On Sunday 12 May, a conference in London will be exploring some of the most challenging chronic diseases and illnesses that exist. But the philosophy of the organisers, and the aims of the conference, are pioneering in terms of their approach. Central to all this are millions of ‘missing’ people who are chronically ill, and the conference’s timing couldn’t be more apt.
Millions missing?
The Academy of Nutritional Medicine (AONM) was founded in 2005. A collaborative of medical professionals from across the world, it has held regular events since its launch. Its advisory committee is made up of both conventional medical professionals, naturopaths, and researchers.
It’s main focus is on the integration of complementary and conventional medicine to advance a more holistic approach to diseases and illness. The NHS says complimentary medicine is:
treatments that fall outside of mainstream healthcare.
These medicines and treatments range from acupuncture and homeopathy, to aromatherapy, meditation and colonic irrigation.
Central to the AONM are chronic conditions. In particular, the AONM explores those conditions that doctors often misdiagnose as psychiatric. This year’s conference has a particular focus on one of these. It’s a disease that medical professionals and society has for years effectively dismissed as ‘all in people’s heads’. And it’s left millions of people effectively ‘missing’.
It’s ‘all in your head’
Myalgic encephalomyelitis, commonly referred to as ME, is a chronic systemic neuroimmune disease. It affects at least 17 million people worldwide and around 250,000 people in the UK. While symptoms vary for every person, people living with it often experience:
- A worsening of symptoms brought on by physical activities, mental activities, or both. This is called post-exertional malaise (PEM).
- Flu-like symptoms.
- All-over pain.
- Sleep disturbance / problems.
- Cognitive impairments.
- Impairments of the body’s autonomic systems, such as nervous and digestive.
- Hypersensitivity.
It has been fraught with controversy. For decades – and often still to this day – the medical profession has not properly recognised it. People living with ME have been disbelieved, stigmatised, given incorrect treatment, or told it’s ‘all in their heads’.
During the first week of May, the group ME Action Network and charity the ME Association both have campaigns running: #MillionsMissing and #MEAwarenessWeek respectively. 12 May is international awareness day for ME, among other chronic diseases and illnesses. So, this year the AONM has dedicated its conference to the millions of people living with this debilitating disease.
Breaking barriers
As AONM says on its website, this year’s conference:
brings together several inspirational and eminent scientists whose research and work challenges the misconceptions of the status quo, putting patients’ welfare first. Our speakers will explore how current developments in the field of multi-system diseases are changing the prognosis of afflicted individuals and how obtaining an accurate and timely diagnosis can be crucial to a patient’s long-term health outcome.
Among these is Dr Byron Hyde. A leading medical professional in the field of ME, he has dedicated over three decades to researching the disease and working with patients to understand it more.
The new polio?
In layman’s terms, Hyde believes that ME is the new polio – an infectious disease which can be life-threatening, but hasn’t been seen in the UK for decades. Some people may well dispute his views, while others may agree. Seen by The Canary, Hyde will present to the AONM conference on 12 May that:
M.E. and polio are both the result of micro-vascular [small vessel] injuries, (probably autoimmune and inflammatory), which damages essential neurological systems. Both are enteroviral [a gastrointestinal virus] injuries but the essential polio injury is to the vascular system of the brain stem and spinal cord, with a secondary injury to the brain…
M.E. and paralytic polio are in some ways mirror images. M.E. is the result of an injury to specific areas of the vascular system of the brain and cerebellum, and probably also a secondary vascular injury to the spinal cord. Except for location, this is not unlike paralytic polio where there is a vascular injury, primarily to the spinal cord and secondary injury to the brain. In other words, M.E. could be… a form of non-paralytic poliomyelitis…
While this may sound contentious, Hyde’s analysis is backed up by other research. Furthermore, he believes that current NHS treatments for ME are dangerous. As he will tell the conference, in one patient he knew who tried the recommended treatment, it:
not only resulted in a disaster, but she had walked into the hospital and came home in an ambulance and ended up for subsequent years in total bed and house confinement. [It] exacerbated her already severe injury…
This view is shared by countless people, although disputed by proponents of this form of treatment. But the history of this approach to ME has been one of scandal.
PACE trial
Currently, the NHS’ approved treatment is based on the so-called “PACE trial”. As I previously wrote for The Canary, the trial:
was a study into treatment for people living with ME. Its results claim that people living with ME can improve their illnesses, and sometimes recover, by having cognitive behavioural therapy (CBT) and by using graded exercise therapy (GET).
The results of the £5m trial, part-funded by the UK Department for Work and Pensions (DWP), were originally published in the Lancet in 2011. But they have been dismissed by many medical professionals and disabled people alike as damaging and ineffective. US government agencies have either downgraded the reliability of CBT and GET or removed them as recommended treatments altogether.
In the UK, CBT and GET are still the NHS’s approved treatments under guidelines from the National Institute for Health and Care Excellence (NICE). NICE is undertaking a review of this.
Essentially, part of PACE trial’s approach is talking therapy. It has helped compound the notion that ME is ‘all in people’s heads’. But along with Hyde, another doctor speaking at the AONM conference is challenging the trial, its results, and its implications.
Medical abuse?
Dr Sarah Myhill is a practising doctor, author, and campaigner. She has been a consistent advocate for people living with ME. She has written several books and is a seasoned speaker on the disease. Seen by The Canary, in her presentation to the AONM conference, she will argue that PACE trial has:
- “Effectively determined ME as a psychological condition. As a result, patients who suffer what is in fact a serious and debilitating physical condition, have been subject to therapies which at best are ineffective and at worse exacerbate the condition”.
- “Reinforced the perception that… ME is psychological… patients have been refused financial benefits for disability. Often this has been on the basis that they refuse to engage in CBT or GET”.
- Led to “resources to explore biomedical physical therapies for… ME [being] diverted to what we know to be useless and often harmful psychological treatments”.
Myhill’s approach to ME is different. She believes in a complex, multifaceted approach. This involves among other things changing diet, building the body’s natural defences through high doses of vitamins and minerals, and then, in many cases, treatment with antiviral drugs. Like AONM, her approach is a mixture of complimentary and conventional.
She has launched a campaign called Medical Abuse in ME Sufferers, or #MAIMES. It’s calling for a public inquiry into the effects of PACE trial. So far, 38 MPs have backed it.
Patient centred
Both Hyde and Myhill sum up AONM’s approach to chronic disease and illness. They put patients first. Both think outside the current realms of conventional medicine, believing that it fails chronically ill people. As director of the AONM Peter Avakian told The Canary:
The Academy’s main areas of focus are the underlying drivers of chronic complex conditions, and has been instrumental introducing an understanding of the bacterial and viral causes… We act as a force for the integration of complementary and conventional medicine, and increasing numbers of NHS doctors attend our conferences, use our tests and involve us in their teams on occasion in complex cases.
We live in a world where, as one NHS doctor told me, chronic illness is “the new heart attacks and strokes”. That is, there is an epidemic on our doorstep, and so far we are doing little to prevent it. Our environment is becoming increasingly toxic through pollution, mass agriculture, and human expansion. Also, soil degradation and, again, mass agriculture are wreaking havoc on our diets. So, it would make sense that the mixing of complimentary and conventional medicine is the way forward for 21st century. AONM is at the forefront of this.
But moreover, for people living with ME and other chronic diseases and illnesses, conventional medicine is often failing them. So AONM putting them at the fore offers a glimmer of hope for millions of missing people.
Featured image via AONM
