I write this piece as a reflection on my decade and a half living with Myalgic Encephalomyelitis. Like many others with this disability I do not believe that the NHS has met its duty of care and has provided inadequate feedback to help manage the condition. I list the breakthroughs that have enabled me to move toward a functioning life again. The onset of my symptoms was gradual but inexorable. This followed 2 years of global travel, a period in which I pushed my constitution to its limit, living in tropical climates with high levels of pollution, and taking numerous vaccines. The symptoms of my invalidity were as follows:
Permanent crushing fatigue – as if weights suspended from my body.
Inflammatory pain, muscular fibromyalgia, joint ache, disabling brain and spine inflammation.
Low back pain,stiff inflexible spine. Neck vertebrae crackled when moved.
Fluctuating tightness in throat and chest, often like a physical block in the neck.
Strong chemical/food/electromagnetic sensitivities. Tinnitus.
Difficulty breathing. Sitting hunched. Hands/feet turned in. Pronated gait.
Fluctuating tachycardia.
Numbness in the face and extremities. Numbed taste and smell. Pins and needles.
Severe ‘brain fog’. Disabled comprehension/situational awareness.
Tooth decay. Six teeth extracted, a further 3 root canals.
Bloating, nausea, diarrhoea and constipation.
Extreme weight loss. Pains radiating from the chest. Persistent ache in the testicle.
Pale jaundiced skin exothermic/emitting heat. Anaemic appearance.
Maladaptive stress response, persistent feeling of panic.
Chronic insomnia – ‘wired but tired’. For two years I hardly slept at all. Sleep unrefreshing.
Waking after two hours with tachycardia, tinnitus, anxiety, nightmares.
Complete loss of feeling below the waist.
I describe a patient crippled by a life-changing disease with symptoms common to Multiple Sclerosis. The reaction from doctors varied. Some refused to take my state seriously, tacitly dismissing my symptoms as minor or imaginary. Many gave advice such as “take vitamin D”. I received an MRI scan, allergy test, STD test, gastroscopy and colonoscopy, revealing nothing unusual. I was given no clue of a cause. The NHS continued to take large amounts of my taxable income whilst doing nothing effective to treat my disease.
For years I struggled to work, crushed with fatigue. I fainted in public and ranted in bus stations. All relationships were put to the test. The most common comment I received was “Have you seen a doctor?”. I moved back to my mother’s, without which option I would have become homeless. She bore the brunt of my anger and frustration. The condition worsened and I became bedridden. 2016 – 2018 I barely remember as a blur of pained confusion. I could not drive, exercise, sleep, comprehend and could barely wash or eat.
It took five years to get the M.E diagnosis. I had not till then understood the political nature of NHS disease definition. M.E is a label for a condition the medical establishment has no interest in. Its application draws a line under further tests thus putting the patient in a limbo of symptoms without a cause. The M.E. ‘clinic’ to which I was referred was not fit for purpose and offered little advice beyond ‘pacing’, although an affiliated physiotherapist was modestly soothing. Based on my recent discoveries I believe that all diagnoses of M.E. are misdiagnoses. To have one’s disease dismissed by a universal healthcare provider is alienating. It leaves the patient believing themselves untreatable when they are in no state to escalate issues or seek legal advice. They are treated with contempt by a body that should
offer them structured recovery based on root cause analysis.
I have recovered significantly by piecing together an independent recovery plan. I followed
advice in two key books:
Dr Jacob Titlebaum’s book From Fatigued to Fantastic. This cites a key cause as
hypothalamic pituitary dysfunction.
Sarah Myhill’s book Diagnosis and Treatment of Chronic Fatigue Syndrome, Myalgic
Encephalitis and Long Covid THIRD EDITION :It’s Mitochondria, not Hypochondria.
This outlines the nature of the disease as mitochondrial, whatever its root cause. Myhill asserts that the medical establishment not only treats M.E. sufferers with disdain, it abuses them. Part 2, the theory part, identifies the disrupted physiological mechanisms that lead to energy deficit. It explains the Krebs cycle of mitochondrial power that (in abstract) turns Adenosine triphosphate (ATP) to Adenosine diphosphate (ADP).
I followed a protocol of supplements.
Building energy :
D-Ribose 5g3 Acetyl L Carnitine 1g2
Kick-start immune system :
Whey protein powder 1 scoop
Boost gut health :
Probiotic capsule containing both lactobacillus acidophilus and bifidobacterium bifidum.
L-glutamine 1g*2
Improve circulation:
gingko biloba
Antioxidant with vitamins A, C, E
Support adrenal function :
Magnesium ascorbate powder form.
Phosphatidyl serine.
Enhance mitochondrial function:
N-Acetyl cystine
Co-enzyme Q10
Fish oil
Milk thistle to help the liver detoxify.
This saw a radical improvement in my condition, bringing me from deaths’ door to a state of tolerable fatigue. Chiropractic sessions were also beneficial. Vertebral subluxation is a contributor to impaired neurological function. I also followed cold therapy and deep breathing to stimulate the vagus nerve. This cranial nerve governs neurological signals down the spine, digestion, heart rate, immune system, motor function and the parasympathetic nervous system.
