“The Fusion model aims to…replenish and strengthen the body so that it can” heal itself. Dr. Downing-Orr
I glommed onto this rather old book (2010) and treatment protocol with interest because it was so different. For one thing, its medical approach is centered on a drug – Nimodipine or Nimotop – I had never heard associated with ME/CFS before.
The fact that it was Dr. Kristina Downing-Orr, the author of “Beating Chronic Fatigue: Your Step-by-Step Guide to Complete Recovery”, recommending this drug seemed even more surprising. A clinical and research psychologist, neurolinguistic programming practitioner and hypnotherapist, I expected her to view ME/CFS in a biopsychosocial light but she didn’t – not at all.
It turns out she wasn’t able to. Not after two viral attacks left her bedridden with ME/CFS, migraines, restless leg syndrome, problems with fainting, food allergies and in severe pain. Dr. Downing-Orr became so weak at one point that she was unable to lift her legs, put on her shoes, or walk a step.
The biopsychosocial paradigm of someone getting ill, paying too much attention to their symptoms, becoming deconditioned and feeling worse didn’t fit her experience at all.
One wonders how many clinical psychologists would recommend their approach to ME/CFS if they’d ever experienced the disease. Dr. Downing-Orr reported that psychologists treating ME/CFS have, in confidence, told her that “the much vaunted psychological treatments were not as effective as patients were led to believe”. That lead her to ask a simple but penetrating question: if psychotherapy and antidepressants do little to help the illness, why do so many doctors assume the disease is psychological?
Yet as Downing-Orr decried the failure of health professionals to recognize the true biological nature of the illness, she, a psychologist, also reported that the psychological factors often accompanying chronic illnesses can also help perpetuate and worsen symptoms. If that sounds like a recipe for a CBT-like intervention, it is.
While the two basic treatment protocols described in the book – a medical one (more drug-based) and a nutritional one (supplement-based) – don’t involve behavioral interventions, the last section of the book describes ways to relieve the enormous mental and emotional stresses that serious illnesses like ME/CFS can produce.
Dr. Mason Brown
Dr. Downing-Orr reported that a treatment protocol program created by a U.K. doctor – which piggybacked on work by Dr. Jay Goldstein and Dr. Byron Hyde – allowed her to completely recover from a severe case of ME/CFS. Her book describes that and another protocol.
Early in her illness, she came upon the work of Dr. Mason Brown, a fellow sufferer in the U.K. Dr. Mason Brown collapsed one day while working as a junior doctor in Edinburgh. He managed to complete his schooling, and worked as a doctor for ten years, until one day in 1979 he was unable to get out of bed. He lay there for six weeks, managed to get back to work, and worked for another ten years, but then retired due to ill health in 1990.
He later reported he believed that a variety of factors including genetics, viruses, pollution, pesticide exposures, poor diet and prolonged stress precipitated his illness.
He recovered using a treatment protocol built on the work of two pioneering ME/CFS physicians – Dr. Jay Goldstein and Dr. Byron Hyde – both of whom believed poor blood flows to the brain play a significant role in this disease.
The cornerstone of Dr. Brown’s protocol was a drug called Nimodipine, which he used to increase blood flows to the brain. Like pyridostigmine bromide (Mestinon), an old drug now being used in a new way in ME/CFS and POTS, Nimodipine has been around for a long time. Patented in the late seventies, it’s been FDA approved in the U.S. for over thirty years.
Downing-Orr reports that Dr. Brown’s success rate (a complete or near complete recovery) was an astounding 80%. Downing-Orr also worked with two nutritionists (Alessandro Ferretti and Jules Cattell) who report a success rate of 85%.
(To be honest, if I was an author I might, in an effort to avoid being accused of selling snake oil, refrain from stating such miraculous success rates – but who knows?)
In her book, Downing-Orr proposes five main causes of ME/CFS – none of which will be a surprise to most of us – and most of which, ten years later, are still being explored.
- Immune issues – a malfunctioning immune system that has failed to fight off a bug properly.
- Bad gut bacteria that leads to candidiasis and poor nutrient absorption.
- Poor circulation – blood flow impairments that fail to give the cells the nutrients they need and fail to flush away toxins
- Adrenal exhaustion – overstressed adrenals that become exhausted over time – (this is a truly controversial idea; others believe that the adrenals are not exhausted but are not getting the signals they need: either way the adrenals are implicated.
- Mitochondrial dysfunction.
Downing-Orr believes – like many others – that a genetic predisposition, in combination with some stressful event or period (infection, childbirth, divorce, serious injury, exposure to the elements, toxins, etc.), causes the body to release a torrent of stress chemicals. These stress chemicals then destabilize one’s systems leading which affects the autonomic nervous system, HPA axis, and limbic, immune and gastrointestinal systems. The key player in this widespread breakdown? The hypothalamus.
