henrich and the LIINC study has reignited my optimism. Party noises! Here’s a Vikings party pic.
By adapting expertise from HIV research, their team is making strides in understanding the persistence of viral infections in tissues – likely a critical part of the puzzle in M.E., Long Covid, and related conditions. Their use of the Explorer Scanner to “tag and trace” infections deep within the body represents progress.
Watch more here - with Amy Proal (Polybio)
Persistent pathogens often evade detection through standard testing, making such advanced research essential. My own experience with undiagnosed bacterial infections underscores how these hidden culprits can exacerbate symptoms. This research could unlock answers not just for M.E. but for diseases like Alzheimer’s and Cancer.
Misconceptions Changing
M.E. has suffered from a long history of appropriation and dismissal rooted in the false narrative that it is psychological. Treatments like graded exercise therapy (GET), which exacerbated symptoms for many, including me, were once the standard. Thankfully in 2021 NICE guideline revisions removed GET. But implementation remains inconsistent. And there is still no protocol in NHS Hospitals for Severe M.E. Misconceptions are changing, the science is catching up and our NHS need to act now to prevent future deaths.
Maeve Boothby O’Neill’s death due to very severe M.E. highlights systemic failures, calling for urgent action to prevent further tragedies. And Maeve’s story, though heart-wrenching, has shed light on the dehumanizing effects of this illness and the neglect patients face. The mainstream media covered this immensely.
Quality of life comparisons reveal the stark reality of M.E. Often, those with cancer have a better quality of life than those with severe M.E., a sobering observation that underscores the need for medical reform and better funding for research.
Accountability
The PACE trial is 'old news' but it remains a black mark in M.E. research. Its flawed methodology and overstated results perpetuated harmful treatments and stigmas. Calls for accountability, including open letters signed by dozens of scientists, have highlighted the need for transparency and integrity in research.
To think that they used to attempt to treat this disease with ‘graded exercise’ is as barbarous as Judith having her ear sliced off in Vikings.
Investigative journalists like George Monbiot and David Tuller, who I interviewed here, are examples of how good journalism can call for accountability.
Moving forward, it is my absolute prerogative to be constructive, purposeful and responsive only to the new for ME with hope to reduce the level of disability I am experiencing and to prevent ongoing and future death.
Here is a great chat with Professor Chris Ponting, DECODE ME
Progress Through Collaboration
Collaboration across diseases can accelerate progress. Understanding connections between ME, HIV, Cancer and persistent infection, bacterial and viral, could lead to breakthroughs benefiting multiple patient communities.
For example, research into mitochondrial dysfunction, such as abnormal WASF3 protein production, has linked infections like EBV to both M.E. and cancer.
When we are talking about the mitochondrial/metabolic effects (such as an abnormal amount of WASF3 being produced) it’s fundamental to highlight that pathogens almost always target these pathways and genes. Also, the body’s response to infection can impact these changes too.
Scientists at Polybio and Decode M.E. are championing research into the complex interplay of viruses, bacteria, and immune responses. The application of technologies like tissue imaging and genetic testing is gradually unravelling the mysteries of this illness.
A Call for Change
The institutional neglect of M.E. is one of the worst examples of medical and political failure. Yet, the tide is turning. Researchers, advocates, and patients are driving a narrative shift, pushing for accountability, funding, and meaningful progress.
There is a window of opportunity for significant change. And Maeve Boothby O’Neill, though she is not with us in person today, unbolted it and left it ajar for the sun to shine through.
My name is Jennie Jacques, and the millions missing will not be silenced.
We are closer than ever before to answers, but we desperately need to fund the science. If you can, please donate here.
The above is based on conversations with scientists and medical experts across various fields. This is a personal review inclusive of interpretation of dozens of websites that address the concept of pacing and rest for people suffering from chronic complex diseases such as ME and 'post' COVID. I am not a medical doctor and this is not medical advise, diagnosis or treatment.