My greatest breakthrough I alighted on only very recently. Reading further into mitochondrial issues, I found them mentioned in anti-aging protocols and found the subject of metal toxicity to repeatedly arise.
Having long delayed the use of a naturopath, I was fortunate to find one with good insight. Their services, including blood tests and lab work, are expensive. But they are more likely to suggest a root cause because their definition of success is notable improvement in a patient’s clinical picture rather than a normal set of results from nominal blood tests. After an initial trial of a standard thiol elimination diet proved only mildly effective, she was good enough to contact me and spend an hour discussing root
causes including metal toxicity. She suggested a chelation protocol designed by Andy Cutler, an American researcher with a deep understanding of the pernicious effects of mercury on the body’s nervous, immune and endocrine systems.
Sources of mercury poisoning are diverse and cumulative, including modern fertilizers and foodstuffs, in particular tuna fish. The key culprits though are amalgam fillings and vaccine shots, in which it is used as a preservative. Mercury causes depression, torpor, fatigue, anxiety, and affects the endocrine system, thyroid and adrenal glands. It represses cortisol production. Unrefreshing sleep and waking are a product of overstressed adrenal glands, due either to mercury in the glands or in the area of the brain that governs cortisol production. It is also a diuretic meaning further sleep disruption.
NHS doctors always completely dismissed any suggestion I made of adrenal fatigue. Their only test offered was for Addison’s disease – complete adrenal failure. According to NHS logic, the adrenals are the only organ that do not experience deterioration before failing.
My Hairline Mineral Analysis test results showed all indicators as low. But, on uploading the results to an associated forum, the advisors identified this as an ‘all low’ pattern. Mercury retards movement and absorption of essential minerals in the blood, and itself hides in the bones and organs, presenting this artificial picture.
The only course of action was to give ACC a try.
This can only be done if all sources of mercury are removed from the body. The protocol uses mercury chelators – chiefly Alpha Lipoic Acid. If any source of mercury remains it will be bound to the chelator and distributed into the organs. Bitewing X rays are necessary to show the location of all amalgam fillings, including any specks under crowns. These must then be removed in accordance with ‘SMART’ procedure. Any deviation from this will lead to mercury being swallowed or infecting the gums.
Dosing and frequency rules must be followed strictly. ALA has a half life of three hours and will dissipate leaving the mercury to reattach to the nearest receptor. The same dose must be repeated every three hours, including throughout the night to keep the mercury moving towards excretion. This must be maintained for a period of at least 64 hours. Any deviation will move the mercury into essential organs and the brain meaning the patient will become much sicker. The dose can be changed between rounds.
In addition a ‘core four’ of vitamin supplementation, C, E, zinc and magnesium, should
be maintained.
Procrastination and lack of motivation are some of the most pernicious hallmarks of mercury neurotoxicity. So organizing, committing to, and pursuing another stringent course of action was the last thing I wanted to do. I am now into my twentieth round and keenly feeling the benefits. I go on hikes, do
household chores, gardening, martial arts, play music, golf and perform in amateur theatre. I am able to deal with stress and socialise. My sleep has improved and the period of early morning nausea is shorter. It is like a veil is being lifted from my thinking.
It is astonishing to me that with a doctor’s surgery 10 minutes walk away and a hospital round the corner I have been allowed to be so ill for so long. With all the tax I have paid, I have been left to be reliant on a forum in a corner of Facebook. This group continues to do more for me than 15 years of doctors visits and specialist referrals. As far as I can discern I have little legal recourse to compensate me for this lost time. Anger with established ‘medicine’ is difficult to control but ultimately self defeating.
I hope that this account is of some value to those others diagnosed with M.E..
Referenced Sources:
Diagnosis and Treatment of CFS and Myalgic Encephalitis.
Dr Sarah Myhill
This book was first published in 2017.
ISBN (print edition): 978-1-78161-079-4
From Fatigued to Fantastic: A Clinically Proven Program to Regain Vibrant Health and
Overcome Chronic Fatigue and Fibromyalgia
Jacob Teitelbaum
ISBN-13 : 978-1583332894
The Mercury Detoxification Manual: A Guide to Mercury Chelation
Rebcca Rust Lee and Andrew Cutler Hall, PhD, PE
ISBN-13 : 978-0-9676168-4-1
Co-Chairs Note: This article was written by one of our members Dominic and the views here are entirely his own. I felt that the points he was wanting to make were well expressed as written so I did not feel a significant edit was warranted here. An easier to read version is due to appear ( perhaps in 2 parts) in future editions of our newsletter.
I did omit one paragraph, partly for flow and also for a few technical reasons but I do not feel that changes the key points Dominic was wanting to make. Dominic would appreciate feedback and discussion on this article and topics raised. People are welcome to use the comments feature although I will note that I am slow to look at and approve comments. It might be best to share thoughts on this through our Facebook group.
I would also highlight that we do welcome articles for our website from all members. Where warranted they would be edited and we reserve the right not to publish something if we do not feel it would be appropriate. I would like to thank Dominic for writing the article and hope it will inspire others both that improvement is possible and also to write articles for our website or newsletter. I will note I have tried about ten of the supplements mentioned and many of them are among the most commonly recommended supplements both by people with ME/CFS and in more academic sources. Unfortunately those supplements did not show any significant benefits in my case.
Ben