A couple of years ago, in a fascinating talk Dr. Lucinda Bateman posited that hypothalamic dysfunction could play a key role in ME/CFS. She proposed that inflammation in the lower part of the brain – the limbic system – was producing a “limbic system encephalitis” which was affecting upper and lower brain (hypothalamus, thalamus, and pituitary) functioning and the autonomic nervous system.
The Medical Option
Dr. Downing-Orr emphasizes that if you take the medical option, you must consult with your doctor and read the entire book to make sure the treatment applies to you. That’s probably a good idea, given that if you employ the medical option, you’re probably going to feel worse before you feel better.
Downing-Orr believes that side effects often seen when taking Nimodipine and other parts of the protocol, like tiredness, achiness, swollen glands and even mood swings – are the natural outcome of a body being kickstarted into action – and releasing the toxins that have been stored in our tissues. Dr. Downing-Orr reported that while some people more or less zoom through it, she experienced severe symptoms at the beginning of the program.
She emphasizes that you should follow it exactly as it is laid out. (Please note that this short synopsis does not replace reading the book. If you decide to do this program, you should get the book.)
Step One: Improving circulation in the body and brain
Making improving circulation the first step in the protocol was intriguing given how much interest has been generated in this area since Downing-Orr’s book was published. She recommends:
- Nimodipine – brain and body circulation
- Gingko biloba – peripheral circulation
- Eight glasses of filtered or bottled water a day
- L-glutamine – digestive tract
- Evening primrose oil – relieves pain.
Nimodipine – the Cornerstone
The cornerstone of Dr. Brown’s and now Dr. Downing-Orr’s approach is an unusual drug called Nimodipine which, as far as I can tell, is little used by ME/CFS experts in the U.S and Canada. A 2nd generation calcium channel blocker that was originally used for stroke, Nimodipine is used to promote blood flows to the brain in order to flush out the neurotoxins he believes have built up.
Nimodipine’s calcium channel blocking properties allow the walls of blood vessels to relax and open, allowing more blood to flow.
Because Nimodipine has a greater effect on the arteries in the brain than in the body it is unlikely to effect blood pressure. Because it may be releasing toxins, however, it may produce early side effects. Susan Parker reported that on day 4 of taking 45 mg/day she experienced “a sudden rush of foul-smelling odour in
my arm pits and felt nauseous.”. The next day, however, she felt much better.
While Nimodipine’s affects have never been assessed in a clinical trial in ME/CFS, Parker reports that in general the drug is considered safe and usually produces few side-effects.
Parker reported that 40% of Dr. Jay Goldstein’s patients improved on the drug, and Goldstein rated it the third most effective drug in his list of the 23 most effective drugs for ME/CFS. Besides Goldstein’s findings she provides many anecdotal results from doctors who have used Nimodipine in her amazingly comprehensive 34 page 2014 report.
- Dr. Jay Goldstein – the top 23 drugs for chronic fatigue syndrome (ME/CFS)
In 2004 Dr. Marilyn McNeil wrote in response to a British Medical Journal article that small doses of Nimodopine allowed her to rapidly recover from a severe 4-year case of ME/CFS which had left her bedbound. Susan Parker reported she was largely housebound before recovering 80% of her health by using the drug. Finish author and ME/CFS patient Maija Haavisto reported Nimodipine markedly improved her brainfog and puts it on her ‘definitely try’ for ME/CFS list.
Not everyone benefits from the drug. Parker reported that Dr. Brown found that “Nimodipine helps twenty percent [of ME/CFS patients] very quickly, another twenty per cent over six months, and all others to varying degrees over a period of time.”
Note that the drug can produce hypotension (lowering of blood pressure) – a possibly serious consequence for some people with ME/CFS – as well as altered heart rates, headaches; sweating, nausea and stomach problems. Dr. Shepard recommended that the drug be used with care and advises that anecdotal reports have been mixed.
- Coming up shortly – Remy takes a close look at Nimodopine
Several different protocols exist. In Downing-Orr’s “slow” protocol the dose begins very low and is raised very slowly. The drug is usually taken only for a month – and four or five months at the most. You’ll know its working when you start thinking better. Once the proper brain blood flows are re-instated, Dr. Brown believes the hypothalamus and HPA axis will begin working properly.
For more on Nimodipine check out Health Rising’s Resource below.
Step Two – Promoting Good Gut Health
Improving gut health involves another slow ramp-up with a probiotic called Prime Directive for 2-3 months which can produce fluey, etc. feelings as the bad bacteria die off. The food prescriptions are a bit dated but familiar:
- avoid refined foods, sugar, honey and syrups, soy sauce, smoked meats and fish, pickles, peanuts, mushrooms, vinegar-containing foods, dried fruits, cheeses. (This appears to be an anti-candida diet.)
- include foods such as fresh vegetables, avocados, seeds, yogurt, organic chicken, fish, olive oil, buttermilk.
Step Three – Detoxification
Many ME/CFS/FM doctors don’t include detoxification in their treatment protocols, but detoxification is a central aspect of Brown’s program. The poor circulation present in ME/CFS keeps them from being flushed out and allows them to accumulate in our tissues.
Detoxification – the process of removing toxins from your tissues and dumping them into your bloodstream – so that they can be flushed out of your system – can obviously be a delicate and tricky process.
For this reason, detoxification is only begun after signs of progress and after the gut health step is proceeding well. An antioxidant called Revenol which contains maritime pine bark is recommended. (Better antioxidants are probably available now). A key aspect of this step is how slowly this step is taken. The first dose of Revenol is just a quarter of a tablet (pill cutter required :))
Milk thistle – a liver function booster is also used.
Step Four – Replenishment
- Multivitamin supplement.
It may be a pretty simple program but it’s not a short-term program. Expect no quick fixes. For every five years of ME/CFS, expect Dr. Downing-Orr says to expect recovery to take a year. If you’ve had it longer than five years, expect it to take two years on this program.
The Nutritional Option
For those who don’t want to take the medical approach, Downing-Orr recommends a nutritional option. That will probably be immediately recognizable to anyone who has explored nutrition, diet and supplements in connection with ME/CFS/FM.
It involves supplements like D-Ribose, acetyl L-carnitine, whey protein powder, probiotics, L Glutamine, magnesium ascorbate, NAC, Rhodiola, Gingko biloba, probiotics, CoQ10, etc.
Despite the fact Downing-Orr firmly comes down on ME/CFS as a biological disease, she does not dismiss CBT/GET as adjunct treatments. If applied appropriately when the underlying biological problems are being addressed and one’s body is on the road to recovery, she believes these therapies can be helpful.
Why? One good reason is that no one is prepared for dealing with the kind of devastation ME/CFS often wreaks on a person’s life. People with ME/CFS, she says, have to “cope with something so extreme that at times it is beyond comprehension.” Given that, it’s no surprise to see negative thinking patterns arise.
She believes that her form of cognitive behavioral therapy (CBT) – which differs markedly from other forms of CBT – can “greatly enhance your sense of control over your health and your life”. She identifies four kinds of faulty thinking that people with chronic illnesses are prone to fall into:
- Black/White thinking – Given the activity limitations this disease often imposes, thoughts like “I am completely useless”, or “I have nothing” to offer my family”, constitute black/white thinking.
- Magnification/Minimisation – magnifying what you can’t do and comparing that to what you used to be able to do is natural, but unhelpful.
- Personalizing – given the horrific changes in our lives that often occur with ME/CFS, it’s not surprising to find “personalizing” – making the illness about us – indulging in “woe is me” conversations, blaming yourself or others, is an easy trap to get into.
- Catastrophizing – Given how poor most treatments for ME/CFS work, it’s no surprise to see that catastrophizing – seeing only gloom and doom ahead – can take hold.
These patterns come from our subconscious and Downing-Orr sets out to rewire that and ward off the negative thinking patterns with mental exercises, visualization and muscle relaxation techniques. She also provides advice on dealing with relationship issues, helping children understand your illness, caregivers support, etc.
It was refreshing to see a psychologist from the United Kingdom renounce a biopsychosocial interpretation of ME/CFS and embrace a biological interpretation. That decision apparently became an agonizingly easy one once Dr. Downing-Orr, herself, came down with a severe case of ME/CFS.
“Beating Chronic Fatigue” is almost ten years old and the dietary and nutritional advice is surely somewhat dated but it did focus on a drug – Nimodipine – which was new to me, and which has the potentially salient affect of increasing blood flows to the brain, and, as we’ll see in Remy’s upcoming blog, providing a variety of other possible benefits.
Dr. Downing Orr recovered from ME/CFS using Nimodipine and other treatments, and Dr Mason Brown, a recovered person with ME/CFS, and the originator of the protocol, claimed a high success rate. If you’ve tried Brown’s or Down-Orr’s protocol or Nimodipine please let us know how it went.
- Next Up – Remy Takes a Deep Dive into Nimodipine (Nimotop)
Support Health Rising
HEALTH RISING IS NOT A 501 (c) 3 NON-PROFIT
Make sure you don’t miss another one by registering for our free ME/CFS and Fibromyalgia blogs here...
Tell us how your coronavirus vaccination went and find out how other people with ME/CFS and/or FM fared with their coronavirus vaccination in Health Rising’s Coronavirus Vaccine Side Effects Poll.